The Leukemia & Lymphoma Society - Fighting Blood Cancers
69 Replies Latest reply: Apr 3, 2012 2:24 PM by maya RSS

gvhd of the skin

maya Registered Users
Currently Being Moderated

Hi Everybody.

 

I'm not sure where to begin. I've wanted to communicate with people who are living with the side-effects of SCT, of which I have two primarily (from an unrelated donor). There have been times I felt like I'm the only one going through GVHD, so little being shared on the subject by my medical team, but since discovering this forum I'm feeling less isolated. TY.

 

Just to give you a little background: I was diagnosed with AML on Halloween of '08. I was a career & family oriented individual with a wonderful husband (still by my side through thick & thin) and two teenaged boys. Pre-diagnosis, I considered myself a very health oriented vibrant young woman; athletic, lifetime non-smoker, & only moderate to light social use of alcohol leaning towards red wine. My diet consisted of primarily fresh vegetables & fruits, moderate dairy, cereals, eggs, and non-mammal derived meats. So a diagnosis of leukemia came way out of left field. I received my 1st SCT Feb. '09. I suffered no GVHD at all and was back on the tennis courts & bike trails 4 months later. I relapsed in July '09, receiving my 2nd SCT the end of July. Then GVHD began, first in the liver and then the skin. I'm aware that GVHD is an ally in my body's stronghold against leukemia, but often coping with this skin pain is overwhelming. Overwhelming! I've been following my protocol for soon to be 3 yrs. We tried photopheresis for 8 months, and it appeared to be effective, but had to stop treatment Dec. '10 because of repeated infections on the Triple Lumen Hickman requiring long stays in the hospital, several catheter reinstallations, and the resulting switch to a PICC line in my arm for labs and bi-monthly treatments. The PICC is considered too small a port for photopheresis.

 

My GVHD covers my entire body, can be discribed as a cross between sunburn and poison ivy, and the tightness of the skin around the joints and pressure areas makes mobility without pain very difficult. I have been unable to return to work because of lack of mobility and because the immunosuppressant drugs put me in danger of illness in what is a very customer/public intensive business. I still wear a mask in public places & at the hospital.

 

What I suppose I'm getting around to is: Has anyone suffering with GVHD of the skin been informed of or discovered ANYTHING that brings relief? I'm using a prescribed steroidal ointment, and using lots of "skin repair" lotion to keep my skin moist. The prescribed pain medication does nothing to relieve skin pain. I'm currently on 30 mg of prednisone per day, down from 120 mg a year ago. I've had skin cancer removed from my cheek and I'm scheduled to have more removed from my chest in a week. I've been informed that skin cancer is a side-effect of some of the medication I'm taking.

 

Thanks for any information. I wish you all Good Energies.

  • Re: gvhd of the skin
    Tex Registered Users
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    Your GVH certainly seems to be a worst case scenario.  I had skin GVH but never more than a little rash.  I had it in my mouth, too, but, again, that was just a patch compared to what you have.

     

    When I was in the hospital the brought me a jar of Hydrocerin.  I've never seen it in a store but it might be something you could Google.  Anyway, it's like pure lanolin, that's what they told me, and it is the best at dry skin.  I don't know if it would be something that could give you some relief but it might.

     

    I wonder about your pain medication.  What have they given you?  I'm curious if a nerve-focused pain med might help.  My mom had terrible gangrene on her feet during her last couple of months and they prescribed something called, like, Neuronin.  Something like that.  With the tight skin I'm thinking that might work.

     

    If you're out of neutropenia and your immune system has been online and working for two years, it seems to me you should be able to throw away the masks.  I'd talk to my doc about that.

     

    And don't worry.  I ate red meat (still do), too many sweets, drank like a fish in college while doing any drug someone offered me, I didn't exercise much and basically ate when I could and that was crap as often as anything else.  I doubt you were a bit more surprised to get a leukemia dx than I was.  It comes out of left field for all of us.

     

    I do hope you can get a handle on your GVH soonest.  Let us know how else we can help.

     

    Blessings

    • Re: gvhd of the skin
      maya Registered Users
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      Tex,

       

      I'd like to thank you for your reply. I really enjoy reading your posts, you are a breath of fresh air when is comes to this crazy disease that none of us asked for.

