My turn to ask for encouragement and information.

MyTurnNow
MyTurnNow Member Posts: 2,686 Member
I have been dealing with my 2nd recurrence since June 2011. I am being treated at Mayo Clinic and was put on Abraxane in August 2011. I have been on treatment every 3 weeks since August. I have had very good results with this chemo. My only child (daughter) is getting married in July and I was talking with my oncologist about possibly going on a chemo vacation. I just wanted to feel better more than 2 weeks out of the month. So, he ordered scans and told me as long as the scans showed my tumors (liver) as stable or better that I could do a vacation. I was so looking forward to this. Well, the scan showed that was not the case, one of the two liver tumors had doubled in size and there is a new one. Bottom line, the Abraxane is no longer working. The new treatment I will begin next week is Eribulin. I read up on it last night and was really wondering if any of my Stage IV sisters have any experience with this drug?

I am a very possitive person but this crap is beginning to anger me. I know that once diagnosed as Stage IV there is no cure BUT it's so hard to grasp that and accept it. I am a realistic person but it pisses me off that I have absolutely NO CONTROL anymore.

Thanks for any advice or information you can share.

Debbie
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Comments

  • weazer
    weazer Member Posts: 440
    Hello Debbie
    Wow, sounds like your a bit frustrated! UNDERSTANDABLY, I'm sorry I dont know anything about the drug you were asking about.
    I just wanted to let you know my heart goes out to you and I hope that this drug will work for you.
    Lets hope one of our other sister knows something about Eribulin.
    Lots of Hugs coming your way...Karie
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    Stage 4 can be Cured.
    Dear Debbie--

    I am so sorry you are going through this. I will continue with prayers for everyone here. I pray your new treatment does work. I pray for a new chance and good health again.

    I don’t know everything about stage 4, but I personally know people who have been dx with stage 4 – including the mother of a good friend — who was dx with stage 4 after 10 years. It came back in the liver. She only had 10% of survival rate. This was 4 years ago. She recently had a pet scan and she is CLEAN. Dancing with NED. This may not happen frequently, but it does happen. And I believe this will be your situation too. In the name of Jesus Christ. Amen.

    Sending you ALL the positive energy you can handle and thoughts of hope.

    Hugs
  • azdixie
    azdixie Member Posts: 14
    I'm sorry I don't know
    I'm sorry I don't know anything about that drug or stage 4 but I wanted you to know I'm thinking about you and keeping you in my prayers. I hope this new drug helps and you'll have a wonderful time at your daughter's wedding.
    Hugs,
    Dixie
  • SIROD
    SIROD Member Posts: 2,194 Member
    No Control
    Dear Debbie,

    I have sent you a pm on some information. I am so very sorry about the results of your scan. It is hard to realize that one has no control over one's body. My recent ct scan which I was so certain would be a good one turned out awful. I really expected decrease to appear and the results were that everything increased in the lungs, lining and ribs.

    Perhaps you can have a week or two off before the wedding in order to have your energy level up. I do wish you the very best with Eribulin.

    Doris
  • missrenee
    missrenee Member Posts: 2,136 Member
    SIROD said:

    No Control
    Dear Debbie,

    I have sent you a pm on some information. I am so very sorry about the results of your scan. It is hard to realize that one has no control over one's body. My recent ct scan which I was so certain would be a good one turned out awful. I really expected decrease to appear and the results were that everything increased in the lungs, lining and ribs.

    Perhaps you can have a week or two off before the wedding in order to have your energy level up. I do wish you the very best with Eribulin.

    Doris

    Crap, crap, crap!!!
    Oh, Debbie--I am so sorry for the bad results of the scan. Seems like we do our best to do everything right, with a strong, fighting spirit, and then total disappointment. I, too, have just become a member of the Stage 4 group and I know your frustration and disappointment as well.

    I am not familiar with the new drug, but let's once again hope for the best of all possible outcomes.

    Please know we are pulling for you and cheering you on with your new treatment.

    Take good care.

    Hugs, Renee
  • SIROD
    SIROD Member Posts: 2,194 Member
    Halaven
    I wonder Debbie if you would have more replies with the other name Halaven.


    Best,

    Doris
  • grams2jc
    grams2jc Member Posts: 756
    Stage 4 does make you mad
    That was the biggest emotion both my hubby and I had in December when I was dx. Ho! Ho! Ho! I still find myself pretty ticked about all of this on a pretty regular basis.

    I am praying that your new chemo will be much easier on you and work so well, so quickly, that you can take a break pre-wedding.

    I am right there with you in the rocky boat of "no control" and it doesn't seem to be a very sea-worthy ship.

    I will keep my fingers crossed for you,

    Jennifer
  • sea60
    sea60 Member Posts: 2,613

    Stage 4 can be Cured.
    Dear Debbie--

    I am so sorry you are going through this. I will continue with prayers for everyone here. I pray your new treatment does work. I pray for a new chance and good health again.

