Avastin: I have been on carboplatin paclitaxel... - My Ovacome

My Ovacome

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Avastin

Madmolly profile image

I have been on carboplatin paclitaxel and bevacizumab had surgery after 3cycles once recovered from surgery had another 3 cycles starting next week I will be on bevacizumab only every 3 weeks otherwise known as avastin. CT scan booked for May don't know if I ned yet. My question is to others similar what side effects to expect anything I should be eating to keep me healthy. I will be having 13 cycles of avastin I know everyone is different but wondered what the general side effects are and what people take to help alleviate any problems

28 Replies

Hi Madmolly

I found Avastin much easier than chemo. Just tired after the infusion and snuffles in the nose. Towards the end (16 cycles) I got nosebleeds. But generally pretty do-able. Good luck!

Madmolly profile image
Madmolly in reply to Lyndy

Lyndy thanks for that feedback good to know

Hi. I found Avastin a lot easier than chemo. I had a slightly bloody nose which didn't give me too much trouble, but the worse thing was extreme joint pain. I had Epsom salts baths at night, which did help, and I have since been told that antihistamine tablets help too, but I would check with your oncologist first.

Jenny

Hi. I trialled Avastin back in 2007/2008. Main side effect is a 'snotty ' nose and occasional nosebleeds with some joint pain. However I had the infusion each third Wednesday and continued to work full time (only taking each third Wednesday off work) so as you can see it very doable. I then had a remission of nearly 4.5 years and to be honest I think it was only the shock and stress of my dad being diagnosed with terminal cancer which caused my recurrence. Even my Oncologist was shocked as Id been doing so well. Good luck, Kathy xx

Madmolly profile image
Madmolly in reply to Katmal-UK

After your recurrence did you manage to get back in remission and what we're you put on after the 4 1/2 years I had stage 4 oc

Katmal-UK profile image
Katmal-UK in reply to Madmolly

I had chemo, went ino remission then went on a trial for Cederanib. After about just over a year my Dad passed away and within a month I had my 2nd recurrence. I again had chemo, went into remission within 3 cycles, had all 6 cycles then started on my third trial, this time in early January 2014. I am still on the trial for Olaparib and remain in remission (6 years 8 months). x

Madmolly profile image
Madmolly in reply to Katmal-UK

That is wonderful. Hate tobe a pain but can I ask what your diagnosis was and how old are you

Katmal-UK profile image
Katmal-UK in reply to Madmolly

Ask away lol. I am 61 now, diagnosed stage 3 BRAC2 in October 2007 with a prognosis of 'a couple of years'. As you can see, still here, still working full time :).

Madmolly profile image
Madmolly in reply to Katmal-UK

I hear that people with the Braca gene do well. Yours is a wonderful result long may it continue.

Hi, I had Avastin for the first time on Friday with my last chemo of carbo/taxol. Joint pain and sore/bloody nose seem to be the most likely side effects, but so far its to early for me to say. Hopefully, as I have virtually sailed through chemo with hardly any side effects, I'm hoping the Avastin will be even better. I'm down for 18 cycles at the moment, as my surgery has been postponed. Best wishes, Jan. x.

Madmolly profile image
Madmolly in reply to dexta2005

Thanks Jan that's helpful you were lucky with the chemo I've found it a bit hard going I am 73 though am on trials and glad that part is over. I have been given garbapentin for joint pain

I find Avastin much easier than chemo with life resuming to near normal. 👍My side effects manageable. Constipation 🙄 is a constant battle, stuffy sore nose, fatigue and muscle aches.