      My prescribed pain medication in oxycodone to take as needed, but it's never really helps with the skin pain.  I constantly keep lotion on my skin, I was using eucerin, but lubriderm seem to work just as well and is a little more affordable, I go through the lotion as this rash covers my whole body.  I use the prescribed ointment on the rash that's red, at least twice daily.  Cool water helps, but that's only temporary and then my skin dries out and I start the lubing up all over again.  I talked to my doctor today and he wants me to increase my predinisone for a few days then he's going to start me on Gleevecs on Tuesday, he said it's be found to help GVH of the skin.  I'll keep you posted.  Thank again for your input,

       

      Maya

      • Re: gvhd of the skin
        mamawarrior Registered Users
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        Maya , i am so sorry that you are experiencing such difficult gvhd. My son also had gvhd of the skin but certainly not to that degree. I was going to mention gleevec as it seems like a few with schleroderma on this forum have had pretty good success with it. I will try to find the post and attach it. Just wanted to wish you the best.

        • Re: gvhd of the skin
          mamawarrior Registered Users
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          Maya, try reading this thread with particular attention to "Bryan" and "momtorose" responses. The thread is rather long, i think 5 pages, but i really think it will help you.

           

          http://community.lls.org/thread/2771?start=0&tstart=0

        • Re: gvhd of the skin
          maya Registered Users
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          Thank you so much for the input.  I'm going to try the Gleevecs starting Tuesday, and we'll see how that goes. I sure hope it helps, I'd really like to get off these steroids. I've already lost 3 inches in my spine due to compression fractures, hmmm if I lose anymore height I may not be able to see over the steering wheel.  It's been a heck of a ride and I'm sure there's more peaks and valleys ahead.  At least I'm still here for the ride.  Thanks again

          • Re: gvhd of the skin
            KyGuy Registered Users
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            Maya,

             

            It does sound like your GVH is more advanced than a lot of us had.  In my case, benedryl helped more than anything.  I also used the creams but they only provided minor relief.  I hope you get some relief soon.

             

            Take care,

            Kelly

            • Re: gvhd of the skin
              maya Registered Users
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              Thanks Kelly,

               

              Benedryl has been my slight saving grace at night, mainly helps me sleep more than 2hrs in a row

               

      • Re: gvhd of the skin
        Tex Registered Users
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        My guess is that your oxycodone is, more specifically, oxycontin.  That's a time released version of oxycodone that is supposed to set a baseline of pain relief.  There should always be something else available, even a more immediate acting oxycodone, for what they call "breakthrough pain."  So you might want to talk to your doc about that.  There's no sense in hurting.

         

        Then again, I just re-read that you take it as needed.  Perhaps you need to talk to your doc about getting you some oxycontin.

         

        I've used Eucerin, too.  The name sounds similar but I think the Hydrocerin is much better.  I looked it up and there are a lot of places that sell it.  I don't know if it will help but I still use my leftovers for any bad cracked skin in winter and even put it in my hair as a cold "hot oil" treatment.  So it wouldn't hurt to order some in and try.  I'd've given you a link but there are so many places carrying it, I thought I'd suggest you Google "hydorcerin cream."

         

        I hadn't hear about Gleevec being useful against GVH.  At least I don't remember hearing it before.  But, hey, chemo brain here.

         

        Thank you for your kind words.

         

        Blessings

        • Re: gvhd of the skin
          maya Registered Users
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          Tex,

           

          I was on Oxycontin for quite a while, but I found it didn't help and it's much more expensive than oxycodone.  I'll see if I can locate that lotion.  From what I understand my doctor said the Gleevecs has been found recently to help GVH of the skin, I've been trying to research it a bit before I jump in.  Again thank for your help.

          Maya

  • Re: gvhd of the skin
    cincykate Registered Users
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    Hi Maya,

    I'm almost 4 years post transplant.  Although I had some GVHD of the kidneys and liver , my skin was the main organ affected.  Over the years my skin has had some improvement.  I still have skin tightening but the rashes and itching are pretty much gone!  I was on prednisone for quite some time too and have been off for close to a year now.  I still take cellcept and tacro to keep the gvhd at bay but those doses have been greatly decreased.

    My biggest suggestion is stretch, strech and strech some more. I took yoga and did what I could.  Your doctor could also prescribe PT.   I also found an all natural lavendar cream in the health food section of my grocery that was soothing since it didn't have any alcohol in it. I found the alcohol found in many lotions would really sting when my skin was its most sensitive.

    Peace,

    Kate

    • Re: gvhd of the skin
      maya Registered Users
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      Kate,

       

      Thanks for your encouraging words.  The thought of less pain and itching would be a blessing.  I know I need to decide to really stretch more, it just hurts so much.  The funny part is the pain has been worse in the past, but it's just been so long and it seems like it's never going to end.  I've read up a little on the Gleevecs, and it seems to help people with scheroderma, maybe that will help with the mobility issues I'm having, as my doctor seem to think.  We'll try.  Thanks again and good energies to you and yours.

