Any Survivors of Mets out there - Need Help!

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mimi1030
mimi1030 Member Posts: 700
edited June 2014 in HER2+ (Positive) Breast Cancer

Hello Everyone,

I am new here.  I am emailing to get some support as my mom was diagnosed last week with Stage IV Metastatic BC to the liver and bones.  THe story begins 3 years ago when she was diagnosed with Stage 0 DCIS, no positive nodes, clear margins and Her2 positive, er/pr -  She did Chemo of A/C even though she they said she really didn't need to but she wanted the extra security.  They did not give her herceptin as she had no positive nodes.  They said she had only a 2-5% chance of it reoccurring.  Well here we are 3 years later and she had a PET Scan done randomly as she was having some problems with her TRAM Flap reconstruction around her belly button.  They did the PET scan and it revealed the cancer was back in her liver and some of her bones.  She had her first treatment last week of Taxol, they did a MUGA test last week and hopefully tomorrow they can introduce the Herceptin too.  Week 3 they will add in Zometa for bones.  Are there people out there living with mets from BC and how long have you been in treatment and what worked for you to control the mets.  My mom is 52 and she is a single parent to the 3 of us.  We are from England so we only have us 4 here in the US.  I am 35, my sisters are 26 & 11.  So as you can see she still has a young one at home.

Any words of encouragement would be a blessing to me. 

Thank you so much for listening.

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

    Mimi,

    Im not a mets survivor but I am a breast cancer survivor...I cant answer the questions that you asked but I didnt want you to feel alone here...

    There are many, many ladies here that are dealing with mets and some of them for a very long time...they will be along soon to give their advice and experiences....

    Im happy that you found this web  site...It was my sanity saver when I was first dx'd....you will find it a very warm, loving place for you and your family to join....

    Hugs

    Jule

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  • mimi1030
    mimi1030 Member Posts: 700
    edited October 2007

    Hi jpann,


    Thank you for your kind words.  I never thought I would be doing this again with my mom, they told us her cancer was such a small primary that it would not likely happen again.  Now they are saying her cancer is not behaving the way it should be.  That is comforting.  I am praying hard that the Taxol and Herceptin turn it around and hopefully put her into remission.  I feel positive about it.  She is very well, no complaints of pain anywhere in her body.  The doctor was very pleased to hear that.  Hopefully it means we caught it early enough so it will respond to treatment that much faster.  She is being treated at the University of San Francisco Comprehensive Cancer Center, so they have the top notch clinical trials going on there too so we have lots of options for treatment. 

    Thank you for responding, it really helps to know that you can talk to someone about this, being the oldest child you tend to not have anywhere to turn to yourself when you are trying to hold up your mom as well as your siblings.

    Thanks again :0)

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  • KLynn
    KLynn Member Posts: 1,407
    edited October 2007

    Hi Mimi, Yes I had mets to my lungs after almost 5 yrs from original dx. I am now in remission , as of last week. It took a long time with treatment almost 2 yrs of chemo with herceptin, but I finally can come off of the chemo. I will be staying on the herceptin getting it every 3 weeks instead of weekly as I was getting it. I feel that the herceptin has made a huge difference for me. I will be staying on it probably for the rest of my life. I hope your mom does as well as i did on it. There are many women out here living with mets, some go into remission and never have to go on chemo again.Glad to hear you mom is not in pain. If one drug doesn't work there is always another so don't give up hope. I was on taxol for 3 months at first and didn't have any results at all, so then I swithched to Xeloda and I was on that for 7 months before I asked to switch because of se's. Last I was on Gemzar for 1 yr.  and that seemed to do the trick, all along with herceptin. Your mom is luck to have you helping her, stay strong and best wishes to you and your Mom. Take care KLynn

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  • apium
    apium Member Posts: 70
    edited October 2007

    Dear Mimi,

    I just started chemo only 4 months ago, but I feel I understand where you're coming from.  My son was in the chat rooms here and researching all over the internet trying his best to help his mom.  My children were terrified!

    I am 58 yrs and have stage IV breast cancer with liver and bone mets.  I hope to be a long time survivor. My doctor says I have done extremely well!  She was very surprised!

    At the 2 month re-evaluation my 5.9 cm her2 positive er positve tumor was gone.  Bones were stable with no more lesions.  Liver lesions were shrinking.  My recent re-evaluation 2 weeks ago showed the same, no tumor, bone stable but liver lesions have shrunk "dramatically". 

    Because I started experiencing nerve damage, my doctor said that she was going to stop my chemo.  She said because I was doing really well she felt comfortable with me being on herceptin only every 3 weeks.

