Anyone HER+ who has NOT received herceptin?

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Deblc
Deblc Member Posts: 479

I am having insurance problems and might not be able to continue on herceptin (I received 12 weekly doses with taxol). All I've read is that herceptin is a miracle drug. Now I am really worried if I won't be able to get it for a year. Any HER+ survivors on this board who did NOT get herceptin? I desperately need some hope!

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2014


    Sorry to hear you have run into problems with that. Some patients have received it through programs offered by the company that developed it, in case you can check into that, although I don't know what is required for that.

    I never had trastuzumab because it was not yet approved for early stage bc when I was treated, so maybe that helps some.

    AlaskaAngel

  • Deblc
    Deblc Member Posts: 479
    edited May 2014

    Thanks Alaska Angel, yes that does help, because from everything I have read, it seems that if you are HER2+ the prognosis without herceptin is very grim.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2014


    Well, it may be that could in part be why the company does provide it sometimes when people can't afford it, to keep that impression, or to get good publicity. I don't know if the injectable trastuzumab is less spendy or not (available elsewhere, like Europe).

    There are those who feel shorter courses of it may be effective for some patients. I do know that at the time I did not receive it, most others did not as well, and of those that I happen to know, some received it "late" and some never had it, and none of either group have recurred.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2014

    AA is incorrect about patients receiving a shorter course of Herceptin.  This week ASCO is having their annual meeting.  They released a preliminary study that says 12 months of Herceptin is better than 6 months.  I posted the study on another thread.  Do a search of my member name and you will see my post!  Good luck!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2014

    I'm assuming your tumor is greater than 5 mm.  Below 5mm it is still being debated.

  • Deblc
    Deblc Member Posts: 479
    edited May 2014

    AA even more hopeful that others who did not receive it did not recur.

    Voracious.. Yes my tumor was almost 7cm and in 12 nodes. Not a very good outlook.

    Kayb I live in Jamaica and although the drug is a probably a lot less expensive here than in the US, it's still astronomically expensive for people without insurance here 

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2014

    Debic, I want to encourage you, yet you need to know that the information provided above by others is more precisely accurate, for you to consider. Your situation is a difficult one, as you know, but I want to provide you with accurate information to consider.

  • Deblc
    Deblc Member Posts: 479
    edited May 2014

    AA thanks a lot, I know exactly where you are coming from and I appreciate it. I know the bottom line is that my prognosis without herceptin is not good.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2014

    Debic - do whatever you can to continue with the Herceptin - with your diagnosis, I think the full course would be best. What crappy sort of insurance company would deny you the proper treatment.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2014


    Thanks, Debic. I'm sorry not to be more helpful. I would much rather see the vast amount of money that continues to be used for overtreatment of patients redirected to where it would do some good.

  • Deblc
    Deblc Member Posts: 479
    edited May 2014

    suzieq don't know about the insurance in Australia, but in Jamaica, once you have reached the maximum coverage, that's it. And I couldn't afford great insurance to begin with. Surgery, radiation and chemo including herceptin for 12 weeks wiped it out. The herceptin is so expensive. How I wish now that I had never left Canada with their free health care (should have put up with the winters !!)

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2014

    Deblc - I'm so sorry - here in Australia Herceptin is paid for the by the government to the tune of $75,000. Our insurance does not have any limits on it for hospital and chemo - we are very lucky. I do hope you find a solution - the suggestion of contacting the manufacturers is a good one - you never know.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2014

    Deb....I would contact, as others have pointed out, the folks who manufacture Herceptin.  I would also contact the Jamaican Cancer Society as well.  Also contact your local legislator.  Then, call the local media.  Tell everyone that ASCO just reported at their annual meeting that a study supports the use of a year regimen of Herceptin.  If that fails,  do what this other woman did....I read an article that said a woman staged a sit in at her health ministry board's office.  

    You say you are originally Canadian?  If everything else fails, high tail it back to Canada and ask for asylum.  When they ask you why you want asylum, tell them that sending you back to Jamaica can kill you!  I have Canadian family.  Sadly, one of my cousins who lives in Toronto and is now being treated for early stage HER 2 positive breast cancer.  She is in the process of receiving Herceptin for a year.

    Desperate times demand desperate measures!  I wish for  you the energy to fight and I do mean fight.  It's bad enough that you need to fight cancer, you needn't be fighting the the establishment that should be helping you!  I wish you well!

  • moni731
    moni731 Member Posts: 293
    edited May 2014

    Deblc-  I would agree with the others. I rec'd only 12 treatments with Herceptin ( 8 then several weeks later, 4 more before I had to stop due to allergy) so far I am NED. But I am a llB. Please contact Genentech and inquire about assistance!  The supporting evidence for Herceptin is overwhelmingly positive as our best shot.  Are you still a Canadian citizen?  Please keep us updated. I'm in California, if I can assist in any way, please ask! Genentech headquarters if about 50 miles form me.

  • Deblc
    Deblc Member Posts: 479
    edited May 2014

    Susieq...Australia and Canada are what I think of as civilized countries because of their health care !!

    voracious ....unfortunately Jamaica is a very poor third world country .....those things you suggest will have no immediate result, trust me, there is only so much the government can do. They do underwrite tamoxifen and other chemo drugs but for some reason, not herceptin at this point in time. We already get herceptin at half the cost of what it would be in the first world, I think...but still astronomically expensive for the average person here. I will be contacting the Ja Cancer Society, as they can advocate, so I will see what they say. To go back to Canada you have to establish residency for at least three months to benefit from health care. I doubt they give you asylum for health reasons. 

    Thank you all for the support!

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2014

    decib I think it also wouldn't hurt to call Ganetech and explain your situation.  

  • Deblc
    Deblc Member Posts: 479
    edited May 2014

    Jaimieh I went on the website and I see where they help US citizens, but I will contact them too

  • lago
    lago Member Posts: 17,186
    edited May 2014

    Deblc Do try to contact the manufacturer. The worst that can happen is they say no. Be sure you know all the details of your diagnosis. Know the size of your tumor, how many nodes, grade, and of course that you are HER2+ may motivate them a bit more.

    BTW up until a few years ago there were insurance maximums here in the USA too.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited June 2014


    Debic,

    Very likely your onc would address this, but give strong consideration to having your vitamin D level tested and getting your vitamin D where it needs to be, and keeping it there.

  • Deblc
    Deblc Member Posts: 479
    edited June 2014

    On this website it says that "More than 89% of the women who got adjuvant Herceptin were alive after 4 years, whether or not they had a recurrence (overall survival) compared to 87.7% of the women who didn't get adjuvant Herceptin. This difference in overall survival wasn't significant, which means that it could have been due to chance and not because of the difference in treatment."

    I'm trying to understand this. This does not seem that herceptin is the miracle drug that it is being purported to be. Anybody have any insight on this?

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