Avastin Side Effects

[Kal47]

Anyone who can tell me about their side affects being on Avastin?

Has anyone stopped taking the treatment?

What Happened?

[Bougheycat]

I took it 1st line, was prescribed a course of 19 but just managed 15. It made me very fatigued as my main side effect. But round about number 10 - 11 I started to not feel right, nothing I could put my finger on! Then a few days after number 14 I sort of collapsed at work but was told I had a virus, had a couple more dizzy spells that week then back to normal. Whilst having the actual number 15 infusion I started to feel out of it again and had trouble getting anyone's attention as everything was hard work! Was spotted wheeled aside checked over and nothing wrong again felt better after 45 mins the went home, had a couple more minor dizzy spells which I mentioned and the consultant stopped the avastin! After a barrage of tests decided I had had some sort of seizures brought on by the avastin! Since stopped I have lost the extreme fatigue and no more dizzy spells! Would I have avastin again if I was prescribed it? Yes I would at the moment I am totally clear where as I wasn't at the end of the chemo! But I think avastin effects people differently. Hope this helps. PS I had very low blood pressure so never had an issue with it raising blood pressure! Lynn

[ScardyCat40]

The most common side effects are high blood pressure and protein in the urine. My blood pressure has been raised and I now take blood pressure tablets and my urine is checked at every appointment. When I first started taking it I would get headaches, my nose would feel congested and the nasal passages were irritated. I would often sounded like I was suffering with a cold or hay fever .

[HumbleD]

I was on Avastin for eighteen months and had it intravenously every three weeks. I had my urine test and blood pressure checked before every treatment. When I first had Avastin I had horrendous pain above my left eye but this settled down after a couple of months. My blood pressure did go up but as I suffer with white coat syndrome I did my blood pressure at home and this was accepted by the pharmacy and consultant before my treatment rather than the blood pressure reading in clinic. My blood pressure did start to rise and I had to take blood pressure medication and my GP looked after this side of things for me really well. When I started to have protein in my urine and my CA125 started to rise I was taken of Avastin. I also suffered with very painful joints which has since improved since coming of the Avastin. I also suffered with nasal congestion. After that I was put on watch and wait and will start third line Carboplatin next week.

I hope this helps?

Wendy x

[Alice23]

Hello Kal

I also had severe joint pain and epic spontaneous nose bleeds. I had 5 rounds on my first line added to taxol and platin but it did not work after two rounds. The nose bleeds got really bad and severe bleeding post debulk. Not a very positive experience for me!

Hope this is useful.

[Whippit]

Hi Kal

Lynda puts her finger on it when she says Avastin affects people differently - as do all drugs and there is testimony for that from all the helpful comments above.

I've been having Avastin every third week since the end of October, and had my first infusion post-chemotherapy 2 1/2 weeks ago so I'm still watching out to understand what side-effects Avastin is causing compared to the side-effects I've experienced over the last 18 weeks of having double-agent chemotherapy, loads of other drugs and injections, plus Avastin.

The week after having just Avastin my joints ached and I felt very tired. Paracetamol didn't help but I thought at the end of the chemo treatment that my back-ache was perhaps due to a lack of core strength from having so little exercise for 18 weeks. I saw my GP and asked for painkillers so I could see if I could get a programme going to work up my fitness. He suggested taking an anti-inflammatory pain killer and prescribed Naproxen suggesting I took it for a week whilst I started my get-fitter plan.

When I say get-fitter, I just mean walking briskly, cycling or swimming for a half hour each day and building that up. I do feel better this week and have more energy and I'm clear of pain or back-ache at the moment - but then I'm also nearly into my third week after the infusion of Avastin. I'll know more after next Wednesday when I have my next lot but at least I feel I have a sort of plan to work through if I get a repeat of all those symptoms and I feel as though my body will be in a better place.

I've found this thread really helpful and interesting. It would be helpful for those of us on maintenance avastin to compare notes.

I just wondered whether you're considering Avastin as an option or whether you're already on the programme.

Love Annie xxx

[Kal47 in reply to Whippit]

Hi Annie

I have been on Avastin since

Jan 2013 along with chemo and now every three weeks.

I have been told I will be on it for life. I just don't know if I can take these side affects.

I am curious to know what happens when you stop the Avastin

Or if I can take a break from the drug for awhile?

Kathy

[Whippit in reply to Kal47]

Hi Kathy

I'm really sorry you're suffering so badly with Avastin side-effects. What sort of things are you experiencing? You have been on it quite a long time and I wonder whether the side-effects build up. It must be tempting to try and get through the problems associated with it as it must be doing you good. I was told I shall be on Avastin until it stops working, i.e. the tumours grow, or I develop some serious side-effects.

I think your question can probably only be resolved by discussing it thoroughly with your oncologist and asking them what happens when you stop taking Avastin and whether there's anything they can recommend in the meantime to help you cope with the side-effects. Actually I got more sense re pain management from my GP than the oncologist, so it might be worth discussing with your GP if you have good faith in them.

