Just on Avastin now: I’ve done Chemo, and will... - My Ovacome

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Just on Avastin now

Flower2011 profile image
36 Replies

I’ve done Chemo, and will just be on avastin now for 12 months- does anyone know if avastin affects your blood count so you can’t have it. Twice I had my chemo put back and had to have an injection for it, but don’t know if that was because of chemo or avastin. Thanks for any advice

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Flower2011
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36 Replies
Lind58 profile image
Lind58

Best of luck on your journey ❤️

Flower2011 profile image
Flower2011 in reply toLind58

Thank you x

Joanie12 profile image
Joanie12

Hi, I was on it last year for about 11 months but recurred and went back on chemothe. I found it very doable, joint pain, stuffy nose but I was OK and my bloods were checked before each infusion, also it is a lot shorter infusion so you won't be there for most of the day. You will smash this, go girl!! Good luck, joanie

Flower2011 profile image
Flower2011 in reply toJoanie12

Thank you that’s good to know

Lyndy profile image
Lyndy

Hello

Avastin, as I understand it, works differently to chemo. It is acting to prevent the cancer trying to restablishing itself by developing new blood vessels to feed new tumours. I had no problem with my immune system while on it but it does have some irritating side effects such as snuffles in the nose and high blood pressure but this will be monitored. Generally it is much more relaxed- I took time off to have a tooth fixed I remember. The other thing I learned which might be helpful is that no one seems to know how long you should take it. In the UK we are offered 18 sessions I think but that is what they will pay for - not because that is the clinical ‘must have ‘. Best of luck with it- I rather enjoyed my time on Avastin- I felt looked after and monitored without the slaying effects of chemo xx

Flower2011 profile image
Flower2011 in reply toLyndy

Thank you that’s really helpful I was worried it would be unpleasant like the chemo/avastin combo x

jenny8c profile image
jenny8c in reply toLyndy

I'm about to start Avastin and root canal work. Can you tell me what dental work you had done to delay your Avastin please? Many thanks xxx

27-359 profile image
27-359 in reply tojenny8c

I was told that I could not have invasive dental work while on Avastin. Luckily I didn't need any. I believe you need to stop the Avastin for a while if the dental work is really important.

jenny8c profile image
jenny8c in reply to27-359

Many thanks - I will ask about this xxx

Hi. I began carbo/caelyx/avastin (avastin trial) 5 years ago. The chemo put me into remission after the 6 months and avastin has continued as maintenance for the last 4.5 years. The only side effects I've had in that time from avastin are a runny nose (mostly in the morning and when I eat but sometimes not at all) and raised blood pressure which I have to take meds to keep down, as the trial doesn't allow your BP to raise above a certain number. I hope your experience will be as good as mine. Best wishes. Pauline.

Flower2011 profile image
Flower2011 in reply to

That’s sounds positive, and your still on avastin after 4.5 years, they are only suggesting 12 months in the UK.

Unclear profile image
Unclear in reply to

Hello - it’s very encouraging to read your success on Avastin. Do they monitor your CA125? I am currently on Avastin but seeing my CA125 creeping up and almost out of normal range. It worries me. Thank you.

in reply toUnclear

Hello Unclear. Yes, because it's a trial I'm on, I have to stay within the rules of the trial. I'm well monitored (3-weekly) : by the trials administrator, then my onc, then the nurses where we have our infusions for all types of chemo/trials and all sorts of cancers. The trial also requires me to have 3-monthly scans. My CA125, urine and blood pressure must all "obey the rules". If any get over the limit, or there's disease progression, then I'm off the trial - which it seems is beginning to happen now. A recent scan showed a tiny new growth and my ca125 has risen a little more than expected. I'll have another scan quite soon and if the avastin hasn't been able to control the new growth and the CA125, I'll soon be off the trial and back on the chemo I suppose.

If you're not on a trial, then it will be up to your onc to decide whether to continue or not. Avastin is a maintenance drug and not intended to control growth (chemo does that) but it has been known to.

