Mum's refusing Herceptin!

holbygirl
holbygirl Member Posts: 3
edited June 2014 in HER2+ (Positive) Breast Cancer
Mum's refusing Herceptin!
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  • holbygirl
    holbygirl Member Posts: 3
    edited November 2007

    I posted this on another link and was advised to post it here for some more advice? 

    Hi, I've not posted on here before but am very concerned about my Mum and would really welcome your thoughts and advice. My Mum was diagnosed with breast cancer earlier this year and had a breast removed as well as all the lymph nodes under her one arm. She has just finished chemo and is due to start radiotherapy soon. She has then been prescribed Herceptin for 12 months. She has read some blogs on the internet, which have worried her and has now decided not to take the Herceptin! She's made this decision without speaking to her consultant! Don't know what to do for the best, I want her to discuss this with the professionals but she won't! We lost my Dad to cancer ten years ago and it seems crazy not to take the treatment that's on offer. Please help!

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  • jengrsq
    jengrsq Member Posts: 26
    edited November 2007

    Dear Holbygirl,

                            Let me start by saying you have lots of support here and we care about you and your mom. Your mom should not read everything of the internet alot of stuff is years old. Even when you go to Breastcancer.org all the information is from 2005. You and your mom need to sit down with her Team with questions on herceptin. I know when I first started this journey I had questions all the time but it made me feel at ease and peace of mind when I talked to my Team.  I wish you all the best and my prays are with you and your mom.  But please stay off the internet all the information is "outdated." If you want updated information it's your doctor and team that will help you and your mom. I hope this helps you and your mom and to give you rest of mind.               Debbie

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  • mimi1030
    mimi1030 Member Posts: 700
    edited November 2007

    Hi Holbygirl,

    My mom had BC diagnosis in 2004, her nodes were negative and she was Her2neu positive but at that time they did not give Herceptin to people who did not have metastatic cancer.  It wasn't standard protocol, so she only received chemo.  She was initially stage 1.  Today 3 years later she has Stage 4 mets to the bones and liver.  She is now on chemo and herceptin and is responding very well.  I can't say for sure but I believe had she been given herceptin the first time, the reoccurance may not have happened.

    One thing my mom never does is read the internet.  It has bad info and outdated material.  Also remember no one is a statistic.  Herceptin has been good to my mom, no side effects and her mets are responding well and she has only had 2 infusions of it.  Tell your mom not to be afraid of Herceptin.  She should take it and not stress on what may or may happen.  She will be well taken care of during the treatment process by her oncologists. 

    I wish my mom had been given the chance to hav ethe herceptin the first time rather than wait for a reoccurance to receive it.

    Hope that helps some :0) Michelle

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  • good
    good Member Posts: 15
    edited November 2007

    Please try to talk your mom into working with her doctors on the Herceptin issue.  Yes, there are risks involved with every treatment.  I had one year of Herceptin given with the chemo and then on it's own with no problems.  The only trouble I had was a fever and cough while I received the chemo too.  After that, nothing.  The doctors monitor VERY closely for any possible heart problems.  Those of us who have been on Herceptin are grateful as it gives us the very best chance to beat this thing.

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  • nitewind
    nitewind Member Posts: 64
    edited November 2007

    I hope  you can talk to your mom some more about the Herceptin. I feel that it is a Godsend especially now that early stages are qualified to get it. My surgeon was ecstatic telling me about this drug, he feels that it's a "magic bullet". I'll be finishing up my year of herceptin in about three weeks and I can honestly tell you that I had no side effects from it. Like the girls said, they monitor your heart and keep a close eye on it. But truthfully, I'm so blessed that I was able to get this incredible drug.

    Good luck in talking with your mom. I hope for the best for her.

    Hugs

    Susan

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    Herceptin is an incredible drug, but it is not without risks. I took it for three months before finding out my LVEF (left ventricle ejection fraction) had gone from 67% pre-chemo to 33% after Adriamycin and Herceptin.

    Now I am unable to take Herceptin anymore. My cardiologist is trying to get my heart a little better. So far, it's still 33% and my last Herceptin was the beginning of August. I am taking 4 kinds of heart medication. I don't know if my heart will ever get back into a normal range or not.  Cry

    May your mom make the right decision for her.

