The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

radiation now for pain or hold out for trial?

Forums General Melanoma Community radiation now for pain or hold out for trial?

  • Post
    Amy Busby
    Participant

    I have no idea what I should go after for my next line of treatment.  I don't seem to be having a response to the ipi.  I am still on the trial for the 10 weeks off period, but my onc and I agreed that I should be looking at alternatives since I'll probably be booted at that time for greater then 25% progression.  I am in alot of pain from my leg mets.  Going up and up on the meds.  Dennis thinks I really need to address that first since I am in so much pain.  But if I do radiation then it pushes me at least 4 weeks out to do any trials.  The one I

    I have no idea what I should go after for my next line of treatment.  I don't seem to be having a response to the ipi.  I am still on the trial for the 10 weeks off period, but my onc and I agreed that I should be looking at alternatives since I'll probably be booted at that time for greater then 25% progression.  I am in alot of pain from my leg mets.  Going up and up on the meds.  Dennis thinks I really need to address that first since I am in so much pain.  But if I do radiation then it pushes me at least 4 weeks out to do any trials.  The one I'm looking at most strongly is the E7080 drug with temador, but there's only one or two spots left.  I have an appt lined up for next week to start all the papers / tests / etc.

    Or I could start radiation on the left leg and possibly have hope of walking again like a normal person (wheelchair and walker bound now).

    Loading spinner
Viewing 11 reply threads
  • Replies
      sharmon
      Participant

      Hey Amy B it is Brent, I know we have talked about IPI, my 7 months kept me stable and thats about it.  At the end we had some growth, enough to kick me off, but IPI can take time to show any positive response.  You know what followed, the bio-chem one round and then the MEK.  Shortly after the MEK came th 30% reduction, but was it the MEK, the IPI, or the combo of IPI and bio, who knows.  We are anxcious like you to here what targeted therapy has for you at MDA. 

      Hang tough, you know how much pain you can tolerate.  I would worry for the 4 weeks it I had to wait for a trial…..  all our love……………….. Brent and Sharon

      Loading spinner
      sharmon
      Participant

      Hey Amy B it is Brent, I know we have talked about IPI, my 7 months kept me stable and thats about it.  At the end we had some growth, enough to kick me off, but IPI can take time to show any positive response.  You know what followed, the bio-chem one round and then the MEK.  Shortly after the MEK came th 30% reduction, but was it the MEK, the IPI, or the combo of IPI and bio, who knows.  We are anxcious like you to here what targeted therapy has for you at MDA. 

      Hang tough, you know how much pain you can tolerate.  I would worry for the 4 weeks it I had to wait for a trial…..  all our love……………….. Brent and Sharon

      Loading spinner
      jag
      Participant

      Amy,

      A good way of looking at things is to consider how well you would fair on a treatment if you were in a ton of pain.  Mental strength is 1/2 the battle, you have been going head to head with melanoma for quite a while now, Maybe a break with some pain relief will get you ready for your next battle.  On the other hand, ask your doctor how painful radiation would be, and if he can lie on your trial application to get you in there with radiation.

      Best

      I will say a prayer for you.

      John

      Loading spinner
      jag
      Participant

      Amy,

      A good way of looking at things is to consider how well you would fair on a treatment if you were in a ton of pain.  Mental strength is 1/2 the battle, you have been going head to head with melanoma for quite a while now, Maybe a break with some pain relief will get you ready for your next battle.  On the other hand, ask your doctor how painful radiation would be, and if he can lie on your trial application to get you in there with radiation.

      Best

      I will say a prayer for you.

      John

      Loading spinner
      Sharyn
      Participant

      Amy, my darling, you sure have been through a lot lately! I'm on ipi 12 wk break as well, but my lesions are continuing to shrink. It's possible you could be a late responder, but would you really want to take the chance if you're not?  That's a tough one!  As for the radiation, do you really believe it would prolong your ability to walk? I know it will help the pain, so in that regard, it's worth doing. On the other hand, if you can stand the pain just long enough to see if the E7080 + TMZ provides any relief, then maybe it's worth holding out for that, and if it gets too bad or if it's not working, you'll still have the RT to fall back on. It's so hard knowing the best thing to do!  I will keep you in my prayers, and I wish you a blanket of peace so you can calmly and rationally deliberate these choices.

