Please post your two cents on Herceptin "side effects" real or perceived!

[panicked911]

I was diagnosised 9/14/05 ( my daughter's 10th b'day). lumpectomy right side 10/5/05 - immediately put on tamoxifen - started herceptain week before thanksgiving - began lupron shots 12/1/05 - switched to arimidex the following week. Aches and pains started within a week. mostky joint aches and i the feet and arches. Wet thru reexcision ( came up clean) 1/16/06 - contnued with weekly herceptain - started radiaton 2/12 - ended last monday in march. Cotinued weekly Herceptain thru April 18. Now doing herceptain once every three weeks.
Interestigly i developed a sinus infection early March - was given leviquen - had a horrible reaction muscle aches beyond belief and severe pain - switched to ceftan pain abated 50% still have it mostly in knees ad elbow joints. - was convinced it was the leviquen - now wondering if it a combo of the antibiotic and herceptain and arimidex.
Liver function test slightly elevated since end of march when I started Rhino aquacort for the sinus infections ( which i could blame the herceptain but I had this prior to BC diagnosis) .

I seem to be tolerating it much better at 3 week intervals tha weekly- have been ADD since November - can oly go back to work part time - and have less energy than before - but even that has come back slightly on my off two weeks of herceptain or it can be b/c doen with radiation and that takes awhile (3-8) weeks to leave system.
I am on a one year stint of Herceptain - stage 1 -no node involvement

[Mgarr]

Oh I forgot that awful taste in my mouth I get during infusion and for approx. and hour afterward.

[Berta]

I am Stage I. I took four rounds of epirudicin and cytoxan ending in March 05. I was called back in for Herceptin in July. Since that time, I've had runny nose, night sweats, flaky nails and have gone through two perscriptions as my nearsightedness has gotten progressively worse. I've also gained about 30 lbs. I don't know how much if any of this is related to the herceptin but the docs do believe the vision problems are not explainable any other way. Having said all of that, I would gladly take herceptin for the rest of my life if I could find someone who would prescribe it. I take it every three weeks. Berta

[Bev]

Hi, Stage 2, ER/PR+, 4Ac, then taxol And Herceptin 12 weekly beginning 11/05, solo Herceptin since 2/05. Rads in March. Tamoxifen begining mid April.

Really felt the foggy and fatigue cloud lift shortly after taxol. Reading vision, focus, has rapidly gone downhill, but i am at that age. Ditto memory. Really runny nose that crusts overnight. My ears stuffed up so I couldn't hear for a couple of months but started taking claritin etc. so I can hear again. BMs are loose, thought it might be the rads, but things haven't gone back to normal yet after 4 wks off rads.

Overall though, feeling great. No headaches, no pain, no infusion reactions. Muga is fine,

Thanks Lani

[jhandley]

Recurrence in sept05...one spot to liver. 6 tx taxol and herceptin (3 weekly) have had 4 years of herceptin (3 weekly).
Sinusitis, nausea which has continued intermittently for 2 weeks. Mood swings and hot flashes occasionally..usually in first week after herceptin.

Jackie

[APRILSHER2]

taxol causes hot flashes so herceptin may not be the culprit

[Julie2]

I have very little sinus headache, minor joint pain, also decrease in eye sight.
stage 3.

julie

[Yorkiegirl]

I have been on Herceptin alone since August 05.

I have also called Genetech about the problems I have had, they took a report and also had some one call me as well so it could be logged.

Theses are my issues I have:

Lower back pain, Rib pain, Joint Pain in hands and knees
Weight Gain, Bloating, Tired, Can't sleep, hedaches, runny nose that get's crusty at night.

Every time I mention any of this to the Onc Nurse or My Onc, I seem to get this look, Oh here she goes complaining again. I am to the point now I afraid to mention anything at all, as they seem to think (especially the My Onc nurse) that I am making up this stuff. Quite frankly I am starting to get depressed for the very first time since starting on this journey. OK now I'm crying.