I was 3c when diagnosed in Nov 2011. Managed 18 months remission from 1st line of chemo. I'm BRCA neg. No idea why I've done so well on Avastin but I think this is what is being learnt now. Could be simply that it suits my genes. I'd always been healthy. I was also lucky to be in the right place at the right time to get onto the indefinite trial. It was on offer in many countries (including UK & USA).

I've had a damn fine run from avastin and I'm grateful for every healthy day I've had. Wishing you the same good fortune. Pauline.

Natsmb profile image
Natsmb

I've been on avastin for 9 months now. for me personally the avastin has been pretty tough. Not as awful as chemo but it's definitely caused some problems. Blood count hasn't been one of them Fred I don't think it's supposed to impact blood count.

Avastin is an immunotherapy drug in for me, it has heightened my body's reaction to any food that I was already somewhat sensitive to. I have to be very very careful because if I eat any food with sugar or rice, oatmeal, wheat, or any kind of grains, I get very ill very quick.

I will get severe muscle spasms and knots in my muscles that burn and ache, my joints become very sore and hollow feeling, my ligaments become extremely tight and sore like I've torn them. I will feel really really tired and fatigued and over all extremely fluish and miserable. I've learned to simply eat nothing with grain in it and no sugar or caffeine. That has limited much of my symptoms at this time. other than that, stuffy nose particularly within the week after receiving the chemo, and sometimes sweats After eating which could be related to the flare-up of my sensitivity due to the immunotherapy. However, I am an exception to the general rule and they company Genetech

was very interested in my experience so hopefully it shouldn't be quite as drastic for someone else like you. But keep that in mind that if you're getting these flare-ups of pain and sort of flushed skin and hot flashes and tightening up muscles it might be something you're eating that your body is now sensitive to that it wasn't before the avastin.

Flower2011 profile image
Flower2011 in reply toNatsmb

I’m sorry you’re having a bad experience but if it’s related to what you eat I will start a food diary just in case. I don’t have sugars or caffeine anyway apart from natural sugars in fruit etc I do like oatmeal though so will keep my eye on that when I eat. My last treatment I had the worst symptoms afterwards and I wonder if that was food related.

Thank you for your reply and good luck with your continued treatment x

Klorakas profile image
Klorakas

My wife is on avastin and she was taken into hospital after being diagnosed as Neutropenic, low white blood cell count primarily, caused by avastin. She had 5 days in hospital on drugs to get her white blood cell count into the normal range ie 4,500 to 10,000. My wife’s white blood count had dropped to 1,000. Hope this helps, good luck with your treatment.

Flower2011 profile image
Flower2011 in reply toKlorakas

Oh dear, I have struggled with my white blood count, the neuts (not sure if that’s the right word), keeps dropping below 1000 and I need an injection, I was hoping that was the chemo on top of the avastin. We will see. Hope your wife is recovering well and good luck to you both.

mrstadpole profile image
mrstadpole

I finished Avastin after 18 treatments in March2019.I was monitored throughout. Blood pressure did rise slightly but not enough to take medication. I experienced a sore mouth and slightly stiff body in the morning but it was perfectly doable for me. The infusions only lasted 15 mins but I still had to travel a fair way to my nearest hospital, every three weeks.

As Bevacizumab(Avastin ) is a monoclonal antibody it should not affect you as chemo would. Good luck with the treatment.

Ann x

Flower2011 profile image
Flower2011 in reply tomrstadpole

Thank you I’m hoping will be ok, I want to book a deserved holiday in the sun, my hospital is only half hour away so not too bad. Glad you’re at the other end of it and continue to do well. X

mrstadpole profile image
mrstadpole in reply toFlower2011

Hope you manage to book the holiday of your dreams. .Enjoy!

I went to the States a week after my 18th (and last) Avastin.

Ann x

Flower2011 profile image
Flower2011 in reply tomrstadpole

Fab x

abhijeet9388 profile image
abhijeet9388

My mom was on avastin last year, she had very good results with avastin initially but later was stopped after 8 cycles due to cancer progression, as far as side effects is concerned I would say not much just weakness for day or 2, my mom was happy with it. All the best!

