HER2/neu +, grade 3+, allergic to herceptin

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kartiae
kartiae Member Posts: 5
edited June 2014 in HER2+ (Positive) Breast Cancer

I was diagnosed with stage IIb going into stage III breast cancer, the tumor over 1 inch in size, DCIS and another agressive form of BC to boot. Lymphnode positive. This was right after my 33rd birthday in 2005. I had 2 lumpectomies due to the tumor spider webbing out throught the breast, 16 lymphnodes removed, 6 months of chemo and 37 Rads. When they started the herceptin it went after my lungs and I ended up in the hospital for 9 days so after the second infusion they had to stop it. I am BRAC neg. So I am told I have an extremely high chance of getting cancer back. I have to go for Mammo's and blood work every three months, I am suppose to go for an MRI Mammo once a year, and I have been on tamoxifen on and off due to job loss, and no insurance. I haven't been able to see my Oncologist for any tests in the last 7 months, I have been off the tamoxifen for the last 3 months because I just can't afford it.I am finally getting a visit to her but then she will order blood work and a Mammo and Ultrasound. More money yet again. I haven't had my MRI Mammo in 2 years. I have to pay for everything out of pocket. I was just wondering if anyone out there is allergic to the herceptin and a grade 3+++ on the HER2/neu positive. Has had a recurrence, or knows of any signs other than a lump of a recurrence.?  I know 7 months ago they found a cyst growing in my other breast, and can that turn into cancer too?. I am 37 years old and my biggest fear is getting cancer again or a recurrence and not knowing because I can't afford the health care.

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  • lexislove
    lexislove Member Posts: 2,645
    edited April 2010

    Hmmmm...my Tamox is free (I'm in Canada). I would give you mine! I hate the stuff and will be coming off it in about 3 months.

    I haven't heard of being allergic to Herceptin. This is new to me.

    Herceptin is so...so important to us Her2 woman. We need it. Bottom line.

    I think that you should be followed closely though. Get your bloodwork up to date, adress any bumps or lumps, a good physical exam by your onc and a mammogram.

    I'm sorry about your struggles. It angers me. No one should go without healthcare. No one. The whole thing blows my little Canadian mind...lol. But this discussion is meant for another thread....

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  • kartiae
    kartiae Member Posts: 5
    edited April 2010

    Yeah, Canada has Universal Health care right? Cuz America Sucks in that department..lol. Yes I am one of the few who are allergic to the Herceptin and At a Grade 3+++ with the oncogene. I hate the tamoxifen to, side effects sucks..HOT FLASHES, bad enough they put me into menopause with the lupron, and told me I wouldn't have kids, then last year I get my period back, but every 2 months for now, then because of that they had to due a uterus and cervical biopsy, they found cancer cells on the cervix and I am suppose to see the OB-GYN every three months also but no money and no insurance I haven't been back in a year. Everytime an Oncologist heres I am allergic to the Herceptin at a grade 3+++, they all say the same thing. "OMG, that is not good at all". Go figure, like I didn't know that..lol. But enough on that matter. Thank you for your support, I do appreciate it.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited April 2010

    Were the cells in your cervix bc cells?  If so, you could get tykerb.  If not, maybe they would still consider giving you this since it works like herceptin?  I think it still might be for people like me with mets, but they may have made it available to other stages?  I know there is a trial called ALLTO where they are giving combos (or as a single agent) of herceptin and tykerb to lower stages, so maybe it is something they will consider?  

    I happen to take with along with herceptin and it is amazing stuff.  As for the healthcare, please contact your local medicaid office.  Many states have special funding for breast cancer patients and this may be available to you.  Here's a link you should check out that will hopefully give you more information: 

    Medicaid Breast and Cervical Cancer Treatment Coverage Expansions 

     http://www.statehealthfacts.org/comparetable.jsp?ind=457&cat=10

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