Vicki

Biopsy Dx'd 3-23-05 w/ 3 cm tumor Age 48 1/2 (turned 49 July)

MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
5+/16 nodes
Stage 3
ER/PR-, Her2/neu ++ confirmed by FISH
ki67 78%

Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)

28 Rad's ended October 13 2005

Started Herceptin Weekly August 2005 for one year, will be done this August 2006.

Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.

[Marily]

Dx IDC, stge IV Cancer, r breast lump 8.8cm with sl retracting nipple,erethematous area 12cm, mets to lymph, liver, lungs, bone. microcalcifications left breast er=3+, pr= 4+, her 2 =3.3+

4 sets AC, Leukine, procrit, taxol,x12 given with Herceptin. This Continued weekly. given over 1 hr very undisturbinsg side effects
mouth sore every third day
diarrhea that night and next day.
I year later had L mastectomy r reduction, tram recnstruction which lasted three days and lost.
4 surgeries followed to remove and repair. Continued Herceptin for over 4 years.
Stopped Herceptin May 2005.
Developed Pain over shoulder to L shoulder blade and down L arm.
tight band across stomach and inability to sleep without being upright in a chair leaning forward over a table,
I had severe dilated cardiomyopathy with reduced ejection fx down to 20%, mod -severe mitral regurgitation.
I was than off Herceptin for 4 months felt so wonderful... got my ambition back (which also is gone again,now I am back on..)
I Felt like I did before Cancer I enjoyed my rest off it, for certain! : ).
My brain had less short term memory loss, and I experience a more rapid word return. I was put on Coreg, Digoxin, Aldactone, Diovan, lasix,
I remain on 50mgm Coreg bid, Aspirin 81mgm, Furosemide 40gmg 1/2 tab daily,cod liver oil, Co q 10, Diovan 80mgm,KCL 20mg 1/2 tab daily, O2 2Liters at noc, per c pap, Flaxseed oil, cod liver oil, Essential Fatty acids,

I started out with my Side effects being mild with mouth sores 1-2 gums or sides in mouth by the third day post H, I Used biotene swish, tooth paste, and gum. I also have a special swish Peredex, my dentist gives me.
Dentist found small cracks in teeth and when opened were fizzures in teeth so we capped them.(go to dentist q 3 months.)
I also have ground the back of my top teeth so only 1/2 the back is remaining, and dentist is going to try to rebuild them, since I have no enamal on them. (I find I grit my teeth often.) My stressor release? buildup has worked and I have had top front teeth rebuilt.

Diarrhea starts on night after recieving H and continues for two days. Lomotil or Imodium, with Gas X helps.

The Nails on hands and feet peal or tear very thin, Skin around fingers crack open.

I get teary eyes, infected tear ducts, dry eyes. use Patanol, Liquid tears, ,Use antabiotic eye gtts,
vision changes (I have had 4 pair of glasses in 5 years) I Pulled a new one in my right eye last night, It was like looking through a black cloth, L eye was clear? this lasted no more than 3-4 min and was gone?

I have frequent UTI's and was on 6 months profalactic antibiotic for 100's of small kidney stones both kidneys were involved, and infection.
have been checked for Kidney loss since I take NYSAIDS for overall body pain... So far ok in 6th year but when off meds lots of pain walk around feeling like old Grandma ...now take NSAIDS only when want to be active for special occasions otherwise take Alieve.
My nose gets dry, cracks, I use tripple antibiotic for cuts and bleeding inside.at nighttime.
I also have nebulizer with the o2 and CPap Machine I now use. which helps moisten. My Cardiologist felt it would help heal my heart to use it)to decrease my sleep apnea)
My nose will "just run" at any time it pleases.especially during meals.

I get Chills and hot flashes for which I take Effexor 150mgm timed realease, also vit E,C,B complex, grape seed heart, cranberry for uti, and 14 mushrooms for immunity.
I was Also on Tamaxofin, until bilateral salpingo oofforectomy??? Jan of 2 years ago and went on Aromasin. also had luprin before the bso.