      Hugs

      Sharyn, Stage IV

      Loading spinner
      Sharyn
      Participant

      Amy, my darling, you sure have been through a lot lately! I'm on ipi 12 wk break as well, but my lesions are continuing to shrink. It's possible you could be a late responder, but would you really want to take the chance if you're not?  That's a tough one!  As for the radiation, do you really believe it would prolong your ability to walk? I know it will help the pain, so in that regard, it's worth doing. On the other hand, if you can stand the pain just long enough to see if the E7080 + TMZ provides any relief, then maybe it's worth holding out for that, and if it gets too bad or if it's not working, you'll still have the RT to fall back on. It's so hard knowing the best thing to do!  I will keep you in my prayers, and I wish you a blanket of peace so you can calmly and rationally deliberate these choices.

      Hugs

      Sharyn, Stage IV

      Loading spinner
      NancyD
      Participant

      This sounds so much like what I expect to hear from you!  Always looking forward with a positive attitude.  I'm praying for you and wisdom as you proceed.

      Nancy D

      Stage 3B

      Loading spinner
      NancyD
      Participant

      This sounds so much like what I expect to hear from you!  Always looking forward with a positive attitude.  I'm praying for you and wisdom as you proceed.

      Nancy D

      Stage 3B

      Loading spinner
      Lori C
      Participant

      Ever since I read this I've been thinking about it. 

      I assume the fentanyl patches are not really doing the job with the pain and there are not other options for treating the breakthrough pain? 

      It is such a "Sophie's Choice" type issue.  If the pain is not completely wiping out your quality if life, I think I'd go with the trial sooner rather than risk letting the disease take hold elsewhere….but no one can judge another person's pain.  

      It drives me nuts that they don't have better pain control….you should not have to choice between horrible pain and near unconsciousness, let alone delaying a trial that is so potentially important.

      Loading spinner
      Lori C
      Participant

      Ever since I read this I've been thinking about it. 

      I assume the fentanyl patches are not really doing the job with the pain and there are not other options for treating the breakthrough pain? 

      It is such a "Sophie's Choice" type issue.  If the pain is not completely wiping out your quality if life, I think I'd go with the trial sooner rather than risk letting the disease take hold elsewhere….but no one can judge another person's pain.  

      It drives me nuts that they don't have better pain control….you should not have to choice between horrible pain and near unconsciousness, let alone delaying a trial that is so potentially important.

      Loading spinner
      Rocklove
      Participant

      Gosh Amy I wish I understood how the radiation would help. If it is to do with melanoma tumors I don't think I would  consider it. I had 6 weeks radiation on my right thigh area to clean up some surgery spots they could not get all the tumors out. Supposedily they were all microscopic.

      I was stage 3 then last October. My body was so drained going through the treatment I believe it helped the tumors kick in and grow faster. Immediately after… tumors in the pelvic area and the liver which made me stage IV.

      I would be afraid of radiation. I would jump to the next treatment especially if there are not many openings.

      But you certainly know more than I do about the beast.

      Always Praying For You And Family..

      Rocky (Stage IV Liver Mets)

      Loading spinner
      Rocklove
      Participant

      Gosh Amy I wish I understood how the radiation would help. If it is to do with melanoma tumors I don't think I would  consider it. I had 6 weeks radiation on my right thigh area to clean up some surgery spots they could not get all the tumors out. Supposedily they were all microscopic.

      I was stage 3 then last October. My body was so drained going through the treatment I believe it helped the tumors kick in and grow faster. Immediately after… tumors in the pelvic area and the liver which made me stage IV.

      I would be afraid of radiation. I would jump to the next treatment especially if there are not many openings.

      But you certainly know more than I do about the beast.

      Always Praying For You And Family..

      Rocky (Stage IV Liver Mets)

      Loading spinner
Viewing 11 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.