Hi ladies.
I met with my surgeon for post op meeting and he said I may not be given any more avastin. I've had 2 out of 18. I asked why and he said my oncologist will decide ( without answering my question as to why)
I'm worried now. Is this a good thing or bad thing? Has anyone else had their avastin stopped ? Xx
Hi yes my avast an was stopped after 22 doses due to protein in my urine so I didn't fit the criteria any more I am currently waiting to see when I am going to start chemo as last scan showed seedlings! Deep Joy. Look after yourself and try not to worry too much Pam x
Hi pam. I'm sorry to hear that they stopped it.
I e only had two and am supposed to have 16 more. I just don't have a reason why they would stop me having any more. Doesn't make sense. Xx
Perhaps you could ring your CSN at the hospital who maybe able to give you some more info. Pamx
They usually prefer to wait until the sites are at least 1cm
Yes I'm thinking that. After surgery he said he got all my cancer out and that I'm just left with microscopic clusters of cancer cells. Maybe avastin would have no effect on them and they need to start growing.
I might phone my nurse st the hospital. See what she says. Xxx
I was actually replying to Fluffycloud. For reoccurence and chemo The Christie prefers to wait until new sites are at least 1cm its in the FIGO criteria used in trials as well
Oh sorry. Thought it was to me.
Sorry I should have mentioned her name first I forget how the replies are formatted on here but you are right in what you posted
That's ok. It gets a bit confusing when there's a lot of people writing things. 👍🏻👍🏻
I don't know if this is relevant to you, or the possible stopping of Avastin in your case, but if you are in Eng & Wales, I understand Avastin is only available for sub-optimal debulking rather than optimal. It may be that your surgeon has got so much of your disease that you no longer fit the criteria, but it is a good thing that you don't fit the criteria. I think optimal means there nothing left that the naked eye can see. For
What!? I suspect he may be speaking out of turn as it is your onc who decides. Unless there is a medical reason why you shouldn't have it I don't see why they would pull it now as they get 12 or 18 funded in advance.
I was NED when I started Avastin so you can't be 'too well' for it.
2 cycles is too soon to tell if it's working/not working.
Def ask more questions! Lxx
Lindy, if you don't mind me asking, how long ago did you start Avastin? I had optimal debulking and was told by my onc that I wouldn't be able to have Avastin as there wasn't enough disease left to be effective on. I was a bit skeptial about the explaination, so I Googled it, and what she told me was true for the NICE guidelines (I'm assuming you are UK based, but if not, that would explain the difference!). I'm still skeptical as I know so many ladies on here who are on it! I feel like I'm missing out.
Hi Suzanne,
I have had 6 cycles of Avastin with Carbo/Taxol. I was due to have 18 cycles but now my oncologist has stopped it completely. My situation is different because my cancer started in my cervix. When I asked why it was stopped they just said that there wasn't any benefit to me!! My latest scan showed 'no clear evidence of disease' and I am due to start radiotherapy. It is very unsettling when the plan changes, I hope you get a satisfactory answer from your oncologist.
Helen x
Avastin is complicated if you live in Eng & Wales. It is not approved by NICE for Ovarian /PPC. You can only get it privately, or via an application to the Cancer Drugs Fund. This is the document of the drugs available under CDF england.nhs.uk/wp-content/u...
However, a cut & paste of the relevant part is this :
4. Patients must satisfy one of the following criteria:
i) FIGO stage III debulked but residual disease more than 1cm OR ii) Stage IV disease OR
iii) Stage III at presentation and requiring neo-adjuvant chemotherapy due to low likelihood of optimal primary surgical
It goes on the say:
Note: This policy is NOT for patients with stage I-III disease who have had optimal debulking
So, you do need to ask questions of your team, but it helps to be forarmed with information. Effectively, if you are in Eng & Wales, the current guidance is that you need to be Stage 4, or have residual disease to qualify. My mum did qualify (suboptimal debulking), but when we asked about Avastin prior to surgery we were told to see it as a positive if she didn't meet the criteria, as it would have meant the surgery had done the job ! Best wishes in finding the answers you need.
Hi and thank you for you reply. My surgeon said after surgery that he got all the cancer out and 'it's as good as it gets'. He told me at post op meeting that I just have microscopic cluster cells remaining. Perhaps this is why they may stop it as there might not be any point having it if I've no tumours left. I guess this is good but I feel I would still like it as an extra precaution.
Will have to see what my oncologist says. Xxx
I agree with you Suzanne. My surgery for stage 3 went well and as a result I don't qualify for Avastin. In the appointment where I was told NED, I asked if I could have it privately as a precaution, and she said yes, but I'd need to go through an extra round of chemo for the Avastin to be introduced with! By that point I was so glad to be over it all, I decided not to go for it, but I do still question my decision.
Well Suzanne wait and see what the Oncologist says, maybe they feel they will hold off if you dont need it. I think write down what you need to ask your onc at the apt and be well armed for him. Ask the reasons they are stopping it. They tried to stop mine for no reason and I fought and got a few more, Then the Onc pulled the plug as his reason was that he wanted to stop before my kidneys were affected and I could have it again if needed. I was cut after 17 or 18 sessions. Indeed add any questions you have to the list. We should be able to ask questions and get answers.
Dear lady, I am sorry you are in such distress, but you must be your own advocate. Ask questions of your doctor if you don't want to be left wondering. The most common reason why Avastin is not given is because you kidneys are passing protein which means you need to be taken off of it immediately. That is one of the reasons blood is drawn before each treatment. There are other options that you can dis cuss with your doctor. The Lord bless you dear one.
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