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CLL Life

by Anonymous

20 April 2011 at 13:44


I was writing to a friend who commented to me about follicular cancer and their management protocol and that of CLL,  Having now identified the CLL type I carry and it's stage and my understanding of the time ahead for me. I wrote a note suggesting that it is not a short time for me and about a coincidence in her follicular comment. What amazed me was that a simple typo in my response may have emphasised my new way of thinking! I'm sure she won't mind me posting my writing.


Not a short time, just perhaps different expectations, my markers currently identified by tests give a median of 7-9 obviously this is the middle line, so level of progression at diagnosis and other markers yet to be tested for may play a part good or bad. I hope to have these tests on my next visit.

On the follicular note, coincidentally my local treatment and research centre at UHW, announced on TV last night that they have discovered a management treatment for follicular sclerosis, this is where it gets really bizarre, apparently the chemical agent was discovered in the soil of Easter Island and matched as the agent required to counter the effects of the gene found to be defective in people suffering with this condition. It stops their tumour progression and is also proving to reduce  them in size!!! A different dissorder again I know, but it shows what is out there.


On that note, medical research into managing Chronic lymphocytic Leukaemia is moving on at such a pace changes in options will soon appear at the bedside. For me as a young patient I may have the last resort option of a donor stem cell transplant, if and when all else fails. Have just got to find my brothers as they are my most likely match! LOL I have plenty of time, I worry that as CLL can be familial, having them test may find something that they did not need to know about yet. As CLL remains indolent for many years before it rears it's head, the trauma of the small chance of one of them having it , and ruining their outlook on life, is something I grapple with constantly.


In short it's not a problem for me knowing now, mine is progressing and it has made me aware, it's the new Me now. Not what was a major change to the before, so I have different expectations, They have become a part of life, as the disease has, lets face it more of my lymphocytes are now the genetically altered version, but they are still me. Life is god. Take care   



I am not suggeting that I protect the mutant B cells, just live with them as apart of me while I have to and enjoy life to the full.

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