Reoccurence after Herceptin?

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Ellen263
Ellen263 Member Posts: 4
edited March 2014 in Breast Cancer #1
With my last infusion of Herceptin (number 52)scheduled for Monday, I can't help but wonder if anyone knows of someone who has had a reoccurence despite such an aggressive protocol? I was diagnosed with StageIII b/c in April 2003 (8 cm and cancer in all 31 nodes). I had a mastectomy of my right breast with chemo prior to surgery and after, as well as radiation and reconstruction. As each of you profoundly know, it is an exhaustive journey this path called cancer. Having been through such aggressive treatment, yet having also been told at one point that my chance of cancer reoccurring is 50/50, I would appreciate knowing how long others have been "cancer free" following taking Herceptin. Thanks in advance for any insight you might offer. This is my first time connecting with other survivors through this network... what a wonderful resource! Blessings, Ellen

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  • lindatn
    lindatn Member Posts: 229
    #2
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    I cannot answer your question but what a long war you have fought. Wonderful to be nearly finished. Welcome to our discussion board we don't always agree with each other but we all love each other. My thoughts and prayers are with you. There will be gals who will answer your question but remember we are all different but God is with each of us. Linda
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #3
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    Hi Ellen and welcome to the 'club' you never wanted to join, but in a strange way is a real blessing!
    I was diagnosed 6/00, 4 cm lump w/ 13 out of 27 positive lymph nodes. I had a lumpectomy, AC/Taxol and radiation. 8/2001 I was diagnosed w/ a bone metastasis, started herceptin and zometa. I stayed on this till May of 2004. So, I have been stage 4 for 3 1/2 years and off of herceptin 5 months. Time will tell, just take one day at a time! By the way I developed another bone met on the herceptin. That was 11/01 and first met became active again 11/03.
    I think most important part of survival is positive attitude, faith, proper diet, water and rest. I attribute my survival to those things more than the drugs. Orignally I was told I'd take the herceptin the rest of my life, but I decided differently. That's why I said time will tell...if I made the right decision!
    God bless.
    hummingbyrd
  • SusanAnne
    SusanAnne Member Posts: 245
    #4
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    Hi Ellen. Were you in the clinical trial for Herceptin? I was and finished my last treatment on July 29th this year. I go back the end of this month for my 3 month check up. My tumor was also 8cm with 1/10 nodes positive (stage IIIa). I didn't do chemo before surgery but I did have my right breast removed (3/03), had AC then taxol with Herceptin and then continued on the Herceptin. Also did radiation and had TRAM flap reconstruction in May. I am always on the lookout for new and upcoming treatments should I have a recurrence. There is a drug in trials now for women who have progression of the cancer after having had herceptin. Not quite sure if the progression has to be while on the herceptin (I guess that would mean we'd have to go back on herceptin again if it met. and see if that takes care of it) or after just having had herceptin in the past. Anyway the drug is Lapatinib if you'd like to research it. Hope that gives you some piece of mind, I know it does for me. Congrats on finishing treatment! Sounds like we went thru things together.

    Take care,
    Susan
  • Ellen263
    Ellen263 Member Posts: 4
    #5
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    SusanAnne said:

    Hi Ellen. Were you in the clinical trial for Herceptin? I was and finished my last treatment on July 29th this year. I go back the end of this month for my 3 month check up. My tumor was also 8cm with 1/10 nodes positive (stage IIIa). I didn't do chemo before surgery but I did have my right breast removed (3/03), had AC then taxol with Herceptin and then continued on the Herceptin. Also did radiation and had TRAM flap reconstruction in May. I am always on the lookout for new and upcoming treatments should I have a recurrence. There is a drug in trials now for women who have progression of the cancer after having had herceptin. Not quite sure if the progression has to be while on the herceptin (I guess that would mean we'd have to go back on herceptin again if it met. and see if that takes care of it) or after just having had herceptin in the past. Anyway the drug is Lapatinib if you'd like to research it. Hope that gives you some piece of mind, I know it does for me. Congrats on finishing treatment! Sounds like we went thru things together.

    Take care,
    Susan

    Hi Susan, Hummingbyrd and Linda! Thank you so much for responding to my email...you each gave me comfort and direction (I am going to research the drug Lapatinib...never heard of it before). Because I began treatment prior to surgey, I was not eligible for the clinical trial. Fortuantely, my oncologist arranged it so I could be treated with the protocol anyway. Susan, it does appear as though we began our unexpected journey about the same time. I, too, had radiation and a TRAM and recently had the nipple reconstruction as well. I hope to get my port out in about a month. What a day of celebration that will be! Hummingbyrd and Linda, you're both so right about attitude and faith. One of my favorite quotes that has carried me through this ordeal states, "Faith is the bird that feels the light and sings while the dawn is still dark.". It's been dark many, many times on this path...but I've always known the "light" of faith. Seems to me it's that same 'light that has led me to find this group. What a joy! Thanks again to all of you for "being there" for me. Blessings, Ellen
  • MrTangerineMan
    MrTangerineMan Member Posts: 4
    #6
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    Hi Ladies,

