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1st time writing – any thoughts

Forums General Melanoma Community 1st time writing – any thoughts

  • Post
    Amy K
    Participant

    Hi Everyone, 

    First of all, let me say thank you to you all for the posts and comments on this board!  It has been a wonderful support to me as we've dealt with this awful disease.  It is nice to hear from others going through similar things.  Sorry we all have to meet on this page though.  :)

    Hi Everyone, 

    First of all, let me say thank you to you all for the posts and comments on this board!  It has been a wonderful support to me as we've dealt with this awful disease.  It is nice to hear from others going through similar things.  Sorry we all have to meet on this page though.  :)

    My husband was stage 3 in 2002 (we found this out a couple weeks after we got engaged), did interferon high dose 6 weeks, low dose 11 months.  We did great for 8 years. We have 3 young, wonderful children. 3 months after our third was born, BOOM this cancer came back and we're now at stage 4.  We were shocked it came back 8 years later.  (We had thought we had made it past 5 years, and thought  there was a low chance it would come back, and we weren't in that low percentile.)  It came back last August and we entered the Roche BRAF inhibitor  BRIM trial.  We were disappointed we got  the chemo instead of the pill, but after 6 months of dacarbazine, the tumors are gone (all 35)!  We are now so happy that we are NED.   

    There's one problem my husband is still dealing with.  I wondered if anyone had anything similar or knew of anyone like this.  So, in July of last year he noticed his lymph nodes enlgarged and his eye was bothering him.  The lymph nodes were melanoma and we have done lots of scans of his eye and no cancer is shown in the eye.  However, he's had 2 eye surgeries to fix the glaucoma and then recently to reattach the retina.  His eye is not doing well.  We have heard of auto-immune response to chemo or IL2, but his eye started going bad before we were on any treatments.  Just recently they tested the vitreous (the fluid) of the eye for cancer and came back negative!  Great news.  But, we're still tyring to figure out what is wrong with the eye.  We've gone to several doctors and no one knows the cause and his eye is causing him lots of pain and annonyance.   A couple doctors are suggesting enucleating (removing) the eye.  We're trying to wait and not do that right now.  Any thoughts?

    Another question I had.  So, we are so happy the cancer is gone.  Dacarbazine was awful and my tough husband endured that for 6 months even though he kept saying I don't want to do that again after/during each cycle.  We are so glad to be done with chemo.  We know chemo isn't a cure for melanoma.  The doctors expect it to come back but it's just a matter of when.  The doctor said it could be 2 months, and he thought really hard of a case where it didn't come back for 18 months.  We are thrilled chemo has worked so well for us and wondering if any of you have had experiences to how long it can keep the tumors from coming back.  

    We are still on the BRIM trial and we can get the BRAF inhibitor drug if (when) it comes back.  We also wonder if IPI would be a better choice.  Although if we did IPI next we couldn't get back on the trial for BRAF inhibitor.  So, I guess BRAF should be first while we can get it and then do IPI.  Let me know if that sounds right to all of you who have dealt with IPI or the Roche drug more than us.  

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  • Replies
      Carmon in NM
      Participant

      Hi Amy – I am the patient and my husband is the caregiver. I think in a lot of ways your (and his) job is the hardest and I love the way you refer to the disease and treatment as being both of yours. To me that shows the complete support that you have given your husband and I can tell you that means the world for getting through all of this.

      I made it almost two years NED with no treatment other than surgical before I went from 3b to Stage 4 June 2010 with brain and adrenal mets. I had a craniotomy and gamma knife for the brain tumors and went into a drug trial combining carboplatin, paxitaxil and temodar. Like your husband, every infusion I have thought 'I can't do this again.' but the steady reduction in tumor size has meant that I keep on going. I have one more infusion to go on March 14th then surgery to remove my right adrenal gland and whatever is left of the tumor. Like you and your husband, I am hoping for some lasting time NED if only so I can get away from treatments!

      If I have recurrance, I will have an option of ipi or another drug trial if I test positive for c-kit.

      I have had a great deal of trouble with my eyes and vision starting with one of the brain mets that bled and where it was located affected my left eye pretty profoundly. I don't mean to at all imply that might be the case with your husband because I'm sure that has been checked out! When I started chemo, my vision problems came back and have gotten steadily worse with each infusion.

