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pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Since I'm on Xeloda and Avastin I got some undesired symptoms .Did any of you ever had any experience on it?
Headache I think nose and sinus are involved, is more at the level of my eyes and Eyebrows .
Deafness and pain in left ear.
Very tired, short of breath wen walking and feeling like heavy and painful legs.
Some back pain .Very low near my bottom!
Loose some balance specially when is dark!
Thanks in advance for your response mates!
( not vey worrisome since all started at the same time as chemo. , I hope! )

steved
Posts: 836
Joined: Apr 2004

All sorts of little niggling symptoms can occur with both of these and they are usually not a problem but the deafness and unsteadiness does sound more worrying. There is a rare side effect of avastin (<0.1%get it) called REversible Posterior Leukencephalopathy Syndrome (RPLS) where the symptoms are mainly neurological with confusion and lethargy often with it.It probably isn't that but enough of your symptoms go beyond just the minor to warrant a conversation today with your docs. It is reversible even if it is that.

Never had these problems myself- bit tired some days. Get it checked

steve

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

I've suffered hearing loss back about 8-years ago after I had done some 5fu chemo, radiation, and my original resect surgery. For a long time I was almost completely deaf in one ear - over time, I recovered though there is noticable tone difference.

As for tired and shortness of breath...I want you to think Avastin.

People tout it here as a wonder drug - and it does outline some benefits from its approach with regards to cutting off blood flow to viable, physical tumors.

However, Avastin comes with a very dark side...what they don't tell you - and what you don't think to ask them is this...

Avastin can cause congestive heart failure over prolonged period of use. The makers of Avastin do not give a timetable for when that might occur.

I was on that drug for about 8-9 months...I had no breathing or heart issues prior to this. After discontinuing that drug with my onc's approval and supposed supervision, I began to develop issues with catching my breath in between heartbeats.

It was pretty scary...like all the wind had been knocked out of you and you could not breathe back in rhythm to get a fresh draw....it happened 100's of times a day.

I don't notice it as frequently now, but I still catch myself sometimes...the damage has already been done - the issue for any of us, is are we affected by it or not.

From what you are describing, I would say you are beginning to fit the profile for someone who may be suffering heart issues from that drug - thus, the shortness of breath and heavy, painful legs.

If your legs and ankles were to get swollen, this would be a further indication, but would probably mean it would be at a later stage...perhaps, these are just the initial, early warning signs.

I'd check with a cardio as a precaution...one of these days, I'm going to follow suit.

Back pain? Yeah...hip pain too....too much radiation to my hips and up my tailpipe, including going up the small of the back. Most days it is hard to bend over to tie your shoes. Picking something up off the floor can be agonizing. Just can't bend without pain.

Lose balance? Sure. Last year with Folfiri, I fell several times with no warning. I could turn around and just fall into the wall and couln't stop it.

Balance was horrendous and I felt like my wheels were just shot. Balance is better now since chemo ended, but if I turn the wrong way, I can still find myself 'leaning' to one side trying to catch myself.

So, chemo and Avastin - you've answered your own question:)

Good luck, mate!

-Craig

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Thank you for ur wise coments, Craig will check about hart with my onc next Monday and will ask for an electro.
Hugs to both!

luvinlife2
Posts: 172
Joined: Jul 2012

I agree....I think it's the Avastin.

I'm almost 4 years on it with no similar issues (touch wood).

Get it checked!!! :)

Annabelle41415's picture
Annabelle41415
Posts: 4358
Joined: Feb 2009

The balance issue was a slight problem but it didn't happen often. Let your doctor know what you are experiencing because those sound like it could be a side affect of the drugs. Hoping you are feeling better soon. Enjoy the beach and relax.

Kim

janderson1964's picture
janderson1964
Posts: 1784
Joined: Oct 2011

I did 12 rounds of FOLFOX plus Avastin
10 rounds of FOLFIRI plus Avasrin
12 rounds of FOLFIRI plus Vectibix

I think at one time or another I experienced all of those symptoms.

