This weekly protocol of Taxol will be easier to handle I think. During infusion I did not have any reactions but of course the good people at the Grand River Regional Cancer Centre know of my spotty past with chemo reactions and had matters well in hand. I received a variety of pre meds to ensure nothing would interfere with the chemo. As usual I mostly slept through it and was released to go home within 3 hours. This is quick for me.
After chemo I experienced minimal side effects ie. nausea, vomiting, etc. There was some headache the day after but nothing I can't handle with some medication. Let's just hope this weekly Taxol does the job it is supposed to!
I am still dealing with the ascites which is really dragging me down. The fluid in the abdominal is very uncomfortable making it hard for me to walk or stand. I spend most of my time sitting down to ease the pressure off my back. This does not help with the fact that I plan to be living in my bathing suit in a few weeks in Mexico.
The good new is that I have an appointment for a paracentesis tomorrow and it cannot come soon enough.
UPDATE: Today the imaging department called and asked if they could move my appointment up to 3:00 pm. I said most certainly and thanked them profusely. Appointment went well and they removed 5 litres of fluid. That's 10 pounds thank you very much........ I am feeling quite tender in the belly and trust it will heal and tighten up very soon. Maybe not Kim Kardasian tight but hopefully will not remain like a pillow or something. yuck.....
Monday, November 24, 2014
Thursday, November 20, 2014
The November 7th scan is showing stable disease which means the visible disease has not changed significantly since the September 29th scan. This is good news. The only problem at this point is the development of ascites. As usual this fluid accumulated very rapidly. I know my clothes started to feel tight on November 7th and by the November 17th appointment at Princess Margaret I could not wear my regular clothes. Elastic waist bands are the fashion of the day.
At the meeting on November 17th we discussed the CT Scan results which were favourable but we needed to deal with the ascites and talk about start of trial. Starting the trial right away would help with the ascites but would interfere with our holiday in December. Once I start the trial I have to adhere to the protocols and appointments which means frequent travel to Toronto. If we just treat the ascites then I can wait until the new year to begin trial and focus on that. I chose to wait to start the trial and my best option right now is to start weekly chemo of Taxol for 3 weeks. The usual protocol is one infusion every 3 weeks so I will be getting a third of the infusion every week for 3 weeks. You get the picture. This is a stop gap measure and I should hopefully experience minimal side effects. The best part is I can have this done at Grand River Cancer Centre and I do not need to travel to Toronto until the new year.
I met with my oncologist at Grand River on the 19th (appointment previously booked) and we discussed the more immediate treatment plan. She is in agreement and started the ball rolling to get the chemo scheduled this week. We discussed potential issues such as low blood counts and maybe some hair loss. We will deal with issues as they come up. She also wants to schedule a paracentesis. A paracentesis will be a relief I can tell you! I look about 7 months pregnant and it is not very comfortable. Walking any distance is physically taxing.
So far my chemo is scheduled for this Friday on the 21st. Still waiting to hear about the paracentesis. Hoping it might be today!
We are getting dumped on with snow and it is cold.........
At the meeting on November 17th we discussed the CT Scan results which were favourable but we needed to deal with the ascites and talk about start of trial. Starting the trial right away would help with the ascites but would interfere with our holiday in December. Once I start the trial I have to adhere to the protocols and appointments which means frequent travel to Toronto. If we just treat the ascites then I can wait until the new year to begin trial and focus on that. I chose to wait to start the trial and my best option right now is to start weekly chemo of Taxol for 3 weeks. The usual protocol is one infusion every 3 weeks so I will be getting a third of the infusion every week for 3 weeks. You get the picture. This is a stop gap measure and I should hopefully experience minimal side effects. The best part is I can have this done at Grand River Cancer Centre and I do not need to travel to Toronto until the new year.
I met with my oncologist at Grand River on the 19th (appointment previously booked) and we discussed the more immediate treatment plan. She is in agreement and started the ball rolling to get the chemo scheduled this week. We discussed potential issues such as low blood counts and maybe some hair loss. We will deal with issues as they come up. She also wants to schedule a paracentesis. A paracentesis will be a relief I can tell you! I look about 7 months pregnant and it is not very comfortable. Walking any distance is physically taxing.
So far my chemo is scheduled for this Friday on the 21st. Still waiting to hear about the paracentesis. Hoping it might be today!
We are getting dumped on with snow and it is cold.........
Tuesday, October 21, 2014
I am bummed out. I cannot go into the SOLO2 clinical trial. After completing 6 rounds of Cisplatin and several trips to Princess Margaret Cancer Centre to provide blood samples and a CT Scan the researchers have told me I cannot proceed. My CA 125 numbers have been trending up since the 4 th infusion of Cislplatin which means the cancer is active. The trial specifically requires the CA 125 be below 35 and stable. Mine is not..... They are now considering me to be Platinum Resistant.
The good news is they have another trial for me. First off, they have recommended more chemo treatement using the drug Gemcitabine pending the results from another CT Scan which is scheduled for November 7th. If the scan shows an increase in size of cancer from the September 29th scan then chemo is probably on the table. If the scan shows little difference then we can probably wait a bit longer and rescan in another month or 2. I am hoping for a bit of a reprieve from chemo. I need the time to get more healthy and strong. I feel like a rag doll.
In addtion to the chemo they have given me information regarding a new trial that combines Gemcitabine chemo treatment with another drug which is taken orally. The trial is called 'A Randomized Placebo-Controlled Phase II trial Compaing Gemcitabine Monotherapy to Gemcitabine in Combination with AZD1775 in Women with Recurrent, Platinum Resistant Epithelial Ovarian, Primary Peritoneal or Fallopian Tube Cancers.' Quite the mouthful!
So this is where I am. It is the usual wait and see.
The good news is they have another trial for me. First off, they have recommended more chemo treatement using the drug Gemcitabine pending the results from another CT Scan which is scheduled for November 7th. If the scan shows an increase in size of cancer from the September 29th scan then chemo is probably on the table. If the scan shows little difference then we can probably wait a bit longer and rescan in another month or 2. I am hoping for a bit of a reprieve from chemo. I need the time to get more healthy and strong. I feel like a rag doll.
In addtion to the chemo they have given me information regarding a new trial that combines Gemcitabine chemo treatment with another drug which is taken orally. The trial is called 'A Randomized Placebo-Controlled Phase II trial Compaing Gemcitabine Monotherapy to Gemcitabine in Combination with AZD1775 in Women with Recurrent, Platinum Resistant Epithelial Ovarian, Primary Peritoneal or Fallopian Tube Cancers.' Quite the mouthful!
So this is where I am. It is the usual wait and see.
Wednesday, September 17, 2014
Ovarian Cancer Walk of Hope
Sunday, September 7th 2014 was a glorious day with lots of sunshine and wonderful fellowship. Our team 'A Late Summer Knight's Dream' raised almost $4500 and we were the second highest fund raisers in the area! Next year we are going to do better!