Gradually over the past few years or so, I began cramping in my legs, than hands, arms, sides, toes turned up, hands went into spasm, arms turned inward .. so went on Quinine 260 daiy, Soma, magnesium 250 daily.

6 weeks ago I had a reaction to the Herceptin and we upped soma to 350 bid, magnesium 500mgm daily, also doubled quinine and added Atavan.

This was all because after finishing my H that day, I began to get dizzy and Felt like I was on the outside looking in...outworldly, bp went up to 200/112 I could not hold my head up, than began cramping severly all over with muscle spasms and twitching. it took 1 1/2 weeks to calm it all down.. and I was afraid to sleep because the cramping was too bad when it caught me sleeping.
I was off Herceptin for 4 weeks , than with Dr Slaman's guidance went back on. 1st they tried 90 min with decadron, which I recieved IV twice, since the cramping etc started and my bp went up to 180 over 134 after which for three days I climbed the walls literally, from the decadron. I also puffed up in my abdomine which pushed on my lungs and I had difficulty breathing. I took more quinine, benedryl, gas x and 02 and finally was able to sleep about 3 am 3 nights after my Herceptin/ Decadron dose. (my husband wanted to traid me in for his old wife)

The last two weeks, I have been given my Herceptin over 2 1/2 hours, double diluted and with 50 mgm iv Benedryl. I have come home a bit woozy but I seem to be ok otherwise.
The cramping is returning but slowely and nothing like the first time. Today, so far after my Herceptin.. I am only a bit woozy, from the Benedryl iv, and have had some chills. I have slept most of the afternoon and have been pretty unsteady on my feet, but I got the Herceptin in... and that is what counts..
Oh almost forgot I also get joint aches all over which I as I said I controle very nicely with a nsaid ketoprofen ER.
I have bad insomnia which I take Ambien for, but that works only sometimes... lol and definately not tonight since it is now 5:33am here and I am still up.
Guess that is all but ? there it is.. my 5 years on almost continious Herceptin. And I am still alive and kicking! that is what counts. My girlfriend and I have compared our S/S and we laugh because thay are apart of our daily life.. when others out there c/o a cold or an ache.. we just smile.. Life give lumps but you can pretend they are sugar... It is all how you look at it? Hugs Marily
add today 5-10 I recieved a call my creatinine is up to 3.3 with also elevated bun.. so ?? now what is goin on? Watch your kidneys and drink lots of fluids..

ps... I am now 6 years on Herceptin with the above double diluted dose given very slowly and watching my Elysa numbers about once a month. I remain NED.

[nancymarie]

Yorkiegirl,

I feel the same way you do. I mentioned alot of my side effects to my onc last week and I got the impression too that he thought I was a hypocondriac or something.

I am considering stopping the herceptin after about five months now. My nose problems are so bad that I have been sleeping on the couch at night so I don't wake my husband up with blowing my nose, sneezing constantly, etc.

I also hate the way I look and feel right now.

Take care!

-Nancy in Colorado

[tricia keegan]

Hi I was dx in June 05 with stage 2 idc 3/9 nodes positive and highly triple positive.I did a/c x 4 Taxol/herceptin weekly x 12 and 3 weekly herceptin since Early Feb this year.I have muscle leg and back pain and stiffness in joints and since my last two herceptin treatments have developed an itchy rash with blotches which come and go.I also have headaches especially on waking and a runny nose.
Tricia

[MCS]

About two weeks ago, I started a thread where I was asking if we could start some form of database that coudl be supplied to users here and in case docs or firms wanted to find out information on this herceptin stuff.

So it appears that you are as frustrated as I am.

The oncs shrug away everytime I mention anything. Or they say, it's not in the literature, or rare. I'm scared to metion anything because then I'd be doing mri and pet scan on a weekly basis. I also keep hearing and reading here and other places that there's no musch info on side effects and we are writing the "book" on them.

