Just joined after reading posts for months….hello, all melanoma warriors
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Just joined after reading posts for months….hello, all melanoma warriors

› Forums › General Melanoma Community › Just joined after reading posts for months….hello, all melanoma warriors

  • Post
    • August 25, 2012 at 5:28 am
    Amanda
    Participant

    Hi everyone, I've been reading all your posts since my boyfriend was diagnosed march 9, 2012, thought it was time to finally make an account.  I have learned so much here, and am very grateful that you take time out of your day to post your experiences.  Just wanted to say hi, and i hope everyone is feeling good today, and will do so for a long time!

    Like i said my boyfriend is the patient. Diagnosed Stage 4, no primary on March 9th, 2012.  He just finished yervoy.  Nothing getting bigger, but not shrinking.  I filled out the profile (i know you all want the newcomers to get that filled out).  Also, he has all over body rash right now and itching like crazy.  He had a small rash just on his hips for a few weeks, but after his 4th infusion rash has gone crazy, as well at the itching.  Benadryl helps some though.  Any questions id be glad to answer. 

     

Viewing 17 reply threads
  • Replies
      • August 25, 2012 at 2:32 pm
      Tina D
      Participant

      Hi Amanda,

      I just read your profile and am aorry for all that you and your boyfriend have been through in these past months. I am glad you decided to join this forum and I am certain you will find on here a great amount of support and help. And, I know others will also benefit from your input.

      I hope to see your future posts showing that the Yervoy continues to attack the disease!

      Tina

      • August 25, 2012 at 2:32 pm
      Tina D
      Participant

      Hi Amanda,

      I just read your profile and am aorry for all that you and your boyfriend have been through in these past months. I am glad you decided to join this forum and I am certain you will find on here a great amount of support and help. And, I know others will also benefit from your input.

      I hope to see your future posts showing that the Yervoy continues to attack the disease!

      Tina

      • August 25, 2012 at 2:32 pm
      Tina D
      Participant

      Hi Amanda,

      I just read your profile and am aorry for all that you and your boyfriend have been through in these past months. I am glad you decided to join this forum and I am certain you will find on here a great amount of support and help. And, I know others will also benefit from your input.

      I hope to see your future posts showing that the Yervoy continues to attack the disease!

      Tina

      • August 25, 2012 at 5:53 pm
      audgator
      Participant

      Hi Amanda,  I'm also a no-primary-guy although I've never had the size mets you describe. Mine actually grew a bit while on Yervoy so I went straight to an anti-PD1 trial. That is working for me.  All our best wishes to you and Randy.   Dan

        • August 25, 2012 at 6:05 pm
        audgator
        Participant

        ps: I forgot to include what I started out to say.  A rash was my only side effect from Yervoy and it was limited to a few spots the worst of which was my calves. hydrocortizone, both otc & Rx, only gave relief for about 3 hours and I found that just moisturizing cream worked as well. The best for me was a generic store brand similar to Gold Bond. Much, much cheaper than the hydrocortizone and as effective.  My calves still itch and I don't know if that is left over from Yervoy or if it is from the new drug also.  Good Luck.   Dan

        • August 25, 2012 at 6:05 pm
        audgator
        Participant

        ps: I forgot to include what I started out to say.  A rash was my only side effect from Yervoy and it was limited to a few spots the worst of which was my calves. hydrocortizone, both otc & Rx, only gave relief for about 3 hours and I found that just moisturizing cream worked as well. The best for me was a generic store brand similar to Gold Bond. Much, much cheaper than the hydrocortizone and as effective.  My calves still itch and I don't know if that is left over from Yervoy or if it is from the new drug also.  Good Luck.   Dan

        • August 25, 2012 at 6:05 pm
        audgator
        Participant

        ps: I forgot to include what I started out to say.  A rash was my only side effect from Yervoy and it was limited to a few spots the worst of which was my calves. hydrocortizone, both otc & Rx, only gave relief for about 3 hours and I found that just moisturizing cream worked as well. The best for me was a generic store brand similar to Gold Bond. Much, much cheaper than the hydrocortizone and as effective.  My calves still itch and I don't know if that is left over from Yervoy or if it is from the new drug also.  Good Luck.   Dan

      • August 25, 2012 at 5:53 pm
      audgator
      Participant

      Hi Amanda,  I'm also a no-primary-guy although I've never had the size mets you describe. Mine actually grew a bit while on Yervoy so I went straight to an anti-PD1 trial. That is working for me.  All our best wishes to you and Randy.   Dan

      • August 25, 2012 at 5:53 pm
      audgator
      Participant

      Hi Amanda,  I'm also a no-primary-guy although I've never had the size mets you describe. Mine actually grew a bit while on Yervoy so I went straight to an anti-PD1 trial. That is working for me.  All our best wishes to you and Randy.   Dan

      • August 25, 2012 at 6:27 pm
      Wendi Lynn
      Participant
      Amanda,
      Just looked at your profile and saw that Randy and I are both seeing Dr. Blitzer. I am stage 3 and currently NED after a year of interferon. PET scan coming up soon so hoping to continue NED. Hoping that things get better for Randy! Wishing you both the best!!

