I keep up to date on here but haven't posted for a while. It's looking likely I am in recurrence 15 months after finishing first line for stage 3c but I'm waiting for a scan for confirmation. My ca125 is up and I have the dreaded swollen tummy so it's pretty certain uunfortunately. I'm gutted obviously but dwelling on it won't change things so I want to arm myself with information ready for appointment with onc after scan results. I have managed to access the algorithm of treatment protocol for my health authority which indicates carbo/taxol will be offered again. However the only mention of Avastin is through the cancer drugs funding but ONLY for first line. Please could any of you who are on carbo/taxol with the addition of Avastin for second line tell me if it was offered automatically or not and if not if you had a battle to get it approved. My onc doesn't like to be questioned about his decisions but I'm getting tougher and although I usually go to pieces when it comes down to it I feel if I have more ladies own experiences to relate to get might just stick up for myself for once!! Thanks in anticipation lovely ladies. MB X
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mummybear59
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Hi MB, here is an extract from The Cancer Drugs fund re Bevacizumab (Avastin) that I think you need. It was sent to me by Whippet (Annie) click on my username kazrazmataz, search for Avastin and reply from whippet you should see the whole document as per the link Annie sent me oy you can google search it I found it that way too.
From what I can see is it is available for England but at hospitals where the consultant is trained and accredited in its use. I think you should be able to interpret that as any hospital with a large cancer centre with a team of specialists. I do not think your Consultant can refuse to be questioned as its your treatment your, choice and can always ask for a 2nd opinion. I am going to ring the hospital Monday to ask same question for myself so I'll let you know how I get on if you like although they have said I am stage 4 so should get it firstline for which I have just come to the end. Good luck.
Bevacizumab
The second line treatment of advanced epithelial ovarian, fallopian tube or primary peritoneal cancer where all the following criteria are met:
1. Application made by and first cycle of systemic anti-cancer therapy to be prescribed by a consultant specialist specifically trained and accredited in the use of systemic anti-cancer therapy
2. 2nd line indication
3. Platinum sensitive epithelial ovarian, fallopian tube or primary peritoneal cancer (6 or more months after completion of first line chemotherapy)
4. Given with Carboplatin and Gemcitabine combination chemotherapy
5. PS 0 or 1
6. No previous treatment with bevacizumab or other anti-VEGF treatment
7. Bevacizumab dose to be 15mg/kg every 3 weeks
Note: Bevacizumab should be discontinued due to toxicity or disease progression, which ever occurs first.
Yes, and don't forget your NHS Constitution in England is that you have a choice where you are treated so if your local hospital doesn't have staff who are trained and accredited in the application of Avastin you can ask to be referred elsewhere.
Luckily you are in the North-East where there are the best survival rates in the UK. You may need to travel to a larger centre of excellence in your area to benefit from a wider range of treatments that can be obtained in the UK.
I'm so sorry to hear you're looking at recurrence. I was a bit nervous last September looking at my 2nd line of chemo, but I got through that - with Avastin, and it looks as though it's not the right drug for me, so we're looking at 3rd line now, followed by PARP inhibitors for BRCA negative women. There are still many rooms in the house.
Good luck dear friend. It's good to see your fighting spirit is in full swing. Let us know how you get on! xxxx
I do know we are lucky in England to have options. It really is unfair that the same treatment isn't available to everyone in the UK across the board. However I am not in the North East, (Newcastle etc) but in North Yorkshire which is entirely different. My local hospital is linked with Humberside which doesn't seem to have the trials option of the North East or West Yorkshire. If I ever opt for a second opinion Leeds is about 90 minutes away so definitely doable.
I'm really sorry 2nd line hasn't been successful for you but you should be proud that your campaigning for equal access for all seems to be benefiting others. Also it's great news there is a plan for you for 3rd line and then parp inhibitor trial. Do you know what chemo drug you will be on for third line yet?
As far as fighting spirit it comes with the territory doesn't it?
Caelyx is the proposed chemo for next time. It's all a bit of a whirlwind at the moment. I'll probably understand more in 3 weeks' time.
Let's hope you don't feel it's necessary to travel 90 minutes to hospital because there are challenges. As you say, it's good to know there's a choice. I'd dearly love to have a Constitution for patients in Wales, and one that includes patient choice.
Yes we must all keep fighting, keep exchanging information, and just be there for one another.
