There is Nothing Permanent Except Change.

This past week I received the results of my April 5th CT Scan.  The lesion they follow for the purposes of the clinical trial is still showing no progression which is good news but the scan also shows evidence of ascites build up.  It is not so much but 5 days later I can definitely feel it and it is uncomfortable.  Also my CA 125 has been on the rise for the last few months.  It is now 219 as of April 19th from a record low of 13 on August 15, 2015.  The upswing in values has rapidly increased since February.  In other words it is now rising quickly.  All this evidence is pointing to the fact that treatment from this clinical trial is not as effective as it has been in the past.  I can't complain though.  I have had a good long run.  One year actually.  That is the longest any treatment has kept the beast down.

The good folks at Princess Margaret are lining up the next line of defence.  We have applied to AstraZeneca to their Managed Access Program for Olaparib which is something called a PARP inhibitor.  PARP inhibitors can destroy cancer cells that have abnormal BRCA genes, but do not destroy normal cells.  I have the BRCA2 mutation.

Olaparib has not been approved by Health Canada but it has been in the U.S. by the FDA.  This access is provided internationally for those countries where it is not yet approved.  Once approved it will be available via prescription, however, I understand that it is very expensive and many drug plans may not pay for it.

This approval for Managed Access may take a month or so and then I will be part of a new study. In the meantime I am continuing on the trial because of the good results of the scan although the ascites is building up.  This is something we can deal with although I never feel it is frequent enough.  Most hospitals will not perform a paracentesis unless there is a considerable amount of fluid to drain.

Once it is deemed that disease progression is occurring then I will switch over to Olaparib treatment which consists of taking about 16 capsules a day and monthly clinic visits.  Much better than going to Toronto for weekly chemo treatment........

A couple of weeks ago my daughter and I went to Toronto for a few days to be tourists.  We had a good time and had some good quality time together.

Aquarium

 St. Lawrence Market

Aquarium

Royal Ontario Museum

Another good scan

My life has taken on this rhythm:  1 treatment per week for 3 weeks then one week off and then 3 more treatments then a CT Scan.  And another week off.  Cycle starts over as long as CT Scan shows stable disease.  This means not more then 20 % increase in visible disease and a bunch of other criteria that is studied by the technologist and the reasearch team at PMH.   Most of my disease locations are about 1.3 cm to 2.5 cm.  Also there is sprinkling of small spots within the peritoneum.  These are not measurable but exist as is typical with ovarian cancer.

There is also the CA 125 tumour marker measurement that is taken once a month.  This measurement has been creeping up the last several months but taken on its own merit is not 100% foolproof.  Current reading is up to 88.  It is also a test that is considered along with the CT Scans, my physical examinations and my verbal account of my general well being.  Nothing is simple.

Angel knows how to relax......

My scans of December 21st, 2015 and February 9th, 2016 were both good and progression of disease is classed as 'no progression'.  This is very good news and although I continue to worry I try not to think about it and look forward to my one week off when I do not have treatment and do not have to travel to Toronto!  I can't believe I have just started cycle 13.  It is almost a year of treatment on this clinical trial.

On the weeks of treatment my week is up and down in terms of my reaction to chemo and trial drug.  Wednesday and Thursday I am fairly wired and can do all the things I need to do around the house in terms of meals, laundry, cleaning, etc.  Those mornings I can get up @ 4:00 am and enjoy some tea while the house sleeps.  I try and get back to bed by 6:00 am to get some much needed sleep but sometimes it is impossible.  This is all the effect of dexamethasone which is a type of steroid.  By Friday I seem to crash and that day is ususally a down day.  A day to catch up on my shows that I have been recording.

One appointment that I went to in January was to the 'Pain and Sympton Management' department or 'Palliative Care' a name they don't like to use with someone like me who is still high functioning while managing through cancer.  ( I don't like to say fighting cancer.)  They are there to ensure cancer patients have the best quality of life.  And they are also there for the loved ones.  They are team which includes doctors, nurses, occupational therapists, physiotherapists, pharmacists, psychiatrists, social workers, spriritual care provider, and volunteers.

For me we discussed my current challenges with some discomforts and the doctor adjusted some of my meds and prescribed some others. We also discussed the merits of medical marijuana which is a part of their therapies.  These substances, which are also available in pill form without the highs, are most suited for patients with nausea, vomiting and chronic pain.  Luckily for me these are not major concerns for me and I take other good meds for these right now.  I next see them in April.

So I am very happy to be under their care as well are my primary medical team which are more focussed on my physical self, side effects and my emotional well being as a result of the clinical trial.  They are there to to help me deal with the cancer itself and how we manage through the disease with appropriate treatments.

Our 11 year old Cyrus!

Good News.......

I have been participating in this trial for several months and have successfully completed 4 cycles.  My CT Scan in May showed very little disease and my most current CA 125 indicates I am in normal range.  Normal range!  I have never been in normal range since the beginning of this journey!  This treatment is really doing something and I hope it continues.  I am feeling very well and am physically strong.

In June we traveled to Italy for 16 days.  We visited Sicily and then spent time in Rome and then the home town of my mother's.  It was a wonderful time and I am grateful to have had the chance to go to Europe once again.

Typical street in Ortigia

View from our terrace in Ortigia

Street level near our apartment in Ortigia

Fountain in Archimede's Square in Ortigia

Results from Mt. Etna erruption

One of the Silvestri craters

Market in Catania

View of Mt. Etna from Taormina

Another view of Mt. Etna

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!

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.

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!

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.

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!

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.

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.

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.

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!

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.

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