Doxil Side Effects

So far I have had 3 doses of Doxil.  Different chemo drug and different side effects.

I do get the usual run down feeling and fatigue a couple of days after chemo but that clears up fairly quickly.  The following week is pretty good but then I hit the 10 to 14 days after chemo.  All hell breaks loose.....  This is the period of time where my immune system is at its lowest.  Low blood counts.  Risk of infection.

My mouth develops sores.  Painful sores.  I tend to stay away from anything too hot, too spicy, too hard, too salty, to acidic, etc.  It is like having cankers all over your mouth.  Not pleasant at all.  But I find that popsicles help to numb my mouth for a little while.  I also have something called 'Magic Mouthwash'.  It is basically a topical anesthetic that I gargle with and then swallow.  It numbs my mouth for about an hour.  Feels like when I have been to the dentist and had a tooth pulled.  Helpful especially at night to fall asleep without the pain.  Clears up within a week or so.  Thank God!

There is a side effect that is with me all the time and it developed after my second dose of Doxil.  My hands and feel are experiencing something called 'hand and foot syndrome'.  Hands are constantly very dry, tingly, hot and easily develop cracks if I am not careful with moisturizing.  They can also get painful if I use them to much in a strenuous manner.  Chopping vegetables, vacuuming, taking the dog for a walk, etc.  You get the idea.....  Anything that requires a grip.  My feet are hot and dry as well but luckily not painful and I make it a point to ensure I smear moisturizer a couple of times a day.

My skin in general is not the same.  Quite dry and I have also developed a rash around the arm pit area.  That is itchy and gross looking.  The rest of me has some discoloration especially around the areas of clothing contact ie waistline.  The skin is darker and dryer.  Parts of me appear to have been over exposed to the sun.

The main recommendation for this dry and hot skin is soaking in some ice water and Udderly Smooth Cream.  I call it the cow cream.  Too funny.  This is for cow's udders.  Keeps them smooth and supple!

The other side effect I will not discuss and it involves the back side.

Was in to see the oncologist this past Thursday for my pre chemo assessment and she is going to request a reduction in my next dosage to see if it will help with some of these side-effects.  Next chemo appointment is next Tuesday (10th).  Also a CT Scan will be scheduled for early January.  So far my CA 125 numbers have been going in the right direction and I am currently sitting at 113 which is a drop from 386 in August.  YAY!

In other news my father has developed jaundice.  He needs a stent to drain bile from his liver and they have  taken a CT Scan to determine if he is a candidate.  We should know more this Monday.

Doxil Treatment #3 - November 12th

This past Tuesday I had my 3rd round of Doxil.  All went well and no reactions to speak of with the infusion. I did have more blood work before the infusion could begin because my neutrophils were not at normal level the previous Friday.  If the numbers are not healthy they will not administer chemo.  Luckily the blood work came back normal and we could proceed.

The good news was regarding the CA 125 number.  It is decreasing since we started Doxil and I am sitting at 137 from 386 in August.  The numbers are going in the right direction and this is indeed good news!

My father is doing quite well these days.  He is comfortable and his pain medications are providing good quality of life.  He is a little more talkative and more alert with fewer periods of drowsiness.  His appetite is actually better than it has been but I don't think he will gain back any of his lost weight.  If he can only stay at current weight we will be happy.

Chemo Later

Later on today I will be going to hospital to get my second infusion of Doxil.  After my last infusion I experienced few side effects.  The usual fatigue, nausea and generally blah feeling was there but was short lived.  Let's hope for more of the same this time around.  (or less)

My CT scan is showing signs of disease throughout my upper abdomen.  It is not in one place just sprinkled about.  I am not experiencing any pain and am carrying on with life as per usual.  I should be getting more exercise and attending the Well Fit program at U of W but have trouble getting there for 8:30 am.  I think I need to try and attend later classes.  I just feel I need more than 8 or 9 hours of sleep most days and getting up earlier than 8:00 am is tough.  I know cry me a river......  For so many years I was getting up at 6:30 am to get ready for work!  How things change!