That's really useful. I Hadn't realised Avastin had to be used in conjunction with carbo/gem in 2nd line to qualify through the cancer drugs fund so that's something else I need to think about. I'm not even totally sure Avastin is the right choice for me anyway I just want to be informed. I have to wait for scan and then results and MDT meeting first so I need to be patient!! Thanks again.
So sorry that it looks as though you're going to need more treatment. In June, I finished having three weekly Carbo, but with Gemcitabine, (not Taxol)and Avastin. I had a top-up of Gem on day 8 of the cycle. At present, I'm continuing with Avastin alone so that, as long as It keeps working, or I can still tolerate it, I can have 18 lots in all. It is my second line of treatment, which I was told was the necessary criteria. I wouldn't have been entitled had it been my third line, or more, although I think there are some people who are sometimes allowed it first time. I didn't need to ask for it, I was just told that that was what I would have. I am so grateful that I am eligible as I'm no Spring Chicken, at 71!! From my understanding of things, I must be funded by the Cancer Drug Fund.
I hope this may help you. Wishing you well and the best of luck,
I knew that as a general rule avastin isn't offered beyond second line but what I didn't know is that through the cancer drugs fund its only with the carbo/gem combination. I tend to think if carbo/taxol worked for over 12 months then it can be successful again but that can always be used llater down the line whereas Avastin can't. It's great to have options but picking the right one is anyone's guess!! I hope your application is successful anyway, let us know how you get on. Love MB x
Sorry Solange, ignore the last bit about youyour application that was meant to be for Kaz. It's really tricky reading/answering posts on my annoying mobile!!! X
Thank you Mary, I was so pleased to see your recent post and so happy you remain NED for a long long time!! I am hoping my next treatment will knock the b****r back for years! Take care, keep posting positive posts. Love MB x
I was offered it automatically with Carbo/Gem well I was given a range of options. It didn't really work for me so I have stopped taking it but according to guidelines it is supposed to be available in England for second line as well.
I am sorry that you are having a reoccurrence and wish you best of British. I am sure you will keep us updated on developments.
Hi again MB, firstly lets hope your symptoms are not due to a recurrence as could be something easy to treat. If it is better to be fully aware of your options in my opinion. Its the health providers job to give us the facts and then its our choice (within the correct framework). If it is a recurrence if they say no to Avastin you could make a list of questions to ask like I have ie:
1) I've heard about an anti cancer drug called Avastin that is funded by the CDF can I have it at this hospital?
If they say yes thats an optiion then ask them to tell you the benefits and risk/side effects and how long you will have it for (18 months is mentioned). Also what other options are there why not Carbo/taxol with Avastin. What reasons GEM only? Then you can decide.
If they say No, I am going to ask the following:
2) Could you explain why you are telling me its a NO
If I have any doubts I will ask
3) So are you saying its for a clinical reason why the drug may not be suitable for me, could you explain this to me further
(if they say they don't have trained doctors that can prescribe Avastin ask if they could do an URGENT referral to any nearby hospital if so which ones and if not why is this)
If I am still unclear of their reasons I'll say
'Sorry but I've lost you a bit. 'Please could you explain the hospitals policy on Avastin? Are you saying its a financial decision and I'll add that there has been a lot of in the press about Wales but I was under the impression from this document that it is available in England at the moment and ask if they have seen it. If they says its not Financial I will drill a bit more (buts thats me) and will ask how many patients that qualify under the CDF are currently receiving Avastin at this hospital? If the answers a don't know I will say so could he/she clarify if there are any patients who have/are treated here and can you explain how this is decided. Or are they saying they don't offer Avastin what is the reason.
4) if I am still not satisfied with the answers who can I speak to seek clarification?
You may not feel like grilling them to the degree I would that's your call. If you want me to help in any way let me know, I will try and help if I can. I am waiting for a scan as had chemo 6 of firstline Thursday but did not get to see an ONC so I am going to phone secretary Monday.
What absolutely brilliant advice Kaz and advice that would have made such a difference to me when I was first diagnosed. I've printed it out because it's so good. I'm just so lucky now to be at a hospital where patients don't have to fight for every treatment.