       

      Maya

    • Re: gvhd of the skin
      maya Registered Users
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      By the way what is PT?  I've been going though various treatments for the past 3 years and still don't know all the abbreviations for everything yet.

      • Re: gvhd of the skin
        felursus Registered Users
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        Hi Maya, PT stands for physical therapy.  I'm a PT, (dx'd with AML in March of this year), and I agree that gentle stretching might help you.  PTs are medically trained, and many are also trained in alternative techniques such as yoga - but because of their professional education they are also aware of how to modify yoga (and other alternative types of treatment) to patients with serious medical issues. The fact that your skin is so tight and painful will naturally have caused you to limit movement.  When you do that, you are also limiting the range of motion in your joints - thus making the problem even worse.  You can ask your MD for a referral.

         

        I hope the Gleevec will help your awful skin GVHD.  I can only imagine the pain you've been in, but hopefully that will all be in the past soon.

        Karen

        • Re: gvhd of the skin
          maya Registered Users
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          Karen,

           

          Of course I can't believe I missed that one.  I had some PT about a year and a half ago when I was in the hospital, but for a different reason, long story.  I'm hoping I can get this pain to subside a little, and at least make it somewhat tolerable to stretch more.  My husband and sons are always pushing me to stretch, they'd like to see me back on the tennis and basketball courts someday.  Me too

           

          Good Energies to you and your family, thank you for your advice.

           

          Maya

  • Re: gvhd of the skin
    maya Registered Users
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    Just an update.

     

    I had some skin cancer removed today at the Clinic.  I was supposed to start taking Gleevecs, but after getting approval from my insurance company the cost is still about $770 for a 30 day supply.  Well along with all the other medication I'm taking, this is not an option.  I'm not sure what the plan is next.  My doctor is adjusting my prednisone, which I still haven't noticed much difference one way or the other.  The pain especially in the evening before bed is almost unbearable.  I spoke with my dermatologist today and he prescribed a stronger steroidal ointment, so hopefully that will help some.  My dermatologist seems to be a little frustrated because he says I should be able to do photopheresis from a peripheral line, but the Clinic requires a central line which the ports are actually larger than a Hickman.  I could deal with the time it's going to take for the gvh to work itself out if I could just have a little pain relief.  Thanks for listening.

     

    Maya

    • Re: gvhd of the skin
      tranier Registered Users
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      Maya - I am sooo sorry you are in so much pain.  Have you contacted the LLS for copay assistance?  If the Gleevec could possibly help with your skin issues, perhaps that is an option.  I wish pain relief for you and will keep you in my prayers - Tracy R.

      • Re: gvhd of the skin
        maya Registered Users
        Currently Being Moderated

        Tracy,

         

        Thanks for the suggestion.  I've checked with the co-pay assistance through LLS, from time to time, but funds are available for very specific conditions and GVHD is  unfortunately not one of them.  I'm going to check directly through the manufacturer.  The good news is the sterdoidal cream my dermatologist prescribed takes a little of the edge off of what I call my "hot spots".  I again appreciate everyones input.

         

        Maya

    • Re: gvhd of the skin
      Tex Registered Users
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      Besides the LLS some drug manufacturer's have programs to help folks afford the meds they need.  I assume it's a reduced cost, although knowing Big Pharma, they might just be willing to give you a loan.  But I imagine it's the affordable thing.  It's worth a call to whoever makes Gleevec.

       

      Did you talk to your doc about seeing a neurologist?  There might be some nerve damage they can address.

       

      Blessings

      • Re: gvhd of the skin
        maya Registered Users
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        Tex,

         

        I plan on calling the manufacturer.  I've had some luck a few years ago with drug help just that way.  I also have a social worker whose been wonderful through this long shall I call it "exciting journey?"   I'm not sure how a neurologist would help, but I've seen one due to a seizure I suffered at the end of 2009.  EEGs have all been normal since then and I haven't had a seizure since, but that's why I was taken off Prograff and put on something else.  Thanks for your thoughts.

         

        Maya

        • Re: gvhd of the skin
          Tex Registered Users
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          I'm thinking it sounds like your nervoous system might be involved.  A neurologist might be able to offer some guidance if that's the case.  I could cretainly be terribly wrong but I'm used to that.  The idea is to think in as big a picture as possible to try to find out what the heck is going on with you.

           

          I don't know if the National Bone Marrow Registry has a presrciption assistance program but they might be able to help or point you in a new direction for GVH help.  It's worth looking at. www.bethematch.org.

