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

[rhondalea]

Andi,

You might want to give calendula a whirl. IMO, it's a miracle.

Hyland's makes an ointment that's pretty disgusting (petroleum, lanolin and calendula) as well as a spray (glycerin, water and calendula). California Baby makes a cream that smells lovely, but is probably not so effective as the first two. I have not used Weleda, but it gets high marks from many.

During radiation, I used California Baby in the day time (so people wouldn't run from me holding their noses). At night, I slathered on the ointment (because my husband is mightily tolerant--well, either that or he's lost his sense of smell entirely). End result? No radiation dermatitis for me. Now, when I burn myself or come in contact with something itch-inducing or have any skin irritation at all, I apply the spray immediately. Bye-bye burn, so long itch, fare-thee-well red spots.

Oh, and it also works for sunburn.

[Andrea Barnett Budin]

Rhondalea, Hi.

I googled California Baby. It's for diaper rash. Dry skin.

What I had was rashy looking, not dry. On fire, burning and urgently knee-dropping itching.

I am glad this worked for you. Thrilled in fact. I thought radiologists gave out special creams for those special burns to the skin. Do they itch too?

I was lucky. Only mastectomy. No breast tissue, no radiation is what I was told. 2 lymph nodes affected (out of 21). 3 yrs later the bc that had a ticket to anywhere in my body landed in my liver. Just saying...

Andi

[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.