    Miss S

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  • Valsul
    Valsul Member Posts: 160
    edited November 2007

    Hi Holbygirl - I guess from that name you are from the UK and a fan of Holby City.Smile I am also from the UK.

    Somewhere on these boards someone reported that when the results of the clinical trials were announced at a conference the quote was the drug did not just fulfil expectations it exceeded their wildest dreams. 

    Of course there are side effects, but not enough to warrant not taking it.  There are issues to do with the heart which caused me some hesitation, but the heart is monitored 3-monthly to see how well it is doing.  I have been on Herceptin since Jan and have only 4 more infusions to have.

    Ask your mum to listen to her team - you know what the docs are like over here, they will definitely try to persuade her to take the best option for a good outcome.

    Love and hugs

    Valerie S

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  • ericajennine
    ericajennine Member Posts: 11
    edited November 2007

    My Mom is also reluctant to take herceptin.  She had a mastectomy 2 months ago for a 1cm tumor and has no positive nodes.  However, she is her2 positive and her ONCO DX test score is a 39 and she is advised to do chemo and herceptin.  She wants to go the all natural route diet etc. 

    I am scared for her and am praying that she make the right decision.

    Any thoughts?

    PS my mom is a 30 year survivor - of her other cancerous breast!! She wished she had both off then.

    Erica

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  • Loocy
    Loocy Member Posts: 2
    edited November 2007

    I have just completed 12 months of Herceptin with no heart issues at all. I also had some mild side effects ater my infusion and these were:



    • A mild headache for 24-36 hours after infusion.

    • More frequent hot flushes for about a week after my infusion.

    • Sometimes a bitof joint pain - but not always

    • A mild fever, though nothing to worry about.



    All this was still bearable and was still worth putting up with as the benefits of herceptin far outweighed the risks of not taking it.



    To be completely honest, Herceptin treatment is a breeze in comparison to the barbarism of chemotherapy.



    The internet can be a really dangerous place as so many people focus on the negative and the horror stories and the many positives are just ignored which frightens people such as your mother.



    Unfortunately Her2 BC is so deadly and without Herception chances of survival are significantly less than other Breast Cancers. With odds like that, there was no way that I was going to not take the stuff if I could have it.

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  • Claire
    Claire Member Posts: 5
    edited November 2007

    Hi Hobygirl:

    I took Herceptin for a year. I noticed no side effects only mild fatigue. I have spoken with others who have taken Herceptin and they have said that they hardly feel like they are on anything. I would advise your mother to try it. She can always decide to stop.

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  • mimi1030
    mimi1030 Member Posts: 700
    edited November 2007

    Hi Holbygirl,

    I posted on this before about this, but my mom has so far done 5 treatments with Herceptin and she feels great, she only wishes this had been available to her 3 years back when the cancer was so small.  But she is doing really well.  She has no side effects at all from the TAxol/Herceptin/Zometa combo.

    Take Care,

    Michelle

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  • Kerry1000
    Kerry1000 Member Posts: 103
    edited December 2007
    I truly hope that your mum speaks with your consultant; she will probably be advised that Herceptin will most likely be of great benefit and that the risks, while present, are small compared to the much greater risk of the cancer spreading.  I recently finished Herceptin and had no symptoms from it.  I had regular MUGA scans which were fine.  Yes there is a small risk of heart problems but even if those develop, they almost always dissapate after stopping Herceptin. In a nutshell - Herceptin gives one a much, much better chance of surviving cancer and has a very, very small risk of irreversible problems.  It has very few side effects and requires only about of 30-minute infusion every 3 weeks.  It's one of the best things that's happened re b.c. in the past 10 years.  I hope she can be convinced!
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  • Annaanne
    Annaanne Member Posts: 190
    edited December 2007

    Please urge your mom to take Herceptin. The data is clear. Her+ bc is more likely to metastasize than non Her2. With herceptin, the chance of recurrance is 52% less than without.

    Maybe your mom would settle for a shorter course of herceptin. There are nine week and six month studies, not finished yet..but maybe she and her doc would be comfortable with trying that, rather than one year.

