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Re: Pat's Update April 2011

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  • pikn4u
    Hi Pat, This is Kathy from Mo. in USA. We were in MSN group togeather. Glad your doing good,I am still doing good with the CTCL/MF, still 1A. Arthritis not
    Message 1 of 9 , May 16, 2011
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      Hi Pat, This is Kathy from Mo. in USA. We were in MSN group togeather. Glad your doing good,I am still doing good with the CTCL/MF, still 1A. Arthritis not so good though, having problems walking. Just got the update thing in my email box so thought I might write and see how you were doing and have you heard from any of the others? Our old bunch? Kathy
    • PatD
      Hi Kathy - Good to hear from you and glad you re doing well (at least the MF). That email took a long time to reach you, but glad you eventually got it. Re the
      Message 2 of 9 , May 16, 2011
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        Hi Kathy - Good to hear from you and glad you're doing well (at least the MF).

        That email took a long time to reach you, but glad you eventually got it.

        Re the "Old Crowd." Haven't heard from any of them for a very long time, but am working on the assumption that no news is good news. So if any of the "Old Crowd" read this - how about letting us know how you're getting on?

        My skin is now very thin. I brush against something and immediately have a large area of bleeding under the skin. Otherwise the radiation seems to have beaten back much of the MF, so what you gain on the swings, you lose on the roundabouts. Better to gain on the swings in this instance!
      • george janiszewski
        Well hello all just curious is arthritis a symptom of mf ??...I have given up om uv light as it was doing nothing to my shin..still ichey and have large
        Message 3 of 9 , May 16, 2011
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          Well hello all just curious is arthritis a symptom of mf ??...I have given up om uv light as it was doing nothing to my shin..still ichey and have large patches of sometime white skin that my derm said was not that bad but these are geting more larger in area and more of them..so steroid cream for a bit and it seems to settle down...

          --- On Mon, 5/16/11, pikn4u <pikn4u2@...> wrote:

          From: pikn4u <pikn4u2@...>
          Subject: [mycosisfungoidesint] Re: Pat's Update April 2011
          To: mycosisfungoidesint@yahoogroups.com
          Received: Monday, May 16, 2011, 11:22 AM

           

          Hi Pat, This is Kathy from Mo. in USA. We were in MSN group togeather. Glad your doing good,I am still doing good with the CTCL/MF, still 1A. Arthritis not so good though, having problems walking. Just got the update thing in my email box so thought I might write and see how you were doing and have you heard from any of the others? Our old bunch? Kathy

        • PatD
          The question often arises as to just what kind of cancer MF is. If I m correct, it starts when white blood cells create lymphocytes (so it s a cancer of the
          Message 4 of 9 , May 17, 2011
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            The question often arises as to just what kind of cancer MF is. If I'm correct, it starts when white blood cells create lymphocytes (so it's a cancer of the blood?) and these mature in the thymus where some turn malignant, begin circulating around the lymphatic system (lymphatic cancer?) and head for the skin where they congregate, multiply and work their way through the skin (skin cancer?). There are over 100 autoimmune diseases and about 70 different types of non-Hodgkins lymphomas. To my layman's mind, there is a connection although it would seem not to the medical profession.

            When this group was with MSN, two surveys were conducted and neither showed any evidence of members having any commonality of auto-immune diseases and MF. I have RA and Sjogrens (dry palate and tongue) which are AI disorders - but are they related? Don't know...

            I take a devious delight in flummoxing people when they ask what I have. Yesterday I played golf with an MD and two others who know my history and treatment. She asked what I had and when I replied "Mycosis Fungoides - do you know what it is?" she was trying to find the meaning of the words. When she hit on Fungus, I relented and told her Cutaneous T-Cell Lymphoma and she then could figure it out... But she didn't know of it!

            When golfing, I try to hide from the sun (difficult!), which is not unusual in this country, but often leads to questions. I freely tell people what I have and all my friends accept this and comment from time to time along the lines of "Your skin is looking good" or the opposite when I come off the course and am a bit sizzled.

            Other than now having extremely delicate skin which tears easily and one little bump causes dramatic bleeding under the skin which looks ugly, the radiation has definitely knocked back the MF. Loads of solar keratoses which are frozen off regularly, but to date am enjoying no itching, which is bliss!
          • Lovita Crasto
            Hi Pat   Am usually the passive one in this group. But cant help and relate to your doubts. Iv had mine for many months now. After I was officially declared
            Message 5 of 9 , May 17, 2011
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              Hi Pat
               
              Am usually the passive one in this group. But cant help and relate to your doubts. Iv had mine for many months now. After I was officially declared in remission in April 2009, I started seeing spots of Vitiligo, Initially I (and my doctor) thought it was my burnt skin (after PUVA), but now I have spots in places where there were no burns at all. Vitiligo is an AI too. One AI suppresses and other gets active!! Vitiligo is not painful its just disfiguring and I am glad I have vitiligo over MF to deal with, for now atleast. However my medically educated doctor does not agree with me and firmly believes that both the vitiligo and MF have no connection. May be someone out there needs to do lil bit more research on MF,
               
              Regards
              Lovita 

              --- On Tue, 5/17/11, PatD <pdreyer@...> wrote:

              From: PatD <pdreyer@...>
              Subject: [mycosisfungoidesint] Re: Pat's Update April 2011
              To: mycosisfungoidesint@yahoogroups.com
              Date: Tuesday, May 17, 2011, 2:09 PM

               
              The question often arises as to just what kind of cancer MF is. If I'm correct, it starts when white blood cells create lymphocytes (so it's a cancer of the blood?) and these mature in the thymus where some turn malignant, begin circulating around the lymphatic system (lymphatic cancer?) and head for the skin where they congregate, multiply and work their way through the skin (skin cancer?). There are over 100 autoimmune diseases and about 70 different types of non-Hodgkins lymphomas. To my layman's mind, there is a connection although it would seem not to the medical profession.

