Anyone with tips/responses to Herceptin tx

Dad'sfight
Dad'sfight Member Posts: 155

Ok, just found out today that Dad tested positive for this. When they did the biopsy of Esp. results were that he wasn't. So I pushed for it to be done again on the hip area. It's strange because I feel like Dad has been given another option that could be a game changer for survival,  if he responds well to Herceptin, then on the other hand I know it means that its even more aggressive than others. 

Comments

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Herceptin

    I don't know how this'll impact your situation, but here's what's happened for me.  I was diagnosed with a metastatic recurrence in my lung and given a prognosis of a few months.  I was HER2+, so Herceptin was part of my treatment, along w/Folfox.  I finished 12 rounds of the Folfox/Herceptin last May, and have continued on the Herceptin every week (20 months worth now).  Just this week, I got my latest scan results back and I'm as clean as you get.  My Doc & I aren't able to 100% identify exactly why I've been having such a good response, but neither of us are interested in fiddling with what's working, so we're continuing the Herceptin indefinitely.  You're correct that being HER2+ means you have a more aggressive cancer, but the Herceptin is a quite effective treatment.  Compared to other cancer treatments (at least of the several I've gotten to try) Herceptin is pretty mild.  The most serious side effect is cardiac problems, which is obviously pretty undesirable, but the day to day side effects are minimal.  I hope it works out as well in your case as it has so far in mine.--Ed

  • LauraandLarry
    LauraandLarry Member Posts: 184
    Tina

    Crazy that it didnt test positive before. I hope this helps you to find new answers. Praying for you everyday. And JEFF, lol

  • dfd24
    dfd24 Member Posts: 91

    Herceptin

    I don't know how this'll impact your situation, but here's what's happened for me.  I was diagnosed with a metastatic recurrence in my lung and given a prognosis of a few months.  I was HER2+, so Herceptin was part of my treatment, along w/Folfox.  I finished 12 rounds of the Folfox/Herceptin last May, and have continued on the Herceptin every week (20 months worth now).  Just this week, I got my latest scan results back and I'm as clean as you get.  My Doc & I aren't able to 100% identify exactly why I've been having such a good response, but neither of us are interested in fiddling with what's working, so we're continuing the Herceptin indefinitely.  You're correct that being HER2+ means you have a more aggressive cancer, but the Herceptin is a quite effective treatment.  Compared to other cancer treatments (at least of the several I've gotten to try) Herceptin is pretty mild.  The most serious side effect is cardiac problems, which is obviously pretty undesirable, but the day to day side effects are minimal.  I hope it works out as well in your case as it has so far in mine.--Ed

    her2 herceptin

    hello ed,

    i d be interested in staying in touch  . my husband has a treatment similar to yours but just started because they forgot to test him when he had his recurrence last year. he will have his first pet scan after starting herceptin in august of this year. i am in paris france but can telephone you for free if you give me a number

    hope to heqr from you. if you don t want to give your number an email address is fine.  i dont check this site very often . i use "smart patients more often.

     

    wish everybody all the best,daniele

    health profile for my husband
    He was diagnosed MARCH 2010 adenocarcinoma T3N0M0
    Had chemoradiation, cisplatin - 5 FU, for three months then Ivor Lewis July 27, 2010 clean margins T3N0M0
    Septic shock after the operation. "intensive care psychosis" when they woke him up and took him off the ventilator that lasted about ten days.
    Recurrence march 2012 nodule on pleural membrane and lymph nodes behind thyroid
    July 2 2012 started Six cycles of cisplatin 5 FU
    almost complete response on the pet scan in November 2012
    maintenance Xeloda started November 2012
    While on Xeloda ,March 2013 progression of pleural nodule plus another nodule on lung and lymph nodes lit up again.
    Tested for HER2 APRIL 2013 and he was HER2+++.
    Now treatment with Folfox plus Herceptin.
  • dfd24
    dfd24 Member Posts: 91
    her 2 herceptin

    i just wanted to add that my hsbqnd s oncologist was very excited about the fact that he tested her2 positive and could get herceptin in spite of the fact that it was given a year late becase they didn t think of testing him when he had his recurrence.

    daniele

  • callerid
    callerid Member Posts: 96
    dfd24 said:

    her 2 herceptin

    i just wanted to add that my hsbqnd s oncologist was very excited about the fact that he tested her2 positive and could get herceptin in spite of the fact that it was given a year late becase they didn t think of testing him when he had his recurrence.

    daniele

    dfd24

    Do you go to a major cancer facility? Herceptin controls the growth of cancer cells for those who are positive for the protein HER2. My husband (Stage IV) was told it is not a cure but the combination of Herceptin along with chemo is more effective in the fight.

  • dfd24
    dfd24 Member Posts: 91
    callerid said:

    dfd24

    Do you go to a major cancer facility? Herceptin controls the growth of cancer cells for those who are positive for the protein HER2. My husband (Stage IV) was told it is not a cure but the combination of Herceptin along with chemo is more effective in the fight.

    her2 herceptin

    my husband was treated at two hospitals here in paris . my husband's operation (2010)

    was before testing for her2 for gastric and esophageal junction cancer was routine ; that's the

    reason his team made a mistake and did not think of testing him when he had his recurrence.

    it is only when i asked about it again this year that they contacted pathology and realized he had not been

    tested. his oncologist said there is not much expeience yet with the results of herceptin with esophageal

    cancer as opposed to breast cancer where it has been used for about ten years and it has been very successful.

    daniele

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    dfd24 said:

    her2 herceptin

    hello ed,

    i d be interested in staying in touch  . my husband has a treatment similar to yours but just started because they forgot to test him when he had his recurrence last year. he will have his first pet scan after starting herceptin in august of this year. i am in paris france but can telephone you for free if you give me a number

    hope to heqr from you. if you don t want to give your number an email address is fine.  i dont check this site very often . i use "smart patients more often.

     

    wish everybody all the best,daniele

    health profile for my husband
    He was diagnosed MARCH 2010 adenocarcinoma T3N0M0
    Had chemoradiation, cisplatin - 5 FU, for three months then Ivor Lewis July 27, 2010 clean margins T3N0M0
    Septic shock after the operation. "intensive care psychosis" when they woke him up and took him off the ventilator that lasted about ten days.
    Recurrence march 2012 nodule on pleural membrane and lymph nodes behind thyroid
    July 2 2012 started Six cycles of cisplatin 5 FU
    almost complete response on the pet scan in November 2012
    maintenance Xeloda started November 2012
    While on Xeloda ,March 2013 progression of pleural nodule plus another nodule on lung and lymph nodes lit up again.
    Tested for HER2 APRIL 2013 and he was HER2+++.
    Now treatment with Folfox plus Herceptin.
    Herceptin

    Daniele,

     

    I'll be out of town until Saturday, but I'll check email Saturday night.

     

    It's edkrohn@hotmail.com

     

    Ed