    I don’t know everything about stage 4, but I personally know people who have been dx with stage 4 – including the mother of a good friend — who was dx with stage 4 after 10 years. It came back in the liver. She only had 10% of survival rate. This was 4 years ago. She recently had a pet scan and she is CLEAN. Dancing with NED. This may not happen frequently, but it does happen. And I believe this will be your situation too. In the name of Jesus Christ. Amen.

    Sending you ALL the positive energy you can handle and thoughts of hope.

    Hugs

    I agree! I have heard of
    I agree! I have heard of people with stage 4 given a bad prognosis and they are still here!

    Praying for you as well!

    Hugs,

    Sylvia
  • KathiM
    KathiM Member Posts: 8,028 Member
    No advice...but plenty of hugs....
    Anger is good....in my opinion...it got me thru some horrible times!!!

    BIG hugs, dearheart!

    Knuffels, Kathi
  • MAJW
    MAJW Member Posts: 2,510 Member
    KathiM said:

    No advice...but plenty of hugs....
    Anger is good....in my opinion...it got me thru some horrible times!!!

    BIG hugs, dearheart!

    Knuffels, Kathi

    I was told...
    My health insurance has an oncology nurse that calls me every 4-6 weeks to see how I'm doing, or any questions...
    I talked to her about my lousy energy level...this may sound strange but she said to ask my oncologist to prescribe Ritalin !!!
    That if I had a special occasion, weddings, graduations, whatever, that taking the Ritalin for the day would give me the energy for the day...Ritalin works the opposite in adults...in children it calms them down...in adults the opposite..gives them energy...

    I am stage IV.... back on chemo every 2 weeks...I see my PA after chemo next week and since my energy, again, is in the tank, I'm recovering also from 10 radiation treatments to the brain.....can you say fun? lol. I'm going to ask for it as we had planned a trip to Florida to visit my husbands brother and his wife...they live at The Villages and the place is awesome! And I want to go!
    It may be worth exploring this with your oncologist for the wedding.....I'll let you know...my onc is very good at giving me whatever I ask for or need..

    I wish you the very best!
    Hugs,Nancy
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    MAJW said:

    I was told...
    My health insurance has an oncology nurse that calls me every 4-6 weeks to see how I'm doing, or any questions...
    I talked to her about my lousy energy level...this may sound strange but she said to ask my oncologist to prescribe Ritalin !!!
    That if I had a special occasion, weddings, graduations, whatever, that taking the Ritalin for the day would give me the energy for the day...Ritalin works the opposite in adults...in children it calms them down...in adults the opposite..gives them energy...

    I am stage IV.... back on chemo every 2 weeks...I see my PA after chemo next week and since my energy, again, is in the tank, I'm recovering also from 10 radiation treatments to the brain.....can you say fun? lol. I'm going to ask for it as we had planned a trip to Florida to visit my husbands brother and his wife...they live at The Villages and the place is awesome! And I want to go!
    It may be worth exploring this with your oncologist for the wedding.....I'll let you know...my onc is very good at giving me whatever I ask for or need..

    I wish you the very best!
    Hugs,Nancy

    Thanks, ladies!
    Nancy,

    Thanks, ladies!

    Nancy, what part of Florida will you be in? I am in northern Florida and it would be great to meet a sister if you are close by or passing through. You and I have been on this roller coaster for about the same timeframe. It really does stink but I'm not getting off just yet. I, like you, have too many things to do. As the wedding gets closer, I will check with my onco regarding Ritalin. Thanks and the very best to you, too!!
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    debbie: so so sorry! I
    debbie: so so sorry! I totally get your anger...positive or not...MY heart goes out to you and sending cyber hugs and pixie dust...

    Denise
  • camul
    camul Member Posts: 2,537
    Hi Debbie
    I started on Abraxane, it quit working and I took Eribulin for about 4 months. I have benign lesions in my brain and the Eribulin made my balance worse and I had trouble following conversations. Knew of lesions b4 mets. Drs thought it could be from meds or a virus at some point in my bc journey. (I was first diagnosed with IDC in Jan 2002).

    Stopped Eribulin in Oct for tests and hoping for chemo break. Had chest pains, ct scan showed connective tissues of ribs/chest wall full of cancer. A small tumor in my liver had grown and there was now a second one. Instead of having all the scans, went back on chemo, weekly Navelbine and Herceptin, and daily Evista (tamoxifen is toxic to my system), and Xgeva shot every 4 weeks.

    It all sucks and I do not always feel in control. I am grateful for good days and deal with the bad, but it is not easy and I do get pissy sometimes!

    Per doctor, Eribulin issues not from the chemo, but it was affecting the lesions. These were not se of this drug.

