Planning for the future
Sorry about this long post. I am trying to organize my thoughts by putting them on "paper".
Quick recap:
I am BRCA+, diagnosed OVCA 3C in May 2012, had optimal THBSO, 7 rounds of IV Carbo/Taxol. After 9 months remission recurred in Sep. 2013, refused more chemo, no treatment for 8 months. Since Apr. 2014 been on PARP inhibitor (Rucaparib) trial, it worked well for 8 months but now my CA125 is going up (141), however my last CT scan was still clear.
Objective:
To buy more time by finding another clinical trial as easy and effective as PARP. There are no trials currently available in Canada for platinum-sensitive recurrent OVCA. Trust me, I checked and checked again. Having been on one PARP disqualifies me from all other PARP trials.
Yesterday I met with my ONC. He promised to keep me on the trial drug for now in hopes of it slowing progression down. He claimed that it could be months till the beginning of symptoms and was reluctant to discuss other trials. However based on my own analysis of CA125 behavior and historic data I have a more conservative prognosis and estimate that symptoms (abdominal pain and ascites) will return around end of February - beginning of March. Which leaves me 2 - 2.5 months to come up with the treatment strategy. So being a control freak, I am back to the drawing board; if you don't do it yourself, no one will do it.
Best case scenario - new trial:
There is one trial (NCT02326844) in Bethesda, MD testing PARP inhibitor BMN673 (Tolazaparib) after the failure of other PARP inhibitors. It's a viable option but requires travel and raises a common sense question: why would BMN673 be any better than similar drugs of other pharma companies?
There is a phase 1 trial (NCT01609556) of I MGN853 for FOLR1-positive tumors, but enrollment is on hold worldwide for some reason.
But there is something in the pipeline that I am excited about. If PARP inhibitors increase PFS and VEGF inhibitors (anti-angiogenics) increase PFS, shouldn't they work even better as a combo? They tested this hypothesis in phase 2 trial (NCT01116648) of PARP (Olaparib) and VEGF (Cediranib ) together and it seems to be true - 18-19 month PFS for both BRCA- and BRCA+ respectively. Both drugs are taken orally and have unpleasant but manageable side effects (fatigue, diarrhea and hypertension). http://www.healthcanal.com/cancers/ovarian-cancer/55059-drug-combination-delays-worsening-of-disease-in-women-with-recurrent-ovarian-cancer.html
The good news - two phase 3 trials of Olaparib / Cediranib combo sponsored by NCI / NRG Group are coming to town in early 2015 for both platinum-sensitive and platinum-resistant recurrent ovarian cancer. There is no trial number and date yet. Yesterday night I emailed lead investigators and I am still waiting for their reply. Now I am keeping my fingers crossed for this new trial to start enrolling patients soon. I have enough energy and chutzpah to insert myself into the investigative arm of this trial by any means necessary. I just might not have enough time.
Worst-case scenario - chemo (well, next to worst):
If I can't find a suitable clinical trial in time, I have to consider chemo. I don't want it, but it beats ... the other worst-case outcome. I am still platinum-sensitive. The standard option would be Carbo/Taxol. I hate Taxol with a passion (peripheral neuropathy, alopecia, etc.). Another options are Carbo/Gemzar (affects blood counts) or Doxil (Caelyx). Carbo/Doxil is a good combo but difficult to obtain in Canada. Avastin has not yet been approved in Canada and is not covered by insurance. Gemzar and Topotecan as single agents are weak and unlikely to work.
Short-term plans:
Not to let this stuff get to me. Have as much quality of life as possible. Ignore negative people. Get my makeup, hair and nails done. Eat chocolate ice cream. Buy a new purse. Race my car. Watch every new movie. Hang out with friends. Go to Vegas. Go to Jamaica. Live.
I wish everyone a Happy and healthy New Year! I hope to see all of you on the board in 2015.
Love,
Alexandra
Comments
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Happy and healthy New Year for us all!