At my last doctor's appointment I was informed of a Doxil drug shortage.  That is concerning in the general scheme of things but our local hospital seems to have a good supply.  I will check on that later.....

My Dad is doing well as well as can be expected.  The radiation treatments have seemed to do the job of alleviating some abdominal pain.  He is more alert these days and participates in conversation. Unfortunately, he is quite wobbly on his legs and we have to be vigilant to protect him from falls.  This is most concerning for my mother who is stressed and tired most of the time.  The CCAC or Community Care Access Centre is helping out more now with a personal support worker attending to my Dad for his showering needs and providing more assistance with light household cleaning. A nurse visits a couple times a week or whenever necessary.

We do what we can but of course we cannot be at their house 24 hours a day.  Luckily Franca is coming to visit for a week.  We are expecting her later today.  It will be great to see her and John and for her to see Dad and Mom.

Chicago!

On September 30th we went to Chicago with Pat and Suzanne for a long weekend.  It was fabulous!  Their waterfront is beautiful and runs for miles.  The city itself was wonderful and exciting.  We stayed at a hotel outside the downtown in a neighbourhood called 'Lakeview' and close to Wrigley Field.  It was just an easy 15 minute bus ride to the downtown area.  We found this to be a positive and enjoyed returning in the evening to relax and then explore the surrounding area to find a place to eat.  Many restaurants to be found and with the lovely summer like weather we had many a meal outdoors.

During our time there we experienced a architectural tour via boat along the river, a tall ship sunset tour on Lake Michigan, a walking art deco architectural tour, and a water taxi ride.  One day we rented the public use bikes and rode along the waterfront.  That was wonderful.  We used public transit the whole time and it was excellent.  We purchased a 7 day pass for $30 bucks and we more than got our money's worth.  We were so fortunate the weather was so great it made the whole time there very enjoyable!

Iconic Sign

Southside view from John Hancock Building

View of Navy Pier 

Cloud Gate at Millennium Park

My crew

A Journey with Doxil has Begun

Yesterday I attended the Chemo Lounge to get my first dose of Doxil.

The chemo nurse had my file online and she knew I have a history of chemo sensitivity so she insisted that I get into a bed.  If something is to go wrong then it is easier to work on me from a bed rather than a chair.  I didn't put up much of a fuss!  Since this is the first time then the regular pre-meds are in order i.e. steroids and antiemetics (Zofran) which were taken at home.  My previous protocol of Taxol and Carboplatin called for copious amounts of more steroid and benedryl to get my body to take the drugs without reaction.  This in turn made me sleep.  This did work for 14 rounds but is now is not an option any more.  As you will recall in my last posts the long infusion of Carboplatin only also brought on an allergic reaction.

Doxil is only one bag of chemo drug and it is red.  Reminded me of a strawberry dacquiri.  Which I would have loved but alas no more alcohol while in treatment.  They say I can have one drink per week but that is hardly worth it.  Perhaps one glass of wine with a special dinner.

Anyway they pumped this red devil into me at the regular infusion rate and nothing happened.  Probably the nurse sitting next to me during the first 10 minutes had something to do with my successful infusion.  Let's hope this keeps up.  Next infusion is scheduled for October 15th.  In the mean time I have a CT Scan scheduled on October 1st with review on October 4th with the doc.

Joys of Summer with Heavy Doses of Dread

It has been a good summer.  Weather has not been great but no chemo.  Still on a rest from carboplatin after having a severe reaction in June.  Making sure to find joy in every day.  Sure is tough especially with my Dad suffering with pancreatic cancer.  He has deteriorated quite a lot and my Mother is still able to provide care at home.  I don't know for how long.  She is adamant that she will keep him there as long as possible.

Dad has just finished 2 weeks of radiation.  Radiation is used to alleviate pain, it is not used for treatment in his case.  There is no treatment for him and the inevitable will occur within 6 months to a year, at best.  The family has come to accept the seriousness of the situation and we try to spend as much time together as possible.  It is a time to make my Dad as comfortable as possible and make his remaining life as pleasant as possible.  It has been very tough for my Mother as you can imagine.