Avastin aside, anxiety is an issue for me which causes sleeplessness nights. During the day, I can control and direct it elsewhere but at night it creeps in. 🙄😀

All in all, Avastin is definitely doable! 👍

Best wishes, Jaki xx😀

Madmolly profile image
Madmolly in reply to Davonian

Thanks Jaki have you tried diazapan at night I have low doz age 2m but relaxes my body and let's me sleep

Summergold2 profile image
Summergold2 in reply to Davonian

Try a thc based gummie from dispensary it works for me. Tried Just about every over the counter items. Melatonin kept me up leg twitches, same with Sprouts calm.... Brand I use is kiva Camino midnight blueberry for sleep. I take a 1/2 or whole and when I wake up to pee or hot flash I am able to go back to sleep

I have been on Avastin for a couple of years I think. I am not sure. I was diagnosed with a kind of uterine cancer that acts like ovarian cancer...whatever that means.

After surgery and 6 rounds of carbo taxol I was in remission less than a year. I started chemo again. The doctor ultimately gave me carbo gemzar and then added Avastin a bit after. I was on all that for about a year and a half, but most of the time I was in remission. It's about 8 months since I have been on chemo (now only Avastin), still in remission. He said I needed a year, so I am 8 months through a year of only Avastin.

My doc thinks Avastin is really helping me. I think he is kind of using intuition, in how much he believes in Avastin. At first I blamed all my side effects (joint pain) on Avastin because they came after I started taking it.

The carbo gemzar that I was on for a year didn't effect me that I knew of. Then it seemed more and more that I was having joint pain... tendons maybe... muscles? I never figured it out. It was pretty bad, but I worked around it. Mostly I sit, but I always have a serious exercise program and I follow (almost) every alternative health thing I can find. The joint aches actually finally let up about 2 months ago, still on Avastin. He says I can only take Avastin a year this time I guess. He also told me side effects can come and go.

I wonder about hair thinning. I think I have lost some. I don't even recall if that's in the Avastin side effects. (I use Caboki to hide it.)

Blood pressure-Oh, I forgot. The Doc told me it raises everyone's blood pressure 15 points. Mine didn't go up. But FINALLY he told me I have a different side effect, where my blood pressure is a little sensitive and sometimes it goes up a little, but mostly stays low. So I did have that side effect.

Now I have a bit of a problem perhaps with my sinuses or something-I can't figure out what. The doctor also just told me that Avastin could effect the eyes. Or it could be blood pressure.... I never get headaches, and by the end of the day I have a bit of one, unless I take Motrin. A few days ago he told me to try Claritin D for two days and report back to see if it's sinuses. I can't tell yet...I didn't take a Motrin just because I want to see if I am better from the Claritin D. It's a little extra stressful now with covid-19. I have been super careful...

I don't want to be negative at all, because I have felt quite good for all this time, and emotionally good. My posts are upbeat usually.

Anyway, I hope I helped with the info. My main message is really that probably Avastin is saving me and it hasn't been too bad at all for me. I think he told me it stops tumors from growing. I guess you hear that too. Good luck and keep the spirits up! At least it's good to know it doesn't always have to be hard.

For me no fatigue, now no aches, no stuffy nose(... but maybe that's my sinus thing that just started?)

Madmolly profile image
Madmolly in reply to carolleigh

Thanks for all that info especially about the blood pressure. I have been given garbapentin for the joint pain and I am led to belief you can take a runny or bleeding nose. The side effects don't sound too bad thanks

carolleigh profile image
carolleigh in reply to Madmolly

Thanks so much for your response...so glad I helped. Yes I think it's not so bad. I think exercise helped my joint pain, but I am completely mystified why it went away.

With all these drugs, I do research, but mostly I resign myself to not knowing exactly, and i just try to keep as healthy as I can.

Just to tell you what I took for joints that I stayed with: Tumeric 1200, Du Huo ji Sheng 2-2.5 grams 2x a day, Collagen UCII 40mg. Tried Glucosamine or Chondroitin., but stopped. Acupuncture and (on and off) self massage with frankincense oil.

(Another item I want to mention, but maybe this is about chemo I guess...no one ever told me that I should take super duper great care of my teeth. )

Stay good!!