Dear Alexandra,
I so admire your ability to be pro-active with your treatment and hope that you will be eligible for one of the new trials. I also appreciate your willingness to share what you know with all of us. I know chemo is your last resort (and I surely hate it too), but it does work (for a while), so I'm glad to hear it's on the list, if only at the way bottom.
Now that I'm 4 months away from chemo, I feel about a thousand times better. I had carbo-gemzar-avastin. It was easier than carbo-taxol, but dreadful.
Am I glad I did it.?........yes......Leaving for a week in the DR on Sunday and grateful for that!
Here's to staying alive and living well!
xoxo Susan
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Thank you!scatsm said:Happy and healthy New Year for us all!
Dear Alexandra,
I so admire your ability to be pro-active with your treatment and hope that you will be eligible for one of the new trials. I also appreciate your willingness to share what you know with all of us. I know chemo is your last resort (and I surely hate it too), but it does work (for a while), so I'm glad to hear it's on the list, if only at the way bottom.
Now that I'm 4 months away from chemo, I feel about a thousand times better. I had carbo-gemzar-avastin. It was easier than carbo-taxol, but dreadful.
Am I glad I did it.?........yes......Leaving for a week in the DR on Sunday and grateful for that!
Here's to staying alive and living well!
xoxo Susan
Have a wonderful holiday Susan! After what you went through you deserve it and so much more.
All the best!
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Alexandra, you have brought
Alexandra, you have brought such a spark of life to which is often such a dismal disease. You are right about "if you don't do it yourself, no one will do it" and you are always generous to the women on the gynie boards. Here is hoping only the best for you and all the women on the OC board.
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New Year
Hi Alexandra,
Happy New Year to you my friend.
I have been following your posts and always like what I read about your research into trials and living life in general.
In my opinion, you have always had the chutzpah to get the job done right for you !
Hang in there and live life to the fullest the best that you can.
Happiness to you and yours,
Lisha
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Thankyou Alexandra for theAlexandra said:Thank you!
Have a wonderful holiday Susan! After what you went through you deserve it and so much more.
All the best!
Thankyou Alexandra for the details you give us about the trials coming up , I like you are constantly trying to find new treatments my numbers are slowly creeping up and I only finished 1st line treatment in sept I'm still on avastin every 3 weeks but it looks like it's not doing much, my last ct dec was ok some hazing on the omentum but lymph glands and organs clear which is good so it's a waiting game I guess. I'm waiting to be tested to see if I'm braca pos the nhs in uk doesn't do this as standard but I've asked , there are a few parp trials here in London I could try , I too hated the carbo taxol combo , it may kill the cancer but it damages us so much too . i hope some trials come up for you , jue x
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Thinking of you!
Alexandra:
Just love how you always see something positive. Great advice about ignoring negative people. My husband and I started doing this about 5 or 6 years ago. It is funny, though, how the negative tries to come at you from different angles. Always searching for a weak spot. So the more positive people you have around you the better your defense. Please know I am on your side of the fence!
You are a real fighter and your own advocate because as you well know if you don't fight for yourself, no one else will. If I can help in anyway (ie research), let me know. I will try to do my best to help anyway I can.
Looking forward to hearing about all your fun adventures for 2015.
My best to you.
Kathy
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Alexandra
You are such a blessing to this forum. Your intelligence, humor, strength are so valuable. And your modeling of 'how it is done' for those of us unwilling to endure more chemo, but are willing to pursue clinical trials is an inspiration.
And your 'short term plans' are spot on. Thank you for the reminder to LIVE, not simply exist and endure. As for those negative people, following my cancer, I too have cut them out of my life and now seek to surround myself with quality human beings from now on!!
So, thank you for your generosity and wishing you the best health you can find in the coming year!
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Hi AlexandraLisa 00 said:Alexandra
You are such a blessing to this forum. Your intelligence, humor, strength are so valuable. And your modeling of 'how it is done' for those of us unwilling to endure more chemo, but are willing to pursue clinical trials is an inspiration.
And your 'short term plans' are spot on. Thank you for the reminder to LIVE, not simply exist and endure. As for those negative people, following my cancer, I too have cut them out of my life and now seek to surround myself with quality human beings from now on!!