    I posted in "Don't hog your journey" what may have contributed to my good response to treatment.

    My son is constantly sending me emails about long term survivors with stage IV breast cancer.  Below is a quote from one of his recent emails.

    "One of the major changes in metastatic breast cancer over the years is conversion from an acute fatal disease to a chronic one that people can live with. I have people with metastatic breast cancer that I've cared for for 25 years. I expect that we're going to see more and more people with long survival with this disease, which is always a prelude towards disease cure. I've seen cures over the years I've been involved in cancer medicine. It's always a chronic disease before it becomes a curable one, and I suspect we're in that transition now."

     

    Please give your mom a hug for me.   

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  • mimi1030
    mimi1030 Member Posts: 700
    edited October 2007

    Hello,

    It is such a relief to hear of people successfully fighting mets.  My mom is terrified as are we all.  She just had her first Taxol last Tuesday, now she is afraid that her WBC will be too low for the next treatment, especially since she gets her first does of Herceptin tomorrow.  She has not had any side effects from the Taxol, except she looked sun burned the day after on her face and chest.  She is not tired or sick or anything.  Can you usually tell if you WBC is down? It would be a long way for my mom to travel to get her chemo and then them say she can't have it cause her counts are down.  She lives on the central coast in California and her treatment is in San Francisco.  We are currently trying to set her up with another oncologist near her home to co-manage her treatment from UCSF.  It is too hard on her leaving my little sister all the time to drive up north for treatment.  We did it this way the first time, she got her infusions close to home, even though her doctors are here in the Bay Area where I live. 

    They never told us how big the spots were on her liver, only that they could not remove them as they would have to take it out of all parts of her liver.  They said they couldn't define the size because it only picked up the edges.  Not sure what all that means, haven't seen a copy of the report yet.  She has a spot on her lumbar spine, one on her right pelvic bone, and her left femur.  That is what the PET scan revealed. 

    I think my mom would feel more hopeful if she saw some improvement in the liver enzymes, her AST is 106 right now.  I told her to think of this like a chronic disease like Diabetes, it is something that has to be controlled for the rest of your life, and I told her that it is not a death sentence anymore.  She has so many options available to her now.  And I have been reading about the Neuvax for Her 2 positive tumors.  It sounds promising also.

    I will be taking mom for her chemo tomorrow in San Fran, I pray that the counts are high and she doesn't have to miss it since she has only had one round already. 

    I am not sure how toxic Taxol is on the blood, if you took Taxol did you lose you WBC count after the very first dose or did it take a few doses before it was reduced?


    Thank you for listening, it is so nice to have someone to talk to.

    Mimi

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  • apium
    apium Member Posts: 70
    edited October 2007

    I was on taxol.  My white blood count never went down.  I was alwasy around people with colds and the stomach flu and never got it.  My red blood cell count gradually went down with each treatment but never low enough to be a concern.

    My AST was 212.  My bone mets is "extensive and numerous", quoting from my lab report. It took about 5 weeks for it to hit the near normal range.  Its been normal ever since then. 

    I hope this helps. 

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  • mimi1030
    mimi1030 Member Posts: 700
    edited October 2007

    That is good to hear that the Taxol didn't effect your WBC, I know everyone is different but the oncologist told my mom this is much better than the Adriamycin and Cytoxin she was on the first time around.  My moms RBC, hemoglobin and Hematocrit were a little elevated only by .1 or so last week they said they will watch that but nothing to be concerened about.

    I read that you were not taking the Zometa for your bones, how come you had to stop, does it effect your teeth?  I will have to tell my mom about you as you have what she has and I know she gets great strength talking to others who can relate to how she feels.  She has her good days and bad days.  Unfortunately I live 3 hours north of her so I can't be with her all the time.  She comes up to me so I can take her to the oncologist in San Fran.  She will have her first 3 weeks of Taxol up here and then she will transfer her treatments close to home so she doesn't have to leave my sister too much.  I hope this chemo is good to her and gives her speedy results with little side effects.

    Thank you for sharing your info

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  • apium
    apium Member Posts: 70
    edited October 2007

    My doctor put Zometa on hold because I will be needing extensive dental work in the future and Zometa stays in our bodies a long time.

    For me this has been a roller coaster but with many more ups then downs.  I decided at the beginning that the only way for me to feel good about all of this was to focus on the positive.  What positive?  Big question.  I continued over and over again to figure out how I could "milk my cancer".  And it worked!  I wake up excited to be alive, so grateful for my life, my family.  I have more joyful days now then I did 4 months ago when I was diagnosed.  God has been good to me because he blessed me with a new perception of my life.