Annie, I think you are brill wish I was as good as you. I am however very passionate about ensuring we all get the best treatment plus it makes me feel better if I can make a difference. Lost my mojo a bit last 6 months put that down to my diagnosis and the not great way I was handled after going to GP several times/diagnosed when urgently referred to Gastro ward at hosp to have strong sent for diuretics for what turned out to be Gross Ascites Stage 4 OC or PPC and I got that from reading a postit note on outside of my file left next to me on bed when I had routine appointment for pre-op assessment re Debuliking op and had originally been told stage 3 OC after first scan. This was made worse as I saw nurse for pre-op 2 days before pre-op scan as had 3 chemos and then interval debulking so there was no new news just looked like ONC had reviewed my file but no-one had told me must have got it wrong at first glance as had a plueral effusion in lining of lung which means its technically stage 4 as will be neoplasm (cancer cells) in the fluid as from fluid in peritoneal. My CA125 was over 3k.
All that said Surgeon was fantastic nurse did not know what to say so fetched her (who I was not due to see officially until days after my scan. She also clarified (after my scan) plueral effusion gone, and said after op that I had been successfully debulked carry on with next 3 chemo - now trying to establish if can have Avastin before my firstline treatment is over.
Just demonstrates what I believe - that the wonderful staff in the NHS strive to provide a great service whatever political barriers are in their way.
I don't think you've really lost your mojo Kazrazmataz. It might be temporarily hiding under a bushel but a light you nonetheless have shared with us all here. xxxx Annie
Thank you Kaz, that's brilliant.! I may not be quite so brave but I will use your plan as a starter. I just need to be strong. I need to be patient and wait for scan appointment first though.
Oh Mummybear59. I am sorry to read your about recurrence - it surely it a curse of a disease to get rid of.
Fortunately for me, I live in Republic of Ireland and there is no question of a drug NOT being administered because of cost, provided it is appropriate to the disease control. I was proscribed taxol & carboplain with avastin when I had the recurrence of CCOC, and have remained on avastin for nearly 2 years now. I am back on taxol & carboplatin again for another recurrence, since finishing last session ended 17 months ago.
I know it is difficult sometimes to talk to our Onc & medical team, but he knows I am not challenging his decisions and just to keep the lines of options open. There are occasions when I go into an emotional meltdown, and that is natural and he understands. In your own situation, do you have a Liaison Nurse you can talk to before hand, or even a local Cancer Support group - as verbalising our thoughts and writing down our questions can help.
I probably haven't given you much advice - but keep asking the questions and don't be put off by his manner. It is your disease and you have the right to question.
Thank you Daisies, you definitely have given me good advice. And hope. 17 months is a good time between recurrences. fingers crossed for you that carbo/taxol kicks it into touch again. X
Hi again MB, the evidence shows that women who are 'chemo sensitive' ie who respond well to chemo are likely to have a good response again so thought that might help, apologies if you already know this. Take care
So sorry you are facing treatment again. I'm waiting for results of CT Scan after high increase in CA125 and won't know until 3rd Nov. I was told at the beginning if I needed Avastin I could have so I hope that's still the case if it comes to it.
Interesting to hear how things are in the Republic of Ireland. My Daughter moved there last year and wants us to join her!
Hope all goes well for you MB and you get the best treatment available.
Thanks Annette, it's the waiting that's intolerable isn't it?! I hope your scan is clear and the ca rise is down to something else. But if all else fails a move to Ireland sounds very tempting. X
I was really sorry to read of your recurrence, CA125 rising and a swollen tummy may not be all you think it is. Sending you a virtual hug and lots of positivity.
Thanks Lily Anne, unfortunately I had ascites on diagnosis and I know what it's like so there's no mistaking the cause of my swollen tummy. But I'll take the hugs and positivity anyway. X
Am so sorry to read that you are facing this again and sending all best wishes and thoughts your way. Seems like you've some excellent suggestions and advice which I can't add to but hope you'll know we are all behind you when you ask the consultant what you need to!! Good luck and very much love Sxxx
Thanks S. I'm armed with printouts for a clinical trial (Ariel 2) and criteria for Avastin through the Cancer drugs fund so i hope i get chance to speak up!!
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MB X
However I am not in the North East, (Newcastle etc) but in North Yorkshire which is entirely different. My local hospital is linked with Humberside which doesn't seem to have the trials option of the North East or West Yorkshire. If I ever opt for a second opinion Leeds is about 90 minutes away so definitely doable.
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