Update: I wanted to share this newspaper article about our Walk. It was a surprise to me when they asked for an interview. I am pleased with the final result.
http://www.kitchenerpost.ca/whats-on/walking-for-hope/
Update: I wanted to share this newspaper article about our Walk. It was a surprise to me when they asked for an interview. I am pleased with the final result.
http://www.kitchenerpost.ca/whats-on/walking-for-hope/
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| Survivor's Ribbon |
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| Most of my crew |
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| Angie and Joanna |
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| Angie, Me and Joanna |
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| Caroline and Me |
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| Elaine, Caroline, Katrina and Me |
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| Joanna, Katrina, Elaine and Caroline |
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| Margery, Marilyn, Mom and David |
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| My Teal Toes! |
Wednesday, August 27, 2014
Solo2 Clinical Trial
Princess Margaret Cancer Centre is a busy place. I had to wait an hour to get my bloodwork done and then found out I was in the wrong place. I have a port-a-cath and should have gone to Ambulatory Care for blood work. Next time.
My appointment was for 10:30 but did not see doctor until 12:30 pm. They are quite busy seeing the multitudes. We left Princess Margaret at 2:30 pm. We were there a full 5 and 1/2 hours. I hope you never have to see an oncologist or the inside of a cancer centre. Chances are you will because as people live longer their cells go haywire and cancer develops.
This was considered a first meeting and after discussing my medical situation the doctor seemed to think that I may be a suitable candidate for the Solo2 clinical trial. This was not before he had to leave several times to confer with various researchers. Seems most of my ducks are getting in order: recurrent ovarian cancer, favourable response to a platinum drug (Cisplatin), BRCA2 carrier (they need to still see my genetic report from 2011), and CT Scans show some visible evidence of disease (they will have to verify this more).
They also decided I should finish up with my chemo treatments. Usually a course of chemo is 6 infusions. I have 2 more to go. The study requires patients to begin the trial within 8 weeks of chemo ending. Therefore, my last chemo should be the week of September 22nd and if accepted into trial I would begin no later than week of November 17th. That is according to my calculations.
The drug they are testing is Olaparib. As I stated in a previous post it is a drug that inhibits a cancer cell from repairing itself. It is considered a maintenance drug which keeps the cancer from growing so that it lengthens the period of 'remission'. That is what we are always trying to achieve although technically I have not been in remission since 2011.
Solo2 is a phase III trial and they are recruiting 264 people all over the world. Because the researchers have not yet decided whether I qualify they wanted me to get registered in case the study closes between now and November. If the study closes then I can still participate. Of course they still have to definitively accept me into the study and I have to consent. I was given a 23 page Study Information and Consent Form to read. It is quite extensive in introducing the study, its purpose, a thorough explanation regarding its experimental status, charts explaining how often I need to visit hospital for tests and follow ups, all the potential side effects, my responsibilities as a participant, confidentiality, risks, etc. I can drop out of study at any time.
On the one hand I hope to be accepted into this trial. It is cutting edge science and could help me to attain some degree of remission. Cost is picked up by drug company (AstraZeneca). This study, if successful, could provide oncologists with another tool for maintenance treatment in future ovarian cancer cases. On the other hand it is experimental. Long term side effects are unknown. Side effects while on drug could be unpleasant but maybe not. At least with chemo my experience is a week of unpleasantness and a couple of weeks of normalcy of sorts. And I could end up in the placebo group and get no benefit at all. I still have several questions I want to ask of my assigned trial nurse and I have some time to fully consider this trial.
My appointment was for 10:30 but did not see doctor until 12:30 pm. They are quite busy seeing the multitudes. We left Princess Margaret at 2:30 pm. We were there a full 5 and 1/2 hours. I hope you never have to see an oncologist or the inside of a cancer centre. Chances are you will because as people live longer their cells go haywire and cancer develops.
This was considered a first meeting and after discussing my medical situation the doctor seemed to think that I may be a suitable candidate for the Solo2 clinical trial. This was not before he had to leave several times to confer with various researchers. Seems most of my ducks are getting in order: recurrent ovarian cancer, favourable response to a platinum drug (Cisplatin), BRCA2 carrier (they need to still see my genetic report from 2011), and CT Scans show some visible evidence of disease (they will have to verify this more).
They also decided I should finish up with my chemo treatments. Usually a course of chemo is 6 infusions. I have 2 more to go. The study requires patients to begin the trial within 8 weeks of chemo ending. Therefore, my last chemo should be the week of September 22nd and if accepted into trial I would begin no later than week of November 17th. That is according to my calculations.
The drug they are testing is Olaparib. As I stated in a previous post it is a drug that inhibits a cancer cell from repairing itself. It is considered a maintenance drug which keeps the cancer from growing so that it lengthens the period of 'remission'. That is what we are always trying to achieve although technically I have not been in remission since 2011.
Solo2 is a phase III trial and they are recruiting 264 people all over the world. Because the researchers have not yet decided whether I qualify they wanted me to get registered in case the study closes between now and November. If the study closes then I can still participate. Of course they still have to definitively accept me into the study and I have to consent. I was given a 23 page Study Information and Consent Form to read. It is quite extensive in introducing the study, its purpose, a thorough explanation regarding its experimental status, charts explaining how often I need to visit hospital for tests and follow ups, all the potential side effects, my responsibilities as a participant, confidentiality, risks, etc. I can drop out of study at any time.
On the one hand I hope to be accepted into this trial. It is cutting edge science and could help me to attain some degree of remission. Cost is picked up by drug company (AstraZeneca). This study, if successful, could provide oncologists with another tool for maintenance treatment in future ovarian cancer cases. On the other hand it is experimental. Long term side effects are unknown. Side effects while on drug could be unpleasant but maybe not. At least with chemo my experience is a week of unpleasantness and a couple of weeks of normalcy of sorts. And I could end up in the placebo group and get no benefit at all. I still have several questions I want to ask of my assigned trial nurse and I have some time to fully consider this trial.
Friday, August 15, 2014
4th Treatment of Cisplatin
Yesterday I had the 4th and perhaps the last infusion of Cisplatin. My oncologist received correspondence from Princess Margaret in reply to her inquiry regarding my good results from Cisplatin. My CA 125 numbers have been steadily decreasing from a high of 597 in May to 60 on August 11th! Very good response which means I am platinum sensitive! Also, my CT Scan is showing shrinkage in my tumours which is also good.
Princess Margaret would like to speak to me regarding the Solo2 Clinical Trial. This trial is for women with recurrent disease and with a BRCA1 or BRCA2 mutation. Just waiting to hear for an appointment. I am quite happy to hear about this but also full of questions. It is a double blind study so I may end up in the group without actual medication just the placebo.
Next few days will be quiet while I relax with my side effects. Right now I am still wired from the medications but I know I will be crashing later today and dealing with some nausea. Good thing I have some great meds for that!
Update: Appointment for Princess Margaret is August 25th. That was quick!