           

          Blessings

  • Re: gvhd of the skin
    Alyssa'smom Registered Users
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    My daughter has advanced systemic scleroderma due to cGVHD.  Gleevec has been a miracle as far as the tightness of skin and muscle tissue.  However, her bones and joints are still tight and very painful.  We're up to 400 mg neurontin and hydrocodone for pain.  She has taken 300mg of gleevec for two years and does 4 hours of physical therapy each week.  Something we just started using for pain/cramping is called Capzacin (you can get it OTC at Walmart).  It numbs the nerves enough for her to have temporary relief.

     

    Good luck, and I hope you find some answers!

     

    Jill

    • Re: gvhd of the skin
      maya Registered Users
      Currently Being Moderated

      Jill,

       

      So sorry for your daughter's pain.  It sounds like she's been dealing with her skin issues for quite a while.  I started off with prednisone to combat my skin gvhd, but that wasn't working, so I was doing photopheresis two days a week for approximately 8 months, and I feel it did help, but as I said in my original post I kept getting infections in my port.  Has your daughter tried photopheresis?  Strange how an insurance company will cover photopheresis for approximately $4000 a visit, but Gleevec costs less than one treatment and isn't covered completely.  Go figure.  I hope your daughter continues to improve, and I wish you good energies.

       

      Maya 

       

  • Re: gvhd of the skin
    maya Registered Users
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    Another visit to my doctor yesterday, we have ruled out Gleevecs, mainly due to the cost.  I've increased my steroids to 40 mgs per day, and that seems to have helped a little.  My skin is still tight especially at the joints, but I've been trying to stretch a lot more. The pain is more localized, around my upper thighs and butt, oh man, is it itchy too.  The steroidal ointment does help.  We also cannot go back to photopheresis because a Hickman cannot be placed on my chest due to the skin cancer I've had removed, so my doctor wants to start me on an IV called Rituximab, it's supposed to help GVHD.  Has anyone heard of it?  His goal it to try to keep my GVHD at bay and lower my prednisone. I'm really starting to feel like an experiment. It's just been two years of GVHD, and it sometimes feels like there's no end in sight.  I so want to stay optimistic, but some days are really difficult.

     

    Maya

    • Re: gvhd of the skin
      DebbieW Registered Users
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      Hi Maya,

       

      My husband had Rituximab after a T cell depleted allo transplant for a reactivation of the EBV virus, he tolerated the treatments well, although his WBC started to drop about 60 days after treatments. The docs attributed this drop in his WBC to Rituximab and he needed Neupogen shots for 10 days and then his WBC increased and is now on the low end of normal. If possible it would be great to try the drug with the least amount of serious side effects, I'm not familiar with Gleevec, but if that is the first option then maybe trying for some assistance would an option.

       

      Just a quick google, and maybe you have already looked at these links.

       

      This has a copyright date of 2004, 5 page pdf.

       

      http://ramoslink.info/pubs/GlivecPAP.pdf

       

      also

       

      http://www.internetdrugcoupons.com/Gleevec-Coupon

       

      Hoping you find the best treatment,

       

      Debbie

      • Re: gvhd of the skin
        maya Registered Users
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        Debbie,

         

        Thanks for your help.  I've done some research, well as much as I can find and I'm liking the possibilities with the Rituximab.  I'm going to go ahead and consent to the treatment, but it probably won't happen for a couple of weeks.  I'll let you know how it goes.  I hope your husband is doing well.

         

        Maya

        • Re: gvhd of the skin
          DebbieW Registered Users
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          Maya,

           

          You're welcome, just make sure they keep a close eye on your counts as his white count dropped about 60 days after treatments were finished, thought he had escaped that possible side effect.  We heard from another transplant patient who had Rituximab and he said he needed a few IVIG treatments afterwards, but I do not know for sure if it was due to the Rituximab. Maybe another question to ask your doctor???  My husband's IGG level was low in July and he had an IVIG treatment in early August, scheduled for another check up tomorrow and they'll probably test his IGG level again. Thanks, he is doing well and hoping that you get some relief.

           

          Debbie

          • Re: gvhd of the skin
            maya Registered Users
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            Debbie,

             

            I'm going to start treatment on 9/17/11.  You mentioned your husband needing IVIG afterwards, and his WBC dropped.  At this point my WBC are ranging from 10 to 11K just hanging around the high range, and I seem to need IVIG every couple of months.  By the way do you really know what IVIG is for?  I've never really received an explanation I've understood.  I'll keep you posted.

             

            Maya

            • Re: gvhd of the skin
              DebbieW Registered Users
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              Hi Maya,

               

              Great that you have a plan in place and that your white count is higher then his was when he started the Rituximab, I would think that should help???  His WBC was in the 4-5 range before treatment.

