Still got my head in the clouds after finding out I have no evidence of disease this week after 1st line treatment for stage 4 clear cell! 😊 Had a lovely BBQ celebration & a glass of wine with my family last night.
Today my mind is turning to ongoing maintenance treatment & I'd like to hear of your thoughts & experiences. I have a follow up apt. with my team in two weeks to confirm the next steps.
I have been on Avastin alongside Carbo & Taxol from the start. I have suffered alot with headaches and a bloody nose. My oncologist does not think it is wise to continue Avastin & is considering Niraparib instead. I am still waiting on my HRD result, if it is positive, the two can be taken together but this would still cause those side effects surely? I have asked my oncologist to explain in more detail so I fully understand, nothing worse than confusion inside my chemo brain!
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Kazzh
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Hi there, Just wanted to say congrats on NED! I have never had either of the other drugs you mention but lots of ladies here have and can advise you. x
Hi Kazzh, many congrats on your NED. Like you, I was on Avastin along with Taxol & Carboplatin, although I hadn't had many doses because of needing to halt it before and after my debulking op. It did give me a nasty, itchy rash, but I was prepared to live with that. I also had a bloody, gungy nose all through chemo so hard to say which drug caused it. I then got COVID, which lingered, and after that I had a blood clot in my lung. I ended up missing my 9th (weekly) chemo session and the plan was to go onto Avastin as maintenance.
They decided it was too much of a risk after the clot (although I am now on blood thinners and swapped me to Niraparib. I was very disappointed at first because Avastin had been held up as the best thing ever.
I then learned that it is only licensed in England for after first line chemo, so this is their only chance to prescribe it (in Scotland it is only available after 2nd line) which is who they tend to go to it first. Also, there is a set number of infusions and then generally nothing, just watch and wait.
I've been on Niraparib for about 8 weeks now. 200mg a day. I've been very lucky in that I have virtually no side effects, just very occasional slight nausea and slightly bumpy skin. I'm told that you can keep having it 'for as long as it works'. Another advantage for me is that it would only need to be stored for a short time in order to have a stoma reversal as it leaves your system quite quickly, and can be re-started fairly soon after the op. (Having the reversal is a whole other question that I haven't decided on yet!)
It does seem odd that they think they should stop the Avastin, but are then proposing to give it alongside Niraparib - maybe they are taking about a much reduced dose? Hopefully all will become clear at your next appointment. Good luck!
They haven't said as yet they propose Avastin & Niraparib together, I just know that's an option if you are HRD positive. Good news is I've a telephone apt with my oncologist tomorrow to go through it all!
Fortunately I didn't need a stoma, what a pain to have to consider the reversal yourself. Are you worried about interrupting the fact that Niraparib is working for you? Xx
I do hope that your consultant clears everything up for you tomorrow. I have had total trust in my team, I have felt sure that they are doing the very best for me. As for the stoma reversal, I will take their advice on the implications of halting the Niraparib for a while. I don't relish the idea of another op, but it's an ileostomy and the food restrictions are hard to live with. Because food only goes as far as the small bowel you can't eat green veg, fresh fruit other than banana, nuts, seeds, pulses, anything high fibre, so only white bread. The list goes on. If it wasn't for the food, I would probably not have the reversal, especially as it is a bigger op than I had thought. I feel so well at the moment, it's hard to think of being back convalescing. I tell myself that physically I got over the debulking fairly quickly!
I will not go into the details...I was so proud of myself at 80 and with a history of colon and breast that I came through the major debulking etc with flying colours. Did carboplatin (paclitaxel destroyed my balance and I was at risk living on my own so it was stopped).
Now I am struggling with Avastin and Olaparib. No taste at all no appetite, sleeping all the time if I could, coping with very vivid scary dreams, unpredictable low moods, feeling as I dont want to do anything at all. The Avastin ends in a few months but the Olaparib goes on to June 2026.
I will never manage that. I have a review with the oncology in a few days.