Princess Margaret would like to speak to me regarding the Solo2 Clinical Trial. This trial is for women with recurrent disease and with a BRCA1 or BRCA2 mutation. Just waiting to hear for an appointment. I am quite happy to hear about this but also full of questions. It is a double blind study so I may end up in the group without actual medication just the placebo.
Next few days will be quiet while I relax with my side effects. Right now I am still wired from the medications but I know I will be crashing later today and dealing with some nausea. Good thing I have some great meds for that!
Update: Appointment for Princess Margaret is August 25th. That was quick!
Saturday, July 26, 2014
3rd Treatment of Cisplatin
Just before my last treatment on July 22nd I met with the oncologist as we always do. My CA 125 is now 150! As you will recall this number was 597 back in May. This is wonderful! Cisplatin is doing the job of knocking down the cancer and we will go the full 6 rounds. I should be finished up by end of September.
Treatment of Cisplatin is not easy as I have talked about in the the past. I am admitted to hospital for a couple of days in order to get pre medications into me for 24 hours before we start chemo. This is to prepare my body to accept (fool) the chemo otherwise I react severely and this is dangerous. I have been on this hyper sensitivity protocol for all 3 infusions. I must comment that the medical personnel that take care of me while in hospital are fabulous. They know me and know my situation. I am under constant care and during my 6 hour infusion of chemo they are close by in case I react.
It is now the 4th day after chemo with Cisplatin. My constant headache has finally left me and I feel somewhat normal this morning. The nausea has decreased considerably and I can manage to eat a regular meal. Cisplatin has been the hardest chemo to deal with so far. It may also be because of the pre meds as well. I am very lucky to bounce back fairly quickly after my chemo treatments. The tiredness and fatigue is very real but I am able to pace myself throughout the day with small rest periods so that I am not completely non functional. Good nutrition and mild exercise is very helpful.
Treatment of Cisplatin is not easy as I have talked about in the the past. I am admitted to hospital for a couple of days in order to get pre medications into me for 24 hours before we start chemo. This is to prepare my body to accept (fool) the chemo otherwise I react severely and this is dangerous. I have been on this hyper sensitivity protocol for all 3 infusions. I must comment that the medical personnel that take care of me while in hospital are fabulous. They know me and know my situation. I am under constant care and during my 6 hour infusion of chemo they are close by in case I react.
It is now the 4th day after chemo with Cisplatin. My constant headache has finally left me and I feel somewhat normal this morning. The nausea has decreased considerably and I can manage to eat a regular meal. Cisplatin has been the hardest chemo to deal with so far. It may also be because of the pre meds as well. I am very lucky to bounce back fairly quickly after my chemo treatments. The tiredness and fatigue is very real but I am able to pace myself throughout the day with small rest periods so that I am not completely non functional. Good nutrition and mild exercise is very helpful.
Barcelona, Spain
The last leg of our trip was to Barcelona. Even though the strike action was still ongoing in France our train from Avignon to Barcelona was not cancelled. The high speed train ride was great when you actually get to sit down!
We spent 8 days in Barcelona and it was unforgettable.
We spent 8 days in Barcelona and it was unforgettable.
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| Cafe time with friends |
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| Frank Gehry Whale Structure on Beach |
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| One of the many beaches in Barcelona |
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| Interior of Palau de Musica - Magnificient |
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| Parc Guell |
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| Exterior of Sagrada Familia |
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| Sitges - an hour south of Barcelona |
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| Portion of ceiling of Sagrada Familia |
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| Palau de Musica in Barcelona |
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| Parc Guell |
Thursday, July 17, 2014
Avignon in Provence France
After Paris we traveled to Avignon via high speed train. During our stay in Paris we were concerned with our upcoming trip to Avignon due to strike action. This is common in France but the work stoppages all over France were the worst in Paris and it has been years since it was this disruptive. We found out the night before our trip that our train had been cancelled. So we scrambled to arrange a car rental from the airport so that we could drive the 7 hours to Avignon.
As we arrived at the airport we discovered there was one train that afternoon to Avignon and we were determined to be on it. It meant no seats though. Others were in the same boat as us and we all crowded on to the train. We were lucky to happen on to the dining car so we had some room to walk about and occasionally sit on our luggage. That 3 1/2 hours trip felt much longer but we were glad to be on our way.
Avignon is a great base to travel around Provence. We rented a van and for 3 days explored the many small towns in the area.
As we arrived at the airport we discovered there was one train that afternoon to Avignon and we were determined to be on it. It meant no seats though. Others were in the same boat as us and we all crowded on to the train. We were lucky to happen on to the dining car so we had some room to walk about and occasionally sit on our luggage. That 3 1/2 hours trip felt much longer but we were glad to be on our way.
Avignon is a great base to travel around Provence. We rented a van and for 3 days explored the many small towns in the area.
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| Avignon Bridge on the Rhone River |
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| Pont du Gard - A Roman aquaduct |
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| Papal Palace in Avignon |
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| Roman Theatre in Orange |
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| Seguret |
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| View from Le Crestet |
So Much to tell you.....
I know, I know, I have been really bad at keeping this blog up to date! Well I have been living life and sometimes I just don't feel like writing! :)
Since the last post I have had 2 chemo treatments and have been to Europe. It has been a whirlwind of activity and now things are very quiet.
Just before leaving for France I was admitted to hospital on June 2nd for chemo. I was given Cisplatin for at least 6 hours and prior to this I had 24 hours of pre treatment which consists of steroids, benedry, and cingulaire. Because of my tendency of reacting to platinum drugs I need to be medicated to the hilt to receive chemo. All went well and I had no reaction! Thank goodness! On June 4th I was released from hospital and went home to get ready for our June 6th flight to Paris! Let me tell you my health was not the best. After chemo I get some wicked headaches due to all the drugs and I generally feel poorly.
On June 6th we left for Paris and the flight was not comfortable at all for me. After paracentesis the belly is tender and I still had some bloating which is uncomfortable. My bowels are not at their best (to say the least) and I just was not feeling well. However, we march on and try not to think about these things while on vacation! We are in Paris! And what a great city it is!
We met up with our friends, Jill and Michael. We spent the rest of the week together in Paris and then moved on to Avignon in the south of France.
Since the last post I have had 2 chemo treatments and have been to Europe. It has been a whirlwind of activity and now things are very quiet.
Just before leaving for France I was admitted to hospital on June 2nd for chemo. I was given Cisplatin for at least 6 hours and prior to this I had 24 hours of pre treatment which consists of steroids, benedry, and cingulaire. Because of my tendency of reacting to platinum drugs I need to be medicated to the hilt to receive chemo. All went well and I had no reaction! Thank goodness! On June 4th I was released from hospital and went home to get ready for our June 6th flight to Paris! Let me tell you my health was not the best. After chemo I get some wicked headaches due to all the drugs and I generally feel poorly.
On June 6th we left for Paris and the flight was not comfortable at all for me. After paracentesis the belly is tender and I still had some bloating which is uncomfortable. My bowels are not at their best (to say the least) and I just was not feeling well. However, we march on and try not to think about these things while on vacation! We are in Paris! And what a great city it is!
