I've had chemo/debulking surgery/ chemo, and have just come to the end of the post surgery chemo. I've been told all along that I will continue with Bevacizumab as a maintenance treatment (I've had 3 rounds of it alongside chemo, 2 before the surgery and 1 after). I caught COVID towards the end of treatment which has delayed getting started on maintenance. I then had a blood clot in my lung and was put on anti-coagulants. At first I was told that having the Bev would be fine as I was on the blood thinning medication, but I have just been told that I can't have Bev after a blood clot. They don't know the cause of the clot for sure, cancer in itself raises your chances, as does Bev, and also Covid. They are intending giving me Niraparib instead. Has anyone else had their Bevacizumab discontinued after a blood clot? And what experience do people have of Niraparib?
It has just been unsettling to be told I can't have what I was told would give me my best chance of keeping the cancer at bay. I can only find an American report on outcomes on Bev after a blood clot, where the people who continued had only a slightly higher incidence of another clot than the people who discontinued the Bev.
Hoping to hear of anyone with similar experience. Many thanks!
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LovemyJackRussell
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Good morning 😊I just came across your post & I can relate as I am on the same treatment plan for stage 4 clear cell cancer, although still have 2 chemos to go. I have Avastin with chemo and have been advised I will have it going forward as maintenence. So I'm interested in seeing how your journey progresses and what decisions are made. I am sure its a worrying time, its never plain sailing is it & we dont know what detours we may take.
May I ask, how did you find your remaining chemos? I've not long had no.4, 1st one post surgery, and struggling with such a very sore tummy. Maybe the chemo upsets the healing process?
Sharing love & strength for your continued journey xx
Hello, Kazzh, thank you for replying, and I will certainly let you know how things go. In answer to your question I re-started chemo 3 weeks post-surgery (a lot was taken away, it was nearly 7 hours and I ended up with a stoma, an ileostomy). At 2 weeks I thought I would never be ready for chemo but turned a corner in the third week and just wanted to get on with it. I was warned it would be harder this time round but I tolerated it amazingly well. I was on weekly Paclitaxel, with Carboplatin every 3 weeks, with Bevacizumab being introduced after the first 3 weeks. I think the weekly taxel is much easier to handle. I had 8 weekly sessions, the 9th was postponed because of getting COVID, and in the end they scrapped it as I kept testing positive.
Chemo definitely does affect the healing process, as does Bev, but you will get there. Make sure you have plenty of rest and take great care not to strain your tum. Laughing, coughing, sneezing were all very painful, I kept a cushion close by to hold over my tum and I took great care to roll out of bed, rather than trying to sit up.
How many weeks post-surgery are you? It takes longer than you ever think it will to get back to some sort of normality, but well done for getting on with the chemo, and rest assured that the soreness will eventually go.
Wow restarting chemo at 3 weeks post surgery is very brave, I felt too ill then but did restart 5 weeks post surgery. Its a big surgery isn't it, 7 hrs for me too, alot was taken out but fortunately for me no stoma or anything. Was it temporary for you? Physically I'm moving well, walking, doing light exercises, but inside I feel like I'm burning, feeling more sick right now, not something I've had so far with chemo & generally feel shattered. I am sure chemo must inflame the whole area even more.
Still its reassuring to hear it does go off eventually.
Absolutely the uk use Avastin, I haven’t had it but I saw a lady having it while I was having chemo, she used to come in every 3 weeks for Avastin infusions. x
I am in the UK and we definitely do it here - I had 2 lots before my op and 1 after, and would have been having 15 infusions in all, had the blood clot not got in the way. I wonder if it is a postcode lottery situation, whereabouts are you? (I'm in Gloucestershire)
Good Morning, I haven't had that but I think you should ask the oncologist to reconsider or maybe ask for a 2nd opinion. It's your body your risk after all and you've done your research. But aside from that keep in mind that the parps are the best treatment for keeping things at bay from what the trials say. Good luck X
Thankyou, Newbery3. I've had another discussion with my consultant and have also been looking at parps, which I hadn't researched at all as they hadn't been on the agenda for me. It is a cautious approach but she convinced me that it was sensible not to add any extra risk when there is an excellent alternative. I'm now just hoping that I tolerate the parps well. Are you on them? Do you have any advice?
Wow, that's amazing. I was told that you could take it indefinitely, as long as it continued to work, but I didn't imagine you could be on it for 6-7 years. You must have tolerated it well - do you have many side effects? I sailed through chemo really, so can't help feeling I'm due a bad spell!
Have you had any breaks from it at all, or have you had it constantly the whole time? I'm told that I'll be able to have a short break in order to have my stoma reversed and that it shouldn't be a problem.
Thank you so much for answering, it makes me feel very optimistic!
I’m happy to help. If you have any other questions, you can always send me a private message here.
I started on a high (full dose), on 300mg. That was pretty miserable. So they dropped me to 200mg. I still didn’t feel good on that dose and my platelets kept dropping etc. I was exhausted all the time and eventually they dropped me to 100mg. So here I am. I tolerate the lower dose much better and research has shown it is still effective. I think these days they have better experience of dosages!
I’ve only had breaks for the odd 2-3 weeks. But was fine. So I think you’ll be fine. You’re lucky to have it! At the time, I couldn’t access it so had a long fight to be able to get it!
Thank you. I asked about Niraparib. Oncologist said 'You're talking about PARP inhibitors' then something like 'We wouldn't give you those'. I'm not sure why.
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