Wednesday, 1 July 2009

HELP PLEASE - Herceptin

I have just had a meeting with my oncologist and I am starting to have a few concerns about my treatment after chemotherapy and radiotherapy, wondering if anyone out there could help with their wisdom, knowledge, experience.
My tumour was large and a stage 3, hormone sensitive, HER2 positive and of a level that I qualify for the new magic drug - herceptin.
I was discussing side effects of other drugs I may be given and was told that following a year of herceptin I may not need tamoxofin (wonderful news for me but.....) I dont care what I take as long as it keeps me cancer free!
Then the oncologist asks me if I want to have radiotherapy at the same time as my last course of chemo. The radiotherapy means a 100 mile trip each day for 3 weeks and with the way my digestive system has been feeling I don't know if I could cope with it all. So..... I told her I would like the radiotherapy AFTER my chemo finished.
She was then looking at dates and pondering to herself about "getting the herceptin started". She then tells me that we will discuss herceptin at my next appointment in 6 weeks to find out how long I should be on it for. She didn't want to put me on the drug for a year and leave me with a heart condition because there are new studies in Scandinavia which says that even being on herceptin for a short period of time gives the same benefits......
Me? I start to get my paranoid head on this afternoon. Is this a cost driven thing? If I have radiotherapy BEFORE my chemo ends will I get better treatment?
Does anyone out there have experience of this kind of thing?
Sorry to be doing a begging blog today but as I said to my oncologist today "I want to live, I dont want this cancer coming back"


  1. Yes, I do. I had all 3 chemo, rads and herceptin and I followed this regimin...chemo. 4 weeks post chemo finishing I had 30 hits of radiation, every day 5 times per week. It doesn't affect the body as such but it does tire you out...all the travel back and forth. I'm glad I did it. I wanted EVERYTHING they could give me.

    Herceptin started 4 weeks post rads finishing. I had it for 1 year, every 3 weeks. What your doctors need to do is monitor your heart with a muga (it takes a film of the heart). You start with a baseline before starting herceptin and then have one every so many weeks to make sure the heart is managing it.

    There are no serious side effects to herceptin. I had a slight headache that tylenol or advil (over the counter ibuprofen) handled. The headache is not uncommon with herceptin.

    As for permanent heart damage...I wouldn't worry about that Sara. Studies indicate that even if your heart is affected by the herceptin, the heart will recover it's function in time after herceptin is stopped. I had one muga where the results were questionable. I was given "a rest" of 3 weeks, had another muga which showed the heart was fine and resumed herceptin. At the end of the year there was nothing wrong with my heart.

    If your doctor follows you closely there should be no serious concerns, unless you have had heart issues prior to starting chemo. And remember, some chemo drugs are hard on the heart as well. I sincerely hope that your doctors have been keeping track of that with you to this point.

    If you have any question, shoot me an email..I'm happy to talk!

  2. Forgot to mention...some people do have chemo and rads at the same time -- but it is very tiring to the body.

    And your doctor is correct...studies do show that even having some herceptin is beneficial. Many women aren't able to complete the full year but studies are indicating good things for those women.

  3. Sherry Lee, thank you so much for your reply. You really have put my mind at rest! I will push for a full year of herceptin I think. They havent been monitoring my heart during chemo just my kidneys and liver.

    I thought about rad and chemo but its school holiday time then and I am feeling so yuk with my digestion system.

    Thank you thank you thankyou

  4. Hi Sara, I have no info on this, other than to suggest you search or post this question on - in the discussion boards. I liked Sherry Lee's info. I also had a MUGA scan done before starting chemo, that is standard here in Canada.

    I'm concerned about your 100 mile drive each way for radiation! Do you have any options such as someone you could stay with overnight a couple of times? If you really have to do that, maybe you can get some talking books to listen to while you drive, or some motivational cds or something. Hopefully your library has stuff like that available?

  5. Sorry no information on herceptin either.

  6. Sara that will be my course of treatment too and like you I also want the cancer to just go away so I can live. I am grade 3 stage 3 HER + and looking for info. I will be going for radiation here too, also in another city but we have a lodge you can make arrangements to stay with no cost to the patient though you have to take care of your own food......

    here is my email::

    if you or anyone for that matter hear I too would appreciate and information...

    Thanks Alli.....

  7. Beth mentioned which is a good place for information. It also has a discussion board which can be helpful when the waters there are calm. It is one of the worst discussion boards for infighting and cliquey-ness...I left because of that but there is no doubt it can be extremely helpful.

    For those who are her2neu+ there is also this site

    which pertains ONLY to her2neu cancer and is quite also has a discussion and message area.

    As with all treatment options the most important thing to remember is that we are our own best advocates. Doctors will make recommendations which sometimes suit them and their schedules. Listen to yourself and know what is going to be best for you and then ask for it. Best wishes to everyone who is going through decision making.

  8. i asked my rad onc why we don't get rads and chemo at the same time (not standard protocol in the states), and he said he has been pushing for that for years, because the chemo is to kill cancer cells in the bloodstream, but rads is to kill cancer cells in the tissue, and ideally we want all the cancer cells killed at the same time. he said it's really rough on the body with the standard doses given in the states, and that's they why they don't do it. but he said researchers are trying to find easier but just as effective doses so that eventually we can have both. i wanted both!! it upset me to think that while i was having chemo, cancer cells were still growing in my chest area. so it might be rough, that i would prefer chemo and rads at the same time. if it makes any difference ultimately, i just don't know! do what your gut tells you to do. i'd say don't base it on driving time but on your gut. xoxo


I value each and every comment left, they keep me going and give me strength!