So, thank you for your generosity and wishing you the best health you can find in the coming year!
By "organizing your thoughts", you've once again provided us with very useful information. I hope you accomplish all of your short-term goals in 2015, along with kicking your cancer's butt to the curb too.
Wishing all of us a happy and healthy new year!
Warm hugs,
Kelly
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I admire your analytical
I admire your analytical approach. I have a tendency to go with the flow. I'm finding that my attitude has changed some with this second recurrence. I guess it's having to come to terms with the fact that this monster is never going to leave me alone. I wish you the very best and if anyone can find answers, it's you, Alexandra. Your short-term plans sound wonderful.
Karen
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Alexandrakikz said:I admire your analytical
I admire your analytical approach. I have a tendency to go with the flow. I'm finding that my attitude has changed some with this second recurrence. I guess it's having to come to terms with the fact that this monster is never going to leave me alone. I wish you the very best and if anyone can find answers, it's you, Alexandra. Your short-term plans sound wonderful.
Karen
I always learn so much from you posts. Thank you for putting your thoughts on paper. You are a blessing.
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Thank you all for the lovely comments and warm wishes!
I tend to over-calculate the crap out of every situation and to leave emotions out of my decision-making.
I approach my cancer the same way I would approach any other project: collect data, analyze the market for potential solutions, narrow them down based on unchangeable criteria and experts' opinions, determine the timeline and resources, develop flexible algorithm, optimize pros and cons, negotiate and implement the best solution, be prepared to monitor progress, cut losses and adjust for unpredictable variations.
Sometimes I feel like I am living in a real-life video game with 1 remaining life: keep playing until the message "no more moves" comes up. When that happens, I will shut my eyes, plug my nose and put all my hopes into the cancer-fighting properties of broccoli.
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Alexandra, our role modelAlexandra said:Thank you all for the lovely comments and warm wishes!
I tend to over-calculate the crap out of every situation and to leave emotions out of my decision-making.
I approach my cancer the same way I would approach any other project: collect data, analyze the market for potential solutions, narrow them down based on unchangeable criteria and experts' opinions, determine the timeline and resources, develop flexible algorithm, optimize pros and cons, negotiate and implement the best solution, be prepared to monitor progress, cut losses and adjust for unpredictable variations.
Sometimes I feel like I am living in a real-life video game with 1 remaining life: keep playing until the message "no more moves" comes up. When that happens, I will shut my eyes, plug my nose and put all my hopes into the cancer-fighting properties of broccoli.
You go, girl!
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Hi, thank you,
And so much more. I so enjoy and have been buoyed as well as informed by your posts as I have dropped in on this board on this emotional roller-coaster (and the canadian one that was discontinued or whatever happened to it).
Just to share my experience, I am now on chemo for the third time - very reluctantly. Carbo/Taxol. Sucks indeed - but there are some good days.
My CA 125 started going up again in Sept 2013, having finished last chemo at the end of Jan/beginning Feb 2013. Finally CT scan showed growth the following March 2014, bit more in July 2014, and finally in October significant growth, especially in my liver. I started chemo again end of November. Very reluctantly. Am hoping to get into a PARP trial at Princess Margaret in Toronto for consolidaton therapy, but waiting to see if I qualify (tumour type), and if it is practical travel and logistics-wise. Anyway, my point: essentially a year or more from CA125 increase to symptoms.
It may be quite some time before you have symptoms. I certainly hope so. So enjoy lots and lots of chocolate, pampering, travel, and all the things you love.
Thank you very much again for your posts and your generous sharing of your thoughts and information gathering.
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Clinical trials
Thanks for the info ! I'm currently trying to decide what to do. Caa 125 is beginning to rise so I will need to make decision in next month or so.
Happy new year to you as well!