I almost fear to repeat what my oncologist in Wales said about Avastin because some of what they say here is informed more by funding (or lack of it) than medical fact. My consultant in Wales was trying to play down Avastin because she knew my health board wouldn't fund it. She said that my tumours would grow back quickly after the course of Avastin has finished. I share this because it gives you a direct question for your oncologist.

What a dilemma for you. I really feel for you as I frequently wonder just how much discomfort and misery I could tolerate to gain additional months or years of life.

Please let us know how you get on. My current oncologist in England has talked about carbo-platin and taxol followed by PARP inhibitors when I need treatment the next time. I heard at Westminster that PARP inhibitors are less invasive as they're in pill format and they have less side-effects than Avastin and they are associated with good lengths of remission. I guess if you're considering ceasing one treatment it's good to have a plan in mind to manage whatever falls out from that decision.

Take care, and good luck with this. Love Annie xxxx

[rjhs]

Hello all,

My experience with Avastin was much the same. I had 17 infusions in total, three post de-baulking surgery and combined with carbo and taxol and 14 stand alone. I had the sinus headache and congestion, raised blood pressure, for which I had amlodipine, and, like the others very achey joints. I started the course in March 13 and finished in January of this year. I was fine during the summer and managed well but I did find that towards the end of the course the colic and wind pains I had had all along got worse and developed into really painful spasms and I think that was a sign that I had had enough. Reading up about it I found Avastin has a very long half life so the after effects last for several months while the drug leaves the body. It has taken three months for the various aches and pains to subside and my bowel still protests strongly every now and then. As I have mentioned before, my onc. has mixed feelings about Avasting as he thinks it 'ties people to the hospital' and it did take me a while to really get to grips with the fact that this period was remission and not continuing 'active treatment. A bit muddled but I hope you understand what I mean; the plus side of course is the psychological benefit of the three weekly check up. On reflection, I think I would have probably really understood the pros and cons if I had had it offered as a second line treatment with the benefit of the accumulated knowledge of this forum rather than what I assumed was an integral part of the first line treatment.

Hope this is not long to read!

Rita

[Kal47 in reply to rjhs]

Thank you so much for your reply.

How are you now that you have stopped the Avastin.

I have been told that I will be on it for the rest if my life.

Not sure why they stopped your treatment?

I have talked with my doctor and he really has nothing to say about my side affects.

What is your ca125 at this point.

Please keep me posted Rita

I would love to hear more.

Kathy

[rjhs in reply to Kal47]

Hi Kathy, I had Avastin for 1st line chemo only which is the protocol here. It is funded for a year which is 17 or 18 cycles and then stops but when given with 2nd line treatment, usually with a different combo of chemo drugs it is open ended for some reason. Once it has been given for 1st line then it cannot be given again in the NHS.

As I said previously the usual side effects, high BP, congestion, various infections, aches and pains were tolerable with help but the cumulative bowel spasms were in a different league and really impacted on my daily life. Having said all of that it did its job and kept my CA125 very low and so far so good. I finished in January and the side effects are wearing off

It does point out in the 'blurb' that long term dosage may have to be discontinued if the toxicity is too great. If you feel that your daily life is being compromised too much then I would have a chat with your onc. They do seem to dismiss the side effect issue, I find, and you need to be polite but assertive about your situation and see if there is anything stronger to help you with the joint pain. Perhaps it would be possible to take a three month break and see how you are feeling and how stable you are.

The drug is not available for everyone in the UK in any event and there are other things out there. Avastin is not for everyone long or short term and if you decide your body has had sufficient then it seems to me to be a sensible decision based on your individual needs.

Chin up, Ritax

[gina]

Hi I have been on Avastin for a year firstly with chemo and now on a three weekly programme.

The main side affects for me have been the joint ache and a runny nose. My blood pressure is kept under control by medication. I hope to stay on the Avastin as long as possible.. Georgie

[Hidden]

Although I haven't any experience of Avastin (and am not likely to have in the future), I must say this thread is so interesting and thank you everyone who has written about their experience of Avastin (very informative)

Best wishes to all love x G x

[enagogo]

My experience of Avastin has been pretty similar - the runny nose with a little bleeding, constipation and over the last week or so I've started to feel weak (I think my body has had enough too). My CA125 is creeping up too - I'm due a scan then probably third line treatment next.for me. (I've completed 6 carbo/gem/Avastin cycles, then 8 separate cycles of Avastin)x

[Whippit in reply to enagogo]

Hi Enagogo, yours is such a thought-provoking comment. I hadn't prepared myself for how Avastin comes to a close and the fact that I will have to go to hospital every three weeks until the Avastin stops working and then go straight back on to chemotherapy. I hadn't really taken that into account and I'm really grateful to you for mentioning it. I find it so helpful to be prepared.