Flower2011 profile image
Flower2011 in reply toabhijeet9388

Thank you x

jenny8c profile image
jenny8c

I am exactly the same as you - just about to start Avastin - a week tomorrow but have a history of delayed chemo due to blood not being right so was very interested in the replies you received. Looks like we are in with a good chance of being OK. Hope it all goes well for you xxxx

Iwillbeatit profile image
Iwillbeatit in reply tojenny8c

Good luck Jenny see my reply to flower you will be better on avastin and get your life back

Flower2011 profile image
Flower2011 in reply tojenny8c

I’m starting it a week tomorrow too, so good luck to us both x

Iwillbeatit profile image
Iwillbeatit

As Lindy and Joanie said Avastin alone much more doable. You will gradually recover from the chemo and get stronger. I had chemo put off for low bloods but not so far on Avastin despite a bladder infection and a bad cold that pulled me down bloods still good enough for treatment. I think i am about to have no 8 next week.side effects constant stuffy nose with a bit of blood and achy joints but compared to the way I felt on chemo and its anti sickness drugs and steroids none of that So felt better. my consultant to l d me to go out and do everything I wAnt to do while I am on the avastin which is what I am doing. After 3 month scan consultant delighted its doing its job cancer not grown and no new ones. I am stage 4b inoperable. I hope this helps. Happy to answer any questions.

Iwillbeatit profile image
Iwillbeatit

Sorry in answer to your bit about a holiday I am sitting here in the sun after 2,weeks holiday. My third trip. I use global travel mask on the plane so not to catching germs from the recycled air and gloves. I was told the trays in security are never washed and the tray tables on the plane the next most likely place to pick something up. Advice I was given and . Have f followed and been well. I hope this help s.

Iwillbeatit profile image
Iwillbeatit

Another thought I am sure your consultant has told you. Avastin only targets the cancer cells whereas chemo attacks all your bodies cells good and bad.

Flower2011 profile image
Flower2011 in reply toIwillbeatit

He might have, but I can’t remember so that’s good to know x

Luvliving profile image
Luvliving

Was on Avastin for 14 months. Had to stop due to kidney function/high blood pressure. Now on oral Etoposide. Wishing you all the best ❤

Flower2011 profile image
Flower2011

Thank you, hopefully that won’t happen, and hope you’re doing well now x

Sw21 profile image
Sw21

I am in the states. Had it for 16 mo during and following chemo. Had painful nose, mouth , Achilles tendinitis, and sore stiff joints. Also fatigue and memory issues. Joints and mouth are improving now off it. Also caused severe hypertension, controlled w bld pressure meds.Had lots of blood count problems and delays during chemo, but not after. It decreases blood vessel formation. Purpose is to stop tumors from building vessels to feed themselves. Also decreases it everywhere else. So was amazed to hear Aus 66 was on it for 4.5 yrs! Reason no serious dental work while on it is serious risk of hemorrage. Can’t use it too close to surgery either because delays healing. I hope it helps us.🌸

Flower2011 profile image
Flower2011

Me too, and thank you

Sherrym profile image
Sherrym

I only had Avastin for last 5 of my chemos. I don’t think it affects blood count, that wd be the chemo.

I know it’s tough, but seriously build yourself up by eating the best & lots of everything (healthiest, reference Chris Woollams Rainbow diet) about 3 days after chemo, up to the day or 2 before. Taper off a little for the other days, the 2nd-3rd days after treatment are tough to eat anyhow.

But slam into a healthy veggie curry with tons of turmeric to get your gut moving again 3 days after treatment.

Good luck

Flower2011 profile image
Flower2011

Thank I will take a look at that, we do eat a super healthy whole food diet, mainly veggies but fish couple times a week otherwise I start losing weight. Fish is the only animal protein/product that I eat. I have fresh crushed garlic, ginger and turmeric twice a day as well. Thanks for the advice

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