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| The Iconic Eiffel Tower |
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| From Arc de Triomphe |
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| Arc de Triomphe |
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| Notre Dame |
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| Family members in Paris. My Mom's Aunt and her family. |
We met up with our friends, Jill and Michael. We spent the rest of the week together in Paris and then moved on to Avignon in the south of France.
Friday, May 30, 2014
Don't Rain on my Parade.....
Things are happening again...........I was right as rain up until a couple of weeks ago. It began with the bowels. Why does it have to involve bowels?
So while attempting to inspire regularity I noticed my abdomen getting a bit bigger. This was alarmingly noted when I tried on a straight skirt which I had made about a month ago. I could barely get the zipper up. Within days I had called the hospital and they arranged for an ultrasound. They and I suspected that the dreaded ascites was back. If you check out this link do not be alarmed by this picture. I look nothing like that! In any case can I tell you how bummed out this makes me feel?
Yes I stopped treatment in February because the chemo drug was not effective for me anymore. But I had hopes that I could get through the summer without chemo. To be able to enjoy a glass of wine with dinner would have been ultimate. (little things make me happy.....)
Alas, I will be admitted into hospital on Monday for parensentesis and a chemo treatment. The drug they are going to use is Cisplatin. A platinum drug. I believe Cisplatin was used in the days before Carboplatin and is still in wide use. Because I react severely to Carboplatin I have to be admitted to hospital so personnel can monitor my potential reaction under a hyper-sensitivity protocol. Best to be safe than sorry....
You may be wondering why on earth they would give me another platinum drug when I reacted to the other. Platinum drugs are the best for ovarian cancer. They seem to knock it down quite effectively but allergic reactions may occur like it does for me. Also, the team at Princess Margaret suggested Cisplatin to my oncologist in order to determine whether I am 'platinum sensitive' or 'platinum resistant' after a series of infusions. This was all explained in my post of April 17, 2014. The ultimate goal is to get into a clinical trial with a parp inhibitor. I have to qualify and this is the way.
My CA 125 is not good either. My current reading is 597 and this is alarming. I was at a low of 113 last December. I knew it was rising but not this much. I really need this chemo now. The parensentesis and the chemo will take care of the ascites.
Oh and by the way ...... did I tell you we are leaving on a 3 week holiday in France and Spain? In one week. This was booked back in January after my Dad died and my Mom is coming with us. At that time I was doing really well on Doxil and I had hoped I would be in good shape for June. We are definitely going. I just maybe not a bright as usual and I will have some good drugs to help me along!
So while attempting to inspire regularity I noticed my abdomen getting a bit bigger. This was alarmingly noted when I tried on a straight skirt which I had made about a month ago. I could barely get the zipper up. Within days I had called the hospital and they arranged for an ultrasound. They and I suspected that the dreaded ascites was back. If you check out this link do not be alarmed by this picture. I look nothing like that! In any case can I tell you how bummed out this makes me feel?
Yes I stopped treatment in February because the chemo drug was not effective for me anymore. But I had hopes that I could get through the summer without chemo. To be able to enjoy a glass of wine with dinner would have been ultimate. (little things make me happy.....)
Alas, I will be admitted into hospital on Monday for parensentesis and a chemo treatment. The drug they are going to use is Cisplatin. A platinum drug. I believe Cisplatin was used in the days before Carboplatin and is still in wide use. Because I react severely to Carboplatin I have to be admitted to hospital so personnel can monitor my potential reaction under a hyper-sensitivity protocol. Best to be safe than sorry....
You may be wondering why on earth they would give me another platinum drug when I reacted to the other. Platinum drugs are the best for ovarian cancer. They seem to knock it down quite effectively but allergic reactions may occur like it does for me. Also, the team at Princess Margaret suggested Cisplatin to my oncologist in order to determine whether I am 'platinum sensitive' or 'platinum resistant' after a series of infusions. This was all explained in my post of April 17, 2014. The ultimate goal is to get into a clinical trial with a parp inhibitor. I have to qualify and this is the way.
My CA 125 is not good either. My current reading is 597 and this is alarming. I was at a low of 113 last December. I knew it was rising but not this much. I really need this chemo now. The parensentesis and the chemo will take care of the ascites.
Oh and by the way ...... did I tell you we are leaving on a 3 week holiday in France and Spain? In one week. This was booked back in January after my Dad died and my Mom is coming with us. At that time I was doing really well on Doxil and I had hoped I would be in good shape for June. We are definitely going. I just maybe not a bright as usual and I will have some good drugs to help me along!
Sunday, April 20, 2014
5th International Symposium on Hereditary Breast and Ovarian Cancer: Twenty Years of Advances
This Tuesday I am travelling to Montreal to attend a BRCA symposium. This event coincides with the 20 year anniversary of the discovery of the BRCA gene mutation. For 3 days this international symposium brings together clinicians, researchers and medical personnel to talk about hereditary breast and ovarian cancer. This scientific conference is arranged by the Hereditary Breast and Ovarian Cancer Foundation.
A feature of this symposium is a day for lay people. This all day event is designed for people living with the BRCA mutation and the agenda provides to up to date research and clinical information. It is open to anyone with an interest in this field.
My objective is to learn all I can about BRCA mutation and to hopefully network with some of the researchers and clinicians. I also hope to meet other people who are in my situation and learn about their own experiences.
For those of you not familiar with BRCA genes, here is a short video that clearly explains the mutations I have been talking about.
A feature of this symposium is a day for lay people. This all day event is designed for people living with the BRCA mutation and the agenda provides to up to date research and clinical information. It is open to anyone with an interest in this field.
My objective is to learn all I can about BRCA mutation and to hopefully network with some of the researchers and clinicians. I also hope to meet other people who are in my situation and learn about their own experiences.
For those of you not familiar with BRCA genes, here is a short video that clearly explains the mutations I have been talking about.
Thursday, April 17, 2014
Appointment at Princess Margaret
On Monday, April 14th I traveled to Toronto for an appointment at Princess Margaret Cancer Centre (PMCC). I was to meet with Dr. Amit Oza to discuss clinical trials. I actually met with Dr. Les Levin who is a member of the gynecological cancer team. We had a great chat for about 1/2 hour.
He came to the meeting fully versed in my condition with the help of the summary provided by Grand River Cancer Centre. He said it was a very good summary and the team had reviewed it. I also brought with me the last 4 CT Scans and he had already reviewed those as well.
Basically, the end result of our discussion is that he and the team decided that it was unclear whether I am 'platinum sensitive' or 'platinum resistant'. This is a very key criteria for the studies they conduct at PMCC. I was unclear what these terms meant but he explained it very well.
Platinum sensitive: When given a series of treatments of platinum based chemotherapy drug and a patient is disease free (not visible in a CT Scan) for a period of 6 months or more months. One drug of this type is Carboplatin.