      Wendi

      • August 25, 2012 at 6:27 pm
      Wendi Lynn
      Participant
      Amanda,
      Just looked at your profile and saw that Randy and I are both seeing Dr. Blitzer. I am stage 3 and currently NED after a year of interferon. PET scan coming up soon so hoping to continue NED. Hoping that things get better for Randy! Wishing you both the best!!

      Wendi

      • August 25, 2012 at 6:27 pm
      Wendi Lynn
      Participant
      Amanda,
      Just looked at your profile and saw that Randy and I are both seeing Dr. Blitzer. I am stage 3 and currently NED after a year of interferon. PET scan coming up soon so hoping to continue NED. Hoping that things get better for Randy! Wishing you both the best!!

      Wendi

      • August 26, 2012 at 5:44 am
      Amanda
      Participant

      Thanks for all the support guys!  Dan, his oncologist says we can do yervoy again, but it's hard to decide to keep doing a drug that is just keeping the melanoma stable, or to try an anti-pd1 trial.  We dont have the means to travel, so we'd have to get lucky and find an open trial in L.A. The next couple weeks with out next appt. with doc should give a little more insight.

      Debi, do you see blitzer at the long beach, or huntington beach location, i know he goes back and forth. (we're in Long Beach). My boyfriend is Dr. Blitzers first patient treated with yervoy, so we're pretty much his guinea pig. 

      Hope you keep responding to anti-pd1 dan, and debi, hope many years of ned!!!! congrats!!

      I know i've searched these boards up and down, but im still not sure on this question…. If he pretty much has remained stable since the start of yervoy, is there evidence that one can move from stable, to shrinkage weeks after 4th infusion?

      Thanks again guys, for your support.  smiley

        • August 26, 2012 at 11:32 pm
        Gene_S
        Participant

        Amanda,  Presently Yervoy has the greatest number of "long term survivors" of all of the current drugs. I would also suggest that do do some further research into a diet and lifestyle changes. Research "The Maker's Diet" and /or "Rave Diet". Also get checked for a vitamin D-3 deficiency.  Best wishes, Gene

        • August 26, 2012 at 11:32 pm
        Gene_S
        Participant

        Amanda,  Presently Yervoy has the greatest number of "long term survivors" of all of the current drugs. I would also suggest that do do some further research into a diet and lifestyle changes. Research "The Maker's Diet" and /or "Rave Diet". Also get checked for a vitamin D-3 deficiency.  Best wishes, Gene

        • August 26, 2012 at 11:32 pm
        Gene_S
        Participant

        Amanda,  Presently Yervoy has the greatest number of "long term survivors" of all of the current drugs. I would also suggest that do do some further research into a diet and lifestyle changes. Research "The Maker's Diet" and /or "Rave Diet". Also get checked for a vitamin D-3 deficiency.  Best wishes, Gene

        • September 4, 2012 at 2:16 am
        kath17
        Participant

        Amanda,

        My husband just started a clinical trial in LA at the Angeles Clinic. It's Zelboraf and Immunotherapy combined. It's just begun so qualifying might still be open.

        Kath

        • September 4, 2012 at 2:16 am
        kath17
        Participant

        Amanda,

        My husband just started a clinical trial in LA at the Angeles Clinic. It's Zelboraf and Immunotherapy combined. It's just begun so qualifying might still be open.

        Kath

        • September 4, 2012 at 2:16 am
        kath17
        Participant

        Amanda,

        My husband just started a clinical trial in LA at the Angeles Clinic. It's Zelboraf and Immunotherapy combined. It's just begun so qualifying might still be open.

        Kath

      • August 26, 2012 at 5:44 am
      Amanda
      Participant

      Thanks for all the support guys!  Dan, his oncologist says we can do yervoy again, but it's hard to decide to keep doing a drug that is just keeping the melanoma stable, or to try an anti-pd1 trial.  We dont have the means to travel, so we'd have to get lucky and find an open trial in L.A. The next couple weeks with out next appt. with doc should give a little more insight.

      Debi, do you see blitzer at the long beach, or huntington beach location, i know he goes back and forth. (we're in Long Beach). My boyfriend is Dr. Blitzers first patient treated with yervoy, so we're pretty much his guinea pig. 

      Hope you keep responding to anti-pd1 dan, and debi, hope many years of ned!!!! congrats!!

      I know i've searched these boards up and down, but im still not sure on this question…. If he pretty much has remained stable since the start of yervoy, is there evidence that one can move from stable, to shrinkage weeks after 4th infusion?