Franca came for a visit in July and we had a lovely time.  During her visit we celebrated Corina's graduation from Conestoga College.  She is a Health Administrator and is working at Stratford Hospital in Patient Registration until her contract is finished.  Tough to find those permanent full time positions!  She will persevere!

Corina's Graduation Day

Graduation

Corina's Graduation Party in July

Franca making herself useful

This past summer we were able to get my Mom and Dad to Pat's cottage for a couple of great weekends.

Mom at the helm

Dad enjoying the cruise

Viewing the Sunset at Cordova Lake

Dylan is at Mohawk College and has just started his program in Applied Music.  We miss him but we hear from him via texts all the time.  I wish I could see him doing the laundry!  :)

As for me....  I have been having some pain in my abdomen which means the cancer is making itself be known.  CA 125 is up to 386 which is up from 40 a couple of months ago.  It never was gone but it was quiet in a sense.  It gave me the time to relax and enjoy the summer without dealing with chemo side effects.  But now I must begin chemo again.

I have been scheduled for the 1st infusion for Monday, September 16th  in the chemo lounge.  Should only take a couple of hours and I will do this every 4 weeks perhaps for 8 treatments.  This time around we are going with pegylated liposomal DOXOrubicin or Doxil for short.

Wish me luck.  I will post my experience with this drug.

Enjoy the weekend!

Ovarian Cancer Walk of Hope - 2013

This year's walk was quite successful.  The participants in the K-W region raised over $75,000 which is more than double last year's efforts!  My team, 'A Late Summer Knight's Dream' raised more than $2700. It was a beautiful Sunday morning and the weather was perfect for our 5 km. walk.   Thanks to my teammates: Caroline Robic, Angie Felgendreher, Carol Dewar and Joanna Mackie.  A special thanks to my husband David for participating as well!  

So many people participated in the walk that they ran out of t-shirts for the registrants!  This is a good problem in that many more people join us on the day of the walk.

Our small but mighty team!

Making sure my toenail colour is perfect!

Ribbon cutting ceremony before the walk

Follow up with Oncologist July 15th

Blood work is great and CA 125 is down to 40.  I am prepared to be admitted for my next chemo and Dr. tells me that my reaction to Carboplatin on June 25th was a 'severe'one.  Who knew?  I knew that I did not care for how I felt during that reaction and that my recovery after chemo was not as easy as the last time.  I had a week of headache and lethargy.  Not myself at all.

Doctor explained that reaction was not good and that more Carboplatin may cause another reaction (very probable) with risk of lowered blood pressure which is not good at all.  Could end up in ICU.  We discussed the idea of taking a break for 6 weeks and revisiting chemo with another drug.  I was all for this.  I feel good.  The CA 125 is in a better place and I feel I can monitor my body to let my doctor know if anything is amiss during this 6 week period.

So for now I am in hiatus of sorts!  Glad not to have to get chemo but a bit nervous about what is happening inside.

Update on my Dad:  We have seen a surgeon, an oncologist and a radiologist.  All are quite negative regarding his prognosis and there is little hope.  We have been in contact with a pancreatic cancer specialist in Toronto and he ordered new scans and diagnostics.  They were all sent to him late last week for second opinion regarding his diagnosis of pancreatic cancer.  We are hoping for a slim chance of surgery or something.  Dad's quality of life is good and he is in good spirits.  Many people have come to see him and he enjoys the company.  We just wish he would eat a little more.  He is losing weight and can be quite weak at times.

Pictures of Europe

Promised I would post some pictures of our trip to Europe!

The iconic Eiffel Tower

View of Arc de Triomphe down the Champs Ellysees

Pyramid at the Louvre

Arc de Triomphe

Medieval Castle at Carcassonne, France

View of Nice from Castle Hill

Promenade des Anglais, Nice

Riomaggiore, Cinque Terre

Riomaggiore, Cinque Terre

Replica of Statue of David in Michelangelo Square in Florence

Another replica in the Palazzo della Signora.  Original is in the Ufizi Gallery.

