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.