      I know you said he started having problems before the chemo but I'm wondering if the chemo didn't make it worse? I have trouble focusing and high contrast light situations leave me feeling blind. My eyes always feel dry and irritated and my peripheral vision on the left side is almost completely gone. I also have trouble with my hearing which they tell me is  from the chemo too. It particularly affects me on the phone or watcing television when it sometimes seems like I am listening to a foreign language. I'm only bringing that up to show that the side effects of chemo can do some pretty weird things.

      I'm with you in hoping to hear from others who have had lasting results from chemo. But hey! The statistical life expectancy of someone with metastacized melanoma brain mets is nine months and I've already beat that and there are people on this forum who have beat that by YEARS so we aren't doing too bad!

      My 58th birthday will be April 6th and I intend to have a big lunch gathering all of my friends together who have helped me to get through all of this to celebrate them, my birthday, the end of chemo and that I have beat the odds by yet another year! We have to take our joy and victories where we can get them and to hell with statistics!

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        Amy K
        Participant

        Carmon, 

        Both the patient and the caregiver sure have hard, scary jobs!  That's great your tumors are shrinking so nicely and you have one more infusion!  Sorry you're having eye problems too.  We did have a MRI and PET and no sign of anything in the brain(other than a big brain of course).  Maybe if we still can't figure out what's going on with his eye, we'll have to do an MRI again.  My husband's eye sounds a bit different than yours.  His is caused by lots of pressure in the eye and lots of blood vessels forming.  It got really bad before he even started chemo.  Happy 58th coming up soon!

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        Amy K
        Participant

        Carmon, 

        Both the patient and the caregiver sure have hard, scary jobs!  That's great your tumors are shrinking so nicely and you have one more infusion!  Sorry you're having eye problems too.  We did have a MRI and PET and no sign of anything in the brain(other than a big brain of course).  Maybe if we still can't figure out what's going on with his eye, we'll have to do an MRI again.  My husband's eye sounds a bit different than yours.  His is caused by lots of pressure in the eye and lots of blood vessels forming.  It got really bad before he even started chemo.  Happy 58th coming up soon!

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      Carmon in NM
      Participant

      Hi Amy – I am the patient and my husband is the caregiver. I think in a lot of ways your (and his) job is the hardest and I love the way you refer to the disease and treatment as being both of yours. To me that shows the complete support that you have given your husband and I can tell you that means the world for getting through all of this.

      I made it almost two years NED with no treatment other than surgical before I went from 3b to Stage 4 June 2010 with brain and adrenal mets. I had a craniotomy and gamma knife for the brain tumors and went into a drug trial combining carboplatin, paxitaxil and temodar. Like your husband, every infusion I have thought 'I can't do this again.' but the steady reduction in tumor size has meant that I keep on going. I have one more infusion to go on March 14th then surgery to remove my right adrenal gland and whatever is left of the tumor. Like you and your husband, I am hoping for some lasting time NED if only so I can get away from treatments!

      If I have recurrance, I will have an option of ipi or another drug trial if I test positive for c-kit.

      I have had a great deal of trouble with my eyes and vision starting with one of the brain mets that bled and where it was located affected my left eye pretty profoundly. I don't mean to at all imply that might be the case with your husband because I'm sure that has been checked out! When I started chemo, my vision problems came back and have gotten steadily worse with each infusion.

      I know you said he started having problems before the chemo but I'm wondering if the chemo didn't make it worse? I have trouble focusing and high contrast light situations leave me feeling blind. My eyes always feel dry and irritated and my peripheral vision on the left side is almost completely gone. I also have trouble with my hearing which they tell me is  from the chemo too. It particularly affects me on the phone or watcing television when it sometimes seems like I am listening to a foreign language. I'm only bringing that up to show that the side effects of chemo can do some pretty weird things.

      I'm with you in hoping to hear from others who have had lasting results from chemo. But hey! The statistical life expectancy of someone with metastacized melanoma brain mets is nine months and I've already beat that and there are people on this forum who have beat that by YEARS so we aren't doing too bad!

      My 58th birthday will be April 6th and I intend to have a big lunch gathering all of my friends together who have helped me to get through all of this to celebrate them, my birthday, the end of chemo and that I have beat the odds by yet another year! We have to take our joy and victories where we can get them and to hell with statistics!

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      Tim–MRF
      Guest

      I am sorry you and your family are going through this.  I can't offer any insight into the eye issue (though I can ask around and will let you know if I hear any suggestions).

