So mum got to see the oncologist today, to discuss the difficulty she is having with the chemo side effects. He is going to reduce the dosage of the taxol. Her CA125 is much improved, so they asked the Onc why they needed to continue the chemo and he told then that whilst the debunking had gone well, the scan showed there was some cancer left behind.
Anyone have any experience like this? Does this mean chance of remission has gone? I'm not sure what to think now.
Thank you x
There seems to be two important methods of detecting cancer, primary one is the scan but it can only show cancer that is visible to the naked eye, the other is the CA125 which may indicate the presence of cancer but at microscopic size. However itts never quite as simple, as you can have CA125 readings below normal (35) and still show tumours on a scan and vice versa. The onc always like to complete the full course of treatment if the patient is well enough to complete it. My wife for example did 12 of 18 weekly taxols and stopped treatment due to feeling unwell, the onc was happy to stop as her CA was 18 yet the scan showed the tumours were still there but had shrunk by 30%. its no surprise after 3 mths of rest we start a new regimen of treatment because her CA has risen to 83.
Thank you for sharing your experience, I hope the new regime works for your wife x
Dear Britinak
I've been told that a scan only shows tumours that are at least 1 cm in diameter so even though a scan might look relatively clear there may well still be tumours lurking around and they may have produced florets that are multiplying and growing.
Chemotherapy can only attack cells at a certain point of their development. Apparently Taxol and Carbo-platin attack them at slightly different times. The reason you would need to continue the treatment for the full 18 weeks - or whatever is prescribed is because it gives the best chance of destroying cells as they develop. You won't get them all in a few goes.
I'm really sorry to hear your mum is suffering so badly with side-effects. It must seem an eternity for her. I hope the reduced dose helps as will your evident love and devotion to her.
wishing you all the best at a difficult time.
love Annie xx
Dear Britinak,
I had tumours left after debulking, one on the bowel and one on the diaphragm. The surgery was much more difficult than first thought as the scan had not detected how much disease was in my pelvic area. I have been told that my pelvis had almost frozen which means the disease had almost gone as far as it could. This was not picked up on the scan. I had a fantastic surgeon who did a marvelous job. Chemo post surgery is to clear up residual left and almost always works. Unfortunately it didn't in my case. Lots of people on this site have had long remissions after chemo to 'mop up'
Chemo will also reduce CA125 mine had been over 3000 at diagnosis and dropped to 96 during treatment. I finished chemo in Oct 20012 and CA125 has gone up to 2400 last week.
I've been told it won't go to within normal range while I have disease but others can have disease and a normal CA125. I think we can only go by what works for us and keep positive. That is not always possible but the alternative is a non starter.
I hope your mums side effects will improve with the reduced Taxol, I was lucky and didn't have too many side effects for too long.
Your support will be invaluable, good luck and best wishes
Chris xx.
Thanks Chris, Sorry that the surgery was so complicated for you, it sounds like OVCA gets everyone differently. I'm sorry you have worries with your CA125, I hope you can get that back down with few side effects again x
Dear Britinak,
I got to the stage with side effects where I actually thought that if this is the cure maybe cancer is an option.This was taxol carboplatin. My onc suggested lowering the taxol dose by 25% I asked if this would jeopodise my recovery and she said "Not appreciably" so I agreed but i was anxious about it. ( which says something about the "option"! )The side effects did improve, particularly the leg pain that had been keeping me awake all night. I finished chemo one year and four months ago and am still most gratefully in remission. Of course I can't know what is or isn't due to reducing the taxol half way through but clearly it wasn't a disaster! Best of luck with the decision. Let us know if the side effects improve.
Hopefully the dose reduction will help. Lots of women have disease left after surgery - that is very common. It's relatively unusual for all the cancer to be removed during surgery.
Residual disease after surgery doesn't mean at all that there's no hope of remission. I know of one women who had residual disease who is currently in her 20th year of remission.
The fact that your mother's CA125 is coming down is a very good sign. At the moment, I think you - and she - should be optimistic.
Thank you for the boost of optimism, mum loves to hear just that kind of success story (so do I!)
I had only one round of chemo, carboplatin only, I had really horrible side effects, and din't continue after a discussion with my oncologist. She did say that some of the side effects are often caused by the steroids. My CA has not been a good marker for me as it was never raised, although my hospital says they have changed the threshold now from 35 to 30.
I think the advice form the ladies on here is excellent.
LA
Thanks LA, I did mention about the steroids to my mum to discuss with the Onc. Thats interesting that they have changed the threshold, I hadn't heard that. Mum's CA125 does seem to have been a marker for her, but I guess we shall see.
I agree that all the advice here has been wonderful!
Hi,
My mum had debulking which went really well and the notes said 'no residual disease left in body'. Not every patient gets a scan after surgery apparently, so the fact that your mum got one is good. my mum did too, and it did show a couple of areas where some disease was present, but they said even without a scan, the chemo is a 'mopping up' process - to eradicate any microscopic cells that can't be seen on a scan. It's easy to say from someone who's not been through it, but I hope your mum feels she can stick with it. So you know, after 2 sessions of chemo my mum had another scan (to check on how her bowel was healing, as she had to have some surgery there too), and the areas of cancer had already shrunk... so I'm hoping that the post chemo scan will be positive too!
Good luck with everything x
Thank you Angelag, she had the CT scan because of the severe back pain she was experiencing. I think they thought that the cancer had returned/spread to the back.
That is great news about your mum, fingers crossed for a great post chemo scan! x
I had debulking then straight into chemo carbo/taxol. This was to clear up bits as it had become invasive. I unfortunately reacted to taxol so taxol was stopped. I completed my course of carboplatin. I did not get reduction in ca125 as hoped and six months latter scan has shown reoccurance and just started back on different combination. I don't know what side effects your mum is having but I would say do everything you can to finish the chemo. Can you get more help with side effects.
Best of luck
Sharon x
Having read through all these posts I would also add that it is possible to have carbo-platin only and that generally has few side-effects compared to Taxol. I had carbo-platin and no Taxol and have been well since finishing the course at the beginning of November 2011. Tumours are on the return now and I've been told I'll have the combination this time. It'll be interesting to compare the difference in having just carbo-platin compared to carbo-platin and taxol. I guess everyone is different but I was told by the oncologist that if women had a tendancy to morning sickness in pregnancy they are generally more likely to suffer more side-effects from chemotherapy.
xx Annie
CA125 rising, clear ct scan
Mums latest scan update 🤔
CA125 rise but clear PET/CT scan
CA 125 high but stable
