Where do you go when Herceptin won't work for you?

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Hindsfeet
Hindsfeet Member Posts: 2,456
edited September 2014 in HER2+ (Positive) Breast Cancer

I was dx 2 1/2 years ago with invasive ductal carcinoma, grade 3 with the her2+++. My oncologist allowed me to do Herceptin without chemo. Unfortunately I had to be pulled from Herceptin treatments due of the drop in my Ef from 65 to 42. It made me fatigue and it was difficult to breathe. I had a difficult time just walking up the stairs. I came home for treatment and slept for a few hours. Didn't accomplIish anything on Herceptin treatment days. After a few months of Herceptin treatments my oncologist ordered small doses of it instead of the typical amount given every 3 wks. My heart worsen. I was sent to a cardio specialist, who said get off of it or die. I did. My oncologist hoped the 4 1/2 months on Herceptin did the trick as some studies proved it was enough for early breast cancer.

I had a right breast mastectomy. I hoped it was enough for the 1.8 C her2+/invasive cancer. I've been going in for my annual mammograms. The last mammo in April showed a new nodule on the chest wall under left breast. I wasn't worried. It didn't look irregular or have calcifications. However, I was asked to come back for a ultra-sound and then a biopsy. It was just an ill defined nodule. I question why I had to do a biopsy for the nodule when I have several ill defined nodules around my implant in the right breast and not one of them were biopsied.

I had an appointment with my oncologist. News wasn't good. It seems that I have a regional recurrence of the invasive/her 2+++ / grade 3 cancer. I was surprised. I am now scheduled for a PET scan, echocardiogram and a MRI. My oncologist said to just take one step at a time as she knows I'm a bad patient and reactive to conventional treatment. Before seeing her the next time, I need to do a little homework so I feel like nothing is being pushed on me and I'm somewhat am in control. I don't have as much time for research so I thought perhaps you might help me. I want to know my options before seeing my oncologist in a few weeks. I want to be mentally prepared.

Since herceptin is toxic to my heart, I wanting to know what else is out there to treat her2+++ cancer. I would like to know what they are and side effects. Do they come in a pill or infusion? How long do you have to take them? Are they really effective?

I know the her2 +++ girls have done their homework and research. Just need a little info as I'm not sure what to do right now. Back to square one. Thanks.

 


 

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

    There is a phase 2 clinical trial for Stage 2 & 3  HER 2 POSITIVE disease announced at the current ASCO meeting using palbociclib along with endocrine therapy. Ask your doctor if you can enroll in the trial.  Good luck.

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

    There is some exciting news for HER 2 positive tumors coming out of this week's ASCO conference.  Ask your physician if you might be able to participate in one of the trials.

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  • sumair
    sumair Member Posts: 12
    edited June 2014

    Hi. I am allergic to Herceptin and was told there is no other drug to replace it. I don't know if that's just the case in Canada or everywhere.

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited June 2014

    VR...will ask my oncologist. My oncologist also said I'm allergic to Herceptin. She did say there are two other treatments like Herceptin. I am so bummed I have to deal with this again, and since it is in a different location it might be stage 3. I am a little scared. I just hope there is only one small recurrence. I thought with the early stage dx that with a mastectomy and Herceptin I was in the safe zone.

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


    Hindsfeet,

    I'm sorry you are dealing with it again. Early stage is more likely to be a "safe zone" for most but not all, and all of us are always at risk for recurrence, even those who do chemo and Herceptin and hormonal treatment. I hope that some of the other drugs will work for you. Do what you can to minimize your risk and improve your health, and seek help for dealing with any kind of difficulties you face in the process.

    AlaskaAngel

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited June 2014

    Good to see that you are still around Alaska Angel. I am still a little shocked of the recent dx. When someone said I might be stage 3, it initially scared me. I am praying and trusting God to guide me, and give me wisdom to what I should or should not do. I wish there was an easier way to deal with this. I had hoped that since my last dx better treatments for cancer would have been discovered. I did read earlier this year that chemo is not used as much. I've a lot to catch up on.