View of Duomo and Sante Croce

The Vatican

Castel Sant'angelo

Colosseum

Trevi Fountain

Recurrence # 2 - Treatment #2

We are back from Europe and I will get my act together to download some pictures and post on this blog.  In the meantime there are a few pictures on my Facebook page.  And I could not resist and posted some internet pictures at the end of this posting.

The day after returning from Rome I was in the doctor's office at 11:30 am for my scheduled appointment.  Since we were away my regular appointment should have been 3 weeks after 1st treatment.  It was now 4 weeks.  Since my next treatment was imminent she found me a hospital bed and I was admitted within the hour.  (check my last post regarding the reasons for admittance)

Having done my paperwork they gave me a pass to return home as long as I was back by 10:00 pm.  The night nurse kindly was informed me my CA 125 count was at 65, down from 125.  This is good news in that it means the treatment is doing the job. 

So on Tuesday, June 25th my Carboplatin chemo started and as you will recall it is a long infusion.  My first treatment back in May went without a hitch but within the hour I started experiencing a reaction.  What a f**king drag.... Some of the symptoms were headache, red and itchy hands and red and itchy feet.  I also starting breaking out with some hives.  Usual course of action is to stop everything and give me more benedryl and steriods.  They have also starting using something called Singulair. 

Instead of finishing up by 9:00 pm it was well past 10:00 pm and the on call doctor wanted me to spend the second night.  What can you do?  Suck it up and read.  Up by 4:00 am though.....  All the steriods in my system have me wired and I found a computer in the family lounge.  What luck!

In other news we are unhappy to report that my Dad has been diagnosed with pancreatic cancer.  Had a visit with the surgeon while we were away but my Mom and Dad came away very unhappy with his negative prognosis and his lack of empathy.  So my brother has arranged meetings with several oncologists and radiologists to get second opinions and hopefully a treatment plan.  So at this point we do not know much.  This on top of his stroke in March is not great but we all pulling together as a family.  We have much strength!

Here are some pictures from our trip that I culled from the internet.  Just wanted to give you a taste of what we saw.  Michelangelo's Pieta is breathtaking in terms of the subject matter and the beautiful work.  It is made of marble and a fun fact... Mary is represented very youthful when she was probably a woman in her 50's with her 33 year old son.  Michelangelo was 23 when he sculpted this piece for a cardinal funeral monument.  Amazing.

La Pieta, St. Peter's Basilica in Vatican City

 

Coleseum in Rome

Eiffel Tower in Paris

Medieval City in Carcassonne, France

Beast is Back.....

When I am dancing with NED (no evidence of disease) you may notice that I don't post very often.  While I am living my life I don't always  relay all the good things about living life to it's fullest.  Things like the warm sun on your face, the smell of fresh cut grass, the look on your dog's face when you ask if it is time for a walk, the taste of a well crafted cocktail, the thrill of an upcoming vacation, a good laugh with family and friends, good food, etc, etc,......

These are the things I love and try to experience and enjoy everyday.  Then something comes along to knock you down.  And I hate to sound like a downer but sometimes it just pisses me off.......

The Highline

My last follow up appointment with the oncologist was April 25th.  My bloodwork indicated the CA 125 marker came back elevated.  This warranted a CT Scan which was scheduled for May16th.  By the way on May 17th we headed for New York with Dylan for the long weekend.  We had a great time and although the weather did not cooperate we did not let that stop us.  Unfortunately, Corina did not come with us.  She has finished her college program and is looking for work.  Anyone know of a health administration job opening?

Freedom Tower

Near Battery Park and NJ in the background

Dylan 

On May 22nd my oncologist let me know that the cancer was back once again.  There is a 3.5 cm tumour on the upper left hand side of my abdomen and some nodules through out the peritoneum.  Next we had the discussion of treatment which she wanted to begin right away.  I also wanted to start right away because we are leaving for Europe on June 7th and I want to have some semblance of health to enjoy ourselves.

