Back from Florida the evening of the 16th and into Princess Margaret by 7:00 am on St. Patrick's Day. Bloodwork first thing and then a consultation with the clinical nurse and clinical researcher. Much was discussed regarding the study and procedures namely the skin biopsy and the tumour biopsy scheduled later that day. A skin biopsy is used to study the effects of the study drug on the tissues of my body. The skin biopsy is done before the study and at various intervals during the study. The tissue removed in a tumour biopsy is studied to see the effects of the study drug on tumour tissue. Again, it is done at various intervals during the study.
Needless to say by end of day I was feeling a bit like a human pin cushion with all the various procedures and was glad to head home to my brother's place. Thank goodness drugs used during the tumour biopsy (fentanyl) were still in play and pain was not an issue.
On the 19th I had an appointment with my oncologist at Grand River. Again she likes to keep tabs on me while under the care at Princess Margaret. I have been having ascites again as I mentioned in previous posts and have had 3 paracentesis in the last month. It gets very uncomfortable by day 10 or so and my clothes are not fitting. Each time at least 3.5 litres is removed. Afterwards my guts feel tender but I am more comfortable. Is it time to rethink some of my clothing options? Yes. I think so. More looser fitting clothes will be in my future. I need to look at my pattern and fabric stash!
The oncologist has scheduled me for a catheter to be installed near the hip. (I picture a little tube like the ones on beach balls!) This will enable easy access for a nurse to come to the house to remove fluid build up periodically rather than going to hospital every week or so for a paracentesis. This could be done every 3 days or so and I know it sounds gross but at least I will be more comfortable.
Treatment begins next Tuesday and I am hoping I will get the AZD-1775 and not the placebo.
I was diagnosed with ovarian and peritoneal cancer on September 22nd, 2010. Remission was achieved in February 2011 after surgery and chemotherapy but in June 2012, the cancer reared its ugly head and my dance with NED (no evidence of disease) was over. My life now consists of living with chronic disease. It is a roller coaster ride of life of ups and downs. I am trying for mostly up! :) Feel free to add comments and thoughts.
Friday, March 20, 2015
Wednesday, March 4, 2015
Clinical Trial Hopeful
Well I am back on track to enter the clinical trial I described back in October 2014. Now that the Taxol is less than effective the disease seems to be active and is clearly visible on the CT Scan. As I mentioned before there is also ascites. I've already had one paracentesis and they removed 3.25 litres of fluid (Feb 27). Of course the fluid doesn't not stop building up unless there is some chemo treatment or something.
My appointment this past Monday (Mar 2nd) at Princess Margaret confirmed the active disease and the need to get me into that clinical trial as soon as possible. I have a date for a biopsy (Mar 17). This is one of the criteria of the trial and other diagnostics that have to take place before treatment can begin. So I have a bit of time to nip down to Florida and visit with my Mom and Uncle and Aunt. Franca is also going and I will be grateful for a bit of warmth and sunshine.
Hopefully I will be starting my trial treatment on March 25th. It will be a start to a new journey!
My appointment this past Monday (Mar 2nd) at Princess Margaret confirmed the active disease and the need to get me into that clinical trial as soon as possible. I have a date for a biopsy (Mar 17). This is one of the criteria of the trial and other diagnostics that have to take place before treatment can begin. So I have a bit of time to nip down to Florida and visit with my Mom and Uncle and Aunt. Franca is also going and I will be grateful for a bit of warmth and sunshine.
Hopefully I will be starting my trial treatment on March 25th. It will be a start to a new journey!
Sunday, February 22, 2015
Well that was a short ride...... My CA 125 as of February 19th is now 222. Up from a reading in the low 90's (my home hospital) (42 at Princess Margaret Hospital) and naturally I knew it would be higher because this blasted ascites is acting up. Again I am swelling in the belly and there is some discomfort. Don't feel sad for me because I just feel pissed.