I'm sorry to hear that you are struggling, has it been like that since you started on the combination of Avastin and Olaparib? It might be worth dropping the Avastin early to see if that helps. There seems to be a lot of people on here doing well on Olaparib alone. I'm sure your consultant will come up with a plan. Well done for coping with all this on your own, you are a very strong lady, and they will find something that will work without so many nasty side effects
Its alot to consider & I totally get your reservations at going forward with the op. Sounds like insoluble fibre is off the menu permanently which is hard to deal with. I'd feel the same. It's so encouraging you are feeling well on Niraparib so it gives me hope, I'm just worried if it works as well for clear cell. Will let you know what is decided xx
I'm sure they will have answers and statistics for you (on Clear Cell outcomes). I'm so grateful to be feeling well on the Niraparib, I'm currently in Switzerland having travelled here by train, and having the best time. This time last year I wasn't sure I would ever see these mountains again.
Good morning, how are you doing now? Are you still considering a stoma reversal? Since I posted this, I had a twisted bowel caused by adhesions and needed surgery to remove them. I am 3 weeks on and still on a soft diet, so I know exactly what you mean about changing diet. I really dont like the fact that I'm having low fibre as it goes against the grain! I am very fortunate I didnt need a stoma, so I do feel for you. Anyway, I am about to start Niraparib. Avastin is no longer an option unfortunately due to possibility of bowel perforation. So I will see how I get on with it, 200mg for me also, I so hope I dont suffer too many side effects like you 🤞xx
Good morning, Kazzh! I'm sorry to hear that you had to have surgery for a twisted bowel, I hope you are recovering well from that. Good luck with the Niraparib, I hope you tolerate it as well as me. The only extra effect I have found is that my skin prickles in the sun, especially my scalp, so I have got a big sunhat and use plenty of suncream (I had been warned to be careful in the sun, that you are more susceptible on Niraparib).
I am still considering a stoma reversal. I had a scan a couple of weeks ago to see how things were looking and I have an appointment with my (oncology)consultant on Monday. She has already referred me to the colo-rectal surgeon and I've just had an appointment come through - for February 2025 which is very disappointing. I had the debulking in December last year and it seems that a reversal should really happen within a year to get the best outcome. I am going to ask my consultant if things can be speeded up at all.
I too have clear cell OVCA. I had carbo taxol after TAH in 2008. I was disease free for six years, then a tumor was discovered on my psoas muscle. I had more chemo, followed by many monthly treatments of Avastin only, which kept me in remission. I then stopped the because the Avastin wasn’t working as well. I had minimal side effects while on it. I am now on immuno therapy Yervoy/Opdivo for 3 treatments, now just Opdivo. Infusion is every 3 weeks. My CA125 showed consistent dropping,, and is now in normal range. I am so happy that this seems to be working. Maybe you could discuss this with your cancer team? Best of luck to you.
Thanks for this info. Was your cancer staged? I'm in UK so not sure the drugs you're on are available here. Good news is I got an appointment with my consultant tomorrow so I can talk it through. Good luck & I hope you continue to be well xx
Hi kazzhI was diagonised with clear cell mixed in 2021 surgery november 21 started carbo +taxol feb 22 till july22. Cos the chemo did its job they put me on Niraparib in September 22. I was told it had to be started between 8 to 12 wks after chem.
They also said I may not be able to tolerate it there was a few bumps at first but it dint last long high blood but it has settled down now and I monitor at home now I have bloods done every 2months for my ca125 they ring next day with results so far so good.
I've been on Niraparib for 2 years in September I know everyone journey is different the list off side effects is endless but for me Niraparib has been the best thing ever and I'm living life to the full.
Hi Kazzh, so pleased you’re NED, long may it continue. I haven’t got clear cell but I’ve been taking Niraparib for 4 months and so far so good re side effects. The only thing I’m experiencing at the moment is faster heart rate and constipation. X
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