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Just an update and a question.

Forums General Melanoma Community Just an update and a question.

  • Post
    himynameiskevin
    Participant

    So I'm 3 weeks and 7 days out of the hospital and IL-2 treatment. All side effects have passed except for a lingering itchy-throat cough that is going away very slowly. I had an MRI done last Monday and thanks to the stereotactic radiation I had done, the tumor in my brain has "essentially vanished" and the rest of my brain appears to me clear of any new lesions. Good news. As for the visible ones on my chest and my back.. the little nodule on my chest definitely seems to be smaller than it was at one time. Good news?

    So I'm 3 weeks and 7 days out of the hospital and IL-2 treatment. All side effects have passed except for a lingering itchy-throat cough that is going away very slowly. I had an MRI done last Monday and thanks to the stereotactic radiation I had done, the tumor in my brain has "essentially vanished" and the rest of my brain appears to me clear of any new lesions. Good news. As for the visible ones on my chest and my back.. the little nodule on my chest definitely seems to be smaller than it was at one time. Good news? After about two weeks after the treatment, the large mass on my back definitely seemed smaller, softer, and any pain accompanied with the pressure of it's size had pretty much disappeared. My wife and good friend confirmed this. Unfortunately a day or two after my MRI, it started to come back to it's normal shape and size and the slight annoying pain is back. I have heard that it is possible for tumors to swell up or grow in ways before shrinking. Has anyone ever heard of this happening? Or experienced something similar? And as for the ones on the inside (liver, lungs, lymphs) I hope they're following the one on my chest and getting smaller. That would be nice. I get my CT scan on the 25th and talk to my doctor about the results on the 27th. Hoping for the best. If I have any positive response to the IL-2 it looks like I'd be doing another round of the IL-2. Which I'd be glad to do.. if that's the case. Lastly, I just found out that my tumors have the BRAF mutation, so the the PLX drug or Ipilimumab seems to be the next step if the IL-2 isn't effective. My doctor mentioned some clinical trials aren't available to people who've had a brain tumor, unfortunate. Not sure if that applies to these options, guess I'll see when I gotten there. Hope all is well with everyone here. It's nice to part of this community. A constant reminder that we're not alone, and there is always hope. Enjoy your day.  -Kevin

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  • Replies
      Linda/Kentucky
      Participant

      This sounds like wonderful news. I'm glad you were able to finish the IL-2.  If your a responder it seems to be a good tx. for long term effect.  It's a very harsh tx. but if you can tolerate it AND it works I would definitely do it again! 

       I'm not sure about the tumors swelling then shrinking while doing the IL-2? I had not heard of that with IL-2  I do know with the Ipi this is suppose to be a fimiliar symptom.  My husband did the high dose IL-2 and Ipi with no response to either.  He is BRAF neg. so can't do the PLX tx. either. I do have a question about your doing the stereotactic radiation.  Was it the Novalis radiation?  How many tx. did you have to take?  Why did they not use this on any of your other mets?  Where did you have this done at?  The reason I ask is we are looking into this as one of our next options. My husband has liver,lung and bone mets.  Thank goodness no brain mets yet.

      Good luck with your next set of scans I know the waiting is a very hard thing to do.  I will be thinking about you and hope nothing but good comes your way~~~~~

      Linda/Kentucky

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        himynameiskevin
        Participant

        Hi Linda, sorry about the late reply, but to answer your questions… I'm not sure is if the same as Novalis radiation, probably not because I've never heard of that, but I could be wrong. From what I understand it is just a very high.. amount or radiation all shot together at one precise spot. Like laser beams all directed at the tumor and only the tumor. Very strong stuff and very accurate. There's a couple informative videos on the internet you can find that show in detail how it works. But I guess they offer this on the brain because they are able to hold your head still. They fit you for a mask that covers your entire face/head and it bolts to the table, then there's this cage thing, and it screws tight like a vise. I couldn't move my head a cm if I tried my hardest. And that's important because if you move, even an cm, it would miss it's do a lot of damage to healthy important tissue, which is why they can't do it to my liver or lungs. Because I breathe, the lungs are like moving targets, and.. well, unfortunately, just wouldn't work. Anyway, I had this done here at Sharp Memorial Hospital in San Diego. By Dr Brian Volpp. I am very fortunate to like all of my doctors but by far, Dr Volpp is the nicest and most easiest to talk to doctor I've ever had. I almost look forward to seeing him cause every time I leave his office I feel better than when I went in. Well Linda I hope I was of some help and thank you for the positive thoughts, I hope everything goes well with you and your husband too. Keep us updated.