     


     

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


    It is always a shock. One thing I take comfort from as a more typical bc patient (over 60 now) is that more often than not, a postmenopausal condition tends to result in slower-growing cancer, which then provides a longer time span for newer treatments down the line. One advantage that you still have that those who have done chemotherapy previously often do not have, is that you may have wider access to the choices available. So do your best to make the best of that advantage.

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


    Also -- very likely your onc will 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.

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited June 2014

    Thanks AA...I take vitamin D's ... lots of it. I think the cancer I have is from a few years back. I was told it been there since last dx, but too small to see.

    I believe that stress creates an environment for cancer growth. Last summer my job was extremely stressful. Every time I went through a extremely stressful event a year later I was dx with bc.

    I'm going to be checking out new treatments for her2+ cancers. 

    ((hugs)) 


     

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  • mjm1
    mjm1 Member Posts: 139
    edited June 2014

    Hi Hindsfeet, 

    hope you don't mind me dropping in to this thread - my Mum's her2+ and on the standard TCH. 

    I'm not fully up to speed on whats used in which situation (neoadjuvant vs adjuvant, and early vs advanced), but there seem to be quite a few drugs commonly used with HER2+ - perjeta, tykerb, TDM-1 being the main ones that come to mind, there was one being studied called bevacazumab or something but not sure it's still used for breast cancer, and there's clinical trials for a bunch of others (neratanib etc).  So there's quite a few possibilities.

    There's also at least 1 promising vaccine for her2+ and I think there's some clinical trials starting up- heres a link:

    http://her2support.org/vbulletin/showthread.php?t=...

    Hope you & your onc find the perfect solution for you!

    Best wishes, 

    Miriam


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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited September 2014


    Catching up on this...is unfortunately, my recent mammo again tumor, her2+ , hormone positive also grade 3 tumor in left breast made me pause. I asked for a PET scan which showed wide spread cancer in bone, spine, lungs, liver, skull, and now a spot in the brain. It is a shock to be told one week you are stage 1 and the next week you are stage iv. You have a whole different deck of cards to look at. Right now, it is about survival and quality of life.

    Although the last time on Herceptin my EF dropped from 65 to 42 and my cardio doc said I had to stop it or heading to heart failure.

    Now Herceptin is necessary to block the HER2+ over expressed gene. My friends are praying I can handle it this time around. The initial infusion I felt my heart race. Because of prayer, I do believe I'm handling not just Herceptin but Perjeta. Before starting Herceptin, mo had me do a echo, which came back strong 56. I just had another one and I am back up to 65. I'm doing well, and it is a miracle that I'm tolerating the two infusions. However, because of the toxicity of previous Herceptin infusions a few years back, I am doing low dose ones every week over 90 minutes. Thus, I'm constantly infused with Herceptin, and now too Perjeta. No side effects.

    The sad part it can't break the brain barrier. I'm going for alternative to hopefully to keep the brain from more tumors.

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

     

    hindsfeet,

    Given that metformin trials are in progress to see if it reduces recurrences of breast cancer because it is thought to help treat stem cells (where chemo does not), and given that you earlier mentioned reducing inflammation as a way of combating recurrence, consider this info about the use of metformin and the BBB:

    http://www.ncbi.nlm.nih.gov/pubmed/21098880 

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  • pearlady
    pearlady Member Posts: 882
    edited September 2014

    Hindsfeet I totally agree with AlaskaAngel's recommendation on the Metformin. My onc prescribes it to almost all of his patients.  And the good thing is you don't need to be in a clinical trial to get it approved by insurance.  I currently take 1000mg daily. 

    Another thing to consider is Tykerb.  Tykerb is also for Her2nu and is suppossed to be able to cross the brain barrier.

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited September 2014

    AA...I will check it out and ask my oncologist about the possibly to joining the trial. Thanks

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