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

Solo2 Clinical Trial

Princess Margaret Cancer Centre is a busy place.  I had to wait an hour to get my bloodwork done and then found out I was in the wrong place.  I have a port-a-cath and should have gone to Ambulatory Care for blood work.  Next time.

My appointment was for 10:30 but did not see doctor until 12:30 pm.  They are quite busy seeing the multitudes.  We left Princess Margaret at 2:30 pm.  We were there a full 5 and 1/2 hours.  I hope you never have to see an oncologist or the inside of a cancer centre.  Chances are you will because as people live longer their cells go haywire and cancer develops.

This was considered a first meeting and after discussing my medical situation the doctor seemed to think that I may be a suitable candidate for the Solo2 clinical trial.  This was not before he had to leave several times to confer with various researchers.  Seems most of my ducks are getting in order:  recurrent ovarian cancer, favourable response to a platinum drug (Cisplatin), BRCA2 carrier (they need to still see my genetic report from 2011), and CT Scans show some visible evidence of disease (they will have to verify this more).

They also decided I should finish up with my chemo treatments.  Usually a course of chemo is 6 infusions.  I have 2 more to go.  The study requires patients to begin the trial within 8 weeks of chemo ending.  Therefore, my last chemo should be the week of September 22nd and if accepted into trial I would begin no later than week of November 17th.  That is according to my calculations.

The drug they are testing is Olaparib.  As I stated in a previous post it is a drug that inhibits a cancer cell from repairing itself.  It is considered a maintenance drug which keeps the cancer from growing so that it lengthens the period of 'remission'.  That is what we are always trying to achieve although technically I have not been in remission since 2011.

Solo2 is a phase III trial and they are recruiting 264 people all over the world.  Because the researchers have not yet decided whether I qualify they wanted me to get registered in case the study closes between now and November.  If the study closes then I can still participate.  Of course they still have to definitively accept me into the study and I have to consent.  I was given a 23 page Study Information and Consent Form to read.  It is quite extensive in introducing the study, its purpose, a thorough explanation regarding its experimental status, charts explaining how often I need to visit hospital for tests and follow ups, all the potential side effects, my responsibilities as a participant, confidentiality, risks, etc.  I can drop out of study at any time.

On the one hand I hope to be accepted into this trial.  It is cutting edge science and could help me to attain some degree of remission.  Cost is picked up by drug company (AstraZeneca).  This study, if successful, could provide oncologists with another tool for maintenance treatment in future ovarian cancer cases.  On the other hand it is experimental.  Long term side effects are unknown.  Side effects while on drug could be unpleasant but maybe not.  At least with chemo my experience is a week of unpleasantness and a couple of weeks of normalcy of sorts.  And I could end up in the placebo group and get no benefit at all.  I still have several questions I want to ask of my assigned trial nurse and I have some time to fully consider this trial.

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!

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.

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.

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.

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.