Avastin: Has/is anyone in England had/having... - My Ovacome

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Avastin

kazrazmataz
kazrazmataz
19 Replies

Has/is anyone in England had/having Avastin for First line chemo for stage 1V as per the cancer drugs fund and if so how long for.

Many thanks xx

19 Replies
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Katmal-UK

Hi. I had Avastin with first line chemo but as a trial. It ran along side carboplatin then continued on its own every three weeks until 12 months were up. I then had a remission of just under 4.5 years. Having finished the carboplatin I returned to work full time whilst I continued with the Avastin. Hope that information is helpful . I wish you well xx

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kazrazmataz

Thanks Katmal, wishing you all the best too, take care xx

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AndreaW

Hello, I've been reading posts on here for a few weeks now but this is the first time I've posted anything, so I hope it helps. I am currently on Avastin. I was diagnosed with ovarian cancer in April this year. I had 3 chemo, then debulking surgery, followed by another 3 chemos. I started Avastin with chemo no 6 and it's going well up to now, my third one is next week and my last one is on 2 September next year, I think that's 18 in total. I'm back at work and leading a relatively 'normal' life. The only side effects I currently have are aching joints and tiredness, fingers crossed that's how it stays!

Andrea x

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AndreaW
AndreaW
in reply to AndreaW

I also meant to say that I had it in combination with carboplatin and paclitaxel and I have it every 3 weeks for half an hour each time. x

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kazrazmataz
kazrazmataz
in reply to AndreaW

I had 2 lots of carbo/paclitaxel but had a rash after chemo 2 so then had carbo on its own chemo 3 had caelyx for chemo 4 and 5 as asked if there was another chemo. I wanted two as thought it would be better than one but one ONC kept saying carbo alone was fine (why do they give us two then as the standard treatment was my question). Also found out later there is another chemo that is classed the same as Paclitaxol but they did not offer it me for some reason. I am finding its a minefield and suspect it might be a postcode lottery if they say I can't have Avastin - unless they convince me its for medical reasons as I have other health issues that need medication that might interact with Avastin.

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kazrazmataz
kazrazmataz
in reply to AndreaW

Hi Andrea,

I always ask questions (too many probably, not sure its a good thing or a bad, get myself in a right state sometimes, Lol) My ONC said my rash would be due to the Paclitaxol so I asked how she knew it was not the Carbo. I gather its more likely to be a reaction to the Pacltaxol as is more common than a reaction to Carbo but both can cause allergies. She mentioned another chemo Caelyx but in the end she said as I was having a scan the following week (pre Debulking) said lets just go with the carbo. After surgery I asked for 2 chemos but the ONC I saw was advising it was OK to just do Carbo but I kept insisting on having 2 although he was going to give me a higher dose of Carbo (I must be a nightmare. Now I keep thinking maybe more carbo would have been better but we just don't know.). Also they did not give me a choice of a slower infusion of Paclitaxol. Later I found out there is another Taxane chemo called Taxotere which is same as Taxol but is mixed with other compounds as its the stuff they mix the Paclitaxol with that causes the allergy. Not sure why they don't offer Taxotere by default for patients who have an allergy or more to the point why they don't offer us all a slower infusion, my mind boggles!

I'm seeing the ONC next Thursday as have a pre chemo 6 appointment and going to ask Avastin, will see how I get on, am aware there might be a medical reason why no avastin for me as am supposed to be on warfarin for life as have metal heart valve (sound like a right nightmare healthwise but am actually very strong and have sailed through the chemos and the surgery was no problem). My issue is going to be if they say no to Avastin will they convince me its not financial.

I will question them on that for sure ie Do they have funding/What percentage of stage 4 patients are on Avastin are on Avastin for stage 3 2nd line as per guidelines/can I elect for treatment elsewhere as per 'Choose and Book' etc etc! If there is a funding issue I will be highlighting the Postcode lottery to be sure! xx

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kazrazmataz
kazrazmataz
in reply to AndreaW

Hi Andrea, many thanks for your post. Can I ask what area you are in and if you asked for Avastin or did they just prescribe it. I am due chemo 6 next week and want to ask them if I can have it. All the best to you xx

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AndreaW
AndreaW
in reply to kazrazmataz

I'm in Leeds, so I have my treatment at St James University hospital. I was offered the Avastin from the cancer funding available (I assume for the Leeds area)? I think I was offered it as my oc is quite advanced.