Platinum resistant: After being given a series of treatment of platinum based chemotherapy and patient shows growth of visible disease within 6 or less months. The patient is said to be resistant to the treatment.
In my situation the team at PMCC doesn't know according to the information in my file. My last treatment of Carboplatin in June 2013 resulted in a severe allergic reaction. This was my second treatment in the series and my doctor and I decided we should stop treatment and take a break. By September of 2013 my CA 125 was up 40 points to 386 and a CT Scan in October showed visible evidence of disease. My doctor and I discussed using a different drug to avoid further allergic reactions and this is when I started the first of 5 treatments of Doxil. When reviewing this information it is unclear whether I am 'platinum sensitive' because the number of treatments I had with Carboplatin were too few to determine what effect they had. On the other had could I be 'platinum resistant' because I started treatment so soon after the last one but again it was only 2 treatments. Perplexing as Dr. Levin expressed.....
Clinical trials are very regimented and almost of a military form. The studies have to follow strict guidelines or else the researchers cannot draw meaningful conclusions which is what we want from clinical trials and the advancement of medicine. So for this reason I currently do not qualify for any of their studies. However, in his opinion, I currently do not show much disease growth in my CT Scans from January to March and thinks I should just take a break from treatment. ( I am all for this. My side effects are subsiding quite nicely.)
As a clinician he is suggesting my oncologist try another platinum based chemotherapy the next time (Cisplatin). There is the risk of another allergic reaction but it would be administered while admitted to hospital. This will help me in terms of disease management and to determine whether I am 'platinum sensitive'or 'platinum resistant'. In fact there are still many other drugs for the treatment of ovarian cancer that have not been used. He mentioned gemcitabine, topotecan, etc. I felt he listened to me and he answered all my questions. I left there feeling quite optimistic and made my way in the rain to the nearest Winners store to shop before hopping the train back home.
He came to the meeting fully versed in my condition with the help of the summary provided by Grand River Cancer Centre. He said it was a very good summary and the team had reviewed it. I also brought with me the last 4 CT Scans and he had already reviewed those as well.
Basically, the end result of our discussion is that he and the team decided that it was unclear whether I am 'platinum sensitive' or 'platinum resistant'. This is a very key criteria for the studies they conduct at PMCC. I was unclear what these terms meant but he explained it very well.
Platinum sensitive: When given a series of treatments of platinum based chemotherapy drug and a patient is disease free (not visible in a CT Scan) for a period of 6 months or more months. One drug of this type is Carboplatin.
Platinum resistant: After being given a series of treatment of platinum based chemotherapy and patient shows growth of visible disease within 6 or less months. The patient is said to be resistant to the treatment.
In my situation the team at PMCC doesn't know according to the information in my file. My last treatment of Carboplatin in June 2013 resulted in a severe allergic reaction. This was my second treatment in the series and my doctor and I decided we should stop treatment and take a break. By September of 2013 my CA 125 was up 40 points to 386 and a CT Scan in October showed visible evidence of disease. My doctor and I discussed using a different drug to avoid further allergic reactions and this is when I started the first of 5 treatments of Doxil. When reviewing this information it is unclear whether I am 'platinum sensitive' because the number of treatments I had with Carboplatin were too few to determine what effect they had. On the other had could I be 'platinum resistant' because I started treatment so soon after the last one but again it was only 2 treatments. Perplexing as Dr. Levin expressed.....
Clinical trials are very regimented and almost of a military form. The studies have to follow strict guidelines or else the researchers cannot draw meaningful conclusions which is what we want from clinical trials and the advancement of medicine. So for this reason I currently do not qualify for any of their studies. However, in his opinion, I currently do not show much disease growth in my CT Scans from January to March and thinks I should just take a break from treatment. ( I am all for this. My side effects are subsiding quite nicely.)
As a clinician he is suggesting my oncologist try another platinum based chemotherapy the next time (Cisplatin). There is the risk of another allergic reaction but it would be administered while admitted to hospital. This will help me in terms of disease management and to determine whether I am 'platinum sensitive'or 'platinum resistant'. In fact there are still many other drugs for the treatment of ovarian cancer that have not been used. He mentioned gemcitabine, topotecan, etc. I felt he listened to me and he answered all my questions. I left there feeling quite optimistic and made my way in the rain to the nearest Winners store to shop before hopping the train back home.
Monday, April 7, 2014
I Have a Meeting with Dr. Amit Oza at Princess Margaret
My visit with the oncologist on March 28th relayed the results of the CT Scan taken on March 21st. Scan is showing a growth of about an inch in the upper left hand abdomen and nodules of disease on the peritoneum. Still looks ok based on the scans from January but something is happening and it is raising the CA 125 numbers.
Our discussions centred on getting me into a clinical trial. Princess Margaret is still on the radar as my oncologist was told another doctor was being consulted regarding my condition. PARP inhibitors are the new treatments on the horizon and still in trial phase. Some trials have had great results and if I can get into one that would be awesome.
Couple of days ago my oncologist called to say that Dr. Amit Oza was interested in my case and in meeting me. She confirmed his interest in me is because of the type of ovarian cancer I have, the BRCA2 mutation I carry and that I am platinum sensitive. A meeting has been arranged for April 14th. I hope to discuss my condition with him and the potential of a clinical trial using a PARP inhibitor. I am going to the meeting prepared with my questions written down.
This turn of events both excites and worries me. Exciting in that I may be entering a trial that is part of a larger picture in the future treatment of ovarian cancer. How pleased I will be if this treatment slows the progression of disease. But I am also worried that even though the results may be promising for some, what if it is not for me? What if it does nothing and things just continue to worsen and grow? Welcome to the thinking process of anyone with disease.
Physically I cannot control what goes on with my body except to take care of it as best I can through nutrition, sleep, exercise and attitude. More importantly calming my mind is the greater challenge. How do you face the challenge of the condition and remain optimistic, calm and at peace. It is difficult. Occupying the mind with tasks and projects is one way that works for me. Spending time with family and friends is another way.
Filling ones day is not hard. There is always a myriad of things to be done in and around the house. Even now in between paragraphs I am watching a robin outside in the backyard. I wonder if he is scouting for a place to nest. The key is to keep the mind occupied and focused. This is one of the reasons I like to sew. I constantly am thinking about future projects, checking out current fashion trends (I don't dig the current pastel trend), searching online for fabric deals and actually working on the current garment. Nothing like several hours of concentrated effort in ripping a jacket apart and resewing it to keep my mind free of worry and concern.
I am also planning a trip to Europe this June. I spend many hours checking out the forums on TripAdvisor to learn everything I can about a location, local culture, transportation challenges, currency, local foods, etc. Rick Steves's books are my best friends! I plan most days though I don't plan a minute by minute itinerary. Lots of down time is allotted because you must spend some time at an outdoor cafe with a coffee or wine and watch the world go by!
Our discussions centred on getting me into a clinical trial. Princess Margaret is still on the radar as my oncologist was told another doctor was being consulted regarding my condition. PARP inhibitors are the new treatments on the horizon and still in trial phase. Some trials have had great results and if I can get into one that would be awesome.
