Need info on use of Herceptin with Stage IV EC, please.

38sallyb
38sallyb Member Posts: 87
edited March 2014 in Esophageal Cancer #1
Jim had an appointment today with an Oncologist here in Colorado. As he was reading through lab reports from MDA, he wondered if anyone at MDA talked with us about Herceptin. We said we thought the test showed negative. He said the slide with the test showed negative, but in one of the lab reports we didn't get, they also did a DNA test for the gene and it was positive. He said that the DNA test was the one we should be using, as it is far more reliable. No one ever mentioned it to us. Thank goodness he found it.
So, I want to know who has used it for Stage IVb EC. Thanks. He says he has used it for mestastic breast cancer and that there are studies in using it for other cancers. I know there are some on this board.
At least he believes there are some other treatments to look at. PET/CT scheduled for Friday. Appreciate prayers since it's very scary at this point. Jim continues to have neuropathy, which he said might be permanent at this point. Acupuncture helps, but we are 60 miles from anyone who does it, and it should be done daily. Otherwise, he's still fishing almost every day. That means so much to him, to be able to be out in these beautiful mountains.
Sally

Comments

  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #2
    Herceptin
    Sally,
    Happy your oncologist is on the ball! We have never heard of different tests to determine if the tumors are HER-2 positive. Charlie has been on Herceptin since Oct. He will have his 12th Herceptin treatment tomorrow. He goes every 3 weeks and it takes about 90 minutes to be infused. No side effects at all.....both he and his oncologist believe it is what helped keep him in remission along with his Xeloda (oral 5-FU.) Unfortunately Charlie's PET scan that he had in May has shown some activity so there is a chance the cancer is reoccuring....but if that is the case we believe it would have been sooner without the Herceptin. The cancer is just getting too smart for the Xeloda. We will repeat the PET soon and if it shows more activity, we will still continue with the Herceptin and the chemo will be changed....probably to Taxotere and Cisplatin. Charlie has been having some symptoms too......trouble getting food down and stomach pain. If those symptoms get worse, we won't wait for the PET....we will go right to the new chemo.
    The biggest issue we had was our insurance company would not pay for the Herceptin. It has not been approved for gastric cancers. (However, our oncologist just told us that the FDA is looking at approving it now for gastric cancers...but I have a feeling it might be a slow process.) So our dr got the drug company to provide him with the Hercepin....thankfully because we would never have been able to afford it. I think it would have cost over $7,000 for each treatment.
    I hope this info helps.....I will continue to pray for you and Jim and everyone else on this site.
    Stay strong,
    Jane
  • 38sallyb
    38sallyb Member Posts: 87
    #3
    JaneE2366 said:

    Herceptin
    Sally,
    Happy your oncologist is on the ball! We have never heard of different tests to determine if the tumors are HER-2 positive. Charlie has been on Herceptin since Oct. He will have his 12th Herceptin treatment tomorrow. He goes every 3 weeks and it takes about 90 minutes to be infused. No side effects at all.....both he and his oncologist believe it is what helped keep him in remission along with his Xeloda (oral 5-FU.) Unfortunately Charlie's PET scan that he had in May has shown some activity so there is a chance the cancer is reoccuring....but if that is the case we believe it would have been sooner without the Herceptin. The cancer is just getting too smart for the Xeloda. We will repeat the PET soon and if it shows more activity, we will still continue with the Herceptin and the chemo will be changed....probably to Taxotere and Cisplatin. Charlie has been having some symptoms too......trouble getting food down and stomach pain. If those symptoms get worse, we won't wait for the PET....we will go right to the new chemo.
    The biggest issue we had was our insurance company would not pay for the Herceptin. It has not been approved for gastric cancers. (However, our oncologist just told us that the FDA is looking at approving it now for gastric cancers...but I have a feeling it might be a slow process.) So our dr got the drug company to provide him with the Hercepin....thankfully because we would never have been able to afford it. I think it would have cost over $7,000 for each treatment.
    I hope this info helps.....I will continue to pray for you and Jim and everyone else on this site.
    Stay strong,
    Jane

    Herceptin

    Thanks for the info, Jane. Sorry to hear Charlie is having problems. Jim is getting along pretty well, has some periphal issues, needs hernia surgery, and having arthritis pain in his back. He is on Medicare, so who knows if they will pay. There really is no arguing with them, I hear, so we'll find out if the PET/CT scan shows it might help. We are just happy that the
    Oncologist here has some new ideas. It was feeling pretty hopeless when we left MDA.
    Sally
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #4
    38sallyb said:

    Herceptin

    Thanks for the info, Jane. Sorry to hear Charlie is having problems. Jim is getting along pretty well, has some periphal issues, needs hernia surgery, and having arthritis pain in his back. He is on Medicare, so who knows if they will pay. There really is no arguing with them, I hear, so we'll find out if the PET/CT scan shows it might help. We are just happy that the
    Oncologist here has some new ideas. It was feeling pretty hopeless when we left MDA.
    Sally

    Hi Sally and Jim
    Thanks for
    Hi Sally and Jim
    Thanks for your recent update. Sorry you had a bad experience at MDA. I know that if you contact the company that makes the hereceptin, they just might be able to give you the drug.
    I know I had to look into this when my dad was on Xeloda, and his medicare and supplemental insurance would no longer pay for it. I was in the process of doing this when my dad passed away, so I never found out if we could get it for free. Contact the pharmacy and get the name of the manufactuer of herceptin, and then contact them. Best of luck to you both. Keep on fishing Jim! Prayers will continue.
    Tina
  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
    #5
    Not happy to hear this
    Guess I'll have our doc double check our reports then huh? We wanted to get it if we could...but our biopsy came back negative. I am certainly going to double check though. We were told there are very few side effects --nothing in comparison to chemo, by our doc here in NV.

Discussion Boards