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Short term plans
I think you are absolutely on the right track with your SHORT TERM PLANS. Don't worry so much; maybe that is easy for me to say right now, since recently finishing treatment for a recurrence of stage IV OC, I do not want to go thru another round of chemo.....the cisp./taxol really did a number on me, causing me to get several iron treatments and a couple of transfusions, along with severe reaction to the gaba(something) drug to treat severe neuropathy. I even told my onc. several times that, since I was scanned at the end of treatment, I WILL NOT be re-scanned again, now, because chances are I will not seek treatment. I will begin to gradually feel better, go visit my kids and grandkids this summer, tour a bit in our rv (we live in it full time)....ENJOY A BIT WHILE I AM FELLING BETTER! And I will enjoy the deep dish Chicago pizza without feeling guilty; I will have the hot fudge on my ice cream if I want it; and I will spend the day watching Netflix if the energy level goes down. I wish you luck in finding a new trial.........until then, ENJOY LIFE
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information
Alexandra, information about chemo drugs you give is very tru. In my 8 years surviving I did try all of them two three times, they work exactly as you describe.Thank you for your post and i told you before i love you for good advices you giving ours survivors .God bless you!
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Looking for a solution
Have read & reread your thoughtful, informative post, hoping to get to a point where I can assimilate all your helpful info & apply it to my own situation. Thank you for laying it all out so clearly as always.
After euphoria just before Christmas with the news that my CA125 was descending--a little, relatively--I am in the doldrums now, having just learned I can't continue on Doxil due to bad side effects & Doxil's ineffectiveness. PET scan this week showed some tumors somewhat smaller, but some have grown and there are also new ones since my Oct. PET scan. In the immortal words of the radiologist: "Response to therapy is variable."
Waiting now for another appointment in a few days with the gyn/onc. I expect he'll suggest chemo with a new drug, but I worry there's not much left to choose from. Carbo-Taxol, Avastin & Doxil all seem off the table, since they never worked for me or no longer do. Maybe one of those clinical trials for carboplatin-resistant OC will open up somehow.
Thank you again for outlining your thoughts. It surely helps me to focus my own.
Best wishes, c.t.s.
www.CaringBridge.org/visit/CaroleSeaton
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Alexandra's postseatown said:Looking for a solution
Have read & reread your thoughtful, informative post, hoping to get to a point where I can assimilate all your helpful info & apply it to my own situation. Thank you for laying it all out so clearly as always.
After euphoria just before Christmas with the news that my CA125 was descending--a little, relatively--I am in the doldrums now, having just learned I can't continue on Doxil due to bad side effects & Doxil's ineffectiveness. PET scan this week showed some tumors somewhat smaller, but some have grown and there are also new ones since my Oct. PET scan. In the immortal words of the radiologist: "Response to therapy is variable."
Waiting now for another appointment in a few days with the gyn/onc. I expect he'll suggest chemo with a new drug, but I worry there's not much left to choose from. Carbo-Taxol, Avastin & Doxil all seem off the table, since they never worked for me or no longer do. Maybe one of those clinical trials for carboplatin-resistant OC will open up somehow.
Thank you again for outlining your thoughts. It surely helps me to focus my own.
Best wishes, c.t.s.
www.CaringBridge.org/visit/CaroleSeaton
I am from the uterine board and often "check in" with my sister 's in the ov board, as my cancer is most similar to ov. I was diagnosed with Uterine Papillary Serous - a grade 3 cancer- stage 3a. Presently NED since the end of treatment in March, 2014. I sometimes find my heart in my throat when I read your post , Alexandra. I appreciate your intellect, thoughtfulness, passion for living , wisdom and of course , your chutzpah! Like you, I want to grab life with all that I have and go on a wild ride. I want to live, live , live! I don't take anything for granted including my survival. Eat that chocolate ice cream everyday if you choose to do so, go to Jamaica and climb Dunn River Falls (I did!) or visit Falmouth to see Bob Marley's birth and resting place and legally smoke pot there if you want to. I like your statement about avoiding negative people, as I now strive to do just that. I protect myself from many things, now. I use to rant about my political leanings and now I refuse to allow the sickness we Americans call a two-party system of government to affect me. I just don 't care to be exposed to the bizarre and brutal hatred festering in Congress. They can proceed without me.
I wish you the very best, Alexandra, and thank you for all the insight you have so humbly shared with us!
Cathy
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