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*_Susan M_*
03-23-2005, 10:06 PM
I started Navelbine/Herceptin in early January.

Two questions...

Do the side effects tend to get worse past
the third month, such as fatigue, indigestion,
aches and pains?

Also I have a strange scalp sensation that comes and goes
and moves around my head. It happens a few days
of every week throughout the day,annoying not painful.
Can anyone relate?

Susan M

Lyn
03-24-2005, 05:23 AM
Hi Susan, I was on Navelbine for about 8 months, it is a toxic drug on your system and that is why it has to be given in a porta cath or pic line, so it will be affecting the lining of your stomach and osephegus, if you are not already on medication for this you need to, I am on Losec, I was on Zantac but it couldn't keep up with the toxicity, this is a drug I take all of the time, not just when on chemo. My experience for scalp sensation, which is a painful tingling, was just before I lost my hair on other chemos, not Navelbine? The Herceptin will also be making you tired and achey. In the beginning I had bad diahorea just after and for a few days, but that went and towards the end I didn't have any side effects. Hope this helps and you start to feel better.

Love & Hugs Lyn.

*_Peggy_*
03-24-2005, 07:19 AM
Susan,

I was on Navalbine for about 6-7 months. I never had the scalp/head sensation or body aches you describe but everybody is different and no side effect would surprise me with some of these drugs.

I did have problems with my blood counts and fatigue. For me the stomach problems were the worst and my onc prescribed an acid reducer that I took everyday; that helped a lot.

I started out doing Navalbine every week but that was cut back to 3 weeks on and 1 week off because of my blood counts. That one week break helped my body recover somewhat.

I am currently NED and I think the Navalbine had a lot to do with that! Good luck.

Peggy in Florida

Pam P
03-24-2005, 08:44 AM
Susan -

I was on navelbine for 12 months. Actually, I remember having more stomach aches & pains in the beginning and they tapered off after a few months. I do take prevacid daily for acid reflux - I did before the navelbine too. I do remember the scalp sensations, but don't remember if it was in the beginning of my navelbine treatment, or if it was on an earlier chemo, taxotere.

My experience with navelbine was this:
-3 weeks on; 1 week off
-hair thinning, but not loss
-slight nausea for a day or two some weeks, but very mild
-fatigue was my biggest issue, but I didn't feel ill
-my red blood counts were low & I got aranesp every two weeks & my white blood counts were low & I have myself neupogen shots 3 days of each chemo week -- this kept my counts high enough so I didn't have to miss a treatment

I hope this helps -- and I hope your side effects ease up like mine did. Pam

StephN
03-25-2005, 11:47 PM
Susan -
I had navelbine with taxol and Herceptin, so hard to say what drug caused which symptoms in my case.
I did have the sore scalp, but it seemed to be even a little worse when my hair was growing back. Did not really "move around" - was mainly at the top part of my skull.

Fatigue and low counts were a problem, but I managed to stay on treatment, and remember that I had a heavy-hitting combo.

No real stomach problems to speak of and no nausea in my case. Just mouth sores that affected what I could eat - had to stay away from real spicy and acidic foods.

Hope your treatment is knocking the heck out of your tumors like it did for mine. That makes all the suffering worthwhile. I have been off chemo now for close to 3 years. Have good quality of life, but still fight some fatigue, as I am not as young as some of you girls!