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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

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.

Comments

  • I too have had lots going on since my transplant. I've got underactive thyriod, congestive heart failure, and still on a variety of tablets on the haematology side. And recently been put on epo injections for low red counts being anamia. Also hormone injections and vitamin b12. I feel like I take steps forward and get knocked back I dont know again I'm very lucky to be here. Has anyone else had similar problems.
  • Hi Beanie, I'm surprised I haven't replied to this sooner. I also have skin GVHD and can relate directly to the tales of waking up with a snowstorm of skin covering the bed sheets or when shaking my head. It's like a bad case of dandruff all over my body!! Thankfully after just over a year of ECP combined with oral steroids and topical steroid creams it seems to be coming under control and my skin feels almost back to normal.

    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.
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