Well, we should then! let's start some form of database where all these are gathered. I know we have a search button and I know that it's not a substitution for medical advice but there's a got to be a place where doctors can be provided with this information and not just form me.

I HEAR YA SISTER!

MCS (maria)
dx 7/2005. mast on right side

[Her2nSue]

I had Herceptin with the taxol for once a week for 12 weeks straight and really didn't see/feel any significant problems. Now I'm on Herceptin once every 3 weeks for a year. After the first infusion, the following week I noticed my thumbs were achey and throbby. Mainly in the joint to the hand. As the weeks progressed for my 2nd infusion, fingers started to swell, slowly. No problem with ankles or feet, though.

O.K. so now I've had the 2nd infusion and the pain is unbearable in the thumbs, extremely stiff leg muscles and back muscles. If I drive for 30 minutes straight, I look like a 110 yr. old person getting out of the car. Once I get going, it's ok, the back muscles and leg muscles seem to sort of relax. Not the thumbs. I finaly called the onc and they put me on Celebrex. Doesn't make me feel completely limber, but the pain is much better. I can now write my name without cringing in pain.

So, if anyone else is experiencing these joint, muscle pains, be persistent and see if they will prescribe something for you to help you through the rest of the herceptin infusions.

Ya know, all of this just wipes you out, and we're having an early summer heat wave out here which just makes it even worse. If I can get one thing done during the day, I feel like I at least accomplished something other than just being a lump of body pain.

[MJo]

I've heard of radiation recall, but I wonder if there is a Herceptin recall. I finished Taxol one month ago. I had weekly Herceptins and just got my first triple dose last week. My Herceptin side effects are similar to taxol's -- tingling in fingers and toes, redness across nose and cheeks which clears up in two days. Does Herceptin have some of the same side effects as Taxol or is this Herceptin recall?

[Quilter1]

Stage I BC. I took Herceptin every week while on the Taxol chemo cycle. Once chemo was done, I was switched to every 3 weeks for a 90 minute drip. I must say I don't know if the side effects I have are from Herceptin or the Arimidex I am taking. I was started on Arimidex immediately after the Taxol cycle was finished. I had 3 mingraine headaches during the Herceptin routine. My nose was not stuffy. It is actually the opposite. It is always runny. Memory is an issue. I had more short term memory loss issues after my chemo was done. Again I can't say if it is the Herceptin or Arimidex. I also seem to have spells of insomnia that still persist. Not every night, but several times a month. I just don't sleep too well. Always in a light stage of sleep.

Hope this helps you in some way.

[Becky]

I have soft fingernails and the skin on the bottom of my feet peel quite a bit. So much so that I get pedicures every 6 weeks (and I never got pedicures before).

My nose is runny and my vision is off. I also have the "can't find the right word" syndrome (which can be from Arimidex). I am tired, especially the week I get the Herceptin. I have been on Herceptin since mid June, 2005 but will end soon (Sept 29). I also feel that my allergies have gotten worse (but this may be coincedence).

I also feel my hair doesn't grow as fast as it used to (this may be due to Arimidex as well as it is a menopausal symptom). I also get chocolate cravings for about 24 hrs but no weight gain.

Kind regards

Becky

[Ora]

I started herceptin in June and take it every 3 weeks. I had a reaction to first dose - chills & fever, but seem to tolerate it now and take benedryl and tylenol with my treatment. I am also on Femara. I think I can attribute some of my ailments to herceptin and some to the chemo. My runny nose, swollen feet, and dull pressure-type headaches are probably from the herceptin. My arthritis is much worse now in my hip and back, but I gained weight with everything so I know that affects my arthritis. The hot flashes are from the Femara and I take 37.5 mg of Effexor for that and it works pretty well. Since I had chemo first, I believe my insomnia started then but I still have it and must take a Xanax and an Ambien to sleep. My mental problems and toe/foot numbness also started with the chemo. Actually, I think my brain is working a little better now. After almost a full year not being able to read a book, I've finished two in the last month. Although I must confess I thought I was going to have to describe Ambien as "bucket"! I couldn't remember the name. I have had the "air hunger" too. I thought it was because of my heart, but it mostly happened at night or when I got into a hot car - it was over 100 degrees most of the summer. I got this tip from my dog. She's a fat black lab and when she pants she will put her face up to the fan. I tried it at night and it seemed to work - the breeze helped me gulp air better. I would just turn it on when I needed it. Herceptin is my wonder drug and I can manage all of these side effects just to be able to take it.

