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

[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.

[vikkismom]

Hi,I am a new member here and i really need some info.My daughter was taking herceptin every 3 weeks to be completed in mid feb.07.In mid july she went into congestive heart failure.Her first muga scan was done after she gave birth to a healthy baby girl and came back good(67%) She started taxol/herceptin for 7 weeks then just herceptin.She had muga scan done after taxol/herceptin and it was 34%.But the results were late getting to her onc office and she had 2 herceptin treatments.She went into heart failure (20%)She is doing a little better now but every thing is on hold at this time.She is really unsure as what to do.Is there any studies about shorter treatment with herceptin?She has had left breast masectomy diag.stage 3 her2+ with 9 nodes positive.(invasive ductal)Also she has rads to go thru.Any comments or thoughts will be welcome vikkismom

[Marily]

Hello Vickismom, hope I got that right??
I went into Congestive Heart Failure and went down to 21%. My cardiologist put me on medications and we gave it a rest with the Herceptin for about 8 weeks. We redid the muga and they watched and worked on my medication to correct the hearts problems. I now take 50mg Coreg twice a day (strengthens the heart) I was on Digitalis to help the heart pump better but off that now. I take Diovan and Furosamide which take out the excess fluid so the heart does not have to work so hard. I am doing fine and this last muga I was back up to 60% but it has taken me a couple years to achieve that. I was carefully watched on the Herceptin by my cardiologist and am doing fine now. during that time they also found I had sleep apnea, so I have a cpap machine and oxygen throughout the night. I seem to be walking and breathing fine. Get a good cardiologist on your team.. it makes all the difference in the world.
Hugs and good luck,
Marily
oh and I was on Herceptin about 31/2 years when this happened so watch carefully it does not always show dammage at an early time!

[elcalabrese]

Glad to find out I am not crazy

I have been on Herceptin for 4 1/2 yrs.
Side effects.
Finger nails split and thin.
Finger tips cracked (I now wear fake nails to protect them).
Toe nail fungus.
Can't sleep
Medicinal "smell"
Runny nose especially when I eat something
Horribly dry eyes
Vision problems especially after treatment
Memory issues
Trouble speaking - forgetting words or completely drawing a blank. Also using wrong words or thinking one thing and saying something completely different.
Muscle and bone pain
Bloating and weight gain
Digestion problems
Congestion
ringing in ears
Prone to stomach and sinus disorders
And now my hands and feet are peeling. They burn and itch and even slightly warm water feels like it's scalding hot.
el

[bobbiw]

Oh boy elcalabrese does that sound like me! I am very happy for the Herceptin and will certainly put up with the side affects dont get me wrong. But in my case it seems that it has also disrupted my ability to find gainful employment due to the cognitive stuff that I seem to have going on. I cant even imagine trying to learn a new skill these days or multi tasking or working in a fast paced environment. The madening part for me is that possible side affects such as these dont seem to be recognized by the medical community. AND if you are stage IIb and doing well physically, SS disability does not recognize the difficulties either.
Well one day at a time one foot ahead of the other huh.
Bobbi

[tousled1]

Since we have so many new members, I am taking the liberty of moving this thread up. I'm sure that the "newbies" might find it helpful.

[Doris]

Hi,

I've been on Herceptin alone since April 2006. At first it was weekly; then I switched to every 3 weeks. My symptoms are as follows:
- Diarrhea
- Joint pain, particularly in my hip. (I actually have lots of joint and muscle pain throughout my body! But since I have arthritis, it's hard to say what is due to the Herceptin. The hip pain began after Herceptin was started.)
- Fingernails that split and shred
- Intermittent dull headaches
- Increasing problems with finding the right word and with thinking clearly
- Runny eyes
I was diagnosed 12/05 with Stage IIIA, Her++, ER negative, cancer found in 4 lymph nodes. I had 6 wks of chemotherapy and 6 wks of radiation.

[dchips1]

I was dx stafe 4 IDC 1/06 now it is 1/07 and I am NED!!! Been that way since August. Liver and bone mets are gone!! Praise God and good drugs. I am a very active person, I have a blended family of 5 teens and a 6 yr old and I take care of special needs children, and work part time for the school as a nurse.
Timeline:
2/06 Mastectomy 3/9 nodes pos er/pr neg her2 pos
2/06 port placed
3/06 Taxol, carboplatnium, herceptin weekly x 3 then herceptin only for 6 months Zometa monthly (1rst two doses very sick 102 fever etc)
took neupogen, neumega, arasnep PRN
Good case of allergic reaction to carbo after the 16th dose
still on weekly herceptin
Good case of chemo brain!! Hot flashes and fatigue pretty much gone now
Brain still is not where it should be, Is this herceptin or chemo? Good question.
Finger nails brittle, peel MUGA at 62%-72%. I am going to get herceptin past a year, I feel like it has been the "juice of life" for me. I am NED and would like to stay that way.
I am going to continue weekly and I take coq10 and flax fish and a multivitamin.
My message to others with stage 4 is too never give up, be your own advocate!!! Darita

[kat in the delta]

Hi MARILY,
How have you been ?? I searched for your name..Glad you are doing better... with that 60% My last was 48..
Tell us/ME HOW LONG YOU have had your B.C and HOW LONG you have BEEN ON HERCEPTIN..
Thanks.... Kat in the Delta