Husband to start clinical trial

KathyJoel
KathyJoel Member Posts: 2
in Esophageal Cancer #1
Hi everyone,
I am sort of new to this site although I read everything I could find in 2009 when my husband was first diagnosed. I have been using the site for a little research as well, but this is my first post.
My husband was diagnosed with stage 3 in 2009, had radiation and chemo and then the THE surgery by Dr. Orringer at U of M. He did remarkably well, except for the food issues. In November of 2012 he had a horse voice and we made several trips to the doctors office and U o M where he was diagnosed with a recurrence in a lymph node on his vocal cord nerve. After radiation and chemo he was " clean" but they wanted him to finish 3 more rounds of chemo. We were just told he now has suspicious spots, one on his lung and one on his stomach near his aorta. We were told by his local oncologist that they could do nothing further for him. We have an appt this Thursday at Karmanos in Detroit to see about a clinical trial.
Does anyone know about these trials? Is it worth it? My husband feels great and is finally recovering from his chemo. He is a fighter and rarely missed work through any of his treatments. He is only 55 and I would like him to not have to through more chemo. He has gone through so much in addition to his loss of voice.
Any advice??

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    If it were me it would depend on the "trial" content

    Kathy,

    I know this is a difficult decision. The choice between quality and quantity of life is never clear and easy. If it were me; it would depend on the content of the medical trial available. We know there are going to be side effects, but the real question I would want to answer would be, “is this a targeted therapy” or is this more “kill every rapidly dividing cell in sight and hope we get the cancer”.

    Traditional chemotherapy is not very selective. Most chemotherapy drugs are designed to disrupt the replication process of rapidly dividing cells. Hopefully this gets the cancer cells but unfortunately at the same time it kills rapidly dividing cells in the stomach, intestines, mouth, etc. As a result, we find the effects we all know too well.

    My questions about the clinical trial would be:

    1. Is this a targeted therapy designed to seek out specific RNA/DNA combinations found in cancer cells?
    2. Is this a Phase 1 or Phase 2 trial?
    3. Is there any chance of getting a placebo rather than the actual drug being tested?
    4. Has the “dosage” of this drug been established in a previous trial?
    5. What are the indicators that will be used to establish treatment effectiveness as the trial proceeds?
    6. What have the observed side effects of this treatment regimen been?

     I think having this information would help me decide if the degradation in quality of life would be worth the potential benefits. If the indicators of effectiveness were not moving in the right direction after a few cycles of the trial medication then I would opt out of the trial.

    Just one person’s perspective….

    Best Regards,

    Paul Adams

    Grand Blanc, Michigan
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

  • KathyJoel
    KathyJoel Member Posts: 2
    #3
    paul61 said:

    If it were me it would depend on the "trial" content

    Kathy,

    I know this is a difficult decision. The choice between quality and quantity of life is never clear and easy. If it were me; it would depend on the content of the medical trial available. We know there are going to be side effects, but the real question I would want to answer would be, “is this a targeted therapy” or is this more “kill every rapidly dividing cell in sight and hope we get the cancer”.

    Traditional chemotherapy is not very selective. Most chemotherapy drugs are designed to disrupt the replication process of rapidly dividing cells. Hopefully this gets the cancer cells but unfortunately at the same time it kills rapidly dividing cells in the stomach, intestines, mouth, etc. As a result, we find the effects we all know too well.

    My questions about the clinical trial would be:

    1. Is this a targeted therapy designed to seek out specific RNA/DNA combinations found in cancer cells?
    2. Is this a Phase 1 or Phase 2 trial?
    3. Is there any chance of getting a placebo rather than the actual drug being tested?
    4. Has the “dosage” of this drug been established in a previous trial?
    5. What are the indicators that will be used to establish treatment effectiveness as the trial proceeds?
    6. What have the observed side effects of this treatment regimen been?

     I think having this information would help me decide if the degradation in quality of life would be worth the potential benefits. If the indicators of effectiveness were not moving in the right direction after a few cycles of the trial medication then I would opt out of the trial.

    Just one person’s perspective….

    Best Regards,

    Paul Adams

    Grand Blanc, Michigan
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

    Thank you Paul, I know it is a phase one trial. Some of your questions are similar to the ones I was going to ask but others I had not thought about. We have a dear friend coming with us who is a MD. He is doing a lot of research for us too. Thank you so much for the input, neighbor. ( We live in Fenton) I will keep you posted. Kathy
  • goty2001
    goty2001 Member Posts: 71
    #4
    KathyJoel said:

    Thank you Paul, I know it is a phase one trial. Some of your questions are similar to the ones I was going to ask but others I had not thought about. We have a dear friend coming with us who is a MD. He is doing a lot of research for us too. Thank you so much for the input, neighbor. ( We live in Fenton) I will keep you posted. Kathy

    trials

    It's likely they're trialling something better than crude chemotherapy - I'd definitely ask those questions and keep a positive & open mind in the meantime...

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #5
    Husband

    Hi, We live in Michigan as well. Dr Orringer performed my husbands surgery in March of this year. Larry had his chemoradiation locally at Karmanos at Huron Valley Hospital. I was wondering who was your oncologist? Karmanos downtown is wonderful as well. Years ago they gave my mother many years of life with clinical trials. Although she had breast cancer, the research and determination of the physicians is remarkable. Please keep us updated.

    Laura

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