Barcelona, Spain

The last leg of our trip was to Barcelona.  Even though the strike action was still ongoing in France our train from Avignon to Barcelona was not cancelled.  The high speed train ride was great when you actually get to sit down!

We spent 8 days in Barcelona and it was unforgettable.

Cafe time with friends

Frank Gehry Whale Structure on Beach

One of the many beaches in Barcelona

Interior of Palau de Musica - Magnificient

Parc Guell

Exterior of Sagrada Familia

Sitges - an hour south of Barcelona

Portion of ceiling of Sagrada Familia

Palau de Musica in Barcelona

Parc Guell

Avignon in Provence France

After Paris we traveled to Avignon via high speed train.  During our stay in Paris we were concerned with our upcoming trip to Avignon due to strike action.  This is common in France but the work stoppages all over France were the worst in Paris and it has been years since it was this disruptive.  We found out the night before our trip that our train had been cancelled.  So we scrambled to arrange a car rental from the airport so that we could drive the 7 hours to Avignon.

As we arrived at the airport we discovered there was one train that afternoon to Avignon and we were determined to be on it.  It meant no seats though.  Others were in the same boat as us and we all crowded on to the train.  We were lucky to happen on to the dining car so we had some room to walk about and occasionally sit on our luggage.  That 3 1/2 hours trip felt much longer but we were glad to be on our way.

Avignon is a great base to travel around Provence.  We rented a van and for 3 days explored the many small towns in the area.

Avignon Bridge on the Rhone River

Pont du Gard - A Roman aquaduct

Papal Palace in Avignon

Roman Theatre in Orange

Seguret

View from Le Crestet

So Much to tell you.....

I know, I know, I have been really bad at keeping this blog up to date!  Well I have been living life and sometimes I just don't feel like writing!  :)

Since the last post I have had 2 chemo treatments and have been to Europe.  It has been a whirlwind of activity and now things are very quiet.

Just before leaving for France I was admitted to hospital on June 2nd for chemo.  I was given Cisplatin for at least 6 hours and prior to this I had 24 hours of pre treatment which consists of steroids, benedry, and cingulaire.  Because of my tendency of reacting to platinum drugs I need to be medicated to the hilt to receive chemo.  All went well and I had no reaction!  Thank goodness!  On June 4th I was released from hospital and went home to get ready for our June 6th flight to Paris!  Let me tell you my health was not the best.  After chemo I get some wicked headaches due to all the drugs and I generally feel poorly.

On June 6th we left for Paris and the flight was not comfortable at all for me.  After paracentesis the belly is tender and I still had some bloating which is uncomfortable.  My bowels are not at their best (to say the least) and I just was not feeling well.  However, we march on and try not to think about these things while on vacation!  We are in Paris! And what a great city it is!

The Iconic Eiffel Tower

From Arc de Triomphe

Arc de Triomphe

Notre Dame

Family members in Paris.  My Mom's Aunt and her family.

We met up with our friends, Jill and Michael.  We spent the rest of the week together in Paris and then moved on to Avignon in the south of France.

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!

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!