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.

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.

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.

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.

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!