Wednesday, September 17, 2014

Ovarian Cancer Walk of Hope

Sunday, September 7th 2014 was a glorious day with lots of sunshine and wonderful fellowship.  Our team 'A Late Summer Knight's Dream' raised almost $4500 and we were the second highest fund raisers in the area!  Next year we are going to do better!

Update:  I wanted to share this newspaper article about our Walk.  It was a surprise to me when they asked for an interview.  I am pleased with the final result.

http://www.kitchenerpost.ca/whats-on/walking-for-hope/

Survivor's Ribbon

Most of my crew

Angie and Joanna

Angie, Me and Joanna

Caroline and Me

Elaine, Caroline, Katrina and Me

Joanna, Katrina, Elaine and Caroline

Margery, Marilyn, Mom and David

My Teal Toes!

Wednesday, August 27, 2014

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.


Friday, August 15, 2014

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!

Saturday, July 26, 2014

3rd Treatment of Cisplatin

Just before my last treatment on July  22nd I met with the oncologist as we always do.  My CA 125 is now 150!  As you will recall this number was 597 back in May.  This is wonderful!  Cisplatin is doing the job of knocking down the cancer and we will go the full 6 rounds.  I should be finished up by end of September.

Treatment of Cisplatin is not easy as I have talked about in the the past.  I am admitted to hospital for a couple of days in order to get pre medications into me for 24 hours before we start chemo.  This is to prepare my body to accept (fool) the chemo otherwise I react severely and this is dangerous. I have been on this hyper sensitivity protocol for all 3 infusions.  I must comment that the medical personnel that take care of me while in hospital are fabulous.  They know me and know my situation.  I am under constant care and during my 6 hour infusion of chemo they are close by in case I react.  

It is now the 4th day after chemo with Cisplatin.  My constant headache has finally left me and I feel somewhat normal this morning.  The nausea has decreased considerably and I can manage to eat a regular meal.  Cisplatin has been the hardest chemo to deal with so far.  It may also be because of the pre meds as well.  I am very lucky to bounce back fairly quickly after my chemo treatments.  The tiredness and fatigue is very real but I am able to pace myself throughout the day with small rest periods so that I am not completely non functional.  Good nutrition and mild exercise is very helpful.

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


Thursday, July 17, 2014

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.