    Her+ bc is aggressive, even when dx early. Herceptin has totally changed the prognosis for this type of bc. At my onc's office, not one woman who took herceptin has recurred. I think it's a huge mistake not to take this life saving drug.

    Annaanne

    stage 3a, her+, er/pr-

    dx 5/05

    chemo/surgery/rads/herceptin

    NED

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  • Lcharmie
    Lcharmie Member Posts: 430
    edited December 2007

    HI HOLBYGIRL,

    I WAS DIAGNOSED WITH BREAST CANCER IN NOV. 1998 AND AT THAT TIME TEST FOR HER2 WAS NOT AVAILABLE, SO I WAS GIVEN THE ADRAMYCIN, CYTOXIN, AND TAXOL, AND 34 TREATMENTS OF RADIATION, ONLY TO HAVE A RECURRENCE IN MY LEFT BREAST COME BACK IN MAY 2002--THE TESTS THEN SAID I HAD HER2, SO I WAS PUT ON HERCEPTIN AND NAVELBINE CHEMO IN AUGUST 2002,AFTER MASTECTOMY ON LEFT BREAST AND 3 WEEKS LATER MASTECTOMY OF THE RIGHT BREAST,  I HAVE BEEN ON HERCEPTIN EVERY WEEK SINCE TIL  XELODA CAME OUT AND I DID NOT RESPOND TO THAT, AND MORE RADIATION AND I DID NOT RESPOND TO THAT, AND NOW I AM ON TYKERB AND NAVELBINE AND AM RESPONDING.  BACK TO THE HERCEPTIN--IT TO ME WAS THE BEST OF THE MEDS--THE SIDE EFFECTS WERE OF A LESS DEGREE--NO LOSS OF HAIR--THEY HAVE TO DO A MUGA SCAN OF THE HEART EVERY 3 MONTHS-- I HAD NO PROBLEMS--LESS FATIGUE--WHAT HAPPENS IS A PERSONS CANCER CAN BECOME RESISTANT TO THE MEDS LIKE WHAT CAN HAPPEN WITH ANY OF THESE MEDS, I ALSO WENT THROUGH THIS WITH THE NAVELBINE---CANCER CAME BACK IN MY SKIN--YES BREAST CANCER OF THE SKIN---SO I WAS OFF OF NAVELBINE ABOUT A YEAR--BACK ON NOW AND AM DOING WELL.  I WOULD LOOK AT GOING BACK ON HERCEPTIN IF I HAD TO--I LIKE THAT MED BETTER THAN ANY OF THEM AND NOW THEY CAN GIVE IT EVERY 3 WEEKS--THAT DID NOT DO WELL WITH ME--MAYBE BECAUSE MY BODY WAS USE OF THE EVERY WEEK DOSE.  I HOPE MUM WILL GIVE IT SOME THOUGHT--I SOMETIMES BELIEVE IF THEY COULD HAVE GIVEN IT TO ME IN 1998--I MAY HAVE NOT GONE THROUGH THESE CHALLENGES---WHO KNOWS--MAIN THING--DON'T GIVE UP!!!

    LINDA C.

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  • Pharmmom
    Pharmmom Member Posts: 300
    edited December 2007

    Hi,

    I did not take herceptin which was on clinical trials at the time of my bc.  I was her2positive and had 3 positive nodes.  I did A/C plus Taxotere.  I currently take Arimidex.  I was diagnosed in 2002 and have had no recurrences. 

    Barb

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  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2007

    Holbygirl,

    Here's one for the records...

    By the time my bi-lateral BC was dx'd it had already spread to my liver, but that wasn't confirmed until a year later.  By that time, I had a 9cm tumor in my liver and numerous 2cm tumors throughout my liver.  It was very aggressive and tripling in size every three months.  I went on Gemzar and Herceptin and after 9 months, my liver went into remission.  My liver has now been in remission for over 3 years and I have continued on Herceptin alone every three weeks and will have it for life.

    So I have had Herceptin for 4 years and it is responsible for me remaining in remission. I have no ill effects from the Herceptin and my heart is fine.  It is very easy for me and doesn't bother me a bit after the treatment.

    Your Mom will be in my prayers.

    Denise

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