My treatment protocol has been Taxol/Carboplatin regiment.  Very common and widely used for ovarian cancer all over the world.  However, like many people the Taxol has been debilitating to my body and so it is no longer an option.  It has left me with neuropathy in my hands.  Thankfully not my feet like some people.  Having more Taxol would only ensure further nerve damage in my hands and then my feet.  Not a good thing!  The treatment of cancer involves toxic chemicals that build toxicity in the body.  Major drawback...

Another factor in the treatment discussion is the length of time since my last treatment.  Last time I had chemo was September 2012.  In the chemo world the treatment is considered ineffective if there is less than 6 months since the last treatment.  I am at the 7th month mark and my oncologist had to decide whether to give me Carboplatin alone or with something else.  In addition you may recall from my earlier post that I reacted to Carboplatin the last time.  The answer to this is an extended infusion period to mitigate any reaction.

We decided together to go with Carbo only and very next day I had a call from hospital at 2:30 pm to ask me to come around 4:00 pm to be admitted so chemo could be administered all the next day.  How to make a dull situation a little more lively?  There is not much that can be done.  When I was not passed out from the benedryl I was fully awake and able to read.  I had several room mates during my time at hospital but I know from past experience that other cancer patients are not that chatty and I was not either.  I finally got to go home @ 9:30 Friday night.  Good news is that I did not have any reaction.  Just bored out of my mind.....

Genetic Testing

I just read a news article about Angelina Jolie and how she had a double mastectomy and reconstruction surgery.  She was found to have the BRCA1 mutation.  To me this just shows how she was proactive to get the testing done and take action to protect herself from breast and ovarian cancer.  I think this is awesome!

In my situation I had genetic testing after my treatment ended after my first bout with ovarian cancer in March of 2011.  Genetic testing is very easy.  It is a simple blood test.  It is sent to a special lab and the results come back within a couple of months.  Before any testing I sat down with a genetic counsellor at the cancer centre.  We discussed my family history and all incidences of cancer within the family.  There are actually very few incidences in the family but I qualified for paid genetic testing by our provincial government because of my recent cancer and my age.  I was found to have the BRCA2 mutation.

Some background info:

90% of all breast and ovarian cancers are considered sporadic, due to a combination of factors such as age, lifestyle, environment and chance.  The average woman's lifetime risk of breast cancer is in the range of 8-12% or about 1 in 10, and the average woman's lifetime risk of ovarian cancer is about 1.5% or 1 in 70.  The remaining 10% of breast and ovarian cancers are considered hereditary, due to an inherited mutation in a cancer-related gene such as BRCA1 or BRCA2.  Mutations in the BRCA1 or BRCA2 genes are associated with a high lifetime risk of breast cancer and ovarian cancer in women, as well as male breast and prostate cancers and possible other cancers to a lesser degree.  For individuals who carry a BRCA1 or BRCA2 mutation, each of their children will have a 50% chance of inheriting this mutation and also be at increased risk for these cancers.

A POSITIVE result indicates that a mutation has been identified in BRCA1 or BRCA2 which is known to be associated with increased lifetime risk for breast (40-85%) and ovarian (20-40%) cancers, male breast and prostate cancers, and possible other cancers. Genetic testing would then be available to blood relatives.

This means my chances of breast cancer has greatly increased and with this information we can take preventative measures like Angelina Jolie.  We had several meetings with the genetic counsellor to discuss what this all means and you can imagine how stressful this is.  I have not chosen the same route as AJ but my screening for breast cancer has stepped up a couple of notches.  I have an annual mammogram and a MRI.  This is the standard for high risk screening.

What this also means is that I inherited this mutation from one of my parents and it was found to be my father.  It also means he is at higher risk for certain cancers.  This also means he is now screened more frequently than before.  It also means my siblings may be at risk as well. And my children......

