Introduction - looking for third round treatment experience

lesleylaura

Hello all and thanks for your attention and responses,

I was diagnosed with stage 4B high grade serous cell carcinoma in November 2018. I have been through total surgery: hysterectomy, appendectomy, and removal of omentum ; 2 rounds of chemo and am now facing the decision about whether to proceed with another round of chemo which is projected to have a 30% success rate.

I want to hear about others experiences with paclitaxel spread over 3 weeks.  I understand everyone is different so I cannot expect my experience to mimic others so please chime in and be one of a few or hopefully several responses. I am presently living alone independently, able to go for 90 minute walks on level surfaces and have pretty good quality of life. I am afraid that I will spend two months in treatment, the treatment will be ineffective and the end of my life will have be in illness. Remembering Popeye's friend Wimpy - I'd rather have a hamburger today.

First round was carboplatin and paclitaxel - once every 3 weeks x 6 cycles
It was tough, couch bound for 5-7 days after each treatment, some vomiting, progressive increase in foot neuropathy resulting in no paclitaxel, only carbo the last treatment due to neuropathy, went 12 months before new growth on CT. (neuropathy significantly reduced 3 months after treatment ended-yeah!)
Second round was carboplatin and gemcitabine, 21 day cycle - C&G day 1, G only day 8, then a week off.  Several times neutrophils and platelets too low so treatment was delayed a week. Felt unpredictably lousy and well through the entire 21 day cycle which kept me close to home last summer, no walks or day trips.  On reflection I was like the frog in a pot of boiling water. Wouldn't have survived if I had jumped into the boiling water but because it was being heated gradually I stayed in the pot. After 6 cycles drugs continued to work so was recommended to have 3 more cycles however when blood counts didn't recover after 2 weeks and I am palliative "drug holiday" was recommended.
After 3 months CT shows changes and CA125 is elevated. 
Now I am told that Carboplatin is no longer effective and I am offered the same dose of paclitaxel but over 3 weeks then a week off. 
I am in BC. 

Thanks again for your attention,

Best,
Lesley

Fearless_Moderator

@lesleylaura I'm so glad you found us and have joined our community. Please know that you're not alone. This group comprises over 600 survivors across Canada, all here to share experience, encourage and support your journey.  

Other than being stage 3c, versus 4 your experience somewhat mirrors mine and your question certainly resonates with me.  I am accepting of the fact that by virtue of the nature of my OVC, I will never be cured (yes, I do believe in miracles but I'm also pragmatic) and often wonder how long I will consent to treatment to extend my lifespan versus opting for a higher quality of life towards the end.  It's sure a struggle some days.

To date, I have had two recurrences. One a year and half after finishing front-line treatment which consisted of surgery and then six rounds of Carboplatin and Gemcitabine (my system couldn't tolerate Paclitaxel). For that first recurrence I was fortunate that a unique clinical trial was available for which I qualified and that trial managed my recurrence with out the necessity for chemo.  After almost two years the drug failed and I am now undergoing chemo for this third recurrence, chemo being 6 cycles of Day 1 Carboplatin and Gem, Day 8 Gem only, Day 10 a Lapelga shot to boost my neutrofils and two weeks off (in all a 28 day cycle versus the 21 day cycle I was on the first time).  I am now heading in to cycle 4 on the 24th. So far my response rate has been very high so in hopes of a full or acceptable partial response at the end of the 6th cycle, but prepared to go a full 9 if recommended.  What's next?  A PARP for maintenance is not an option for me so it will likely just be a matter of time before the next recurrence and how that's treated will be subject to whatever is appropriate at that time. I actually don't dwell on it anymore.  When it comes back, we'll deal with it then.

For you, all I can say is that I don't look at statistics.  I'm in my fifth year of survival so right now I've beaten the odds they first gave me.  The trial I was on was forecasted to be a 50/50 chance of any effectiveness and that was only intended to stabilize my growth at the very low level it was when discovered. Instead, the drug shrunk my tumors by 75% in the first three months. It went on to stabilize growth for another year when they had projected no more than 3 months.  So, were it me, I'd ignore the 30% chance and go for one more round...or at least try it before throwing in the towel.  But before that, ensure my oncology team had explored all options for treatment for me...including clinical trials.  I'm sure they have but it never hurts to ask the question about alternatives and why the paclitaxel is the recommendation.  As I said, I do believe in miracles. When I recurred the first time I had no expectation that there would be something else out there for me other than traditional chemo. Timing was that I was given a miracle, for a time.  

But whatever, it's your life and your choice how it's managed and how you want to live it. It sounds to me like you are well informed and understand the consequences of no treatment versus stopping that level of intervention.  Whatever you choose I wish you peace and comfort.  Please use this community to reach out any time we can help, if it's only to lend a ear or a shoulder to lean on.   In the meantime, Lesley, I'm hopeful you'll hear from more of our sisters who are in the same situation or have experienced the same dilemma you are facing right now.

Sending virtual hugs your way.....
Kathi (Fearless)
  

lesleylaura

Thank you Kathi,

I appreciate your perspective, your response is thoughtful, caring and insightful. You don't know what will happen, stats are stats and outliers lead change. As the probability of being an outlier decreases and the memory of illness induced chemo is still in short term memory it becomes more difficult.  

I am so glad that your experience with the clinical trial was so positive and it is why there are trials, the researchers are looking for the variety of responses to bring the drug forward. I read about your experience and will ask about the possibly of using PARP drugs. I have endometrial cancer and not OVC so my question will be about whether using a PARP would be considered "off label". I am not a candidate for any current trials, I have looked at the research data bases for this country, and did find a paper about the use of a PARP in endometrial cancer with an n of 1. I expect if i had access to a medial library and librarian there would be more. 

The treatment and diagnostic criteria I have received thus far appear to be similar to OVC where more research has been directed. My cousin died with OVC in 2008 and my dear colleague in 2012 and I appreciate that there has been progress in a cancer what is too late diagnosed and too fatal on diagnosis.  While I have no knowledge of the specificity of cancers I am hopeful that progress in one gynecologic cancer can build a baseline and perhaps some elements can be transferable to another. I "crashed" the OVC message board as it appeared I was more likely to receive perspective on advanced cancer treatment choices than asking about endometrial cancers which are more often found in earlier stages.

So Kathi thank you for responding and for your efforts in keeping the message board viable and reliable. I do so appreciate having such a rapid response. The process of reading your words is helpful in framing my thinking.

Best,

Lesley