I had an allergic reaction at chemo 2, so they slowed it down for chemo 3 and I was fine, so they continued with carbo and pac for the remaining 3. I was given the option of not having pac if I didn't want to, the reason is that another allergic reaction could be dangerous so it would be better to not have it. I was also told that carbo is the best one to have as it has more effect than pac. But, I want to throw everything at it so I will take whatever I can. I am always asking questions and I take a list with me, it really does help. The Doctors want us to ask questions and tell them about our symptoms, so they can keep learning too. Let me know how you get on. Andrea xx

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kazrazmataz
kazrazmataz
in reply to AndreaW

Hi Andrea, Spoke to Specialist Nurse earlier this week yes said they do administer Avastin at the hospital I go to but not offered me yet am going to ask as see consultant 20 Nov. Nurse said they will then book a scan as had 6 chemos plus interval Debulking after 3rd chemo. Do you know if you are getting a scan soon or not? My cancer is stage 4 and was on liver/plueral effusion in lung so is advanced.

Many thanks

Karen

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AndreaW
AndreaW
in reply to kazrazmataz

Hi Karen, I had a scan after chemo 6 a few weeks ago and things are looking good so far. There's a tiny nodule on my lung but it was there at the previous scan and hasn't changed in size. They can't tell whether it's cancerous or not as it's so small but my bloods are fine, my CA125 is really low at 7. I had my first Avastin with my last chemo (no 6). I was told it has to be taken with chemotherapy to be 'eligible' for funding. I'm classed as advanced stage 4 as it had spread outside the ovaries to my omentum so that was removed as part of the debulking surgery. I have my 3rd Avastin next Wednesday 12th November and side effects have been minimal up to now, fingers crossed! Andrea x

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hmmartin

Hi, I was diagnosed with stage 4 OC in April 2013. I had 3 cycles of carbo/taxel, reassessed for surgery, but still not recommended. Avastin was added from the 4th cycle. Still no surgery at end of carbo/taxel regime. Avastin continued at 3 weekly intervals. I felt very well. However, CT scan showed disease progression. Avastin discontinued. It is a shame that it is not possible to identify which cancers will respond, but we are all on this unpredictable journey, and I am very grateful that health professionals keep trying. Maureen

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kazrazmataz

Many thanks Maureen, hope your treatment goes well xx

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Hidden
Hidden

i have stage four two, might have to go on 2nd line soon, ca up.

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kazrazmataz
kazrazmataz
in reply to Hidden

If poss could you let me know if you have been prescribed Avastin. Hope you get good news as they say CA125 can be up for other reasons. Good luck xx

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baxbird

Hiya, I've got 3C OC and started Avastin alongside carbo/taxol as first line . I was having weekly chemo and the. for the last 2 cycles Avastin as well. I've stayed in Avastin since (diagnosed Jan 14 finished chemo in July 14 ) Live in Hampshire if that helps

Dawn

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kazrazmataz

Thanks Sally, hope you are having fun xxx

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Bookermel

Hi I was diagnosed on Aug 2012 with (having previously had preventative surgery about 5 years before due to being BRAC 1 +) once we'd sorted out the ascites and plural effusions that had developed with Carboplatin, we then added Paclitaxel, and by then I was lucky to have private cover through work which covered Cancer treatment. We found an oncologist recommended by my NHS and challenged with the addition of Avastin. (4th round). Just to let you know how my toleration levels are (we are all so different) I came off Paclitaxel after 4 cycles due to increasing neuropathy, and Carboplatin after 9 cycles. My Ca125 had reached 25 but my white platelets were quite low and only recovering slowly. Ca went down a further 3 points to 22 on the next treatment and then just started to rise initially very slowly but consistently. That in addition to the fact that my WBP's were struggling to recover made me feel that the risks involved with taking Avastin outweighed the benefit. But this is just for me and many people seem to have very good benefits from it I might just be a bit wossy!

Side effects for me were not allowing my WBP levels return to normal stayed low throughout, a lot of nosebleeds. More headaches, and because I garden alot non healing of scratches and cuts and increased bruising. Not too bad really.

But I wasnt convinced it was working well for me and couldnt get my head around the fact that if anything happened to me while on Avastin Surgery could be extremely complicated and also posible bowel perforation.

Sorry long answer but hope it gives you some questions and answers!

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kazrazmataz

Many thanks Bookermel, I must admit I am concerned about side effects of Avastin but I am going to ask and compare notes with all here, thanks for getting back to me, all the best to you x x.

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