5th International Symposium on Hereditary Breast and Ovarian Cancer: Twenty Years of Advances

This Tuesday I am travelling to Montreal to attend a BRCA symposium.  This event coincides with the 20 year anniversary of the discovery of the BRCA gene mutation.  For 3 days this international symposium brings together clinicians, researchers and medical personnel to talk about hereditary breast and ovarian cancer.  This scientific conference is arranged by the Hereditary Breast and Ovarian Cancer Foundation.

A feature of this symposium is a day for lay people.  This all day event is designed for people living with the BRCA mutation and the agenda provides to up to date research and clinical information.  It is open to anyone with an interest in this field.

My objective is to learn all I can about BRCA mutation and to hopefully network with some of the researchers and clinicians.  I also hope to meet other people who are in my situation and learn about their own experiences.

For those of you not familiar with BRCA genes, here is a short video that clearly explains the mutations I have been talking about.

Appointment at Princess Margaret

On Monday, April 14th I traveled to Toronto for an appointment at Princess Margaret Cancer Centre (PMCC).  I was to meet with Dr. Amit Oza to discuss clinical trials.  I actually met with Dr. Les Levin who is a member of the gynecological cancer team.  We had a great chat for about 1/2 hour.

He came to the meeting fully versed in my condition with the help of the summary provided by Grand River Cancer Centre.  He said it was a very good summary and the team had reviewed it.  I also brought with me the last 4 CT Scans and he had already reviewed those as well.

Basically, the end result of our discussion is that he and the team decided that it was unclear whether I am 'platinum sensitive' or 'platinum resistant'.  This is a very key criteria for the studies they conduct at PMCC.  I was unclear what these terms meant but he explained it very well.

Platinum sensitive:  When given a series of treatments of platinum based chemotherapy drug and a patient is disease free (not visible in a CT Scan)  for a period of 6 months or more months.  One drug of this type is Carboplatin.

Platinum resistant:  After being given a series of treatment of platinum based chemotherapy and patient shows growth of visible disease within 6 or less months.  The patient is said to be resistant to the treatment.

In my situation the team at PMCC doesn't know according to the information in my file.  My last treatment of Carboplatin in June 2013 resulted in a severe allergic reaction.  This was my second treatment in the series and my doctor and I decided we should stop treatment and take a break.  By September of 2013 my CA 125 was up 40 points to 386 and a CT Scan in October showed visible evidence of disease.  My doctor and I discussed using a different drug to avoid further allergic reactions and this is when I started the first of 5 treatments of Doxil.  When reviewing this information it is unclear whether I am 'platinum sensitive' because the number of treatments I had with Carboplatin were too few to determine what effect they had.  On the other had could I be 'platinum resistant' because I started treatment so soon after the last one but again it was only 2 treatments.  Perplexing as Dr. Levin expressed.....

Clinical trials are very regimented and almost of a military form.  The studies have to follow strict guidelines or else the researchers cannot draw meaningful conclusions which is what we want from clinical trials and the advancement of medicine.  So for this reason I currently do not qualify for any of their studies.  However, in his opinion, I currently do not show much disease growth in my CT Scans from January to March and thinks I should just take a break from treatment.  ( I am all for this.  My side effects are subsiding quite nicely.)

As a clinician he is suggesting my oncologist try another platinum based chemotherapy the next time (Cisplatin).  There is the risk of another allergic reaction but it would be administered while admitted to hospital.  This will help me in terms of disease management and to determine whether I am 'platinum sensitive'or 'platinum resistant'. In fact there are still many other drugs for the treatment of ovarian cancer that have not been used.  He mentioned gemcitabine, topotecan, etc.  I felt he listened to me and he answered all my questions.  I left there feeling quite optimistic and made my way in the rain to the nearest Winners store to shop before hopping the train back home.

I Have a Meeting with Dr. Amit Oza at Princess Margaret

My visit with the oncologist on March 28th relayed the results of the CT Scan taken on March 21st.  Scan is showing a growth of about an inch in the upper left hand abdomen and nodules of disease on the peritoneum.  Still looks ok based on the scans from January but something is happening and it is raising the CA 125 numbers.

Our discussions centred on getting me into a clinical trial.  Princess Margaret is still on the radar as my oncologist was told another doctor was being consulted regarding my condition.  PARP inhibitors are the new treatments on the horizon and still in trial phase.  Some trials have had great results and if I can get into one that would be awesome.

Couple of days ago my oncologist called to say that Dr. Amit Oza was interested in my case and in meeting me.  She confirmed his interest in me is because of the type of ovarian cancer I have, the BRCA2 mutation I carry and that I am platinum sensitive.  A meeting has been arranged for April 14th.  I hope to discuss my condition with him and the potential of a clinical trial using a PARP inhibitor.  I am going to the meeting prepared with my questions written down.

This turn of events both excites and worries me.  Exciting in that I may be entering a trial that is part of a larger picture in the future treatment of ovarian cancer.  How pleased I will be if this treatment slows the progression of disease.  But I am also worried that even though the results may be promising for some, what if it is not for me?  What if it does nothing and things just continue to worsen and grow?  Welcome to the thinking process of anyone with disease.

Physically I cannot control what goes on with my body except to take care of it as best I can through nutrition, sleep, exercise and attitude. More importantly calming my mind is the greater challenge.  How do you face the challenge of the condition and remain optimistic, calm and at peace.  It is difficult.  Occupying the mind with tasks and projects is one way that works for me.  Spending time with family and friends is another way.

Filling ones day is not hard.  There is always a myriad of things to be done in and around the house.  Even now in between paragraphs I am watching a robin outside in the backyard.  I wonder if he is scouting for a place to nest.  The key is to keep the mind occupied and focused.  This is one of the reasons I like to sew.  I constantly am thinking about future projects, checking out current fashion trends (I don't dig the current pastel trend), searching online for fabric deals and actually working on the current garment.  Nothing like several hours of concentrated effort in ripping a jacket apart and resewing it to keep my mind free of worry and concern.

I am also planning a trip to Europe this June.  I spend many hours checking out the forums on TripAdvisor to learn everything I can about a location, local culture, transportation challenges, currency, local foods, etc.  Rick Steves's books are my best friends!  I plan most days though I don't plan a minute by minute itinerary.  Lots of down time is allotted because you must spend some time at an outdoor cafe with a coffee or wine and watch the world go by!

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.