I’m at a crossroads! Had a third opinion from City of Hope this week. My first doc who did initial 3 chemo surgery and then 3 more carbo/taxol which stopped working according to her thus recommending letrozole which did nothing for two months
She kind of gave up on me when my ca125 went up to 1200 from 256 before surgery
Second doctor at UCI disagreed and said I should have had more chemo
He advised carbo/doxil which the first doc said would be too toxic to my heart
My ca125 is now 3000
THIRD OPINION doc at City of Hope recommended 6 to 12 cycles of cisplatin/gemzar which would be easier to tolerate than doxil
I’m so sick of seeing doctors and am leaning toward the third doc I have peritoneal carcinoma and it’s not gone
Has anyone had the doxil chemo and side effects?
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Golfjazz
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Oh what a tough time you are having. I cannot advise on different chemo drugs (I have only had carbo-taxol). However, do not give up even if you do feel you are never away from doctors. The third opinion sounds a good deal more positive and I hope you can push ahead with this or some other form of treatment. Thinking about you and sending prayers and hugs x
Sorry to hear you are having such a tough time. I agree that you need an oncologist who believes they can get results and if that means a new chemo combination then go for it. You can ask them to scan after 3 cycles to check that it is working. Side effects vary between individuals, so it’s not always a good guide to ask what others had.
Be good to yourself, take the anti sickness meds and ask for help with any other symptoms.
It can feel like you are constantly at the doctors office, so try to have some treats to look forward to as well. Very best of luck xx
HiI am 55. I have had carbo/ caelyx- UK name for doxil I think. I had a heart scan before starting. I was poorly a week and got better over next 3. Low netrophils and platelets, sickness after chemo otherwise not too bad except for very tired. Other side effects usual - ulcers/ nerve damage, but not hair loss. Good luck in whatever you decide
City of Hope is brilliant. A friend of mine was treated there for leukaemia when I lived in California and she's still with us 27 years later when another doctor had given up on her. I'd say if they are offering you an alternative, grab it with both hands.
So sorry you're having a grim time. I had carboplatin/liposomal doxorubicin for my second line of chemo. Yes - sickness, fatigue and low blood counts but controlled with anti-nausea meds, resting and blood stimulating injections. Dr didn't seem worried about my heart... It worked and I got another 9 months on olaparib before relapse. I don't have any experience with cisplatin/gemzar. All the best with your decisions.
I had Carbo/doxil for recurrence, there were side effects but I seem to recall they weren’t as bad as first line CarboPlatin and Taxol. No hair loss loss either which helped me through the treatment. I didn’t have any heart problems and indeed that as a side effect was never mentioned.
Well no 2 of us have the same reactions to each drug. I tolerated carbo and taxol and doxil but gemzar was too hard on my bloods but there are others who had carbo gem and were fine .. the side effects I had on doxil were brown spots on chest and hardening skin on palms easily taken care of..wear rubber gloves and use a super rich oil like coconut oil. Cisplatin is more performing than carbo according to the science. Go with the doc you feel best about as you are a team. Good luck from paris
That is a tough one.....but the good news is you have options and your second and third dr believe they can help you. I don't have any personal experience with either chemo combination but would you be able to choose one course of treatment and if you find it too tough or it isn't helping opt for the other regime?
Whatever decision you make I wish you all the very best.
Hi. I had carbo doxil for first recurrence. I found it easier than carbo taxol but I was not ned at the end. However I went on the PARP Olaparib (Lynparza) and that got rid of the remaining cancer. I’ve been on it 18 months. Are you HRD positive or BRCA positive? I’m surprised they put you on letrozole rather than a PARP. Good luck and lose the first doctor!!!
BRCA1 and BRCA2 refer to the two known genes involved in inherited (familial) ovarian cancer. BRCA stands for breast cancer. These gene changes increase the risk of breast and ovarian cancer and can be inherited from male as well as female family members.
Around 15 to 17 per cent of cases of ovarian cancer are thought to be linked to these genes.
HRD on the other hand stands for Homologous Recombination Deficiency. This refers to when genes that regulate the homologous recombination repair pathway are damaged, and the cells are unable to fix their broken DNA. BRCA1 and BRCA2 are both types of HRD but some people who do not carry the BRCA gene change do have HRD positive cancer cells.
These gene changes can influence the way different treatments work within the body and can impact eligibility of certain drugs.
If you would like to learn more about this, we have some information on our website that may be of interest:
A conversation with your oncologist or member of your clinical team should also be able to shed light on your own individual circumstances and what your own BRCA and HRD status means for you. If you would like to talk this through with a member of our support team, please get in touch with us directly through the forum, via email at support@ovacome.org.uk or schedule an individual call with us: ovacome.org.uk/forms/1-to-1...
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