Couple of days ago my oncologist called to say that Dr. Amit Oza was interested in my case and in meeting me. She confirmed his interest in me is because of the type of ovarian cancer I have, the BRCA2 mutation I carry and that I am platinum sensitive. A meeting has been arranged for April 14th. I hope to discuss my condition with him and the potential of a clinical trial using a PARP inhibitor. I am going to the meeting prepared with my questions written down.
This turn of events both excites and worries me. Exciting in that I may be entering a trial that is part of a larger picture in the future treatment of ovarian cancer. How pleased I will be if this treatment slows the progression of disease. But I am also worried that even though the results may be promising for some, what if it is not for me? What if it does nothing and things just continue to worsen and grow? Welcome to the thinking process of anyone with disease.
Physically I cannot control what goes on with my body except to take care of it as best I can through nutrition, sleep, exercise and attitude. More importantly calming my mind is the greater challenge. How do you face the challenge of the condition and remain optimistic, calm and at peace. It is difficult. Occupying the mind with tasks and projects is one way that works for me. Spending time with family and friends is another way.
Filling ones day is not hard. There is always a myriad of things to be done in and around the house. Even now in between paragraphs I am watching a robin outside in the backyard. I wonder if he is scouting for a place to nest. The key is to keep the mind occupied and focused. This is one of the reasons I like to sew. I constantly am thinking about future projects, checking out current fashion trends (I don't dig the current pastel trend), searching online for fabric deals and actually working on the current garment. Nothing like several hours of concentrated effort in ripping a jacket apart and resewing it to keep my mind free of worry and concern.
I am also planning a trip to Europe this June. I spend many hours checking out the forums on TripAdvisor to learn everything I can about a location, local culture, transportation challenges, currency, local foods, etc. Rick Steves's books are my best friends! I plan most days though I don't plan a minute by minute itinerary. Lots of down time is allotted because you must spend some time at an outdoor cafe with a coffee or wine and watch the world go by!
Friday, March 7, 2014
Turn in the Road
Just heard from my oncologist. She just called me to let me know that my CA 125 reading is 270, up from 186 in one month. So this is disconcerting. No chemo with Doxil today. In her opinion Doxil has done it's job and it's time to look at other treatments. No point getting another dose with no improvement only to deal with the side effects for nothing.
She also has heard from Dr. Bedard at Princess Margaret. He said they have lots of stuff going on that I could get involved with but in his opinion the best one is a study using PARP inhibitor which Dr. Welch is conducting out of London. I am all for getting into a trial with a PARP inhibitor. This is leading edge treatment these days for ovarian cancer and other cancers but still in trial phase. This particular treatment has shown good results with people having positive mutation with BRCA1 and BRCA2 (mine) in their DNA.
First off she is sending me for another CT Scan even though I just had one in January. Remember that one. So full of promise when it came back with no visible signs of disease. Well something is happening....... And you cannot enter into a trial without visible disease. How can they tell otherwise that it is working?
So in the meantime I sit tight and wait for hospital personnel to call me with an appointment for CT Scan. I will meet with the oncologist to discuss the results and next plan of action. The best thing is that these side effects should slowly resolve themselves so that I return to some sort of normalcy.
She also has heard from Dr. Bedard at Princess Margaret. He said they have lots of stuff going on that I could get involved with but in his opinion the best one is a study using PARP inhibitor which Dr. Welch is conducting out of London. I am all for getting into a trial with a PARP inhibitor. This is leading edge treatment these days for ovarian cancer and other cancers but still in trial phase. This particular treatment has shown good results with people having positive mutation with BRCA1 and BRCA2 (mine) in their DNA.
First off she is sending me for another CT Scan even though I just had one in January. Remember that one. So full of promise when it came back with no visible signs of disease. Well something is happening....... And you cannot enter into a trial without visible disease. How can they tell otherwise that it is working?
So in the meantime I sit tight and wait for hospital personnel to call me with an appointment for CT Scan. I will meet with the oncologist to discuss the results and next plan of action. The best thing is that these side effects should slowly resolve themselves so that I return to some sort of normalcy.
Thursday, March 6, 2014
Oncologist Visit Today
Tomorrow I am scheduled for my 7th infusion for Doxil but at this point I am not sure I will get it. Let me back up a little.
A month ago when I had my blood work done in preparation for my 6th treatment of Doxil on February 7th, my CA 125 number had jumped up to 186. Imagine my surprise! It had been coming down for the past 6 months from 304 and stabilized at 114. And my CT Scan last month indciated very good results with no visible signs of disease. Today I had a chance to discuss this with my oncologist and she is troubled by it. If today's blood work shows an increase in this number again then she might stop the Doxil treatment and switch me to a different treatment.
So now I am concerned that Doxil is not working for me. How strange is that? My CT Scan was good but somewhere in my body microscopic cancer cells are emitting certain proteins that are being picked up by the CA 125. It is maddening to say the least.
Well if it is not working anymore then the best course of action is to stop. It may be for the best. There is a world wide shortage of Doxil and hospitals are prioritizing who gets the treatment based on how effective it is for those people. If it is no longer working for me then someone else can get it and I move onto another treatment.
I will know tomorrow just before I get treatment whether it is a go or not.
We also discussed my meeting with Dr. Welch. Unfortunately, my oncologist has not received his notes yet so I summarized our meeting. You have already read how my meeting went in my last post. Based on our conversation Dr. Califaretti has already contacted someone at Princess Margaret to keep me in the loop for clinical trials. Hopefully something will come of that in the near future.
A month ago when I had my blood work done in preparation for my 6th treatment of Doxil on February 7th, my CA 125 number had jumped up to 186. Imagine my surprise! It had been coming down for the past 6 months from 304 and stabilized at 114. And my CT Scan last month indciated very good results with no visible signs of disease. Today I had a chance to discuss this with my oncologist and she is troubled by it. If today's blood work shows an increase in this number again then she might stop the Doxil treatment and switch me to a different treatment.
So now I am concerned that Doxil is not working for me. How strange is that? My CT Scan was good but somewhere in my body microscopic cancer cells are emitting certain proteins that are being picked up by the CA 125. It is maddening to say the least.
Well if it is not working anymore then the best course of action is to stop. It may be for the best. There is a world wide shortage of Doxil and hospitals are prioritizing who gets the treatment based on how effective it is for those people. If it is no longer working for me then someone else can get it and I move onto another treatment.
I will know tomorrow just before I get treatment whether it is a go or not.
We also discussed my meeting with Dr. Welch. Unfortunately, my oncologist has not received his notes yet so I summarized our meeting. You have already read how my meeting went in my last post. Based on our conversation Dr. Califaretti has already contacted someone at Princess Margaret to keep me in the loop for clinical trials. Hopefully something will come of that in the near future.
Wednesday, March 5, 2014
Visit with doctor at London Regional Cancer Centre
Earlier this week on March 4th I met with Dr. Welch out of LRCC to discuss clinical trials.