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        himynameiskevin
        Participant

        Hi Linda, sorry about the late reply, but to answer your questions… I'm not sure is if the same as Novalis radiation, probably not because I've never heard of that, but I could be wrong. From what I understand it is just a very high.. amount or radiation all shot together at one precise spot. Like laser beams all directed at the tumor and only the tumor. Very strong stuff and very accurate. There's a couple informative videos on the internet you can find that show in detail how it works. But I guess they offer this on the brain because they are able to hold your head still. They fit you for a mask that covers your entire face/head and it bolts to the table, then there's this cage thing, and it screws tight like a vise. I couldn't move my head a cm if I tried my hardest. And that's important because if you move, even an cm, it would miss it's do a lot of damage to healthy important tissue, which is why they can't do it to my liver or lungs. Because I breathe, the lungs are like moving targets, and.. well, unfortunately, just wouldn't work. Anyway, I had this done here at Sharp Memorial Hospital in San Diego. By Dr Brian Volpp. I am very fortunate to like all of my doctors but by far, Dr Volpp is the nicest and most easiest to talk to doctor I've ever had. I almost look forward to seeing him cause every time I leave his office I feel better than when I went in. Well Linda I hope I was of some help and thank you for the positive thoughts, I hope everything goes well with you and your husband too. Keep us updated.

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        Linda/Kentucky
        Participant

        This sounds exactly like the novalis except they can use it on lungs and liver, somehow it does something when you breath? it still measures it and zaps the exact spot with a large dose to only tumor not healthy tissue.  Thanks for letting me know.

         

        Linda/Kentucky

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        Linda/Kentucky
        Participant

        This sounds exactly like the novalis except they can use it on lungs and liver, somehow it does something when you breath? it still measures it and zaps the exact spot with a large dose to only tumor not healthy tissue.  Thanks for letting me know.

         

        Linda/Kentucky

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        ValinMtl
        Participant

        Hi Kevin

        There shouldn't be a problem with ipilimumab if you have had brain tumors.  Sharyn from Newfoundland would be the person to speak to about this. I'm so deeply moved by how hard you are fighting this Kevin and happy you have a wonderful caregiver. Val

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        ValinMtl
        Participant

        Hi Kevin

        There shouldn't be a problem with ipilimumab if you have had brain tumors.  Sharyn from Newfoundland would be the person to speak to about this. I'm so deeply moved by how hard you are fighting this Kevin and happy you have a wonderful caregiver. Val

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      Linda/Kentucky
      Participant

      This sounds like wonderful news. I'm glad you were able to finish the IL-2.  If your a responder it seems to be a good tx. for long term effect.  It's a very harsh tx. but if you can tolerate it AND it works I would definitely do it again! 

       I'm not sure about the tumors swelling then shrinking while doing the IL-2? I had not heard of that with IL-2  I do know with the Ipi this is suppose to be a fimiliar symptom.  My husband did the high dose IL-2 and Ipi with no response to either.  He is BRAF neg. so can't do the PLX tx. either. I do have a question about your doing the stereotactic radiation.  Was it the Novalis radiation?  How many tx. did you have to take?  Why did they not use this on any of your other mets?  Where did you have this done at?  The reason I ask is we are looking into this as one of our next options. My husband has liver,lung and bone mets.  Thank goodness no brain mets yet.

      Good luck with your next set of scans I know the waiting is a very hard thing to do.  I will be thinking about you and hope nothing but good comes your way~~~~~

      Linda/Kentucky

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      jag
      Participant

      Kevin

      Good to hear you are well,

      Will pray for you come 10/27.

      Best

      JG

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      jag
      Participant

      Kevin

      Good to hear you are well,

      Will pray for you come 10/27.