               

              The docs never mentioned Rituximab possibly lowering the IgG level another patient mentioned it to us, but his level had dropped enough 5 months later and he had a treatment in July. Not sure if it was due to the Rituximab or not, but your doctor should be able to give you an answer.

               

              Here is a good explanation of immunoglobulins and you can see why they do not want the levels to drop too much.

               

              http://www.webmd.com/a-to-z-guides/immunoglobulins

               

              Hoping you get some relief with the Rituximab. 

               

              Debbie

              • Re: gvhd of the skin
                maya Registered Users
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                Hi Debbie,

                 

                Thanks for the article, it gave a pretty clear explanation of immunoglobins.  Now looking at my labs, which I get drawn every other week, they all run low.  I understand now why they through in an IVIG treatment more often than I'd like. By the way I said in my last post I was starting the Ritruximab on 9/17 but I meant 9/19.  That's what you get when you're not looking at a calendar and guessing dates. Thanks again, and take care.

                 

                Maya

                • Re: gvhd of the skin
                  DebbieW Registered Users
                  Currently Being Moderated

                  Hi Maya,

                   

                  Then we'll be thinking of you on the 19th and sending positive thoughts your way ... keep your eye on the prize!

                   

                  Debbie

    • Re: gvhd of the skin
      Tex Registered Users
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      As Debbie said, they do apparently use Rituximab in and artempt to try to control GVH these days.  (They didn't in my day.)

       

      I think they often use it right before or after the SCT, but who knows what all applications they have.  But, you know, being an experiment isn't that bad a thing.  Sometimes they find something that works for you, even though they appear to be shooting in the dark.

       

      Keep us posted.

       

      Blessings

      • Re: gvhd of the skin
        maya Registered Users
        Currently Being Moderated

        Tex,

         

        I suppose you're right about it not being such a bad thing to be an experiment, especially if it can help others get through this crap as you so eloquently put it.  I just sometimes feels like it's such a long, long process, but we're still hanging in there aren't we?

         

        Good Energies to you and yours:)

         

        Maya

        • Re: gvhd of the skin
          Tex Registered Users
          Currently Being Moderated

          maya wrote:

           

          I just sometimes feels like it's such a long, long process, but we're still hanging in there aren't we?

          It is a long process.  I've spent over 10% of my 56 years dealing with leukemia and transplant on some stage or the other (see my upcoming post).  But hanging in there becomes our number one job.  That's easy to forget but it's true.  Every day you don't let the bastards get you down or just break even, that's a victory and should yield a peaceful night's sleep.

           

          Blessings

  • Re: gvhd of the skin
    maya Registered Users
    Currently Being Moderated

    Just an update.  I started treatment with Ritruximab last Monday, with no side effects during the IV.  I haven't noticed any changes in my skin, but I know it's early.  I'm optimistic, and hopeful, that this maybe a key to reducing my prednisone.  Thanks again for all your good energies, and I'll keep you posted.  My next treatment is 10/3.  Take care all

     

    Maya

    • Re: gvhd of the skin
      Tex Registered Users
      Currently Being Moderated

      Glad to know it's going well so far.  Please keep us updated as you walk this path.

       

      Blessings

      • Re: gvhd of the skin
        maya Registered Users
        Currently Being Moderated

        Thanks Tex,

         

        I'm actually seeing a change in color of my rash on my thighs especially.  Not as red, but more of a purplish brown, and a little less painful.  Any relief makes me smile.  Take care and enjoy the autumn colors wherever you are.

         

        Maya

    • Re: gvhd of the skin
      DebbieW Registered Users
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      Maya,

       

      Thanks for the update on your first treatment and happy to hear all went well and that you are getting a small amount of relief ... hopefully this will become a trend

       

      Debbie

      • Re: gvhd of the skin
        maya Registered Users
        Currently Being Moderated

        Debbie,

         

        Thanks for your encouragement.  I had my second treatment on Monday.  It all seems to be going well.  My WBC are holding just fine, and my hemoglobin is high enough to continue with phlibotomies.  My liver numbers have been high for nearly two years due to all the iron in my blood from all the transfusions given during and after my SCT's.  One really exciting thing is I had my Picc line removed, due to it being to tempermental, working when it feels like it.  This is the first time in three years I haven't had some kind of a line in my body, either a Hickman or a picc.  Exciting!!  Maybe there's some sun on the horizon.  Take care, and I hope the best for your husband and your family.

         

        Maya

        • Re: gvhd of the skin
          DebbieW Registered Users
          Currently Being Moderated

          Maya,

           

          That is great news about the Picc line, you must feel so free!!! Just keep an eye on those numbers in the next few months, then again my husband had Rituximab 4 months after transplant while his sytem was more fragile, so your numbers might not be as vulnerable. Thanks for the good wishes, preliminary report from the one year biopsy taken on Monday looks good.