Hi. I had 17 avastin infusions 3 weeks apart. No alcohol. Pay attn to blood pressure so restrict salt. The side effects i had were not terrible..swollen tongue some taste changes but nothing serious. Good luck.

Madmolly profile image
Madmolly in reply to Ruebacelle

Thanks for the info my blood pressure is usually spot on but I will monitor this. I do have an occasional drink does this mean now none

Ruebacelle profile image
Ruebacelle in reply to Madmolly

Yep. Alcohol contraindicated while in chemo or any medication

Madmolly profile image
Madmolly in reply to Ruebacelle

I was never made aware of this the whole six months on chemo just finished. Would sometimes have a glass of wine. You think I would have been advised and there was nothing on any literature I wasgiven

Ruebacelle profile image
Ruebacelle in reply to Madmolly

Neither was I. Not until my latest round 4 years in...it was in my fact sheet for caelyx so i asked head nurse then pharmacist who both said alcohol interferes w meds but i remember w avastin American docs said no alcohol no grapefruit so i abstained for avastin only.

Madmolly profile image
Madmolly in reply to Ruebacelle

I am in Scotland but have onc appointment a

Week on Monday so will ask about this. It just surprises me it is not in with the does and do ts in any litetature. I have been on carboplatin taxol and avastin for 6cycles with op I between due to go on 13 cycles of avastin in 2 weeks

Headcover.com is the site i think...not just chemo but all the other drugs anti nausea mouthwash etc plus alcohol is a depressant and dehydrates when we want to hydrate and keep spirits up. I didnt want to hear this as i live in burgundy france! But i dont want anything to interfere with chemo. Also have to pay attention to spices and herbs

Hi Madmolly,

I had my #12 avastin this week. Started avastin on my 3rd cycle of chemo (taxol/Carbo). Just on Avastin now.

Side effects for me are, extremely sore shoulders, in particular at night time. I was taking Naproxen which seemed to ease it slightly but I could only take a small dose because it would play havoc with my tummy, despite taking Omaprozole. So I have now stopped taking Naproxen and yesterday started on Etoricoxib - yet to see if it works but I slept a bit better last night, on and off. I have regularly had to go to sleep in a seated/upright position as this also eased the discomfort in my shoulders.

My hands also seize up at night, so if I wake up during the night and in the morning, I can’t use my hands properly immediately. I have to gently and slowly start moving my fingers until they loosen up. If I try to use them too fast it feels like the knuckle joints will pop out of place - not painful but feels unpleasant.

Runny nose especially first thing in the morning, with traces of blood. And my nose likes to run when I eat too... which is no fun for anyone dining with me ;)

A few niggles in my joints here and there; wrists knees, ankles... I had pain in both sides of my groin for a few months but that seems to have stopped now. Definitely a bit weaker in my hands and wrists, sometimes have to get my partner to open jars, bottles etc, but I’m expecting that to improve once I’ve finished the course of avastin.

All the best. Hope the side effects for you are minimal,

Lisa x

P.s. I have light dumbbell weights 2kg and 3kg, so when my shoulders are not hurting I take the opportunity to do gentle bicep curls and shoulder presses. This does seem to help because it helps keep the strength and muscle mass in my arms as I know I’m not using my arms in the normal way, due to protecting my shoulders from hurting I.e. I don’t stretch up to get things off high shelves or I don’t pick up anything remotely heavy, with an out stretched arm etc .

Madmolly profile image
Madmolly in reply to Meridian14

Thank you for enlightening me as to your avastin side effects I do have somejoint pain mostly knees and ankles. The dumbbells sound a good idea as I sometimes have shoulder pain am hoping however it will be minimal thanks for your imput

Just started my Avastin infusions. Lower back pain was noticeable after about a week. Good for my sanity to see everyone’s posts as to side effects. Going to try yoga this morning. My doctors seem to recommend ibuprofen for pain relief. Naprosyn was my typical pain relief go to.

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