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Question for Linda

Forums General Melanoma Community Question for Linda

  • Post
    Lisa13
    Participant
      Hi. Linda,

      it looks like I have to the steroids, but i’m really try to not take the. The most problem I have is a weak hand and a small amount of forgetting words. I had a gamma knife 2 weeks ago and told me the huge one I have hasn’t moved for 13 days. If it continues to stop moving or it can shrink, can be amazing!

      Do you know when blood disappears so that they know if there is tumour? Is it 2 weeks or months that the blood would disappears. Do you think I should be taking the steroid? They told me to start at 4mg.

      Thanks Linda. I hope you’re doing okay.

      Lisa

      Hi. Linda,

      it looks like I have to the steroids, but i’m really try to not take the. The most problem I have is a weak hand and a small amount of forgetting words. I had a gamma knife 2 weeks ago and told me the huge one I have hasn’t moved for 13 days. If it continues to stop moving or it can shrink, can be amazing!

      Do you know when blood disappears so that they know if there is tumour? Is it 2 weeks or months that the blood would disappears. Do you think I should be taking the steroid? They told me to start at 4mg.

      Thanks Linda. I hope you’re doing okay.

      Lisa

    Viewing 2 reply threads
    • Replies
        lhaley
        Participant

          Lisa,

          I'm glad you got to go to Florida with your family!

          When I started they put me on 4 mgs but quickly I went to 8 mgs, but not for long.  Ask them if you are to do 4mgs in the morning or 2 in the morning and 2 in the evening.  Different Drs. have different opinions.  My nuerosurgeon wanted me to split it and my oncologist wanted me to do the 4 in the morning.  

          Are they going to do anything with this tumor?  I know it was originally gamma'd in Nov. are they waiting to see if it stabilizes?  When the steroids were destroying my body it was worth it to take the chance to cut out the deep met in my speech area.  I still have lost a few words but almost back to normal now.

          While I'm not happy with my last scans but over 6 months my lung nodule only grew 2mm. Not bad when you think that for that long of a time and no immune system.  It is being rechecked in 3 weeks to see if it grows. It has been there now for about 2 years, has grown about 4mm in the last 15 months. They are not sure yet if it is lung junk or melanoma.  

          My biggest concern is they aren't sure if the brain met is back or if it is radiation necrosis or scar tissue. That is also being checked in 3 weeks.

          They have watched my cortesol levels and they are back to normal. Been off of the Dex for 2 months now.  I still have some issues from the steroids but some of it is because I'm much older then you. Lots of inflammation.  Last time I saw my oncologist I told him I would never take the steroids again but I think a very short time would be different.  

          It takes months for the blood to be absorbed.  It only bled the one time but it was still there 4 months later when I had the crainectomy, not sure if some of it was absorbed.  I think the bigger issue for you is if it is still bleeding.  Many melanoma brain mets are vascular and that can be dangerous. 

          My first few weeks I had no issues on the steroids. Things to watch for:  blood pressure, sugar, if you go off make sure to wean slowly, your eyes (pressure and glaucoma or cataracts), watch your diet and exercise to not loose muscle mass. Some people have euphoria (they think all is fine, thankfully I had that) and some have depression and anger. Lots of mood swings. I also had thrush from the very first pill -ugh – and still am having issues from it.

          Let me know what your next step is.

          Linda

          lhaley
          Participant

            Lisa,

            I'm glad you got to go to Florida with your family!

            When I started they put me on 4 mgs but quickly I went to 8 mgs, but not for long.  Ask them if you are to do 4mgs in the morning or 2 in the morning and 2 in the evening.  Different Drs. have different opinions.  My nuerosurgeon wanted me to split it and my oncologist wanted me to do the 4 in the morning.  

            Are they going to do anything with this tumor?  I know it was originally gamma'd in Nov. are they waiting to see if it stabilizes?  When the steroids were destroying my body it was worth it to take the chance to cut out the deep met in my speech area.  I still have lost a few words but almost back to normal now.

            While I'm not happy with my last scans but over 6 months my lung nodule only grew 2mm. Not bad when you think that for that long of a time and no immune system.  It is being rechecked in 3 weeks to see if it grows. It has been there now for about 2 years, has grown about 4mm in the last 15 months. They are not sure yet if it is lung junk or melanoma.  

            My biggest concern is they aren't sure if the brain met is back or if it is radiation necrosis or scar tissue. That is also being checked in 3 weeks.

            They have watched my cortesol levels and they are back to normal. Been off of the Dex for 2 months now.  I still have some issues from the steroids but some of it is because I'm much older then you. Lots of inflammation.  Last time I saw my oncologist I told him I would never take the steroids again but I think a very short time would be different.  

            It takes months for the blood to be absorbed.  It only bled the one time but it was still there 4 months later when I had the crainectomy, not sure if some of it was absorbed.  I think the bigger issue for you is if it is still bleeding.  Many melanoma brain mets are vascular and that can be dangerous. 

            My first few weeks I had no issues on the steroids. Things to watch for:  blood pressure, sugar, if you go off make sure to wean slowly, your eyes (pressure and glaucoma or cataracts), watch your diet and exercise to not loose muscle mass. Some people have euphoria (they think all is fine, thankfully I had that) and some have depression and anger. Lots of mood swings. I also had thrush from the very first pill -ugh – and still am having issues from it.

            Let me know what your next step is.

            Linda

            lhaley
            Participant

              Lisa,

              I'm glad you got to go to Florida with your family!

              When I started they put me on 4 mgs but quickly I went to 8 mgs, but not for long.  Ask them if you are to do 4mgs in the morning or 2 in the morning and 2 in the evening.  Different Drs. have different opinions.  My nuerosurgeon wanted me to split it and my oncologist wanted me to do the 4 in the morning.  

              Are they going to do anything with this tumor?  I know it was originally gamma'd in Nov. are they waiting to see if it stabilizes?  When the steroids were destroying my body it was worth it to take the chance to cut out the deep met in my speech area.  I still have lost a few words but almost back to normal now.

              While I'm not happy with my last scans but over 6 months my lung nodule only grew 2mm. Not bad when you think that for that long of a time and no immune system.  It is being rechecked in 3 weeks to see if it grows. It has been there now for about 2 years, has grown about 4mm in the last 15 months. They are not sure yet if it is lung junk or melanoma.  

              My biggest concern is they aren't sure if the brain met is back or if it is radiation necrosis or scar tissue. That is also being checked in 3 weeks.

              They have watched my cortesol levels and they are back to normal. Been off of the Dex for 2 months now.  I still have some issues from the steroids but some of it is because I'm much older then you. Lots of inflammation.  Last time I saw my oncologist I told him I would never take the steroids again but I think a very short time would be different.  

              It takes months for the blood to be absorbed.  It only bled the one time but it was still there 4 months later when I had the crainectomy, not sure if some of it was absorbed.  I think the bigger issue for you is if it is still bleeding.  Many melanoma brain mets are vascular and that can be dangerous. 

              My first few weeks I had no issues on the steroids. Things to watch for:  blood pressure, sugar, if you go off make sure to wean slowly, your eyes (pressure and glaucoma or cataracts), watch your diet and exercise to not loose muscle mass. Some people have euphoria (they think all is fine, thankfully I had that) and some have depression and anger. Lots of mood swings. I also had thrush from the very first pill -ugh – and still am having issues from it.

              Let me know what your next step is.

              Linda

          Viewing 2 reply threads
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