          Hoping the Rituximab turns the corner for you with any GVHD and that the sun will soon shine

          Please post updates as you move along.

          Best to you and your family,

          Deb

          • Re: gvhd of the skin
            maya Registered Users
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            Oh yes, freedom.  A shower has never felt so good.  Now if I could just get this skin under control, that way I can take a shower longer that 10 minutes.  The problem with really bad gvhd of the skin is water is not your friend.  It dries the skin out quickly, but I keep the lotion handy and the steroidal ointment close by.  Next treatment Oct.17, I'll keep you posted.  Thanks for your thoughts.

             

            Maya 

            • Re: gvhd of the skin
              Tex Registered Users
              Currently Being Moderated

              There is an oil soap made by Aveeno, I think.  It's in a gold plastic bottle and is sold at Wal-mart and Walgreen's that I know of.  It helps a lot but it smells like dog shampoo.

               

              Still...

               

              Blessings

            • Re: gvhd of the skin
              maya Registered Users
              Currently Being Moderated

              Well I had my third treatment of Ritruximab on Monday.  The nurses say they are seeing an improvement, but I guess seeing that I live with this dry burning skin everyday I don't see much difference.  I also visited my dermatogist, and had two more biopsies, and more skin cancer  I just want to scream "when is this going to stop!'  Enough already.  Okay, well now that I blurted that out I feel better.  I have so much respect for all of you, we are a unique group of survivors.

               

              Maya .

              • Re: gvhd of the skin
                tranier Registered Users
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                Maya - Sending you gentle hugs..How brave you are!  Prayers for better days ahead!

              • Re: gvhd of the skin
                Tex Registered Users
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                I've missed the skin cancer bit.  I'm sorry but I'm hoping they're at least the type you can just cut off and not worry about.  Have they mentioned if it's secondary to your SCT in any way?

                 

                If they're seeing improvement, I'm figuring you'll be feeling it sooner than later.  Hope so, anyway.

                 

                Hang in there.  It's going to get better.

                 

                Blessings

                • Re: gvhd of the skin
                  maya Registered Users
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                  I'm hangin in there Tex.  The skin cancer I was told is just another side effect of the drugs and the skin gvh.  It has been the kind that's removed pretty easily.  Again just feeling like, it would be nice to have a break.  Also when they remove the cancer it takes my poor skin quit awhile to heal, and it hurts like the dickens.   Thanks for your kind words.

                   

                  Maya

                  • Re: gvhd of the skin
                    Tex Registered Users
                    Currently Being Moderated

                    I understand wanting a break and I didn't have stuff pile up like you did.  I hope you get one soon.  You deserve it.

                     

                    Blessings

        • Re: gvhd of the skin
          Tex Registered Users
          Currently Being Moderated

          maya wrote:

           

          This is the first time in three years I haven't had some kind of a line in my body, either a Hickman or a picc.  Exciting!!

          Wow, I only had mine for 11 months and I was so glad to finally have that thing out of me.  Congrats!

  • Re: gvhd of the skin
    jmccrary Registered Users
    Currently Being Moderated

    Maya, I suffered with active GVH for about 9 years. My body was a wreck. Anywhere there was friction or pressure on my body resulted in blistering. It was so bad, I was in the burn unit at Vanderbilt. They tried everything you mention and more. I ate painkillers, the good stuff, like popcorn. I also went to a GVH clinic at Johns Hopkins. To deal with the blisters I wore a special bandage that covered my whole back. I also had blisters all around my waist, so I couldn't wear underwear. I wore as little clothes as possible. so I didn't get out much. I also had the reduced mobility in my joints. It got so bad I was in a wheelchair for quite a while. In the end, I think the GVH simply "burned itself out". I still suffer from reduced range of motion. My skin is still very sensitive. I don't go out in the sun and I only wear cotton clothing. If you want to speak, my number is at the bottom.

     

    Jackson McCrary

    (W)ork

    (A)ttitude

    (F)aith

    • Re: gvhd of the skin
      maya Registered Users
      Currently Being Moderated

      Thanks for your reply.  It sound like I just have to hang on for the ride.  I'm so sorry for what you endured, but I understand.  I haven't suffered from the blisters as you described, but I go commando (no underwear) most of the time and wear cotton clothing most of the time.  I've just about thrown my jeans out the window.  Maybe someday:) I was just wondering did you suffer from any skin cancer?  If you don't mind me asking how older were you when you got your dx? 