Jeff

mukamom's picture
mukamom
Posts: 371
Joined: Oct 2010

Avastin along with the study drug, and has had issues with shortness of breath, and dizziness...one night he lost his balance and fell, injuring his foot. Avastin can cause blood pressure problems, along with the heart risks.

Robert has had these problems ever since he started chemo back in Feb 09, and the docs pooh phooed that it was the chemo causing these symptoms. The chemo wasn't responsible for his itching, and hoarse voice either...yeah, right, whatever.

Talk to your docs

Hope you get to feeling better!
Angela

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Please talk to your doctor about all of these. I know everyone is quick to blame chemo or Avastin in particular, but you don't want to be overlooking another medical issue either - caused by cancer or not.

It may be worth taking a break from Avastin to find out if that is causing the issues - but you need to have all other options checked out too.

I hope this is all nothing serious.

Sonia32's picture
Sonia32
Posts: 1069
Joined: Mar 2009

dont make me come over to spain and drag you to your.onc! speak to them tomorrow!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Feeling much better now that I'm off chemo!

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

pepe

thanks for sharing and for your post.

I've had 24 weeks of Folfox6 + Erbitux (Erbitux is Avastin's competitor)

but by Mid September I am to begin Xeloda + Avastin as "maintenance chemo".

my question is this...

How long have you been on this combination of drugs?

I have read that Xeloda is a pill form and my doc said i will take 2 pills in the morning and 2 pills in the evening. Is this the case for you?

If yes, can you share what size of pills you are taking?

also... is or has your cancer reduced since being on this combination? or are you on maintenance ?

thanks for sharing

hugs

Joe

Connie43
Posts: 44
Joined: Mar 2011

I had 1 treatment of Avastin and had serious bad side effects and can never have it again. I thought it was muscle pain from moving the couch and didn't call the dr. for 10 days. I'm glad it has been good for many, but it is a bad word in our house.

Connie43
Posts: 44
Joined: Mar 2011

I had 1 treatment of avastin and had serious bad side effects, but did not call the dr. for 10 days as I thought I had muscle pain from moving the couch. Avastin is now a bad word in our house, though it has helped many others.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

you will find away.

you are as tough as nails.

hugs,
pete

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Joe I'm having 2 pils in the morning and 2 in the night , it's 2000 mg a day .
For the moment is working quite well ( dropping CEA every time ) ?
Hugs friends!

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

hi pepe,
is your hearing better? how about the balance? if not better please get it checked out with an ent doc. i had been having very slight hearing loss in my right ear before i was dx with cancer in dec 2010. i thought it was age related (i am now 64) but when it got worse when i did chemo i blamed chemo. i finally went to an ent for a hearing aid in dec 2011. (i completed folfox6 july 2011) he sent me for a brain mri which i thought was crazy but it turned out he was a very smart doc. i had a 3cm acoustic neuroma. this is on the 8th cranial nerve. it was compressing the brain stem & other parts of the brain & the docs said it would kill me in 3 years. when in surg they found a 2 1/2 cm tumor on my 7th crainal nerve which is the facial nerve. my docs, an ent & neuro surg, did a fantastic 11 1/2 hrs surg & today i have NO visable effects. my balance is now normal & to look at me you would never know. i am totally deaf in the rt ear because of surg but i do not need a cochlear implant as left side hearing is normal & i do real good. they are rare benign brain tumors so i doubt that is what is causing the balance & hearing problems for you. (chemo did not make the hearing worse it was the tumor) 1 in 300,000 people get it but hey that means someone has it. i had surg feb 8th 2012. so i thought i was medically clean but nooooo. got the news in june about the metastatic colon cancer. my onc wants at some time to have genetic tests to see if my dna/genes cause me to develop tumors. best of luck to & please let us know what happens. sorry this is so long. i do know we all are at risk of perm hearing loss due to chemo so i hope my good ear will not have any loss!
hugs
judy

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

l always been dealing with sinusitis problems ant both xeloda and avastin may aggravate the sinusitis.
Despite that he will wait the results as i'm having a pet in a week!
Thank you every body!

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

good luck on your pet scan. praying for a good report! hey i wish i was at the ocean today as here in indiana it was 96! spent alot of time in our pool but that is not the same!!!
hang in there!
hugs
judy

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