We discussed my medical journey thus far and some of the work he is involved with. Unfortunately, one of the trials he is managing was unsuitable for me because I went from a platinum based treatment to Doxil last year. His trial wants candidates straight from platinum based treatments. As you may recall I have a sensitivity to Carboplatin (platinum based) and went to Doxil treatment last September.
One of the things I wanted to talk about was the timing of entering clinical trials. It is confusing to me. Do I continue on a treatment as long as it is working and miss out on a clinical trial using an experimental drug that might do me good or jump into a trial as soon as possible? Naturally there is no hard and fast rule about this and he confirmed this. He did talk about a trial starting in several months that I may qualify for and he will keep tabs on me for this. We also talked about Princess Margaret Cancer Centre in Toronto and how this might also be an option for me. That facility does attract more research dollars and cutting edge trials which I am interested in.
I should probably talk a little about clinical trials. By the time a treatment needs to be tested it has been studied extensively in research labs and probably tested on animals. My understanding is that there are 4 phases and the process generally takes many years:
Phase I: Answers the question 'Is this drug safe.' Drug is tested for first time on humans and on a small group (15-40). Generally the people in this trial have no further treatment options. Usually conducted in major teaching hospitals.
Phase II: Answers the question 'Does the treatment work?' The people in this phase (25 - 100) usually have the same type of disease and they all receive the same dose of the drug. These people have not responded to standard treatment or are more likely to benefit more from experimental treatment. These trials are usually conducted at major teaching hospitals or smaller community hospitals.
Phase III: Answers the question 'Is this treatment better than existing treatments?' When enough people respond favourably to the treatment in phase II then it enters phase III trials. Several hundred people are usually involved and conducted across Canada and North America at the same time. Trials are usually randomized in that the participants are chosen at random to receive either the new treatment or standard treatment. The trials may also be blinded in that the participants and / or the researchers don't know which treatment the participants are getting. This is all to support scientific study objectivity and reduce human bias. If phase III is safe and effective then drug manufacturer can apply to Health Canada for approval to sell the drug by prescription in Canada.
Phase IV: Answers the question 'Is there a better way to use this treatment?' These trials study drugs that are already approved by Health Canada and are being used for standard treatments. Researchers may use these drugs to better understand treatments that have already been proven to work. A trial may show that a drug is more effective if it is given for a longer period or that a lower dose works as well with few side effects.
Dr. Welch was gracious and empathetic to my situation. If I do go to London to participate in a clinical trial I know I will be in good hands.
Tuesday, February 11, 2014
Doxil for the 6th time
Just last Friday (February 7th) I had my sixth infusion of Doxil. All went well and so far the weariness after a treatment has been minimal. In my last post I mentioned that the doctor thought perhaps that I could stop after the 6th infusion and take a rest but would not have Doxil again. This was not my regular doctor but someone filling in for that particular appointment. I mentioned all this to my regular doctor and she wants to keep me on this regiment since it is doing the job and keeping cancer at bay. I am all for it but understand that this drug can be harmful over the long run to my heart even though the drug formulation they are using is less harmful. We have to remember that cancer treatment and diagnostics are always a balancing act between benefits vs. damage.
On Monday she sent me for a echo cardiogram for baseline pictures in order that she can monitor my heart health. She may send me every 2 months to keep an eye on this.
During our last visit last week we also had a conversation regarding my future treatment plans. Like most cancer patients I scour the internet for clinical trials, experimental drugs and new treatments. I feel I have to keep up with what is out there in case something gets missed. It is also difficult and complicated to ensure a treatment might be suitable for me given that everyone's particular cancer can be slightly different and my BRCA2 situation is also a factor. So I brought up the subject of whether the time was right to refer me to a larger cancer centre which specializes in gynecologic cancers such as mine. This was difficult to do in that my doctor is great. She is truly on my side and empathetic in her manner. I did not want her to feel that she was not doing her job but I made her understand that I need to feel that I am taking advantage of all our health care options in Ontario. Our relationship has been one of partners where I make the final decision in the direction we go and she encourages and respects this.
I am glad we had this discussion because she reassured me that my treatment was not in a vacuum. We are fortunate in southwestern Ontario to have several cancer centres within a 2 hour drive. She told me that much information is shared within Ontario regarding new treatments and new drugs. In fact she likes to deal with a particular doctor out of London who specializes in Ovarian Cancer and was trained at Princess Margaret in Toronto.
She has reached out to him since our meeting and is arranging an appointment for me to meet him. This is good news for me in that I feel that I will have another member on my team.
On Monday she sent me for a echo cardiogram for baseline pictures in order that she can monitor my heart health. She may send me every 2 months to keep an eye on this.
During our last visit last week we also had a conversation regarding my future treatment plans. Like most cancer patients I scour the internet for clinical trials, experimental drugs and new treatments. I feel I have to keep up with what is out there in case something gets missed. It is also difficult and complicated to ensure a treatment might be suitable for me given that everyone's particular cancer can be slightly different and my BRCA2 situation is also a factor. So I brought up the subject of whether the time was right to refer me to a larger cancer centre which specializes in gynecologic cancers such as mine. This was difficult to do in that my doctor is great. She is truly on my side and empathetic in her manner. I did not want her to feel that she was not doing her job but I made her understand that I need to feel that I am taking advantage of all our health care options in Ontario. Our relationship has been one of partners where I make the final decision in the direction we go and she encourages and respects this.
I am glad we had this discussion because she reassured me that my treatment was not in a vacuum. We are fortunate in southwestern Ontario to have several cancer centres within a 2 hour drive. She told me that much information is shared within Ontario regarding new treatments and new drugs. In fact she likes to deal with a particular doctor out of London who specializes in Ovarian Cancer and was trained at Princess Margaret in Toronto.
She has reached out to him since our meeting and is arranging an appointment for me to meet him. This is good news for me in that I feel that I will have another member on my team.
Sunday, January 12, 2014
Happy New Year! - 5th Treatment of Doxil
The day after my Dad's funeral I had a CT Scan. Imagine my delight when the Dr. told me the results the very next day. She had good news that the visible masses of the previous scan were no longer there. Great news. This could mean that after the 5th and 6th Doxil treatment I could get a break from chemo for awhile. How long? Who knows but I am hoping for a lengthy reprieve! Dad is smiling down at me!
Doxil apparently is doing the job but these side effects are brutal. See my December 7th post. Doxil apparently is a one trick pony. According to the Dr. I can only have it once because it can damage the heart with prolonged use. After the 6th dose I will probably not have it again if I recur and I probably will. But there are other drugs out there and I don't want to get acquainted with any of them anytime soon.
In the meantime I had my 5th treatment on January 10th and the sixth dose will be around February 7th. After this, taking care of myself will be top priority as it generally is. Do you think I sit around all day eating Cheetos and drinking beer? :) I will continue with good eating habits, more organic produce and more activity. We will probably plan a trip or two. Who knows? It has been a long time since I have felt this optimistic!