       

      Maya

  • Re: gvhd of the skin
    maya Registered Users
    Currently Being Moderated

    It's been 4 treatments so far with the rituximab, and I am in a little less pain than when I originally posted.  My skin doesn't seem to be as red as before.  I'm still on 40mg of predisone per day, but I anticipate the doctors trying to lower that dose soon.  My counts are just fine, so it's a keep your fingers crossed kind of thing, just like any other treatment.  You know hang on and see if it works!

     

    Maya

    • Re: gvhd of the skin
      bradnchris Registered Users
      Currently Being Moderated

      Maya,

      I have not been on the boards of late, but I happened to read your link. My husband, Brad, had his transplant Aug. 08. He has battled various forms of GVH, including skin, since that time. He was almost totally off the immune drugs this past August when he had a resurgence of skin GVH, which is essentially identical to what you are describing. It has limited his mobility because of the pain and the tight skin over the extensor surfaces. They put him back on the rapamune, which has only helped minimally. He has also undergone numerous skin biopsy and subsequent excisions of squamous cell carcinoma. This last one ended up having some peri-neural involvement (following the tract of a nerve) and now he is having radiation for that. It seems endless for him sometimes. The reason I have answered you, though, is that he has just started a fairly new investigational treatment for his skin GVH. He is receiving low doses of a rather old chemotherapy drug (pentostatin). He has only had one infusion so far and it is too soon to know if it will help. He receives them every other week. There are about 6 other patients in the study at our transplant center (Moffitt hospital in Tampa Florida). So far, 5 of the 6 have shown "statistically significant" improvement in their skin GVH (scleroderma-type). Just thought I would share this.

      Chris

      • Re: gvhd of the skin
        maya Registered Users
        Currently Being Moderated

        Chris, 

        Thanks for your reply.  Please keep me posted on Brad's progress, I really hope it helps.  I know what you mean about does it ever stop, but I guess we just have to not give up and keep going.  I keep reading that this will burn itself out, but in the meantime all I can say is it isn't easy by any stretch.

         

        Maya

    • Re: gvhd of the skin
      Tex Registered Users
      Currently Being Moderated

      Sounds like a great report Maya.  I hope the improvement continues and picks up speed.

       

      Please keep us in the loop.

       

      Blessings

  • Re: gvhd of the skin
    DebbieW Registered Users
    Currently Being Moderated

    Maya,

    Checking in to see how things are going and hoping the Rituximab had a postivive effect on the skin GVHD. A possibly interesting note, and without any input from a doc, but my husband had a urinary problem in January. This began right after an IVIG treatment (the first at our our local hospital) so we thought it might be connected to the treatment. After many tests and two antibiotics it cleared up, but ... his WBC began to rise.  Maybe it was not just just the Rituximab that lowered his WBC?  So I wonder if there had been something lingering for awhile??? I did not go into the room for the final test, a cystoscopy, so my questions are still unanswered for now. Sometimes my questions take a back seat to things moving forward, but I will ask this question when we see his transplant doc in a couple of weeks.

    Just catching up and wishing that you are doing well,

    Debbie

    • Re: gvhd of the skin
      maya Registered Users
      Currently Being Moderated

      Debbie,

      I haven't been on the boards lately, just trying to live..... My skin has improved some, but I've been dealing with some skin cancer which the doctors seem to blame on the GVHD also. My blood counts have been holding pretty well.  A new developement, I have to have a BMB on monday because they did some tests last week that were inconclusive.  One test came back 100% Donor and then today they called and now it seems I am not.  Scary because I've been through this before when I had to have a second SCT 2 years ago.  I guess with everything everybodies been through on this board it's comforting to know I'm not the only one.  My WBC never seemed to be affected by the Rituximab.  The other thing I've been dealing with is a respitory issue, coughing up some nasty flem for the past couple months.  They did a broncoscopy and ran some tests and they came back negative.  So when things start happening I don't think anybody really knows what to blame it on.  Thanks for the contact, and I'll let you know what happens with that biopsy.

      Maya

      • Re: gvhd of the skin
        DebbieW Registered Users
        Currently Being Moderated

        Hi Maya,

        Thanks for the reply, while I'm happy to hear of some improvement in the skin GVHD, I'm sorry to hear that you are still dealing with skin cancers issues, another BMB and respiratory issues. Also I certainly understand the need to take a break from the boards and just trying to live and move forward.

        Wishing you the best outcome with the BMB, I'll be sending you positive thoughts on Monday.