    These are the darkest times of your mom's journey with cancer but she can turn it around.  I remember those days.  It wasn't too long ago.  I hope she can find her own unique way of turning her cancer into  a blessing.  And remember there is more and more good news all the time about stage IV breast cancer.

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  • DebbieB
    DebbieB Member Posts: 161
    edited October 2007
    The web site http://her2support.org/ is specifically for HER+ women.  There are a lot of Stage 4 women who are HER+ and surviving!  The amazing thing is these women are surviving for years!   There are a number of bios that are so encouraging. You can find all the info you need on what it means to be HER+.  I like the breastcancer.org site better but I will go to the her2support.org site when I am looking for current information on HER+.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    Hi Mimi,

    Im glad to see that other ladies jumped in here to help you.....I knew they would Smile....I know what you mean about being the one to hold everyone else up...I am the only girl in my family.....4 brothers, let me tell you it was rough trying to date in my family!!!! I love them all dearly but when it comes to dealing with the rough stuff it always seems to fall to me.....They were all there for me through my bc journey but they were really just in the back ground as they really didnt know what to do.....

    Just as a thought, you might show this web site to your mom and if she would like someone to talk to she can register herself as well...

    It sounds like you are a wonderful daughter and Im sure that she is very thankful to have you...keep up the good work and try not to exhaust yourself helping everyone else...make sure to take a little time for you too....you have to deal with your own fears, anxiety too...

    Hugs

    Jule

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  • snherrington
    snherrington Member Posts: 30
    edited October 2007

    Hi there is hope out there... I was dianosed with stage 5 IDC, Her2neu+ in 2004.  I found a lump the size of a golf ball in my left breast... I was very well endowed and had a history of fibrocystic disease so my breast always felt lumpy... But when I hit this there was not doubt that it did not feel normal.  It was 5cm and I had 6 positive nodes out of 11 and a CT/scan showed 5 spots in my liver... after having a PET/CT it showed 8 spots not 5.  I had just had a mamogram 10 months earlier and it was clear... that is how fast it grew and how aggressive it was.  I had a double mascectomy with tissue expander placement.  I had the worst seromas and had to have my breast aspirated several times a week.  A month later I started chemo while trying to have saline injections for my breast... I contracted a horrible infection and had to hospitalized and have the expanders removed and 4 weeks of IV antibiotics..  They started me on weekly Herceptin treatments and Chemo every 3 weeks.  My tumor marker fell from 235 to 88 after just one treatment.  I had chemo for 6 months and got a clean bill of health after that.  But do to me being Her+ I receive Herceptin treatments every 3 weeks for the rest of my life.  I have continued to be in remission for over 2 years.  Her+ was explained to me by my oncologist as this... she said when you have a cancer cell it's like it has a door on it and chemo closes that door... but when you are her+.. that door always remains open and the only thing to keep the cancer from getting out of the door and spreading is by keeping the fire out.. hence the Herceptin.  People who are her+ have aggressive cancer that spreads quickly and the cells multiply more rapidly than the typical cancer.  I just completed my breast reconstruction again and I am pleased... of course they will never be the same... but I am here and I have survived... and each day is a gift.  I hope all goes well for your mom and a second opinion never hurts.    Stacey H.

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  • mimi1030
    mimi1030 Member Posts: 700
    edited October 2007

    Hello There,

    Just thought I would update everyone.  I took my mom for her second round of Taxol yesterday and she got a good MUGA result so they gave her her first dose of Herceptin.  We got her blood work back and her Liver enzyme went from 126 last Tuesday to 96 yesterday.  Does that mean she is responding to the treatment?  She was very relieved to here that it had gone down she hates to get results from anyone anymore, so she was not looking forward to it.  But it was nice to see her smile when she did.  She will have Taxol again next Tuesday with herceptin and then next week they will start her on Zometa.  

    They have never taken her tumor markers, should I ask them too?

    Stacey it was nice to hear your story, that you have been there and fought this successfully.  They never told my mom how many spots there were, and the radiologist I guess never put how big they were.  I am waiting to get a copy of the report so that I can read it for myself and see what it says.  I need to get my mom in here so she can chat with you nice people. 

    I have been praying really hard that we will continually get good news with the treatments.  She has had no side effects so far to any of the drugs yet.  She still has her hair too.  The first time she did chemo her hair fell out after the first treatment.

    Thanks for all your information Laughing Michelle

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