You may remember I posted a while back about a submission we're making to NICE about making olaparib and bevacizumab (Avastin) available in combination as a maintenance therapy.
I asked for anyone who had experience of this (probably through the PAOLA-1 trial) who didn't mind sharing their experience to leave comments or contact me so that we can include this information in the submission.
Unfortunately no-one has contacted me, so I was wondering if those of you who have experienced these treatments singly would mind commenting on your experience?
I wouldn't use any identifying information in the submission, just your comment about your experience.
Using quotes from women who have experienced these treatments is so important, and makes our submission so much stronger.
Also if any of you have any comments on expanding the range of maintenance therapies available, I could include those.
Many thanks for your help as always.
Best wishes
Anna
Head of Ovacome Support Services
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Hi Anna I trialled Avastin in 2007/8 having a total of 18 treatments. It gave me little side effects, blocked/stuffy nose, nose bleeds from time to time and did affect my BP making it rise. Having said all that I had a remission of just under 4.5 years. I had treatment once every three weeks and returned to work the next day (I work full time) so it impacted my life little. With regard to Olaparib, I have been on a trial since the very beginning of January 2014. I continue to work full time, have very few side effects, namely lowered BP, occasional nausea and sometimes my bowels are affected. All in all, as with Avastin, I continue to be NED, have a great quality of life and continue work full time. I have found both drugs to have extended my life greatly, given I was told on diagnosis that my prognosis was not good and I had 'a couple of years at most'. Kathy x
Hi Anna, I self funded avastin for 3 1/2 years after my first recurrence. I’m back on chemotherapy again now as the avastin was beginning to stop working. I tolerated it well, runny nose, aching joints and towards the end peeling skin on my hands and feet. I really wish avastin would be available on the NHS for a recurrence as I believe this drug worked for me. After front line treatment I only had 20 months in remission, after responding well to chemo and then funding avastin, I managed 42 months before needing chemo again.
Hi Gwen, when I first started funding Avastin 3 1/2 years ago it cost me £3500 every 3 weeks. Then it dropped to £1981 every 3 weeks. I’ve no idea why and I daren’t ask ! Lol. I believe it worked for me and even when my CA 125 started to increase last February it kept it from spreading rapidly. I was persuaded by the consultant in September to stop Avastin as he thought with an increasing CA 125 I was now wasting my money. As soon as I stopped Avastin my CA 125 shot up. I started chemo again beginning of January maybe should have started before but my daughter was getting married in December and I wanted hair ! Lol. I’m hoping if I respond well to be able to try zejula, I would not hesitate in having Avastin again if I could fund it. I have spent the last 3 1/2 years fund raising to pay for this treatment with help from my family and friends. This in itself is stressful. I persuaded my consultant to apply to the cancer drugs fund twice even though he didn’t want to, as he said he knew it would be refused, and it was, but I still had to try. I wrote a begging letter to the drugs company and got my MP involved all which ended in the same result NO ! There was no help , even after funding it as long as I did and the consultant finally agreed it worked for me, there was no help. Sorry if I’ve gone on a bit ! But what I realised is there is no help and if you want any of these drugs that have been taken off the NICE list you have to fund them yourself.
Hi again Val, Thanks for all the information you have given. Much appreciated. Now Iknow what to probably expect if I were to self-fund. (if we could afford it!) Gwen x
READ YOUR POST. HAVE YOU TRIED CONTACTING THE DRUG COMPANY?
MOST DRUG COMPANIES WILL PROVIDE THE DRUG TO YOU IF YOU ARE UNDER A CERTAIN INCOME LEVEL. THERE ARE ALSO AGENCIES THAT WORK AS PATIENT ADVOCATES AND WILL TRY TO FIND GRANT MONIES.
I have just finished second line chemo for recurrence of OC Clear cell Stage 3 aii. I have been told there are no maintenance options for me and no trials that I am eligible for. I know clear cell is one of the rarer types but I wish more research would go in to maintenance options - I know clear cell ladies in USA are on Lynparza and some other drugs. All I can do it seems is keep my fingers crossed that the gem/carbo has done its job for now and then wait for the next recurrence.
Thank you for your comment. You're right, so far NICE have considered treatments for high grade serous ovarian cancer. I know women with the rarer types of ovarian cancer often feel overlooked. This is why our most recent magazine focused on some of the rarer types, including clear cell. You can download it from our website here: ovacome.org.uk/Handlers/Dow...
I am aware of two recent trials for women with clear cell. One was the NiCCC trial, which is closed now and we are hoping results will be published later this year. there is information here: cancerresearchuk.org/about-...
I had #9 of Avastin yesterday and will continue to have it every 3 weeks until 1st September. I had the first 5 infusions of Avastin along with my chemo.