I feel quite silly now that I didn't think about that. It's obvious isn't it!! Much love xx Annie

[Hidden in reply to Whippit]

Hi Anmie.. It's interesting too that Vicky (I think) was saying that the post treatment with Avastin is in effect, a remission treatment to extend the between treatment period rather than a continuation of the therapy. So although you have to go every three weeks ( I think) you might, on averages, get a considerable time before a full chemo regime again. I hope this for you very much. Xx

[Whippit in reply to Hidden]

Yes that's it Sue, I'm just relieved to have seen in that way now rather than being disappointed at the end of remission that I didn't have any hospital-free months. I resented so much the follow-up appointments last time and they were every 3 months compared to going in every 3 weeks. Now alongside Avastin I shall have an oncology appointment every 6 weeks and a scan every 3 months. The upside, as Rita says are the reassurance of having regular check ups and for me a chance to look forward to a summer of days in London and more sightseeing! I'll need to start a 2014 list. Any suggestions anyone? xx

[Izzystep]

Hello Kal47.

My side effects after 6 treatments has been constant runny nose, think I will buy shares in Kleenex tissues. Nose bleeds, often caused by blowing nose too hard.

Dizzy spells that I think is due to a rise in blood pressure. Already on 5mg Ramipril, seeing GP Monday to discuss increasing it.

Today I have had an ache in the lower part of my back.......not sure why, but reading other posts seems this may also be a side effect.

I also have a touch of diahorrea, which is unusual as I am normally constipated.

One size doesn't fit all.......we all get different side effects, some worse than others.

If the Avastin does its job and keeps the cancer at bay then a few side effects are worth it.

I will continue as long as it's doing me good. Love Izzystep xx

[Hidden]

Dear Kathy,

As you are very worried about side effects it might be a good idea to ring the ovacome helpline tomorrow tel [phone] or 0207 299 6650 they will be able to advise you.

Or you could get in touch with your oncology team and ask their advice.

Best wishes x G x

[Kal47 in reply to Hidden]

Hi Gwyn,

I live in America.

I had ovarian stage 3.

I have been on Avastin since

January 2013.

I was given Avastin along with my chemo.

The right side of my body is weak and I cannot raise my right arm.

I am so fatigued.

I can deal with the runny nose and the fatigue but the joint pain becomes so bad I just side and cry.

I am on a study and they say I will be on Avastin the rest of my life.

The quality of life I am experiencing is sedentary

I now take opiates for pain and gabapentimin to sleep.

I need a break.

If I refuse a treatment is that ok or shall I just stop treatment all together

I am so upset

Plus I have gained so much weight because of lack of movement and my mind is muddled. Please help

Kathy

[Hidden in reply to Kal47]

Dear Kathy,

I am so sorry that you are having such a hard time, it must be very frightening for you, there are other people on here that have stopped Avastin because of problems, It might well be time for you to stop and there might be other types of treatment that you could have, when you were told that you'd be on it for life this means that you would be on it until such time that it is of no longer use to you ..I think this might be that time, but it doesn't mean the end of the road it means the end of Avastin, it might be best if you have a break from treatment for a short while to give your body and mind time to recover.

Thinking of you and praying for you now.

Best wishes love x G x

[Hidden in reply to Hidden]

Ps if you notice there are a few people on this thread that have stopped Avastin, and are still here... and are now having other treatment so please do not worry if you need to stop. xx

[HerThing]

Hi Kathy,

It is sad to read how difficult you ar finding things with the Avastin. I think it is difficult to establish what is the best thing for you to do and especially so because you're in the States where the protocols are different to here. I am not even sure if the dosage you are on is the same as the ladies have over here. I'd suggest you need to address your problems to your oncologist as he is the person responsible for your care and has the greatest knowledge of your condition and treatments. I would also underline what Gwyn says, there are some here who are no longer on Avastin and are now on different treatments. There are also many more who have not had Avastin at all and continue to do well. Despite what has been said here, I am not sure there is any evidence to suggest stopping Avastin will cause the tumours to come back more quickly. Again, perhaps that is a question to ask your oncologist as he will have access to appropriate data and of course qualified knowledge and experience. Even if it does, it doesn't necessarily mean that a recurrence can not be controlled with a different, perhaps less distressing, treatment.

I am so sorry I can't be of any real help other than to encourage you to speak to the medical professionals, but sometimes that is the very best advice we can give.

Hoping you find a solution to your very real problems and soon feel very much better than at present.

Hugs

Andy x

[TrishLey]

I have been on Avastin since September 2013. I don't mind trips to the hospital so much as I have always felt that I am being checked on a much regular basis than if I was just visiting my Oncologist on a 3monthly/ 6monthly basis. Then again, the hospital is only 10mins away from where I live. I have joint pain and fatigue that is gradually getting worse but is still very tolerable. For someone who suffers from headaches it hasn't increased them in fact I think they have lessened over the last 9 months. I am going to stick with it until August. My Oncologist told me that there is no real positive studies for long term Avastin use that would suggest staying on it indefinitely. All the best - Trish

[Bohunter58]

My wife has been on Avastin for 3 months, she now has a perforated bowl from this drug. Doctors told us there was a very small chance of this happening, but we decided it was worth the risk...not so sure that was the right choice. She is still in the hospital recovering, her white blood cell count is very low and platelets are low, draining fluid from her stomach. She is improving over the last couple of days, praying she pulls through this.