              When this group was with MSN, two surveys were conducted and neither showed any evidence of members having any commonality of auto-immune diseases and MF. I have RA and Sjogrens (dry palate and tongue) which are AI disorders - but are they related? Don't know...

              I take a devious delight in flummoxing people when they ask what I have. Yesterday I played golf with an MD and two others who know my history and treatment. She asked what I had and when I replied "Mycosis Fungoides - do you know what it is?" she was trying to find the meaning of the words. When she hit on Fungus, I relented and told her Cutaneous T-Cell Lymphoma and she then could figure it out... But she didn't know of it!

              When golfing, I try to hide from the sun (difficult!), which is not unusual in this country, but often leads to questions. I freely tell people what I have and all my friends accept this and comment from time to time along the lines of "Your skin is looking good" or the opposite when I come off the course and am a bit sizzled.

              Other than now having extremely delicate skin which tears easily and one little bump causes dramatic bleeding under the skin which looks ugly, the radiation has definitely knocked back the MF. Loads of solar keratoses which are frozen off regularly, but to date am enjoying no itching, which is bliss!

            • alliance15
              Pat, Glad to see everybody is OK! I too had a little flare up on my left arm. Thought oh boy huge patch of MF. It grew and it itched like crazy. I used vinegar
              Message 6 of 9 , May 17, 2011
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                Pat,
                Glad to see everybody is OK! I too had a little flare up on my left arm. Thought oh boy huge patch of MF. It grew and it itched like crazy. I used vinegar and H202 and it calmed down only to flare back up again. When I used just the H202 and a paper towel and let it soak on the patch which was at least 7 inch by 6 inch and wow it stung and itched. Tons of little white spots came to the surface and they were all crested and white. This aggravation went on for about two weeks. Finally I put clobetasol on the area and bam it all went away after the first application. I think I had poison oak instead. It appears they are using this cream now for this problem too.

                Once in awhile I will itch in certain areas of my body, if I eat the wrong foods, but it all subsides once I stop eating these bad tasty foods. I guess our next challenge will be the radiation now coming from Japan and circling the globe. I know more good news for those with auto immune diseases. I would recommend stopping all dairy and wheat and peanuts for those with arthritis though. This just makes sense.

                All is well..just don't eat the food or you might glow!

                --- In mycosisfungoidesint@yahoogroups.com, Lovita Crasto <lovita_crasto@...> wrote:
                >
                > Hi Pat
                >  
                > Am usually the passive one in this group. But cant help and relate to your doubts. Iv had mine for many months now. After I was officially declared in remission in April 2009, I started seeing spots of Vitiligo, Initially I (and my doctor) thought it was my burnt skin (after PUVA), but now I have spots in places where there were no burns at all. Vitiligo is an AI too. One AI suppresses and other gets active!! Vitiligo is not painful its just disfiguring and I am glad I have vitiligo over MF to deal with, for now atleast. However my medically educated doctor does not agree with me and firmly believes that both the vitiligo and MF have no connection. May be someone out there needs to do lil bit more research on MF,
                >  
                > Regards
                > Lovita 
                >
                > --- On Tue, 5/17/11, PatD <pdreyer@...> wrote:
                >
                >
                > From: PatD <pdreyer@...>
                > Subject: [mycosisfungoidesint] Re: Pat's Update April 2011
                > To: mycosisfungoidesint@yahoogroups.com
                > Date: Tuesday, May 17, 2011, 2:09 PM
                >
                >
                >  
                >
                >
                >
                > The question often arises as to just what kind of cancer MF is. If I'm correct, it starts when white blood cells create lymphocytes (so it's a cancer of the blood?) and these mature in the thymus where some turn malignant, begin circulating around the lymphatic system (lymphatic cancer?) and head for the skin where they congregate, multiply and work their way through the skin (skin cancer?). There are over 100 autoimmune diseases and about 70 different types of non-Hodgkins lymphomas. To my layman's mind, there is a connection although it would seem not to the medical profession.
                >
                > When this group was with MSN, two surveys were conducted and neither showed any evidence of members having any commonality of auto-immune diseases and MF. I have RA and Sjogrens (dry palate and tongue) which are AI disorders - but are they related? Don't know...
                >
                > I take a devious delight in flummoxing people when they ask what I have. Yesterday I played golf with an MD and two others who know my history and treatment. She asked what I had and when I replied "Mycosis Fungoides - do you know what it is?" she was trying to find the meaning of the words. When she hit on Fungus, I relented and told her Cutaneous T-Cell Lymphoma and she then could figure it out... But she didn't know of it!
                >
                > When golfing, I try to hide from the sun (difficult!), which is not unusual in this country, but often leads to questions. I freely tell people what I have and all my friends accept this and comment from time to time along the lines of "Your skin is looking good" or the opposite when I come off the course and am a bit sizzled.
                >
                > Other than now having extremely delicate skin which tears easily and one little bump causes dramatic bleeding under the skin which looks ugly, the radiation has definitely knocked back the MF. Loads of solar keratoses which are frozen off regularly, but to date am enjoying no itching, which is bliss!
                >
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