[Carina]

I am Stage IIIa, ER/PR positive and started Herceptin with Taxol once every 3 weeks. Started to get hives and itching on the second day after receiving T + H. Thought this was due to the Taxol. Then got an anaphylactic reaction (hives, tightness in throat and chest) 10 minutes after the Herceptin was started (1 hour drip). I was pre-medicated with Dexamethasone and Benadryl but still got the reaction. I was given more Dex and Benadry and the herceptin infusion was restarted. 15 minutes into it, I got the same reaction again. They stopped the herceptin and never re-started. I have not been given any herceptin since. and have completed Taxol on Sept. 8th. However, I continue to get allergic reactions. Not sure if it is due to the Taxol, Neulasta or residual herceptin or a combination of any or all. Spent several hours at Emergency due to an allergic reaction today. Going for allergy testing on Oct. 4th.

I spoke to Roche, distributor for herceptin in Canada, and they asked a number of questions about my reaction. My onc is trying to get information on others who have experienced an anaphylactic or other severe allergic reaction while taking herceptin. Roche was intially reluctant to release the data. The Roche rep did tell me that at least one patient has died from the reaction to herceptin, but a severe reaction is rare.

I am hoping to be able to safely get back on the herceptin. Thanks for posting this thread.

Carina

[ElaineRyan]

I started Herceptin Weekly with chemo (taxotere/carboplatin), after 4 1/2 months of chemo and 7 weeks of radiation I switched to every 3 weeks herceptin. I just finished my one year of herceptin in August 06 and I opted for a 2nd year.

I hear everything everyone is saying about side effects but most of it sounds like lingering effects of Chemo drugs. They can be so damaging to your body, long term. I have reflux on and off but my onc. says its from chemo. I definatley have weakening nails but they are getting better. My hair grew Fast, I thinks this depends on your own personal make up and not the drugs.

I'm not saying that Herceptin doesn't have side effects that they don't acknowledge but really all I have experienced is a little tiredness the next day.

Herceptin is truly such a miracle drug that I can't imagine anyone not opting to take it if given the choice. It literally saved my life.

[tousled1]

I am on Herceptin only and I experience the following:

1. trouble concentrating and trouble with short term memory also trouble with finding words - I know what I want to say but sometimes the word just won't come out or the words come out mixed up and sometimes backward
2. severe joint pain - sometimes when I get up in the morning it feels like my bones are just going to snap
3. dry, brittle, peeling nails
4. fatigue (low blood counts)
5. continuous runny nose
6. slight headache (was sent for a brain MRI -everything ok)
7. itching - various parts of the body
8. deteriorating eyesight
9. hearing loss
10. insomnia
11. weight gain

These are the ones I can think of off the top of my head. I know some people may say the eyesight and hearing loss may be age related but I totally disagree. I didn't have any problems before starting Herceptin. Overall, I would have to say that Herceptin and I do not get along. Since on Herceptin my entire life has changed -- I'm not able to to the things I normally did. I started out on the 3 week cycle and thought if I went every week it wouldn't hit me so hard so I started every week. I could tell you how I would feel each day -- the only time I felt almost normal was the day before my treatment. Now I have switched back to every 3 weeks in the hopes that I will have more than one good day a week. Had my first 3 week dose 2 weeks ago so I go back next week. So far, I don't notice that it's any better than weekly but I'm going to give it a chance. I just want to feel somewhat "normal" and be able to have the energy to do things.