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Just to introduce myself
Hello, I was diagnosed with Mantel Cell Lymphoma in March 2007 and after a year of chemo (FCR) was deemed to be in Clinical Remission.
Yippee - I thought - I'm cured.
Apparently I misunderstood. Clinical Remission just seemed to mean that I didn't have cancer at that time. My first year was handled in Queens Hospital in Romford and then I was transferred to Barts, which I thought was because they had acted as a second-opinion for Queens. When I saw the Prof. at Barts I was told that it was more a case of WHEN it came back rather than IF. A bit of a roller coaster.
I was given various options - which was horrid because I didn't have any experience of balancing the risk of a treatment against its possible benefits.
May 2008 I had a stem cell transplant from Anthony Nolan as none of my sibling matched.
I had a slight recurrence of the lymphoma mid 2008 but that was treated with just a few doses of Rituximub.
Since then I have had instances of GVHD of varying severity and in various parts of my body. Nowadays, I can laugh at how my skin peeled off of my feet, how I could generate a snowstorm just by shaking my head ..... Today I have hardly any tears or saliva - but that is usually manageable. My biggest challenge at present is GVHD of the lungs which they are trying to reduce by 1/4 strength Imatinab, ECP treatments and IV Immunoglobulin. Fingers crossed that something gets on top of this because I am unable to walk more than a few yards without using an old-lady's rollator!
Anyway, that's me. Don't want to sound moany because without my transplant i would probaly be dead so side effects are really a minor inconvenience.
Yippee - I thought - I'm cured.
Apparently I misunderstood. Clinical Remission just seemed to mean that I didn't have cancer at that time. My first year was handled in Queens Hospital in Romford and then I was transferred to Barts, which I thought was because they had acted as a second-opinion for Queens. When I saw the Prof. at Barts I was told that it was more a case of WHEN it came back rather than IF. A bit of a roller coaster.
I was given various options - which was horrid because I didn't have any experience of balancing the risk of a treatment against its possible benefits.
May 2008 I had a stem cell transplant from Anthony Nolan as none of my sibling matched.
I had a slight recurrence of the lymphoma mid 2008 but that was treated with just a few doses of Rituximub.
Since then I have had instances of GVHD of varying severity and in various parts of my body. Nowadays, I can laugh at how my skin peeled off of my feet, how I could generate a snowstorm just by shaking my head ..... Today I have hardly any tears or saliva - but that is usually manageable. My biggest challenge at present is GVHD of the lungs which they are trying to reduce by 1/4 strength Imatinab, ECP treatments and IV Immunoglobulin. Fingers crossed that something gets on top of this because I am unable to walk more than a few yards without using an old-lady's rollator!
Anyway, that's me. Don't want to sound moany because without my transplant i would probaly be dead so side effects are really a minor inconvenience.
Comments
Initially mine was just dry skin all over my body, and my hands and face seemed to suffer the most, but I got quite a severe attack on my feet which left them extremely dry, sore, and with cracking, flaking skin. It got to a stage that I could barely walk because of it.
I haven't suffered with GVHD anywhere other than my skin, so I'm curious to know whether yours in your lungs and other areas came along at the same time as your skin or later. Like you I think the skin GVHD is an inconvenience but is manageable, so I'm thankful that I don't have it any worse, and that at the end of the day I am still alive and healthy.