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Daylady - More news...

daylady
daylady Member Posts: 122

Hi Ladies, well while I was in Germany Dr. Herzog pushed and pushed to get Kaiser to do tumor testing that I had not been able to convince anyone to do.  Yesterday I got the results and found out that I tested positive for 3 of the 4 markers (Progesterone, Estrogen, and HER2). This basically triples my treatment options.  In Europe they will do Herceptin for endometrial cancer that tests positive for HER2.  Kaiser considers it still "investigational" so would not cooperate if Dr. Herzog adds that to my treatment plan (and I'm pretty sure he will because we've already discussed it.)  I was a little freaked out at how I would get the IV's if Kaiser is not willing to cooperate but it turns out that in Europe Herceptin is available as an injectable which would mean I could purchase it there and bring it home and do it myself (I'm pretty used to giving myself shots).  I actually found an article addressing the fact that they were only marketing the injectables in Europe because in the US the oncologists are so used to getting financial returns on the IV drugs they use!!  The cost of if injectables is significantly less than IV form.  But anyway... I'm happy!  A little good news and I'll take it!  - Helen

Comments

  • Lou Ann M
    Lou Ann M Member Posts: 996
    edited January 2017 #2
    Wow

    What great news!

    Hugs and prayers, Lou Ann

  • Gardena
    Gardena Member Posts: 102
    ER+ PR+

    Thats great news regarding new treatment options for you, Helen. Will you share with us what Dr. Herzog treats you with, if at all, for ER+ and PR+? I also tested positive for ER/PR and my oncologist is suggesting a combination /alternating of magace and tamoxifen. I'd love to know what the standard approach is in Europe / what Dr. Herzog's protocol is.

    I'm really happy for you, Helen. Having treatment options opens up such hope!! 

  • MAbound
    MAbound Member Posts: 1,156 **
    Thank you!

    DayLady, thank you so much for taking the time to share this information with us. Your story is so interesting and you never know who else it will help. Hoping for the best outcome for you!

  • Editgrl
    Editgrl Member Posts: 903
    Where there's a will, there's

    Where there's a will, there's a way!  That's great that there's an injectable form you can use.  I read one study that said women with breast cancer who got the injectable form had a slightly higher response rate than those who got it in an IV!

  • daylady
    daylady Member Posts: 122
    Gardena said:

    ER+ PR+

    Thats great news regarding new treatment options for you, Helen. Will you share with us what Dr. Herzog treats you with, if at all, for ER+ and PR+? I also tested positive for ER/PR and my oncologist is suggesting a combination /alternating of magace and tamoxifen. I'd love to know what the standard approach is in Europe / what Dr. Herzog's protocol is.

    I'm really happy for you, Helen. Having treatment options opens up such hope!! 

    I will certainly share! -

    I will certainly share! - Hugs! - Helen

  • Nellasing
    Nellasing Member Posts: 528
    edited January 2017 #7
    Wow- Great News!

    You just keep that good news coming!!!  It's a shame you have to go so far- if only the almighty dollar didn't have a strangle hold on our healthcare system!  Thank you so much for sharing :D  (((HUGS)))

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Helen, That is such great

    Helen, That is such great news and you are a true friend for sharing with us.

    What a great doctor too. So happy you have been able to do this.Please keep the news coming!

    Love and Hugs,

    Cindi

     

  • Double Whammy
    Double Whammy Member Posts: 2,832
    Gardena said:

    ER+ PR+

    Thats great news regarding new treatment options for you, Helen. Will you share with us what Dr. Herzog treats you with, if at all, for ER+ and PR+? I also tested positive for ER/PR and my oncologist is suggesting a combination /alternating of magace and tamoxifen. I'd love to know what the standard approach is in Europe / what Dr. Herzog's protocol is.

    I'm really happy for you, Helen. Having treatment options opens up such hope!! 

    Ask about Tamoxifen because

    I just have always wondered about it as a known side effect of Tamoxifen given for breast cancer is developing uterine cancer.  I took Tamoxifen for breast cancer and my oncologist said "well, I don't have to worry about you getting uterine cancer since you did that on your own and now don't have a uterus".  That made sense to me, but then I did start wondering how if that's a known side effect what about it's use on endometrial cancer mets?  I just wondered, never asked.  The aromotase inhibitors are typically given to postmenopausal women for breast cancer vs. Tamoxifen and I wonder why not an aromotase inhibitor instead?  I know some women in this group have taken Arimidex or Aromosin (both AIs).

    Helen, this is wonderful news about your trip to Europe and the potential use of Herceptin, etc.  In a country like ours, I can't help but wonder why there are so many roadblocks amongst the various health care systems. 

     

     

  • Kvdyson
    Kvdyson Member Posts: 789
    edited January 2017 #10
    Helen, it's so great to hear

    Helen, it's so great to hear how well things are finally going for you - you deserve it! My tumor was also ER+/PR+ so I'll be following your posts for how the treatments are working for you. Good luck and thanks for the update! Kim

  • sshhaarrii
    sshhaarrii Member Posts: 38
    Daylady, I have been

    Daylady, I have been following your posts. Your story in very interesting an amazing. You're a true pioneer! Your courage will benefit us all. 

    Best wishes, prayers and hugs to you.

    Shari

     

  • ncg007
    ncg007 Member Posts: 136 **
    Helen, A little Good news is

    Helen, A little Good news is great!  wishing you all the best with your journey and looking forward to hearing more good news from you.

    Nancy

  • Kaleena
    Kaleena Member Posts: 2,059
    Helen

    That would be great if you can get Herceptin.  My mom has Stage 4 Invasive Breast Cancer.   She had it in her left breast and a spot in both lungs and one lymph node.  Since is was 82 at the time of diagnosis, she did not want Chemo.  She is self sufficient and taking chemo she would need to depend on people which she doesn't want to do.   The doctors were adamant and also could not do surgery because of the small mets.  However, since her tumor was HER2 positive, she said she would try the Herceptin because basically there are no side effects.   She started taking it and after about 6 or more months, her tumor shrunk and the lung nodules disappeared.  She was then able to have surgery to remove the remaining tumor in her breast and the lymph node under her arm.   It is now over 18 months since her diagnosis.  She will continue to take Herceptin for the rest of her life or until such time as the Herceptin quits workings.   Then there is an alternate drug called Perjecta (or something like that).  

    Anyway, my best to you and thanks for the update!

    Kathy