I wanted to thank you all for the amazing support you offer to this group. I have been reading several posts over the last few weeks. I am after advice for my mum (age 76) who after weight loss for around 7 months (only symptom of the cancer) saw her GP in early June and now has just had debulking surgery @ St Thomas performed by Dr Sayasneh on 18/7 (recovering well) and was given the news she has a diagnosis is 3C high grade serous carcinoma of fallopian tube.
Is Paclitaxel & Carboplatin her only option?
A friend's mum works at the careoncologyclinic in London and she has suggested I also look into this as well but am unsure. Has anyone else looked into doing such things along side treatment too?
The appointment was pretty quick with the Dr when we got the news 2 days ago so now my mind is starting to question everything and wants to do any research possible to ensure mum has access to everything.
I work in the medical industry so I am not scared to ask questions or to try to ensure that the best options are considered for my mum. We were told that as there is no further detected cancer at present (repeat CT being performed in a few weeks) that she is not eligible for any trials.
Any thoughts or comments would be extremely welcomed as we are all feeling like things are spinning a little at present.
Big hugs to all, Ema x
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Brom42
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Sorry to hear your mum has been diagnosed but in my opinion she is in good hands at Guys and St Thomas's. I am under the same hospital, was diagnosed in July 2016, stage 4, initially inoperable and had the same chemo first to shrink disease then surgery then more of the same chemo. Since surgery was No evidence of disease and my CA125 went from 3880 to now 8 .
I’m glad to hear she is recovering from her surgery. Paclitaxel & Carboplatin Is the normal firstline chemo protocol and for many can be very effective for firstline treatment.
I would chase them up regarding getting your mum tested for the BRACA gene as there is now maintenance Olaparib approved to follow on from chemo for Ladies with the BRACA gene. Historically from my experience Guys have taken ages to get this done and results can take up to 12 weeks.
I did investigate the careoncology clinic but decided it wasn’t for me. My oncologist wasn’t at all keen ( to put it politely!). and also didn’t want me taking anything whilst on chemo. However there are ladies on the forum who follow their protocol and may be able to give you their experience.
Can also recommend all the support available through Dimbleby and physio.
I had physio which really helped following my surgery and chemo and also counselling to help deal with the trauma of a cancer diagnosis. The reflexology is also great and as your mums carer you can also get some complimentary sessions. There is also a monthly gynea support group.
Hope your mums treatment continues to go well and remember to take care of yourself too.
Hi. I’m sorry about your mum. Carbo taxol is the standard treatment and it’s about 80% into remission-especially high grade serous. It’s not fun but it’s doable. Avastyis an option with it but I chose not to have it and have been in remission 8 months.
They treat fallopian tube cancer the same as any other ovarian cancer so as has been stated your mum is on the right track already. But definitely chase genetic testing as that's key. Good luck with being her carer. My dad's cancer worried me far more than my own so take care of yourself xx
Hi Ema. Your mom is a lucky lady to have you. Glad she is recovering well.i also have stage 3 high grade serous. In just the last year the whole protocol has changed due to PARP INHIBITORS. I believe in the UK it has been approved for first line treatment instead of chemo. I could be wrong but you can check this out. You can ask your moms onc. Have they discussed a treatment? If they didn’t suggest then they were probably satisfied that the surgery got it all. Same here but then I recurred in three years. PARPS had just been approved here. I have been on zejula since last October. So far it’s working. So much better than chemo.
Please keep us posted on your mom. Once she is healed from surgery just have her live and have fun. Go out there and just enjoy life.
Hi there, I was diagnosed with high grade serous oca 3 years ago and received carboplatin and paclitaxel. I’ve not taken any medication since as at the time I wasn’t eligible for anything. Olaparib (PARP Inhibitor) is licensed now for newly diagnosed ladies and those recur with the BRCA gene. I spoke to a nurse earlier today and she said Olaparib has to be started within 4-8 weeks of last chemo. You could discuss this with your mum and consultant. It was quite hard been diagnosed positive so soon after surgery/chemo but there are positives to it to with regards to treatment. Target ovarian cancer also has a very useful help line which I’ve used a few times. Wishing your mum all the best, great you are there to support her. Jo xx
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