Herceptin - 52 weeks? Neuropathy?

[oregon]

Hi everyone,

Just had a couple questions about Herceptin. . . my doctor said that I am suppose to be on Herceptin for 52 weeks. He said the 52 weeks started when I had my first infusion of Herceptin (2/3/11), even though it was in parallel with chemo. However I thought it was 52 weeks from the date that I started Herceptin "only" infusions? What is your experience on this. Secondly, my neuropathy is getting worse since I stopped chemo (6/6/11) and continued with just the Herceptin infusions. My doctor doesn't really have any advice on how to deal with the neuropathy. Any advice is greatly appreciated.

Thanks so much!

[NanaJoni]

Mine was supposed to be 1 yr total - from start of chemo but I only had 4 regular chemos - had to miss the last two. Then had to stop the Herceptin due to issues with lung damage from radiation treatments so I'm probably not the best advice on that. I take 100 mg of Vitamin B6 every day for mild neuropathy in my feet. It mostly only bothers me late in the day at after I go to bed. Have had some more problems with my hands since it has gotten colder but as long as I try to keep my hands from getting exposed they do okay. Hope you get more info...

[mimi1952]

I finished chemo(ACT and Herceptin) in Feb of 2009, but was able to continue Herceptin until November 2009 - full year dose. My neuropathy is in my feet, never disappeared, but I went to a neurologist after trying all of the over the counter "stuff" for months and even acupuncture and nothing touched it. I am now on 50 mg Nortriptolyne (sp?) and it is wonderful. No side effects and is a great long term drug.

[jjblue8]

I was diagnosed 6 1/2 years ago with Her2+3, at age 38. I did chemo and radiation, 2 lumpectomy's, stage 3. I did Herceptin for 8 months. My heart strength went below 50% at that time and I stopped. Was on Tamoxifen for 5 yrs, now on Femara, for the next 5 yrs. I had the neuropathy for several yrs after the chemo, in my hands and feet. Now, I my hands still go to sleep when I keep them by my face when I sleep, but the rest has pretty much gone away. My scans have been clean, today is my 45th birthday. They were worried I would not make it this long, since it is an aggressive cancer. It very well likely could have been the Herceptin, or positive thinking...stick in there. Life gets better when you know how tough you are.

[karen z]

Generally one year for Herceptin (total).
Neuropathy- seriously, a LOT of time. Don't expect miracles over night. It will get better and you will also get "used" to some of it. Both things probably contribute to feeling better. It is a drag but you will manage.

[Jackie07]

It is counted from the beginning of the chemo when Herceptin is part of the infusion.

If you look at other newly diagnosed, you will see some different schedules.

I had to stop after just 4 weekly Herceptin infusion following the 18 weeks of TCH. That was 4 years ago, and so far I've been doing fine. There's a study called 'Fin-Her' (Herceptin use in Finland) which found that 11 weeks of Herceptin produces 98% effectiveness as the one year schedule.

[Becky]

It is 52 weeks starting from the first infusion that usually begins with chemo.

[Miscmom4]

Hi Oregon, the Neuropathy can be treated with anti-epileptic drugs, also orthotics might help,

good Luck, I am on an ending round of Herceptin so Good luck and GREAT HEALTH

[Rich66]

Apparently, neuropathy can actually initially increase when chemo stops. Been gathering info and options here:
http://her2support.org/vbulletin/sho...949#post215949

[Miscmom4]

I am almost 2 years post Chemo and still have the Neuropathy in my feet, I have talked to my Dr. and she said it might be there forever, who knows, but I am coping okay,

[DragonMom]

I start Herceptin on Thursday, My Dr. prescribed B6 and B-Complex and Glutemene{sp?} to help with prevention of Neuropathy. So I have my fingers crossed.

[Vicki revised]

Neuropathy in hands got much worse after chemo and feet became affected as well. My arms also started going numb at night and very painful. I take Metanx (rx of B vitamins) and it really helps. When i go off for a week the agony starts again

[evergreen]

Am almost a year since finishing chemo, and still have numbness and tingling and litlle pains sometimes, in toes and fingers. Take gabapentin and it helps. I also have arthritis in my hands, so sometimes I take Tylenol at night, and it helps me get to sleep.

[Vicki revised]

Postscript: I have been on Herceptin for over a year now. The original plan was 1-2 yrs, if tolerated, depending on disease progression. Currently, based on the specifics of my disease I am scheduled to stay on Herceptin (either alone or combo'ed with other) as long as I can tolerate it, optimally the rest of my life unless something new and more appropriate comes out.

While all of our cases are unique, anything less than 52 weeks of Herceptin, if tolerated, is not indicated.

[evergreen]

Vicky, how do you find the tykerb? I am not even sure if it approved in Canada yet, but I have read that the combo works well together!