Hi all, I saw my consultant last Wednesday and she said that she was going to be taking my scan with her to a MDT meeting this Monday. She said that they will most likely agree with her that it’s time for me to restart chemo. This is my first reoccurrence, it’s in some lymph nodes now and I’m more scared this time than I was when I was diagnosed in March 2018. I’ve been NED ever since, which I know is luckier than some. I feel that I’ve not done something, or done something for or to return, which I know is illogical but it’s how I feel.
She is talking about either carboplatin and paclitaxel again or carboplatin and gemcitabine. If you’ve been in this position can you tell me which one was best in your opinion. Does this mean that it will never go away or is it possible to be NED again. I’m sorry for the long post but my head is in a complete spin.
Thanks for reading this, big hugs xx
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Tay100
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Welcome to first recurrence club! Not sure you volunteered to join, neither did I !
Can’t tell you about the chemo as I am on carboplatin only. As I understand it, once you have recurrence your cancer is classed as incurable but manageable. My ca125 has fallen from 1200 to 58 and I still have two chemos to go. So hopefully NED is possible and I will have more remission before the next one. As we know OC is very unpredictable and doesn’t follow the rules so every reason to maintain hope and continue to plan for the future .. sending you a hug xx
Thank you for your help and Big hugs right back to you! I will keep everything crossed for you and i hope you reach and then stay NED for many years to come xx
Hi, I am sorry that you have a recurrence, like you I found it more difficult to accept after 4 years in remission.
I was offered Carbo/Pacletaxol, or Carbo/Gem. My Oncologist thought that carbo/gem would be easier,which for me it has been. I had carbo/ taxol when I was diagnosed nearly five years ago. I have found with carbo /gem, that das 3 & 4 I feel more tired,& then after that I am ok. I have carbo/gem day 1,then day 8 I have gem only. The other thing is that for me carbo takes 1 hour & the gem takes 30 minutes. So far I have had 3 cycles & I am due to have my 4th cycle this Friday 28 Aug.
Hopefully this will be helpful to you & I wish you luck with whatever you choose.
Thank you for your help, wow carbo/ gem is so much quicker isn’t it. I seem to remember being there nearly all day, or it felt like it with carbo/taxol. I hope your last few cycles go really well for you and you stay in remission for many, many years. Big hugs xx
I’m sorry to hear of your recurrence and that you’ll be having chemo again, I know it must be a shock to you and hard to get your head around. You’ve had a good long remission there so that is a positive sign, you can achieve that and more again and I’m sure you’ll respond well to the chemo again.
I’m not sure about the different drugs as I’ve had carbo/taxol only but I believe the gem is less harsh than taxol and that you only have thinned hair on gem, not total hair loss as on taxol. I’m sure you’ll achieve NED again and I’m sending you tons of luck and positivity for a super long remission. You can do this again and soon you’ll be back on the road to recovery again, sending hugs Xx
It is devastating when you have been NED for some time I'm pretty sure it's nothing you did or didn't do. All we can do is eat a healthy diet (in my case sometimes dictated by my stoma) and give our immune systems a boost. I take vitamin D daily and things like brazil nuts, antioxidants etc. Just have good healthy diet and not too much food at one sitting. This works for me but we are all different. I had carbotaxol first round. Hair loss and peripheral neuropathy so this wasn't recommended for first recurrence. I went with carbocaelyx as it seemed to be a doable as carbogem - only treated once every four weeks so not in and out of hospital so often but get chemo head and tiredness from about day 3 to 7 approx. Very slight hair thinning so pretty similar to gem really. No nausea though. Anyway, good luck with whatever you choose. I hear the paclitaxol works well with carboplatin for some if you can still tolerate it again but I am sure you will make the decision that is right for you. Good luck 🍀. Jackie x
Sorry to hear your news. Recurrence is very difficult to accept, but you have had good remission and that's always a positive to focus on. I had surgery two years ago for my recurrence which was in a lymph node and did not need to have chemo afterwards. Is that something that might be possible for you? I had to have a PET scan (rather than just a CT) before surgery to confirm it wasn't more widespread. It was also suggested to me that radiation therapy could be used without chemo. So maybe these are other options for you to discuss with your consultant. I'm sure they'll come up with the best plan for you and I hope all goes well and there's a long remisssion coming up for you. Love, Ruth x
I'm really sorry you have recurred, I totally understand how upset you are and send you a big warm hug. I am on first line treatment myself so not in your shoes but I can promise you that it is still possible to be cured. I'm on the inspire website and there's a lady in America who was first diagnosed in 1987 she recurred in 1993 and has not recurred again, she's also going strong and knows a lot of other ladies in that situation. So don't despair and hang on in there. If you recur within 6 months the chemo doesn't work so well, your way out of that situation. All the best, take care and hang on in there. Sue xx
Advanced High Grade Serous and the lovely thing is she goes to loads of seminals and is always posting on the website to help others her name is Helen and her 'handle' is Helenstandsforhope I think she's so lovely to do what she does. All the best Sue xx
Thanks for the reply. She sounds like an amazing and caring lady. Unfortunately, I have a very rare type of OC, carcinosarcoma - you've probably never heard of it. Prognosis is not good but I am still here 2 years and 9 months after surgery, diagnosis and first line chemo even if I now have a recurrence. It's a good job the surgeons/oncologist (nor I) knew very little about this strain and could not give me a definite prognosis or I might have thought myself into an early grave🙄. I am not ready to throw in the towel just yet. There may be a few surprises down the line yet. We can but hope. Take good care of yourself Sue. 🤗 Jackie x
Jackie, don't ever throw in the towel, I'm sorry that your OC is harder to treat but they seem to be doing a good job at the moment, also the future will be bringing Immunotherapy and Car T-cell therapy which promises to be the holy grail so hang on in there and enjoy every minute. Sue xx
Oh I intend to do as much as I can, despite Covid. Whatever may be discovered has got to treat cancer in the epithelial tissue (organ linings) and connective tissue (bone, cartilage and fat) - bit of a double whammy if you like. So far it seems to be taking gander round the epethelial tissue and maybe some fat, according to the scans. I am a great believer in positive mental attitude and, as you say, we never know what's round the corner. Onwards and upwards, I say. Cheers. Jackie x
Thank you all so much for your help, I feel a lot more confident about it. Hopefully I will get another long remission after treatment. I guess I just need to wait until I see my consultant again for the plan. I have some questions now to ask her about different treatments and how well they work v side effects. She did already say that surgery wasn’t an option on one of the nodes as it is behind my vena cava artery by my heart. Once again thank you and extra big hugs to you all xx
Well ... if it were i it wd be carbotaxol. Its not uncommon for recurrence more the norm. OC however is becoming more a manageable disease. Trials are fewer and slower as OC is rare and they need lots of patients for the trials to work but eventually they learn from what worked with other cancers. Good luck and hugs
Hi. I had my first recurrence a year ago after 9 months ned. It was depressing but I was given carbo caelyx (doxil in the US where I am) and found it very tolerable since it’s every four weeks. I was able to maintain a normal life. It left me with an 8 mm tumor but I’m now on Olaparib for maintenance and after two months the tumor was 2 mm. I’m hoping it’s gone now. I think many on this site achieve remission after recurrence. However your cancer will now be considered technically incurable. Unfortunately that’s par for the course with OC. Xx
That said.. mine recurred in pelvic lymph nodes too (similarly to you, 3 active nodes were showing up on scans). Luckily, I was able to have surgery again and the offending nodes were all resected. Maybe surgery might be an option for you too, if your med team and you consider it feasible?
Still had chemo after anyway, but am glad the surgery kinda lessened the payload up front.
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