      Best

      JG

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      triciad
      Participant

      Kevin,

      I hope and pray all goes well with the scans.   Keep the positive attitude.  I will keep you in my prayers.

      Tricia

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      triciad
      Participant

      Kevin,

      I hope and pray all goes well with the scans.   Keep the positive attitude.  I will keep you in my prayers.

      Tricia

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      dian in spokane
      Participant

      Great to hear from you Kevin, and it sounds like you are having some good results! I'll keep my fingers crossed that your scans on the 25th show a reduction in all of your tumors! There are not that many people out there who are complete responders to IL2, but those that are seem to be doing great, so I hope you fall into that category.

      Good luck!

       

      dian in spokane

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      dian in spokane
      Participant

      Great to hear from you Kevin, and it sounds like you are having some good results! I'll keep my fingers crossed that your scans on the 25th show a reduction in all of your tumors! There are not that many people out there who are complete responders to IL2, but those that are seem to be doing great, so I hope you fall into that category.

      Good luck!

       

      dian in spokane

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      Rocklove
      Participant

      Praying for good results Kevin.

      It's good to see your post. I have been wondering how you were doing.

      Rocky (Stage IV Liver Mets)

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      Rocklove
      Participant

      Praying for good results Kevin.

      It's good to see your post. I have been wondering how you were doing.

      Rocky (Stage IV Liver Mets)

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      makedoandmend
      Participant

      thanks for sharing your experiences. I really  enjoy  following your posts. You must have been estatic when you heard the brain tumor is gone.  I'm psyched for you.  I'm stage IIIC and pretty newly diagnosed so I'm hoping to learn as much as I can from you…best of luck with the next scans.  I'm looking foward to good results!

      -pat on long island

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      makedoandmend
      Participant

      thanks for sharing your experiences. I really  enjoy  following your posts. You must have been estatic when you heard the brain tumor is gone.  I'm psyched for you.  I'm stage IIIC and pretty newly diagnosed so I'm hoping to learn as much as I can from you…best of luck with the next scans.  I'm looking foward to good results!

      -pat on long island

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      JuleFL
      Participant

      Hi Kevin,

      I'm hoping for some continued improvement for you.  I have heard that occasionally  tumors swell (inflammation?) before decreasing in size – I hope that is the case.  I have also heard that some trials will allow participants with prior brain mets as long as they have been removed; you can read through the requirements on the clinical trials site.  There is a lot of talk about PLX – if there is a response, it seems to be much quicker than ipi.  Check and see if you can do one after the other.  Keep up your healthand strength for this tough battle.  Best wishes.

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      JuleFL
      Participant

      Hi Kevin,

      I'm hoping for some continued improvement for you.  I have heard that occasionally  tumors swell (inflammation?) before decreasing in size – I hope that is the case.  I have also heard that some trials will allow participants with prior brain mets as long as they have been removed; you can read through the requirements on the clinical trials site.  There is a lot of talk about PLX – if there is a response, it seems to be much quicker than ipi.  Check and see if you can do one after the other.  Keep up your healthand strength for this tough battle.  Best wishes.

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        Linda/Kentucky
        Participant

        Hi Jule

        Glad to see you still posting on here from time to time.  Hope all is going well with you.  I still think about you often and pray your are doing well adjusting to a different life.  Take care of yourself and try to find your happiness again soon~~

         

        Linda/Kentucky

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        Linda/Kentucky
        Participant

        Hi Jule

        Glad to see you still posting on here from time to time.  Hope all is going well with you.  I still think about you often and pray your are doing well adjusting to a different life.  Take care of yourself and try to find your happiness again soon~~

         

        Linda/Kentucky

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      joy_
      Participant

      Good news!  Prayers for more good news with scan results!

      Tracy

      wife to Bill, stage IIIc

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      joy_
      Participant

      Good news!  Prayers for more good news with scan results!

      Tracy

      wife to Bill, stage IIIc

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      Hi Kevin,

      I pray that that IL-2 has your melanoma running scared and that those tumors just had their last say before they started shrinking! 

      I will hold you in my prayers while you wait for your scans and appointment on the 27th. 

      With love and peace,

      Shelly in Switzerland

       

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      Hi Kevin,

      I pray that that IL-2 has your melanoma running scared and that those tumors just had their last say before they started shrinking! 

