Avastin maintenance dose

Hi there Teal Warriors I had my final chemo last week (first line 3c) and should be feeling relieved that it is over but I am worried about the side effects of taking Avastin over the next 9 months. I am on arm 3 of the Icon 8b trial and have had weekly Paclitaxel and 3 weekly Carboplatin and Avastin.

At my onc appointment on Thursday I was told that I had to stay out of the sun as my skin was likely to blister. I was also told that I wouldn't be able to fly due to the increased risk of dvt (I also have a family history). I have lost sensation in four of the toes on my left foot, I wake up every morning with nose bleeds and have awful headaches and fatigue. I am really starting to wonder if the side effects outweigh the benefits of this drug. Part of me wants to come off it and enjoy some symptom free time and holidays before the monster comes back and another part of me wants to hit the cancer with everything I can.

I have read that the avastin slows down the progression of the disease but that it comes back quickly when it stops. It also doesn't seem to extend life. I am so confused. Can anyone help please?

32 Replies

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  • I was on the control arm of the same trial for 1st line Stage 4. I had 6 months remission after the end of the Paclitaxol/Carboplatin but I had a recurrence after 15 of my 18 Avastins. The Avastin was stopped immediately. It doesn't work for everyone. I was told before I started the trial that when it works the Avastin will extend life by only a few months but I still thought it was worth having. I also understood that the Avastin limits the blood supply to new cancer cells trying to get a hold but can't do anything about those already lurking there, however small. I too suffered from nose bleeds and neuropathy in toes and fingers.

    I understand your dilemma, it's so difficult to know what to do as the treatment options for this horrible disease are often worse than the disease itself.

    Good luck with whatever you decide, I hope you beat it.

    Janine xxx

  • Thank you for that Janine. I agree it really is a dilemma. I'm sorry that you had a recurrence despite the Avastin. I hadn't realised that it can't do anything for the cancer cells already lurking. I think I might need to make an appointment with the trials team to help me to make my decision. I wish you all the best with your treatment.

    Sian xxx

  • Hi Welshandproud, My story is totally different to the above but I dont want to confuse you. I had Gem and Avastin and finished Avastin Oct 2015, I got reduction in existing nodules and then some more. So I am one of the very lucky people it worked for. I got the nose bleeds, tiredness aches and pains but I coped somehow, Avastin was stopped because it was deemed it had done its work. I was originally diagnosed in 2006 and I am still here. I would have Avastin again if offered as it has given me time to live and see my grandson grow from a little lad to an almost six year old.

  • Hi Suzuki

    Your story is really inspiring. I am so glad that Avastin worked so well for you. I just hope that it can do the same for me. I will certainly put up with any side effects if it can have this good a result. Sending lots of love for your continued fight xx

  • Hi... I am also an Avastin success story..my CA125 fell further while I was on it. I found the side effects did not stay constant but waxed and waned. In the end I took the decision to end Avastin after 16 cycles as my Onc believes it works best at the beginning of treatment and it's effects fade gradually.

    I would definitely discuss with your team and agree the way forward together xx

  • Thank you Lyndy. I'm glad that Avastin worked so well for you too and that the side effects weren't constant. That is reassuring. I have an appointment with the trials team tomorrow and hope to discuss my hopes and fears. Keep up the fight xx

  • Hi Sian

    I am on Icon 8b, the arm with all the drugs every 3 weeks. I quit avastin after 16 doses because the peripheral neuropathy got so painful and I am still on medication for it. That was last december and I still have a normal ca125 and no symptoms 😆.

    Susan

  • Hi Susan

    Thank you for your reply.I'm really pleased that your ca125 has stayed constant and that you have no symptoms. That sounds like the Avastin worked well. I'm sorry though that the peripheral neuropathy is still an issue for you. Do your team think that it will improve now that you are off Avastin? What kind of problems has it left you with? Hopefully it's manageable.

    Sian

  • With nerve damage they will not promise anything - that was part of the reason for quitting early. Hopefully it is not permanent. Have had a very painful right foot. Am currently on cymbalta and lyrica - both usually prescribed for other reasons. Vitamin b6 is what seems to have made the difference. I am staking on all 3 for a while. I also have acupuncture which helps and have just started chinese herbal medicine to help heal my nerves (western medicine does not have anything particular to offer in that regard). Good luck with your decision making.

    Susan

  • Poor you. That sounds really painful. The acupuncture/chinese herbal medicine sounds like an interesting route to explore. Thank you.

    Sian

  • I agreed not to take the herbal medicine while I was on the chemo and avastin. Official reason was that they did not want me taking anything that might interfere with the chemo. Real reason was that they do not trust chinese medicine or practitioners. I did acupuncture while on chemo. They are happy for me to do chinese herbal medicine now. As one of the registrars said - now is about fixing the damage caused by chemo and they are not very good at it.

  • interesting that!!! I'm sure that the Chinese medicine and acupuncture will make a great deal of difference. There is a reason why both of these treatments have been around for centuries.

  • Hi,

    I've been on Avastin for nearly two and a half years and have had fairly significant further shrinkage of remaining tumours and nodules since the chemo part of my treatment finished. I do understand how you feel though. I'm currently having a peak in my side effects and am wondering if I should let my body do it's own thing - am desperate to feel healthy if only for a while. My nose bleeds have completely subsided and meds for hypertension caused by the Avastin have contained the headaches but the foot pain, mucus and fatigue are at an all time high.

