Possible/probable disease progression during first line chemo

cbot

Hello teal sisters. I'm feeling really discouraged so I just need to vent. I finished first line chemo on Sept 24 - was so happy to be over that hurdle! Unfortunately, the CT follow up scan shows possible progression of disease. There is nodularity and edema in the pelvis suggestive of metastatic peritoneal disease. My CA-125 was 37 post surgery and 40 post chemo. My oncologist is not sure, as the images don't appear as bad as the radiologist suggests. She wants me to wait 2 months and repeat the CT scan. If progression is confirmed (platinum resistant), I will probably need to go on next line chemo right away. Not sure if I can physically or emotionally handle that....wondering if anyone else has not had at least a little bit of a break with no evidence of disease - any suggestions on how to handle it?
Thanks in advance

Fearless_Moderator

@cbot I am so sorry to hear the results of your follow up.  We had all so hoped for a good result when you completed your first-line treatment recently.  I know how let down and worried I was when I recurred but that was over a year after my original chemo so I can only imagine how you're feeling right now.  

Hoping we have some others in the community with similar experience to share with you and help buoy your spirits. Please keep us posted on next steps for you and anything we can do to help support you through this disappointing time. 

Angbil

Hi CBOT,  I am in a similar situation to you in regards to my quick recurrence. I finished my first round of chemo on December 5th 2019 and was put on Lynparza on Dec. 29, 2019.  Unfortunately, my cancer recurred and it was caught early as a result of my monthly CA125 bloodwork.  I had rising numbers in March & April 2020 and after a discussion with my oncologist, I had a CT scan at the end of April 2020.  The CT scan didn't show any unusual. My doctor gave me the option to wait and redo a CT scan in 2 month or do a PET scan 2 weeks after the CT scan.  I chose the PET scan and it showed cancer cell activity.  Instead of waiting and having the cancer develop further, the PET scan gave the doctor and me the information needed to move forward with chemo treatments starting May 25, 2020. 

Instead of waiting, I would suggest to push the doctor to order a PET scan.

Good luck and all the best to you.

Taita

I too have just discovered I am platinum resistant. Debunking March 2020, Finished six rounds of carbo/taxol first line IP/IV in August 2020. Felt great during and after chemo. On Zejula 200mg October 2020. Dec 2020 three month check up. Ca125 went from 27 to 34. No symptoms. New Years started to feel bloated and heartburn. Hemoglobin went down to 61 twice in January from the Zejula. In the end had 3 blood transfusions within 2 weeks. By mid January decided we needed a scan. Ca125 went to 49 and symptoms getting worse.  Discovered recurrence with new abdominal sites end of January. About to go on weekly Taxol if we can’t find a clinical trial that fits. Can’t add Avatistan right now as large tumour is too close to the bowel. Hoping the Taxol works and shrinks the tumours. The cancer came back so fast and the news of recurrence before six months was devastating. I felt so positive through surgery and first line chemo. I get the sense from my new treatment oncologist that NED is really not likely. Maintenance and holding it at bay is most likely. Having said that who knows!  Like everyone else that has this terrible disease, I am prepared to do whatever it takes to maintain a decent quality of life for as long as I can hoping a new discovery comes along. Once the tears dry up, the determination comes alive again. ☀️

Tinazzie

Hi @Taita, nice to meet you.  I'm sorry to hear about your recurrence.  I can understand how disappointing that can be.  But you have the right attitude: willing to face it head on, having faith in new research and treatments and a positive attitude.  I was diagnosed with stage 2 clear cell. I have completed my 6 cycles of Carbo/Taxol a few months ago and  not feeling as well as I expected, but still trying to stay hopeful.  
Wishing you all the best and stay in touch.

Fearless_Moderator

Hi @Taita I'm so glad you found our community.  I too was shocked when I recurred, especially given I had been NED for over a year and was so hopeful not to be one of the statistics.  But I'm now in my fifth year as a survivor and truly feel confident that I have many years yet to look forward to.  I have come to terms with the fact that I will be living with cancer forever...cure is not an option for me. But I like to think of my situation as something like one with diabetes...you have it, you treat it, you stabilize and you accept that's how your life will be, but it is life.  I was fortunate to have qualified for a clinical trial when my first recurrence was found and that kept me going for almost two years. I'm now back in chemo for my second recurrence, hoping again for a full response. What happens after that is pending whatever might be available to me at that time. Everything is changing so rapidly now that you can't give up hope that there will be some new discovery or trial on the horizon.  I do encourage you, if you haven't already, to order a copy of Still By Your Side to download from Ovarian Cancer Canada. I'm sure you'll find it very helpful as a guide as you continue your journey.  I also host a live online chat on Thursdays you might want to join, regularly or occasionally.  it's a great way to get real time feedback from other survivors.  To join you need only sign in to OVdialogue and the click on the Discussion Topic: Teal Thursday.....at 1pm EST.  

Taita

Thank you @Tinazze and @Fearless for your replies. I have read some of the chats and will do my best to join them on Thursday. I like your diabetes analogy. I use the concept of dialysis. I think because I expect to start weekly chemo next week it made sense to me. I have been engaged with OCC for a number of years as a friend, supporter and advocate with the Lady Balls campaign. The women I met were amazing, little did I know I would rely on them through my own journey. Look forward to hearing more about individual journeys because not only do they inspire but provide helpful information and learned experiences.  

Taita

A quick update.  I was to start weekly Taxol on the 17th and just  before I went in for my pre-chemo bloodwork on Friday, I received a call from Princess Margaret for a clinical trial. I think my doctor and nurse were as excited as I was! No details yet, but based on my research I am thrilled if this ends up being an option for me. One more tool in the toolbox as it were.   

Fearless_Moderator

@Taita, what wonderful news.  I remember two years ago, the day we confirmed my recurrence, hearing that there was a clinical trial that might be suitable for me. All I was expecting to hear was when I'd be starting chemo.  I hope it works out for you.  There are "gates" to meet to qualify and then decisions you will to make so be prepared to ask lots of questions.   I don't regret at all  opting for the trial.  For me it produces exceptional results for almost two years.  

Suggest you sign up for the upcoming OCC zoom on clinical trials....it will be February 24th - 7pm EST.  90 minutes in length with some Q&A.  The announcement will come out today, I believe, on OCC's FB feed and email with instructions on registration.  Once the details come out I will also be posting them her on OVdialogue for those who don't follow OCC on FB or have registered for email communications.  

Taita

Thank you @Fearless the advice for the appointment is very helpful.  I had no idea what to expect. I will put February 24th in my calendar. Will let you know how I make out.

nadiaC

hi @Taita I was wondering if you could please tell us more about the clinical trial at PMH? I'm having my dossier sent there from Montreal. Thanks!

Taita

Hi. There are a few going on right now. Unfortunately I didn’t qualify because there were not enough receptors on my tumour sample. I don’t qualify for the other two just yet because my biggest tumour is up against my bowel so I cannot take Avastin. I am now on Caelyx every few week and hope that it will shrink the tumour(s) so I can try for a Trial again. It was a Phase 3 trial. This is the site. You can search.https://clinicaltrials.gov/ct2/show/record/NCT04296890. Good luck. Trials are so important. I also am on the Bio Diva trial that was supported by research dollars from Ovarian Cancer Canada. When I have my next scan at the end of May those results should be ready and maybe 🤞they tell us something new about treatment options. All the best and I hope you get in. The staff and doctors are amazing!