        Best regards,

        Debbie

        • Re: gvhd of the skin
          maya Registered Users
          Currently Being Moderated

          Thanks for the positive thoughts.  I had the BMB yesterday with no problems, never any fun though.  I won't have the results for a couple days.  The Doctor is a little confused because my blood counts have been pretty normal for the past several months, so he says he's leaning towards the side of precaussion, and the biopsy is just to see what's really going on.  I can only hope for the best.  Always a little uneasy when it comes to BMB's.  The first time I ever had one, it hurt like heck, and AML was the diagnosis....still scary everytime.  I'll let you know the results... take care.

           

          Good Energies

          Shelly

      • Re: gvhd of the skin
        Tex Registered Users
        Currently Being Moderated

        I'm glad to hear from you, Maya.  I wish your lungs were better.

         

        My bet is your chimera is fine.  It's good they're being cautious, I'm glad for that.

         

        Please do let us know when they've done the tests.

         

        Blessings

        • Re: gvhd of the skin
          maya Registered Users
          Currently Being Moderated

          Tex,

          The lungs have improved some.  My WBC are a little elevated, maybe they're working on my lungs:) I had my BMB and I'll let you know the results by the end of the week.  My fingers are crossed.  Take care.

           

          Shelly

          • Re: gvhd of the skin
            Tex Registered Users
            Currently Being Moderated

            Keep in mind I've had at least three BMBs that weren't checking up on my AML.  We were trying to figure out why my counts went whacky but they were always good enough that we knew the disease wasn't returning.  There are other purposes than a disease check to do a BMB.

             

            I'm sure the WBC are elevated because of your lungs.  I'm glad they're a little better.  Just keep on keeping on.

             

            Blessings

            • Re: gvhd of the skin
              maya Registered Users
              Currently Being Moderated

              My doctor just called.  The BMB is "all clear".  What a relief!! Good Energies to all!!!

              Maya

              • Re: gvhd of the skin
                DebbieW Registered Users
                Currently Being Moderated

                What great news!!!

                 

                And glad to hear the biopsy was not too bad, thanks for the update. Sending you healing thoughts that things just continue to improve

                 

                Debbie

              • Re: gvhd of the skin
                Tex Registered Users
                Currently Being Moderated

                I love being right.

                 

                I'm really happy for you but not the least bit surprised.  Congrats.

                 

                Blessings

              • Re: gvhd of the skin
                Hammerdog Registered Users
                Currently Being Moderated

                Hi Maya

                My cGVHD of the skin calmed with more prednisone.  I had steroid skin cream too.  I used eucerin moisturizer and I think it worked better and felt better.  I still have really dry skin.  When I have a falre up it feels ike my head is just going to desiccate and blow away.  My lips are always cracked and my eyes are dry too.  I stay well hydrated and apply aquaphor lip ointment constantly and my lips don't imrove much.

                 

                  There is a listserv group that has hundreds of patients who have cGVHD.  It has been very helpful to me.  There are people there who have had GVH for over 10 years.  If you can/t find them in a search write me at callahan_michael at sbcglobal dot net and I will send you a link.  Try this email,

                 

                 

                gvhd-request at listserv dot acor dot org


                  Your original post when you beat yourself up for getting leukemia is understandable.  I too was a totally organic, athletic, and sinewy strong all my life.  Cancer only takes one cell to mutate.  Every cell after that is a clone.  We were just unlucky and no amount of healthy can predict it.  I hope you can make it outside the cancer gulag.  I tell myself the same thing.

                 

                  Mike

                • Re: gvhd of the skin
                  maya Registered Users
                  Currently Being Moderated

                  Mike,

                  Thanks for your input.  I'll check out that website.  Since I first posted this thread back in August, my skin had improved quite a bit.  It still itches like crazy especially at night, and it's very tight around my shoulders, neck and knees, and it's very dry, but no where near as painful as it was when I originally posted.  I'm still on 40mg of prednisone a day, but I know it has to do with my liver number's also.  My skin is still a mess, but the skin cancer seems to have taken a break. I've been using steroid ointment (keeps the skin more moist then the cream) and I now use lots of Palmer's cocoa butter body oil, and shea butter lotion. I've used Eucerin in the past, but it's so expensive, and I really like being able to apply the oil after a shower.  As far as my lips, well yes they are always dry, and I've yet to find anything that works for any length of time.  Just plain old chap stick works the best for me, I just make sure I have some with me everywhere I go.  I've read alot about dry eyes, funny mine seem to water a lot, especially when I eat.  I'm finding out as time goes on everyone is different with what they deal with.  One day at a time. 

                   

                  I would have rather skipped all the excitement and gone on living without Leukemia, but now that I've made it this far, it's time to enjoy life.  It's not going to be the same as it was before, but it's still worth living.  Hang it there and love every single day.  Good Energies to you and yours!

                   

                  Maya

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