    I'd suggest you look at the video of the talk Professor Jayson gave at the Ovacome day - he seems to be a big fan and I do have the most utmost respect for him. I'll see if I can find a link. You may be able to do a search on here. I think Claire has previously posted a link.

    I do think that the professionals often dismiss the functional aspect of side effects saying that Avastin is generally well tolerated!

    Hope you're feeling well soon

    Sandra xx

  • Sandra, how did you manage to get Avastin for two and a half years? I had the allotted 18 infusions and am now on nothing! Found Professor Jayson's video really interesting, particularly his idea that you can retreat with Avastin after second line chemotherapy. I had very little trouble on Avastin so would be prepared to do it again. Thanks for posting this video link.

  • I sneaked in by a matter of weeks whilst Avastin was still being funded by the Cancer Drugs Fund. I am greatful for the timing!

    Sandra x

  • Lucky you!

  • I don't take it for granted. One of the reasons I'm staying on it even though the side effects are increasing. X

  • This could be the link (I'm not very techy - I could be wrong 😂)

  • Thank you so much Sandra. This is really helpful. It's easy to just concentrate on the negative side effects without looking at the bigger picture. Professor Jayson certainly believes in Avastin and its effects on OC. xx

  • I have to say I thought chemo was to improve quality of life. I would rather fly and have a holiday. Do you have residual disease and which cell type?

    LA xx

  • HI Lily-Anne

    I agree. I thought so too.I have serous 3c OC. I have a scan next week so will know more about residual disease then.

    Sian xx

  • I gave up on Avastin because of the side effects. I decided I wanted a decent quality of life for the time I have left. Haven't regretted it, but then I haven't had a recurrence.

  • Could I ask how long you took it for and the side effects you experienced please? I'm so glad that you got your decent quality of life and no recurrence. That's great. xx

  • I had one dose while I was on chemo, which made the side effects much worse. My oncologist suggested that I try it again after chemo finished. I tried two doses but had joint pain and fatigue. I had already had a lot of leg pain with the chemo and couldn't cope with any more. I also had the usual sinus problems. I also had to take blood pressure medication which gave me a stiff neck and headaches.

  • It sounds to me like you certainly made the right decision.

  • Firstly well done on finishing the chemo - it's a hard-hitting combination and being off that should see you starting to feel a lot better after a few weeks in itself. It's true that avastin does have its own side effects and risks. Personally I haven't found them as bad as carbo&taxol but everyone reacts differently. I do have the foot pain and occasional awful headaches, luckily not too frequent. I have not been told I can't fly - in fact I flew to Japan in December!! I think I would rather stick to short flights now though, I do worry about the risk but I don't have a family history. You obviously have to take the advice of your team. I have not had any skin blistering either and have not heard of that one!

    I just watched the Ovacome video of prof Jayson which was very interesting - and obviously pro-avastin in the right patients - thanks for posting that LittleSan. It looks as if the new test for Tie 2 could be useful in assessing how long to carry on avastin for, it's not used at my hospital yet but now going to ask about it next time. I've been on Avastin about a year so far and judging by last scan and ca125 it is keeping things stable. I worry what will happen when it stops and am prepared to put up with the side effects if it carries on keeping the cancer at bay.

    Good luck with making your decision!

    Best wishes,

    Madeline xx

  • Madeleine, the Avastin kept things stable for me too. I completed in February and am now on watch and wait - next check up in 3 weeks. Have been trying not to let my imagination run riot over possible symptoms!

  • Good luck for your checkup and keep that imagination in check! Have you noticed you feel less tired without the avastin ? Xx

  • I didn't feel particularly tired on it and was more or less operating 'as normal', so I'm probably not a good person to ask in that respect. Any little joint pains have eased up, but I still feel a bit 'battered' at times and slow to move when I get up in the morning, but after that I'm fine.

  • Thank you Madeline

    I'm glad that Avastin hasn't been too awful for you with regards to side effects. So far it's difficult for me to work out which of the 3 drugs are giving me the side effects. I hope that they reduce now that the paclitaxel and carboplatin are over.

    I was pleased to hear that you were able to fly to Japan. I really felt that my days of flying anywhere were over after my last onc appointment. Perhaps they are being over cautious. I will talk to them about it again today. I was also pleased that you had no problems with blistering in the sun. I just felt that I would spend any sunny summer's days in the shade with a big bonnet like a Victorian lady. Not my idea of fun I'm afraid.

    I am delighted that avastin has worked so well for you. that certainly gives me hope. LOng may it continue to keep you well

    Sian xxx

  • Thank you Sian. And I would imagine the 3 together would be very draining and difficult to know which is causing what, but taxol is also known to cause peripheral neuropathy so you might get feeling in toes back a bit, hope it's not permanent. I was like you and hardly ever took tablets for anything before all this, it's so horrible having to depend on all these drugs with their side effects. I try to think of them as my friends now but that's not always easy!! Xxx

  • Thank you. I hope the taxol effects will gradually wear off. It seems to be a very nasty drug re side effects but a necessary evil I suppose. It is hard to see these drugs as friends I agree but they are keeping us alive and kicking so we should be grateful!!!! xx

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