    Can I just begin by saying how amazing I think you all (including my partner) are without exception. I had come on to this message board to read information about possible alternative therapies for my partner to try, but having read this thread felt duty bound to reply.
    My partners history over the last three years is AC chemo x 6, Mastectomy, Radiotherapy, Stage4 Diagnosis (lungs and skin), Taxotir chemo x 5(nasty), Herceptin (unsuccesful), Xeloda (capecitebine) chemo x 6 and most recently and relevantly the trial for GW572016 (lapatinib) for almost the last six months. The results of this trial are mixed, but I thought you may be interested. The extensive skin mets which my partner had (most of her back, side and lymphoedema afflicted arm) practically disappeared during the first 8-12 weeks of the trial, which REALLY excited both ourselves, our clinical trial specialist, our doctor and indeed Glaxowellcome (she was a hot topic at their summer conferences). However, the effect on the primary tumour on her lung is less conclusive. The tumour was 19cm at the start of the trial. Subsequent scans showed that it's growth had been arrested, but now after six months things are not looking so good. The latest scan shows that although growth is not clinically confirmed (>25% growth is needed for this) it is bordering on this amount of growth and it is looking likely that Glaxo will pull the plug on the trial next week. (If anyone is interested I will post a follow up.) I do not wish to dishearten anyone with this, but the one thing we have always sought is hope, but not false hope. My impression is that the results with my partner suggest that GW572016 could be very successful with some breast cancer patients. As we know, everyone's cancer is different, and just because it has not been universally successful with my partner shoud not dishearten others. We always knew that with it being a trial there was no guarantee of success, but if it can benefit others in the future, then all well and good. I hope and pray that others who read his may also get to try GW572016 and be rid of their cancer for good.
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #7
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    MrTangerineMan said:

    Hi Ladies,

    Can I just begin by saying how amazing I think you all (including my partner) are without exception. I had come on to this message board to read information about possible alternative therapies for my partner to try, but having read this thread felt duty bound to reply.
    My partners history over the last three years is AC chemo x 6, Mastectomy, Radiotherapy, Stage4 Diagnosis (lungs and skin), Taxotir chemo x 5(nasty), Herceptin (unsuccesful), Xeloda (capecitebine) chemo x 6 and most recently and relevantly the trial for GW572016 (lapatinib) for almost the last six months. The results of this trial are mixed, but I thought you may be interested. The extensive skin mets which my partner had (most of her back, side and lymphoedema afflicted arm) practically disappeared during the first 8-12 weeks of the trial, which REALLY excited both ourselves, our clinical trial specialist, our doctor and indeed Glaxowellcome (she was a hot topic at their summer conferences). However, the effect on the primary tumour on her lung is less conclusive. The tumour was 19cm at the start of the trial. Subsequent scans showed that it's growth had been arrested, but now after six months things are not looking so good. The latest scan shows that although growth is not clinically confirmed (>25% growth is needed for this) it is bordering on this amount of growth and it is looking likely that Glaxo will pull the plug on the trial next week. (If anyone is interested I will post a follow up.) I do not wish to dishearten anyone with this, but the one thing we have always sought is hope, but not false hope. My impression is that the results with my partner suggest that GW572016 could be very successful with some breast cancer patients. As we know, everyone's cancer is different, and just because it has not been universally successful with my partner shoud not dishearten others. We always knew that with it being a trial there was no guarantee of success, but if it can benefit others in the future, then all well and good. I hope and pray that others who read his may also get to try GW572016 and be rid of their cancer for good.

    Thank you so much for your posting, and yes I would love for you to keep us updated. I have a website www.urcctc.com feel free to visit and post a note on the message board for prayer for your partner. It is certainly one aspect of treatment one does not want to ignore.
    Best wishes to you and your friend. I pray the cancer becomes responsive to the lapatinib again and that it destroys all tumor cells in her body.
    God bless.
    hummingbyrd
  • SusanAnne
    SusanAnne Member Posts: 245
    #8
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    MrTangerineMan said:

    Hi Ladies,

    Can I just begin by saying how amazing I think you all (including my partner) are without exception. I had come on to this message board to read information about possible alternative therapies for my partner to try, but having read this thread felt duty bound to reply.
    My partners history over the last three years is AC chemo x 6, Mastectomy, Radiotherapy, Stage4 Diagnosis (lungs and skin), Taxotir chemo x 5(nasty), Herceptin (unsuccesful), Xeloda (capecitebine) chemo x 6 and most recently and relevantly the trial for GW572016 (lapatinib) for almost the last six months. The results of this trial are mixed, but I thought you may be interested. The extensive skin mets which my partner had (most of her back, side and lymphoedema afflicted arm) practically disappeared during the first 8-12 weeks of the trial, which REALLY excited both ourselves, our clinical trial specialist, our doctor and indeed Glaxowellcome (she was a hot topic at their summer conferences). However, the effect on the primary tumour on her lung is less conclusive. The tumour was 19cm at the start of the trial. Subsequent scans showed that it's growth had been arrested, but now after six months things are not looking so good. The latest scan shows that although growth is not clinically confirmed (>25% growth is needed for this) it is bordering on this amount of growth and it is looking likely that Glaxo will pull the plug on the trial next week. (If anyone is interested I will post a follow up.) I do not wish to dishearten anyone with this, but the one thing we have always sought is hope, but not false hope. My impression is that the results with my partner suggest that GW572016 could be very successful with some breast cancer patients. As we know, everyone's cancer is different, and just because it has not been universally successful with my partner shoud not dishearten others. We always knew that with it being a trial there was no guarantee of success, but if it can benefit others in the future, then all well and good. I hope and pray that others who read his may also get to try GW572016 and be rid of their cancer for good.

    Hi there. I remember when you responded to my post a while back regarding Lapatinib. I'm sorry that things aren't going as well as you'd have hoped. The fact that Glaxo is considering ending the trial must mean that their overall results were less than promising. I do appreciate your response and information. You are right, there is no sense in holding onto false hope. Please keep us posted on what happens in the future. We all send your partner our prayers and hope that a new treatment, whether it be alternative or traditional, proves to be useful for her. Best wishes,
    Susan

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