Happy New Year!
Doxil apparently is doing the job but these side effects are brutal. See my December 7th post. Doxil apparently is a one trick pony. According to the Dr. I can only have it once because it can damage the heart with prolonged use. After the 6th dose I will probably not have it again if I recur and I probably will. But there are other drugs out there and I don't want to get acquainted with any of them anytime soon.
In the meantime I had my 5th treatment on January 10th and the sixth dose will be around February 7th. After this, taking care of myself will be top priority as it generally is. Do you think I sit around all day eating Cheetos and drinking beer? :) I will continue with good eating habits, more organic produce and more activity. We will probably plan a trip or two. Who knows? It has been a long time since I have felt this optimistic!
Happy New Year!
Final Days of December 2013
Obtaining a stent for my father to alleviate the jaundice was not to be. The doctor at the hospital showed me on his computer what the cancer looked like via a recent CT Scan. How vivid to see where the cancer resided as he matter of factly discussed this 15 minute procedure. But the cancer had spread so much it was blocking the bile duct from the liver.
While my mother and I waited the porter waiting to take him to recovery told us about her father who had died of pancreatic cancer. I am finding that most people who have faced this disease end up succumbing. The prognosis is not good at all and even though we knew this we always hoped to get a few more months. Her father went quickly and her story reminded us of the eventual outcome, no matter what. Whatever medical intervention that presents itself does not mean it will prolong life and certainly does not mean he will be comfortable.
Never the less we took him home and discussed next steps. Within the week he was back in hospital to have a tube inserted from the outside. Full discussions were held with his pain and symptom management physician, Dr. Ward from Hospice Waterloo Region and our family. Truth be told she gently encouraged us to leave him be but as a family we felt we had to try and alleviate this bile to buy him a few more weeks. These decisions are not easy and are heart wrenching and she fully supported our decision. His stay in the hospital was over several days while they dealt with low blood pressure and too much iron in his blood. After 6 units of platelets he was good to go with the procedure. This was December 18th. After a couple of days of recovery in hospital he was transferred home and was housed in the living room in a hospital bed. He did not leave that bed except for once when we physically lifted him out and placed him gently on an easy chair for a change of pace.
These last few days of his life were stressful and gut wrenching. Pain was ever present but under control with medications and eventually a pain pump. His appetite greatly decreased and fluid intake diminished. He survived Christmas and still was conscious enough to recognize all of us and talk very briefly. We had PSWs through the CCAC come into the house 3 times a day to care for him but my mother was the front line care provider. She was by his side all day and only slept in her bed when she felt he was asleep for the night. We provided her with a baby monitor so she could hear him breathe so hopefully she could rest.
When someone is so sick you would think that they spend most of the day sleeping peacefully but this is not the case. There is much movement and some attempts to get out of bed which would be fatal. Down time for my mother was minimal even with help from CCAC. A nurse was visiting every day and the caring physician would visit when needed. The front door was a revolving door when you add deliveries for medication or equipment. And then there was the phone. It rang all the time and my mother had to ignore it many times. Many of her meals were on the run. We helped where we could with necessary purchases for his care, food and support. But the spouse is always the one to bear the brunt.
My mother had decided after Christmas to look into Lissard House. It was clear to her that Dad would not last much longer and caring for him was taking a toll. The application process began but his condition deteriorated even faster and within days she knew he would not make it to Lissard House. Even so she had decided that moving him was so physically painful for him that transporting him anywhere was out of the question. He was to die at home and this was to be the best option.
The healthcare people through CCAC and Hospice Waterloo Region are wonderful. Without their help Dad would have ended up being in hospital on some acute care floor and this would not have been what we wanted for him in his final days.
New Year's Eve came and went but the inevitable occurred around 9 pm on January 2nd. Even Franca made it from New York having arrived on New Year's Day. He knew she was also there with us even though he could not speak anymore. He did squeeze our hands in recognition. My Dad went peacefully with his family around him.
We will miss him so much but his suffering has ended and he is in a better place. It is hard to believe he is not here anymore.
While my mother and I waited the porter waiting to take him to recovery told us about her father who had died of pancreatic cancer. I am finding that most people who have faced this disease end up succumbing. The prognosis is not good at all and even though we knew this we always hoped to get a few more months. Her father went quickly and her story reminded us of the eventual outcome, no matter what. Whatever medical intervention that presents itself does not mean it will prolong life and certainly does not mean he will be comfortable.
Never the less we took him home and discussed next steps. Within the week he was back in hospital to have a tube inserted from the outside. Full discussions were held with his pain and symptom management physician, Dr. Ward from Hospice Waterloo Region and our family. Truth be told she gently encouraged us to leave him be but as a family we felt we had to try and alleviate this bile to buy him a few more weeks. These decisions are not easy and are heart wrenching and she fully supported our decision. His stay in the hospital was over several days while they dealt with low blood pressure and too much iron in his blood. After 6 units of platelets he was good to go with the procedure. This was December 18th. After a couple of days of recovery in hospital he was transferred home and was housed in the living room in a hospital bed. He did not leave that bed except for once when we physically lifted him out and placed him gently on an easy chair for a change of pace.
These last few days of his life were stressful and gut wrenching. Pain was ever present but under control with medications and eventually a pain pump. His appetite greatly decreased and fluid intake diminished. He survived Christmas and still was conscious enough to recognize all of us and talk very briefly. We had PSWs through the CCAC come into the house 3 times a day to care for him but my mother was the front line care provider. She was by his side all day and only slept in her bed when she felt he was asleep for the night. We provided her with a baby monitor so she could hear him breathe so hopefully she could rest.
When someone is so sick you would think that they spend most of the day sleeping peacefully but this is not the case. There is much movement and some attempts to get out of bed which would be fatal. Down time for my mother was minimal even with help from CCAC. A nurse was visiting every day and the caring physician would visit when needed. The front door was a revolving door when you add deliveries for medication or equipment. And then there was the phone. It rang all the time and my mother had to ignore it many times. Many of her meals were on the run. We helped where we could with necessary purchases for his care, food and support. But the spouse is always the one to bear the brunt.
My mother had decided after Christmas to look into Lissard House. It was clear to her that Dad would not last much longer and caring for him was taking a toll. The application process began but his condition deteriorated even faster and within days she knew he would not make it to Lissard House. Even so she had decided that moving him was so physically painful for him that transporting him anywhere was out of the question. He was to die at home and this was to be the best option.
The healthcare people through CCAC and Hospice Waterloo Region are wonderful. Without their help Dad would have ended up being in hospital on some acute care floor and this would not have been what we wanted for him in his final days.
New Year's Eve came and went but the inevitable occurred around 9 pm on January 2nd. Even Franca made it from New York having arrived on New Year's Day. He knew she was also there with us even though he could not speak anymore. He did squeeze our hands in recognition. My Dad went peacefully with his family around him.
We will miss him so much but his suffering has ended and he is in a better place. It is hard to believe he is not here anymore.
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