      Regarding the chances of another recurrence, the truth is that everyone is different.  Not many people respond well to dicarbazine, but your husband did.  Some small percent of people are diagnosed Stage IV and just never progress.  They live for years with not more problems, and no-one knows why.

      The choice between ipi and BRAF is tough, and really is a personal decision.  This is also a changing landscape.  In all likelihood, "ipi" will be approved within the next three weeks, and that means many of the restrictions on use of the drug will be lifted.  The Roche BRAF drug will likely be approved by late fall, if not much earlier.  Again, that will mean it will be much more available.  If you aren't accessing these drugs through a trial, the issue becomes more clear. 

      It is very likely that in the not too distant future there will be a major trial studying the use of ipi and BRAF in combination.  If that happens, you won't have to make a decision.  This is what I mean by a changing landscape.  If and when you need to make this choice things will have changed.

      TIm–MRF

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        Amy K
        Participant

        Thanks, those are good points about the "changing landscape" in the melanoma field.  That's why I'm grateful for this site to keep up to date about the new changes that are happening. 

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        Amy K
        Participant

        Thanks, those are good points about the "changing landscape" in the melanoma field.  That's why I'm grateful for this site to keep up to date about the new changes that are happening. 

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      Tim–MRF
      Guest

      I am sorry you and your family are going through this.  I can't offer any insight into the eye issue (though I can ask around and will let you know if I hear any suggestions).

      Regarding the chances of another recurrence, the truth is that everyone is different.  Not many people respond well to dicarbazine, but your husband did.  Some small percent of people are diagnosed Stage IV and just never progress.  They live for years with not more problems, and no-one knows why.

      The choice between ipi and BRAF is tough, and really is a personal decision.  This is also a changing landscape.  In all likelihood, "ipi" will be approved within the next three weeks, and that means many of the restrictions on use of the drug will be lifted.  The Roche BRAF drug will likely be approved by late fall, if not much earlier.  Again, that will mean it will be much more available.  If you aren't accessing these drugs through a trial, the issue becomes more clear. 

      It is very likely that in the not too distant future there will be a major trial studying the use of ipi and BRAF in combination.  If that happens, you won't have to make a decision.  This is what I mean by a changing landscape.  If and when you need to make this choice things will have changed.

      TIm–MRF

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      Erica A
      Participant

      My husband was stage IV, did bio-chemo which included dacarbazine and has been cancer-free for almost 6 years now.  So you can have a durable remission from chemo!

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        Amy K
        Participant

        Wow, thank you for sharing that!!   I love hearing those stories of durable results even at stage 4!  We'll hope dacarbazine treats us as well.  :)  

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        Amy K
        Participant

        Wow, thank you for sharing that!!   I love hearing those stories of durable results even at stage 4!  We'll hope dacarbazine treats us as well.  :)  

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      Erica A
      Participant

      My husband was stage IV, did bio-chemo which included dacarbazine and has been cancer-free for almost 6 years now.  So you can have a durable remission from chemo!

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      LynnLuc
      Participant

      Hi Amy, I don't like doctors who tell you that if you get 5 years out the chances of it coming back are slim…melanoma is not like "regular cancers"- for many of them the 5 years may be possible…Mine came back after 4 years, then 4 years  at the same site( on neck) then  9 years as stage 4 as a large mass by my heart…

      I am stage 4 NED-now 11 months- I am in a trial that uses

      Biological: MART-1:26-35(27L) peptide vaccine
      Biological: NY-ESO-1 peptide vaccine
      Biological: anti-PD-1 human monoclonal antibody MDX-1106
      Biological: gp100:209-217(210M) peptide vaccine
      Biological: gp100:280-288(288V) peptide vaccine
      Drug: Montanide ISA 51 VG

      I have actually just finished the  24 weeks( two 12 week)  on March 2  and will now continue to get booster infusions of the MDX 1106 (anti-PD-1) every 3 months for at 2 years…

      Since your husband is NED it could be an option…I asked to be a patient of Dr Weber's and I really wanted this trial because of the MDX 1106- it is a NOT blind study asI was told  Moffitt Cancer Center does not accept blind studies for their Melanoma patients…

      http://www.cancer.gov/clinicaltrials/search/view?cdrid=682183&version=healthprofessional

      Good Luck to you and your hubby in whatever you do!~Lynn

       

       

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      LynnLuc
      Participant