    Carol
  • fauxma
    fauxma Member Posts: 3,577 Member
    camul said:

    Hi Debbie
    I started on Abraxane, it quit working and I took Eribulin for about 4 months. I have benign lesions in my brain and the Eribulin made my balance worse and I had trouble following conversations. Knew of lesions b4 mets. Drs thought it could be from meds or a virus at some point in my bc journey. (I was first diagnosed with IDC in Jan 2002).

    Stopped Eribulin in Oct for tests and hoping for chemo break. Had chest pains, ct scan showed connective tissues of ribs/chest wall full of cancer. A small tumor in my liver had grown and there was now a second one. Instead of having all the scans, went back on chemo, weekly Navelbine and Herceptin, and daily Evista (tamoxifen is toxic to my system), and Xgeva shot every 4 weeks.

    It all sucks and I do not always feel in control. I am grateful for good days and deal with the bad, but it is not easy and I do get pissy sometimes!

    Per doctor, Eribulin issues not from the chemo, but it was affecting the lesions. These were not se of this drug.

    Carol

    Debbie,
    I have no advice but

    Debbie,
    I have no advice but I will keep you in my prayers and good thoughts.
    Stef
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    Hugs & Prayers
    Dear Debbie,

    Feeling for you and wishing you the very best as you begin a new chemo. I can picture you at your daughter's wedding looking radiant! In my opinion, true beauty comes from within and radiates out from us. I am happy you have such a momentous occasion to look forward to come July. I have an only child, an 11 year old daughter, as well.

    Hugs to you and yours.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I'm so sorry the Abraxane is
    I'm so sorry the Abraxane is no longer working. I've only been doing the stage 4 thing since August and have already changed chemo once (Xeloda to Abraxane)...I totally hear you on the accepting thing. It's pretty dang hard to do. I read somewhere else that it's all about constant adjustments...I have faith that you will handle this adjustment gracefully.

    On the other hand, it's wonderful to know that important wonderful things, like your daughter's wedding, still happen. I hope the Eribulin is easy on you, while being tough on the cancer...and that you can time it so that you are at your best for the wedding.

    Hugs,

    Linda
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member

    I'm so sorry the Abraxane is
    I'm so sorry the Abraxane is no longer working. I've only been doing the stage 4 thing since August and have already changed chemo once (Xeloda to Abraxane)...I totally hear you on the accepting thing. It's pretty dang hard to do. I read somewhere else that it's all about constant adjustments...I have faith that you will handle this adjustment gracefully.

    On the other hand, it's wonderful to know that important wonderful things, like your daughter's wedding, still happen. I hope the Eribulin is easy on you, while being tough on the cancer...and that you can time it so that you are at your best for the wedding.

    Hugs,

    Linda

    Thanks, again, ladies. I
    Thanks, again, ladies. I really am accepting the situation once again. I think what happens with me is I am so hopeful (as we all are) for the words from my onc "the tumors are gone", that when I get the exact different results, I get angry and feel totally out of control. Well, I do know that Stage IV means continuous treatment. I am still able to work, Jazzercise, spend quality time with my family and I am thankful for that. There are many, many people in this world that are much worse off than me. Thanks for your encouragement and helping me see the positive things out there....my beautiful daughter's wedding!! Can't wait. Have a wonderful weekend ladies!
  • New Flower
    New Flower Member Posts: 4,294
    MyTurnNow said:

    Thanks, again, ladies. I
    Thanks, again, ladies. I really am accepting the situation once again. I think what happens with me is I am so hopeful (as we all are) for the words from my onc "the tumors are gone", that when I get the exact different results, I get angry and feel totally out of control. Well, I do know that Stage IV means continuous treatment. I am still able to work, Jazzercise, spend quality time with my family and I am thankful for that. There are many, many people in this world that are much worse off than me. Thanks for your encouragement and helping me see the positive things out there....my beautiful daughter's wedding!! Can't wait. Have a wonderful weekend ladies!

    Debbie
    Congratulations with your daughter Wedding. It is great that she is able to find her sole made.
    I hope you will give a serious consideration to the plant I am recommending along with conventional treatment. I took during chemo with exception of two days before and two days after Chemo infusion.
    Hugs
  • Noel
    Noel Member Posts: 3,095 Member
    fauxma said:

    Debbie,
    I have no advice but

    Debbie,
    I have no advice but I will keep you in my prayers and good thoughts.
    Stef

    Praying for you Debbie.

    Praying for you Debbie.
  • ginnyl63664
    ginnyl63664 Member Posts: 8
    stade 4 suevivor
    1st i dont know anything about the chemo your going on and i have ibc breast with mets to thw bones. stage 4might be the last staging number but i know sevearl who has bear it and i myyself after 11 years still fighting it. stay strong. u can doit , huds and prayers