I've recently been told, after removal of some cancerous lymph nodes, that they've finally been able to identify my cancer as high grade serous epithelial - I had debulking surgery in January 2018, when they found non small cell neuroendocrine ovarian cancer. The theory at the time was it 'probably' started as serous epithelial and differentiated into non small cell neuroendocrine, so that theory has recently been confirmed. I am Stage 4b.
Now that we know it started as high grade serous epithelial, I am being offered single agent chemo, specifically, Carboplatin. I refused adjuvant chemo after the original surgery - the lifespan of documented cases of neuroendocrine ovarian with surgery and chemo was only 14 months; because I'd had a good surgery with all visible cancer removed, I figured I'd get the same length of time with no chemo, and because they could not say whether I had high or low grade serous. I have had more than the same length of time already at nearly 18 months post surgery, but now its crunch time - I've developed ascites for the first time and there are lots of lymph nodes round the bowel which are cancerous. There are no guarantees for me - they cannot even say IF having this treatment will give me any extra time, just that if I don't then the cancer will progress, though the jury's out on how fast it will progress. There is an argument that women at my stage won't get much benefit from chemo, that the physical price for it is not worth it because you don't get much extra time, if any, but of course, they offer it because that's all they've got. If it makes a difference, I'm 69, so I'm particularly interested in the experience of older, late stage women with high grade serous epithelial cancer.
What I want to know is, how did those of you who had carboplatin (especially as a single agent) feel when on it, and afterwards; did you suffer hearing loss, does your brain work the way it used to or not so well as it did? Did you lose your hair, or did it get really thin? If you had ascites, did it get rid of it or not? Did you get sepsis or neutropenia or any of the other things that assail people on this drug? Did it work, and how long for? I'd be glad to hear any of your experiences...
Miriam
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bamboo89
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I had Six treatments with carboplatin, three before surgery and three after . I didn’t loose my hair, and didn’t have any of the other things you mention. Constipation and fatigue were my main problem, some days I could hardly move I was so exhausted.
I took all the anti sickness drugs , and never felt nauseous. The prof at the Christie reduced my dose slightly after the first one , as it knocked me out too much . I am now twelve months after my last treatment and so far so good 🤞🤞🤞🤞Good luck xx
I am early stage and younger than you (although I am not sure it makes a difference with regard to side effects). I had my last dose (six total) of carboplatin as a single agent six weeks ago. No hair loss. Some constipation and digestive problems, but with laxido and omeprazole that was not so bad. I felt like I had the flu or a very bad hangover a few days after each chemo, then I had three weeks that were ok or even normal. I was neutropenic throughout treatment, but no sepsis or other infections. I am back at work now, part time, still a bit tired sometimes, but it has been a tough year so it’s hard to tell what is what. Good luck, I hope it works for you!
Thanks for answering - if you're early stage, definitely worth having chemo. The only reason age might matter is because of other health problems (what the hospital refers to as co morbidities) we have as we get older, some of which can be aggravated by chemo.
My mother had carbo and taxol dose dense at your age and besides some minor fatigue she was fine. With the pie and post chemo meds for most people it's not like the chemo you see in the movies.
Hi I was diagnosed age 64 with stage 1c high grade ovarian cancer three years ago. I had had 6 rounds of carboplatin only. The only side effect was extreme tiredness about three days later which lasted about three days. No hair loss no sickness, it was fine. I know our staging is different but I just really don’t take any notice of it. I lost a friend who was 37 last year to OC she was stage 1c. There are many ladies on here stage 4 still many years down the line. My husband was diagnosed in 2008 with stage 4 bowel cancer and has been in remission since 2011! I hope it all goes well. x
My experience of Carboplatin was good. I tolerated it well apart from severe fatigue. It got rid of my ascetis and I didn’t lose my hair or feel sick. I now have to start it again so am hoping it will be the same perhaps with less fatigue as I am at a better starting point. Good luck to us both. Do post and let us know how you fare.
This is what troubles me - you just have to keep on having periodic chemo, I guess till they say they can't risk any more... it feels like more of just waiting for the other shoe to drop. The trouble with me is, if there's no real solution, I always want to cut to the chase and cut out the messy middle bit of scans and treatments and more scans and treatments ....just to end up in the same place anyway. But it doesn't sound like carbo on its own is too bad, thanks for replying
Miriam
Hi Miriam
Sounds as though we are in a similar position. I was diagnosed with high grade serous carcinoma of gynae tract. This decision was reached after a biopsy on a inguinal lymph node was tested by various experts.
No definite source was ever found but it has been treat as ovarian although ovaries appear clear.
I had carboplatin,Taxol and Avastin for first two Chemo, lost my hair, became neutropenic and bloods up and down like Yoyos.
This was reduced to carbo only for next two, and carbo reduced again for final two. Declared no evidence of disease at end of course.
Did not recover very well (nausea, fatigue and constipation).
A CT scan followed by a PET scan in March 2018 confirmed a return.
Had six sessions of carbo only which I tolerated a lot better, although still nauseous and constipation issues. Hair stayed put.
Started Niraparib which did not work for me. Scan showed lymph node growth and small amount Ascites.Started third line of Carbo only 6th September, only 5 to go!
I am 66, seen the birth of my 4th grandchild and her first two birthdays,her older brother start school.
Thanks for that - I'm guessing the alternative (no treatment) is shuffling off this mortal coil sooner rather than a bit later. Congratulations on your positive approach, though - maybe if I was waiting for a grandchild, it would seem more worthwhile, but no signs of anything like that on the horizon...
I’m 68 and was diagnosed with high grade serious carcinoma grade 3 in October 16
I had 18 consecutive weeks of paxal combined with 3 weekly Carbo
With the help of my naturopath my bloods never dropped below 94 and mainly stayed in the 107 range I did get and it remains bad neuropathy of my feet and I probably should have not try to be so brave and said something sooner
I’ve only just been confirmed with a recurrence and they are giving me 4 rounds of Carbo 3 weeks apart
To not lose my hair this time will be wonderful and my naturopath is on the job to keep me as healthy and able to fight all the bad effects of the Chemo
I never looked sick before and I don’t intend to this time
You just have to do what’s necessary and not be over dramatic about it as far as I’m concerned I think there are people worse of out there than me
People with horribly debilitating illnesses
I think at my age I’m lucky to have had a good life and I still look great my age
It all comes down to attitude
I know that eventually this will get me but then I’ll get to see my beautiful son again so It’s all good
We’ll do fine I wish you all the best I’m not going to say stay strong and all the usual platitudes because we just have no choice we deal with what’s happening as best we can and some do better than others and there is no judgment to that
Sometimes life sucks but we are best to learn and grow this is just our journey
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