      Hi Amy, I don't like doctors who tell you that if you get 5 years out the chances of it coming back are slim…melanoma is not like "regular cancers"- for many of them the 5 years may be possible…Mine came back after 4 years, then 4 years  at the same site( on neck) then  9 years as stage 4 as a large mass by my heart…

      I am stage 4 NED-now 11 months- I am in a trial that uses

      Biological: MART-1:26-35(27L) peptide vaccine
      Biological: NY-ESO-1 peptide vaccine
      Biological: anti-PD-1 human monoclonal antibody MDX-1106
      Biological: gp100:209-217(210M) peptide vaccine
      Biological: gp100:280-288(288V) peptide vaccine
      Drug: Montanide ISA 51 VG

      I have actually just finished the  24 weeks( two 12 week)  on March 2  and will now continue to get booster infusions of the MDX 1106 (anti-PD-1) every 3 months for at 2 years…

      Since your husband is NED it could be an option…I asked to be a patient of Dr Weber's and I really wanted this trial because of the MDX 1106- it is a NOT blind study asI was told  Moffitt Cancer Center does not accept blind studies for their Melanoma patients…

      http://www.cancer.gov/clinicaltrials/search/view?cdrid=682183&version=healthprofessional

      Good Luck to you and your hubby in whatever you do!~Lynn

       

       

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      cheryl brodersen
      Participant

      Amy,

      I can't speak to the problems your husband is having with his eye, I'm sorry. I can say that my husband Steve's melanoma came back after 23 years! His first mole removal was extensive though he can't recall a stage being pronounced and the hospital has since burned down (yes, apparently they do burn down!) But 23 years after they 'got it all' leaving a lemon sized hole in the middle of his back, it returned in the form of a huge lymph node tumor under his arm. They got all of that too. Oops. Four months later a scan found it in his adrenal glands and he became Stage IV.

      He underwent 18 rounds of DTIC chemo in 14 months at the Arizona Cancer Center under the care of Dr. Evan Hersh, a world-reknowned melanoma researcher who is now about 75 years old! He never quite went into remission technically, but they didn't find the next spot until about 18 months later and it was in his tonsil–somewhere melanoma isn't supposed to go. This was followed in a few months by a brain met in the cerebellum on which he had stereotactic radiation.

      The most recent scan in January found it in about 6 other places and is now considered 'systemic' being in the brain system, lymphatic system, and soft tissue. My husband was started immediately on Abraxane and Avastin and has had three treatments of that combo.

      It's a crap shoot. I know that he has lived a really good life for 2 years since he was diagnosed as terminal. The A/A treatments have been hard, I will admit. But he played a round of golf on Wednesday and is still out selling cars. Besides the sudden baldness, he looks good and feels…all right.

      Don't listen to the numbers. If one person has beat it, it's possible, and if it's possible shoot for the best possible outcome!

      Good luck to you! Email anytime!

      Cheryl

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      cheryl brodersen
      Participant

      Amy,

      I can't speak to the problems your husband is having with his eye, I'm sorry. I can say that my husband Steve's melanoma came back after 23 years! His first mole removal was extensive though he can't recall a stage being pronounced and the hospital has since burned down (yes, apparently they do burn down!) But 23 years after they 'got it all' leaving a lemon sized hole in the middle of his back, it returned in the form of a huge lymph node tumor under his arm. They got all of that too. Oops. Four months later a scan found it in his adrenal glands and he became Stage IV.

      He underwent 18 rounds of DTIC chemo in 14 months at the Arizona Cancer Center under the care of Dr. Evan Hersh, a world-reknowned melanoma researcher who is now about 75 years old! He never quite went into remission technically, but they didn't find the next spot until about 18 months later and it was in his tonsil–somewhere melanoma isn't supposed to go. This was followed in a few months by a brain met in the cerebellum on which he had stereotactic radiation.

      The most recent scan in January found it in about 6 other places and is now considered 'systemic' being in the brain system, lymphatic system, and soft tissue. My husband was started immediately on Abraxane and Avastin and has had three treatments of that combo.

      It's a crap shoot. I know that he has lived a really good life for 2 years since he was diagnosed as terminal. The A/A treatments have been hard, I will admit. But he played a round of golf on Wednesday and is still out selling cars. Besides the sudden baldness, he looks good and feels…all right.

      Don't listen to the numbers. If one person has beat it, it's possible, and if it's possible shoot for the best possible outcome!

      Good luck to you! Email anytime!

      Cheryl

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