      I will hold you in my prayers while you wait for your scans and appointment on the 27th. 

      With love and peace,

      Shelly in Switzerland

       

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      sharmon
      Participant

      Good News!  Congrats and keep up the good attitude.  It is great to be able to read your post.  Gives us all something to shoot for.

      Sharon

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      sharmon
      Participant

      Good News!  Congrats and keep up the good attitude.  It is great to be able to read your post.  Gives us all something to shoot for.

      Sharon

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      yensidw
      Participant

      Will pray for good results. 

       

      Janis

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      yensidw
      Participant

      Will pray for good results. 

       

      Janis

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      LynnLuc
      Participant

      I was told by my radiation oncologist ( July 09) that my melanoma would probably increase after radiation -before it would decrease and they were concerned because mine was very close to my superior vena cava and was close to cutting of my blood supply to the upper half of my body..likewise it was also causing some breathing problems…it didn't swell as much as they thought and radiation with the second week using temodar had shrunk it by at least 35%.

      A lot of water under the bridge and I am now Stage 4 NED!

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      LynnLuc
      Participant

      I was told by my radiation oncologist ( July 09) that my melanoma would probably increase after radiation -before it would decrease and they were concerned because mine was very close to my superior vena cava and was close to cutting of my blood supply to the upper half of my body..likewise it was also causing some breathing problems…it didn't swell as much as they thought and radiation with the second week using temodar had shrunk it by at least 35%.

      A lot of water under the bridge and I am now Stage 4 NED!

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      JenC
      Participant
      Hi Kevin
      I hope you are doing well. My husband just finished his 1st round of IL-2 (a very scary experience. I am in awe of all of you who go through it) When he was being discharged a nurse told us not to be discouraged if we saw tumor growth as it may be the killer T- cells attacking the melanoma. Good luck with your scans. I’ll be praying for good news!
      JenC

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      JenC
      Participant
      Hi Kevin
      I hope you are doing well. My husband just finished his 1st round of IL-2 (a very scary experience. I am in awe of all of you who go through it) When he was being discharged a nurse told us not to be discouraged if we saw tumor growth as it may be the killer T- cells attacking the melanoma. Good luck with your scans. I’ll be praying for good news!
      JenC

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        himynameiskevin
        Participant

        I hope that's the case, something's definetly going on back there, the mass on my back seems more swollen then growing (hopefully). And for the last 5 days or so it's become a bit sensative, random throbs/aches, and when i touch or poke the area there's slight pain like a warm burning sensation kind of like a little lemon juice in a cut, whereas there was never much pain in the area unless really pressed or leaned on it. I don't know, perhaps I'm just paranoid because my scan is next monday and I was hoping to see some kind of indication of shrinkage. I'm 4 weeks and 5 days out. But, I hear it can take 5 weeks to show response, I'd be ecstatic to hear of any kind of response…  On a lighter more positive note, the one on my chest, from what I remember, it  seemed to be about the size of a lima bean before the IL-2 and for the last three weeks it's seems to be holding steady at the size of a pea. Hope it's not all in my head. We'll see. I get scanned on monday. And see my Dr. Daniels on Wednesday. (Fingers Crossed)

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        himynameiskevin
        Participant

        I hope that's the case, something's definetly going on back there, the mass on my back seems more swollen then growing (hopefully). And for the last 5 days or so it's become a bit sensative, random throbs/aches, and when i touch or poke the area there's slight pain like a warm burning sensation kind of like a little lemon juice in a cut, whereas there was never much pain in the area unless really pressed or leaned on it. I don't know, perhaps I'm just paranoid because my scan is next monday and I was hoping to see some kind of indication of shrinkage. I'm 4 weeks and 5 days out. But, I hear it can take 5 weeks to show response, I'd be ecstatic to hear of any kind of response…  On a lighter more positive note, the one on my chest, from what I remember, it  seemed to be about the size of a lima bean before the IL-2 and for the last three weeks it's seems to be holding steady at the size of a pea. Hope it's not all in my head. We'll see. I get scanned on monday. And see my Dr. Daniels on Wednesday. (Fingers Crossed)

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