      Thanks again guys, for your support.  smiley

      • August 26, 2012 at 5:44 am
      Amanda
      Participant

      Thanks for all the support guys!  Dan, his oncologist says we can do yervoy again, but it's hard to decide to keep doing a drug that is just keeping the melanoma stable, or to try an anti-pd1 trial.  We dont have the means to travel, so we'd have to get lucky and find an open trial in L.A. The next couple weeks with out next appt. with doc should give a little more insight.

      Debi, do you see blitzer at the long beach, or huntington beach location, i know he goes back and forth. (we're in Long Beach). My boyfriend is Dr. Blitzers first patient treated with yervoy, so we're pretty much his guinea pig. 

      Hope you keep responding to anti-pd1 dan, and debi, hope many years of ned!!!! congrats!!

      I know i've searched these boards up and down, but im still not sure on this question…. If he pretty much has remained stable since the start of yervoy, is there evidence that one can move from stable, to shrinkage weeks after 4th infusion?

      Thanks again guys, for your support.  smiley

      • August 27, 2012 at 3:06 am
      LynnLuc
      Participant

      Hope he does wonderful with Yervoy! I am stage 4 and have been NED for 2 years and 5 months…it ain't over til its over….I have been in a BMS Anti PD 1 trial since fall 2010. I am in the nooster phase now and gettting scans and a booster infusion of anti pd 1 every 3 months…after Sept 5   I will have only 2 left to do in this 30 month trial!

        • August 27, 2012 at 3:08 am
        LynnLuc
        Participant

        "Nooster" is suppose to read BOOSTER!

        • August 27, 2012 at 5:30 pm
        audgator
        Participant

        I don't know, Lynn. I think I like nooster better.

        • August 27, 2012 at 5:30 pm
        audgator
        Participant

        I don't know, Lynn. I think I like nooster better.

        • August 27, 2012 at 5:30 pm
        audgator
        Participant

        I don't know, Lynn. I think I like nooster better.

        • August 27, 2012 at 3:08 am
        LynnLuc
        Participant

        "Nooster" is suppose to read BOOSTER!

        • August 27, 2012 at 3:08 am
        LynnLuc
        Participant

        "Nooster" is suppose to read BOOSTER!

      • August 27, 2012 at 3:06 am
      LynnLuc
      Participant

      Hope he does wonderful with Yervoy! I am stage 4 and have been NED for 2 years and 5 months…it ain't over til its over….I have been in a BMS Anti PD 1 trial since fall 2010. I am in the nooster phase now and gettting scans and a booster infusion of anti pd 1 every 3 months…after Sept 5   I will have only 2 left to do in this 30 month trial!

      • August 27, 2012 at 3:06 am
      LynnLuc
      Participant

      Hope he does wonderful with Yervoy! I am stage 4 and have been NED for 2 years and 5 months…it ain't over til its over….I have been in a BMS Anti PD 1 trial since fall 2010. I am in the nooster phase now and gettting scans and a booster infusion of anti pd 1 every 3 months…after Sept 5   I will have only 2 left to do in this 30 month trial!

      • August 27, 2012 at 6:42 am
      JerryfromFauq
      Participant

      Stable is good.  Yervoy (Ipi) has been known to take up to a year to actually show much effect.  (I know "just stable" is rough to wait out.)  I have been "essentially stable" for most of my 5 years since going to stage IV.  If you have a good IL-2 Oncologist, IL-2 seems to have a possibility of working better when used sequentially with Ipi.  Of course If I had the oportunity to start getting the anti-PD! drug I would not hesitate to start it.  Would love to hear more results of YerVoy followed by Anti-PD-1.  There are usually less negative side effects from the Anti-Pd1 than from either the Yervoy or IL-2, both of which can be very rough on one.

      • August 27, 2012 at 6:42 am
      JerryfromFauq
      Participant

      Stable is good.  Yervoy (Ipi) has been known to take up to a year to actually show much effect.  (I know "just stable" is rough to wait out.)  I have been "essentially stable" for most of my 5 years since going to stage IV.  If you have a good IL-2 Oncologist, IL-2 seems to have a possibility of working better when used sequentially with Ipi.  Of course If I had the oportunity to start getting the anti-PD! drug I would not hesitate to start it.  Would love to hear more results of YerVoy followed by Anti-PD-1.  There are usually less negative side effects from the Anti-Pd1 than from either the Yervoy or IL-2, both of which can be very rough on one.

      • August 27, 2012 at 6:42 am
      JerryfromFauq
      Participant

      Stable is good.  Yervoy (Ipi) has been known to take up to a year to actually show much effect.  (I know "just stable" is rough to wait out.)  I have been "essentially stable" for most of my 5 years since going to stage IV.  If you have a good IL-2 Oncologist, IL-2 seems to have a possibility of working better when used sequentially with Ipi.  Of course If I had the oportunity to start getting the anti-PD! drug I would not hesitate to start it.  Would love to hear more results of YerVoy followed by Anti-PD-1.  There are usually less negative side effects from the Anti-Pd1 than from either the Yervoy or IL-2, both of which can be very rough on one.

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