With this information it also means that my father's siblings and their children and their children may be carrying this gene and this gives them the opportunity to have meaningful discussions with their own physicians.  But I know that even though the information is out there it does not mean that people take action.  This is why I am so impressed by what Angelina Jolie did and at her age.  It is a brave thing because it is human nature to deny and therefore delay.

My Dad

Some of you may know that my Dad has suffered a stroke.  This happened March 10th.

Dad is out of hospital and is in a local rehabilitation centre.  Tests have shown that my Dad has suffered from a number of mini strokes in the past.  We did not know this and it only came to light after an MRI.  This explains some of his short memory loss which was thought to be early onset dementia.  This stroke has affected his thinking processes in that he has trouble putting words together to form a sentence.  He can answer questions with a short phrase but anything any longer gives him trouble.  He just can't find the right words sometimes.  There has been improvement and he is smiling and jokes occasionally.  He also knows all of us so we are pleased with this. He is now working with a speech therapist to regain his language skills.

He also does not have the use of his right arm from the elbow down including his fingers.  We are hoping that after much physiotherapy, which began immediately after the stroke, he will regain full use of his arm.  There has been some progress already.  He is walking with assistance and can maneuver himself with a wheel chair and his feet.  He is not allowed to get out of bed by himself as there is a risk to falling.

August 2012

My Mother goes to see him everyday to help out with his activities of daily living.  She makes sure he is shaved and brushes his teeth.  She also wants to ensure he is eating.  Tough to eat when one hand is not working well.  We can't rely on the nurses or personal support workers assisting with everything as they are so busy and short handed.  But my Mother is not babying him either.  She knows that in order for him to come home he has to be independent.  Baby steps .....

We Have Remission

Sorry for the long absence.....  This post has been in draft since November 2012.  I have not been able to put together the words to relay what my life is all about until now.

After my 6th chemo treatment on September 26th I went for a CT Scan on October 12th to determine if there was any visible cancer left.  This would determine whether I would need another chemo treatment at this time.  I returned to the hospital on October 16th to consult with my oncologist.  This meeting set off a major turning point to my life.

The oncologist, Dr. Califaretti, delivered the news that the CT Scan did not show any visible cancer which is great.  This is technically a remission.  So the series of treatments from June to September did the job they were supposed to do.  All good.  I forgot to mention that during my last treatment on September 26th and in receipt of the last chemo drug, Carboplatin, I had an allergic reaction.  After receiving it 11 times in the last couple of years my body decided it did not want it.  After easing off the dosage and giving me some drugs to help me along I finally finished treatment that day.  Can you imagine that my doctor reminded me that I had experienced this?  I had totally forgotten between September 26th and October 16th.  The mind does some crazy things in times of anxiety.

Back to our discussion on October 16th.  During our discussion my doctor, in a no-nonsense way, strongly suggested that I not return to work.  This startled me as I was fully expecting to go back.  But life has a way of reminding you of your immortality.......

This cancer is unrelenting and she fully expects it will come back within the next 15 months or so.  This is because my last recurrence came within this timeframe.  Medically speaking recurrence does not generally extend itself beyond this.  Is she correct?  Only time will tell.

So my decision not to return to work was a difficult one.  On the one hand I like working and it provides satisfaction in getting things done and having clients who are happy with my work. There is also the social aspect of the workplace which I always value.  But on the other hand work can be stressful and demanding.  Client commitments, sales targets, professional development and other business demands can be challenging.  The demands on your personal time is a given and I have always been of the opinion, required, if promotion and success is your ambition.  Alas these things are not quite as important to me any more......

So now I am a lady of leisure.  I have all the time in the world to do what I want!  Well my days are full and I wonder now how I fit a career in there.....  Strange.  I spend most of my time with the family naturally.

Here is a picture from last October when Hurricane Sandy hit the New York area.  This is right in front of my sister's apartment.  A huge tree just toppled over and luckily landed on the side walk and not the house.  Even though her home is inland Hurricane Sandy did much damage to the neighbourhood.  The area closer to the shore was very badly damaged and the clean up continues still.  The area of New York City near the shoreline in pictures.

Let's hope these lives can be put back together.