I did not suffer any major joint pain whilst having chemo... a little in the beginning but it subsided over the months.
However, since having just Avastin, my joints have become pretty awful. My hips, ankles, hands, wrists, but in particular my shoulders. I feel like I’m about to get frozen shoulder constantly. I have to keep my arms tucked into my sides and I cannot lift anything, with an extended arm without it causing severe pain in my shoulders. Sleeping is almost impossible unless I’m in a slightly tilted, seated position, this tends relieve the pain slightly. My hands/fingers also seize up over night, I try to squeeze and stretch my hands/fingers to relieve the stiffness. I also get pain in both sides of my groin which throb in the night. Putting a pillow under my knees to raise my legs can sometimes ease the pain in my groin.
I am currently trying a course of Naproxen to see if it will ease the pain.
I did research on the internet and found that many women experience, specifically, the acute pain in their shoulders whilst on Avastin. The posts go back many years, so it seems women have been experiencing the shoulder pain for many many years. I was surprised that this was/is not listed more obviously in the list of side effects - not a complaint but more of an observation, because it seems relatively common.
Having said all of this, I’m extremely glad to be having Avastin as after my radical surgery my CT scan showed I still have residual cancer on my liver.
Thank you for your comment. I'm sorry to hear you're experiencing such significant pain. I hope the Naproxen makes a difference. If not, it might be worth asking for a referral to a specialist pain team to see if they can help? They are experts in pain management and can look at different ways of treating your pain.
Have you searched on the forum for others' tips on how they managed their joint pain? As you say, it is something other women experience and our members will have advice on what worked for them.
Macmillan list joint pain as a common side effect of avastin macmillan.org.uk/cancer-inf... but I can see that shoulder pain isn't specified. You could always ask your team about feeding this back to the drug company.
I hope your pain is controlled for you soon. If there is any information or support we can help with please do get in touch.
I finished a course of Avastin in August2017 and have been clear of cancer since. My main issues were raised blood pressure, for which I received Ramipril tablets, and joint pain.
Hi Anna , I developed advanced aggressive high grade serous primary peritoneal cancer in 2013 which was deemed inoperable . I had 18 treatments of cancer drugs funded avastin along with my chemo . At the end of treatment a PET scan confirmed I was cancer free and my ca125 was down to 8 having started at 800 . 7 years on I’m still cancer free and incredibly grateful . I was told initially I would be lucky to survive 2-3 years ...
Im aware Prof Jayson at the Christie had some interesting research planned into testing who responds to avastin which he is trying to get funded - please contact me if you wish to know more,
I’ve only just seen your post so I hope I’m not too late.
I was funded for Avastin from the Drug Fund in 2017 (8weeks) and at the end of my course I asked whether I could self-fund to stay on it as it seemed to be working for me.
My oncologist told me that no oncologist worthy of that title would prescribe more Avastin for me because of the high risk of bowel perforation, regardless of how it was funded. This may have been personal to me ( feel free to check my profile) but it is something to be considered.
I only had minor nose bleeds as a side effect (I also had joint pains but I don’t contribute those to Avastin ).
Hi Anna. I recently finished my 2nd round of chemo; Carboplatin, Gemzar and Avastin. I had great results in spite of being Platinum Resistant. I am now on Avastin every 3 weeks as maintenance and hope it allows me to ride this wave for a while. So far, no side effects. Anxiously awaiting 1st Ca 125 on Avastin alone.
Thanks so much for sharing your experience. It's great to hear how well you're doing. I hope the next CA125 is reassuring. If you need any support, please don't hesitate to get in touch.
I was diagnosed, in A&E, December 2020 CA125 of 144 with high grade serous adenocarcinoma of the ovary which is inoperable.
Initially I received 7 cycles of Paclitaxel and Carboplatin and the last cycle included Bevacizumab, my Oncologist said I wasn’t well enough to start Bevacizumab any earlier. I have just received my 16th cycle of Bevacizumab and since commencing treatment my CA125 has been between 8 and 12.
Apart from a little blood when I blow my nose sometimes, high blood pressure, now controlled by tablets, and problems with excessive mucus, which I have had for years, Bevacizumab has been excellent I would highly recommend this treatment and I am hoping this will be a continuing treatment for me.
Please advise if you require any further information.
Thank you to all involved and your continuing research and support for us all, as we pray for a breakthrough.
Thank you for taking the time to share your experience. It's great to hear how well you're doing. Although this submission to NICE is complete now, and the treatment was agreed under the Cancer Drugs Fund, we really appreciate your feedback.
It is so valuable to us to know our members' experiences of treatment so that we can let others know who may be making the same choices and wondering about how it will be. Although everyone is different, I know our members find it so valuable to hear others experiences.
Please don't hesitate to get in touch if there is anything we can help with, and thank you again for your feedback.
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