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

[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.