Today I had my results from my 2 month scan. It’s showing my lesions had either halved or unmeasurable. These are in my omentum. I do have some others in my pelvic area but again unmeasurable. I do have to say they was small to start off with.
I have clear cell cervical cancer but hope this will give hope to anyone that has clear cell or any other rare or difficult to treat cancer.
I don’t know how long it will work for but the longer away from chemo the better in my opinion.
I’ve had a few bumps in the road with my blood count . A 5 day break and then the following month a week and a blood transfusion. A dose reduction and now things seem to be on the up.
I’m off now to celebrate in the sun and hope this gives some positivity to you all.
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Starbarn
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That’s really good news Starbarn! I have hgs but lost a lovely friend far too soon who had clear cell… it’s so good to know that progress is being made on this tricky disease. Have a lovely time in the sun 🌞 but don’t forget your sunscreen!
Hi Lyndy. Im sorry to hear about your friend . I just think the longer I hang around something new will come along . Im sure everyone feels this way . This trial covers mainly clear cell but does include others rare gynaecological cancer’s too .
Hi Starbarn,Yes great news and I sincerely hope it's success continues for you. A question: do you know if the drug includes low grade serous ovarian which is also very rare. Keep it up. Gwen x
Hi . I’m not qualified to say but there is 3 cohorts (groups) I’m in the third which might cover you cancer. My advice would be to ask your oncologist . You could also contact cancer research or go online for information on this trial. After you go to meet the trial team they give you a good check up talk about your treatment and health.
They send your tumour off to be analysed before they decide if your suitable. I’m sorry I can’t be more specific but hope this helps.
Hi Starbarn, are you on AZD 6738 alone or with Olaparib? I have been on AZD 6738 for over 4 years now and targeted cancer has reduced by more than half though still have quite a bit left. I have had lots of ups and downs with bloods , kidneys etc and am now on the lowest dose of 80 mg twice a day.
Hi neona. I’m on cohort 3 which is 160mg and olaparib.at 600mg . I’ve had a reduction in it to 500mg due to bloods and fatigue etc. I also am brca neg and No loss . It’s great that it is working for you to.
Excellent news Starbarn. I was hopi ng to get onto the carcinocarcoma arm of the ATARI trial. I nearly made it twice but something always got in the way in the end. I sincerely hope that all continues to go well for you.
Thanks for your reply. I think I last applied in May or June last year. Unfortunately there are no more options left for me now. My type of OC is quite rare and the NHS will not fund further treatment as I am not eligible for any of the new drugs. I have been on palliative care for three months now and not doing too badly all things considered. I don't regret making the decision. I was getting far too many complications on chemo (some life threatening) and it became a question of quality of life or continue with chemo which made me very ill and didn't appear to be working anyway. I'm getting very good care from my local hospice and the community nurses. I'm still getting out and about occasionally and pain is uunder control at the moment. I'm chronically tired but keeping my spirits up and enjoying my family and the simple things in life. Oops sorry this is a lot longer than intended. Take care. Jackie.
Oh Jackie it’s exhausting having cancer and when it’s rare we seem to get the short straw regarding available treatment. It’s good your enjoying life and getting the support you need. You sound like you’ve had a good go and doing what’s best for you. I’m sending you hugs and prayers ( I hope this does not offend you) x
Not offended in the least everything helps. I've had a good four and a half years since diagnosis, some of it very good, so I must be thankful for that.
That is fantastic ! Have you had your tumor profiled? What are your mutations? I am clear cell ovarian cancer with Arid1a mutation, your post does enlighten my day
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Strange news but a miss diagnosis!
End of Trial
Surgery was hugely succesful, thank the Lord! 😇🙏