I feel angry at my body for betraying me because most chemo treatments start out effective but quickly end up doing nothing. I feel angry at science because the options for treatment are so hit and miss. I saw on the news last night how they have come up with a diagnostic test for ebola so that results are available in 15 minutes. Amazing! When there is a will and lots of $$$ they will find a way. Unfortunately for ovarian cancer and for many other cancers or diseases, research dollars are hard to come by and the money must be used judiciously. OK... That was my rant and I'm over it.
I have an appointment Monday morning at Princess Margaret Cancer Centre. Hopefully they will come up with a new treatment plan or clinical trial for me.
I feel angry at my body for betraying me because most chemo treatments start out effective but quickly end up doing nothing. I feel angry at science because the options for treatment are so hit and miss. I saw on the news last night how they have come up with a diagnostic test for ebola so that results are available in 15 minutes. Amazing! When there is a will and lots of $$$ they will find a way. Unfortunately for ovarian cancer and for many other cancers or diseases, research dollars are hard to come by and the money must be used judiciously. OK... That was my rant and I'm over it.
I have an appointment Monday morning at Princess Margaret Cancer Centre. Hopefully they will come up with a new treatment plan or clinical trial for me.
Thursday, January 22, 2015
Good Results from Taxol Treatments
My CT Scan taken on January 12th is showing very little sign of disease! Compared to the scan taken on November 18th the largest site of disease went from 22 mm to 8 mm. And my CA 125 is at 42 down from a high of 497 in November! Queue the fireworks!
The clinical researchers at Princess Margaret Hospital have recommended that I continue with the weekly Taxol treatments rather than begin a clinical trial. This makes sense. Why try something new that may not work as well as something that is currently working? The only drawback is that the neuropathy in my hands is getting worse and now I have it in my toes. If it worsens too much then the Taxol treatments have to stop but for now I am going for it. With such good results it is difficult to change the protocol to something else that may not work.
I have already heard from Grand River Regional Cancer Centre and my next chemo treatment is Monday. It will be 3 weeks out of 4 for the next little while so now I can plan my life somewhat!
The clinical researchers at Princess Margaret Hospital have recommended that I continue with the weekly Taxol treatments rather than begin a clinical trial. This makes sense. Why try something new that may not work as well as something that is currently working? The only drawback is that the neuropathy in my hands is getting worse and now I have it in my toes. If it worsens too much then the Taxol treatments have to stop but for now I am going for it. With such good results it is difficult to change the protocol to something else that may not work.
I have already heard from Grand River Regional Cancer Centre and my next chemo treatment is Monday. It will be 3 weeks out of 4 for the next little while so now I can plan my life somewhat!
Tuesday, January 6, 2015
Plugging Along with Taxol
I have now completed 6 rounds of Taxol. Minimal side effects which is awesome except for my loss of hair.... again..... Not sure of my current CA 125 numbers but they generally go up before they go down so I am hoping for good results with the next text.
I am scheduled for a CT Scan at Princess Margaret Hospital on January 12th. This one of the first requirements for the clinical trial. Hopefully I will continue to qualify and participate.
In December, David and I went to Isla Mujeres in Mexico for a one week holiday. It was relaxing and wonderful to be in warmth.
I am scheduled for a CT Scan at Princess Margaret Hospital on January 12th. This one of the first requirements for the clinical trial. Hopefully I will continue to qualify and participate.
In December, David and I went to Isla Mujeres in Mexico for a one week holiday. It was relaxing and wonderful to be in warmth.
Playa Norte |
Playa Norte |
Rocky Beach outside our Studio Apartment |
Churros - YUM! |
Barlitos Bar |
Resident at Barlitos Bar |
Creative Mexican Wiring |
Local Church - Check out view of Caribbean Sea |
Sunset from dock at Barlitos Bar |
Punta Sur |
Punta Sur |
Punta Sur |
Strolling Along the Malecon |
Monday, November 24, 2014
Post Chemo
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.....
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.....
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.........
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