[Jackie07]

Here are the last couple of them:

#628 by norkdo
· I finished my herceptin in August. Side effects: none. (slept heavily afterwards tho.)

·
#627 by Andrea Barnett Budin
#Herceptin was tolerated fairly well. Low energy. B-12 sublingual. Phyto Formula for chronic fatigue recommended by nut onc (supplement guy).

Ayr gel in a tube for nose. I used to have to blow my nose for the first 1/2 hr I got up in the morning. And it was bloody.

Poopies/bathroom drama really bad. After all is said and done, I have created a FOOD TRIGGER list that I must stick by religiously. After 5 gastro guys and every med they could throw at me, 1 Wobenzyme 1/2 hr before meals plus LIQUID IMODIUM have proven to be fantastic. My chronic IBS since the first chemo is somewhat under control. (KY jelly for diaper rash works wonders when you've spent hrs on the toilette...)

I was on Herceptin for 10 yrs. Off for nearly 5!!!!!


#626 conomyself

Overall the herceptin has been fine for me.

I have minor issues, but I don't know if they are due to Herceptin or leftover from Taxotere:

Knees. When trying to get up from a crouching position it is difficult and painful.
Stiffness. I am quite stiff after sitting.
Nostrils. They are scabby and painful.
Diarrhea. On and off, not chronic. Never know what I'm going to get.
Fluid retention. It has improved, but my face still looks puffy to me.
Energy level. I can do about 50% of what I used to do before diagnosis.

Rachael


#625 rondo
I'm sorry you are having such severe symptoms but glad to hear about your NED status. I
Definitely experienced increasing fatigue from the Herceptin during the year I was on it as well as some other milder symptoms. It is interesting that you mention dizinness and loss of balance. I have been having the same issue and am in the midst of vestibular rehab therapy now since my symptoms, which were mild for several years, have progressed over the last 6 months. The onc and ENT that I have seenthink it's caused by the carboplatin but now I am wondering about the herceptin since from what I have read, carboplatin usually only causes hearing loss(which I don't have.) They are having some trouble getting my symptoms under control so I am going to another specialist soon. No one seems to think its a brain met. Has anyone else that had TCH (or not) had this issue?


#624
frankp
kstrahm--you might check your serum HER2. A very recent Danish article pretty much concludes that chances of progressing are slim if your serum HER2 is in the normal range. You can read more at www.hertestonline.com, the March blog.

#623 kstrahm
Herceptin has become a side effect nightmare for me after almost 7 years on it. I started it in April 2006 for stage IV with liver mets. It was great at first - just a headache on infusion day and tired that day over the years it has progressed into full blown neuropathy with burning, tingling, numbness in hands, feet, legs, arm, tongue and throat, frequently dropping things and losing my balance as well. It also causes me to be dizzy and have pressure in my head as well as extremely exhausting me. I also have what the doc calls flu like symptoms which is severe pain the day off and day after the treatment in my upper back and neck. Here recently I have almost felt like I was dying the evening of taking it I was so out of it and felt so like nothing I could even explain. The verdict of this since I am NED now and have been for 6 years we are going to stop Herceptin. It is so scary and is a gamble but my body is giving me no other option. I hope to be NED for a long time because I am not looking forward to going back on it anytime soon. I certainly think the Herceptin side effects are cumulative.