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Bless you all for your caring responses to my plight :o) It is very difficult to know what to do for the best, and I think Doug that you are quite right and that I have to weigh up which is the most life threatening situation for me, this is not easy though because I really do think they're as bad as each other and the argument is yo-yoing in my head all the time!!
I have also shared my news with the LyP support group and had an interesting conversation with someone who developed another type of skin cancer after having a flu vaccine.
Dave, I hear what you're saying about getting the Doctor's past the fear but the bottom line is that we LyP'ers can't afford to put any extra load on our immune systems particularly when it is an intensive, attacking and repetative process like desensitisation.
I know that Dave has read about LyP but for those who don't know about it - a LyP'ers immune system is unique in that it keeps on and on killing cancerous tumours that continuously develop in our skin - nobody knows why this happens, usually with cancer the immune system eventually gives up and full blown cancer is the result. The problem with desensitisation is that the immune system would be taxed and could become overwhelmed and gave up the fight, then the cancer would take hold and spread and we would be at a far greater risk of developing one of the other types of lymphatic cancer as well, we are already at risk of this but it's only about 10/20%. You can perhaps now see the dilemma more clearly??
I have to say that my dematologist is an expert in his field and a leading light where LyP is concerned and I know that the reasons for his advise are based on scientific knowledge of LyP and it's relationship with the immune system. I think that the Immumnologist on the other hand is fearful and I understand that, LyP is a very rare disease and I know that he has no knowledge of it whatsoever. The likelihood of finding an immunologist with the dermatology and oncology knowledge required is, I think, zero. I have also sought information from a third medical professional, Marshall Kadin at the Beth Isreal Hospital, Boston (he is America's leading light on LyP and the keeper of the LyP registry) I asked him if he's ever come across anyone with both problems - this is what he threw into the pot:
Annie: We do have an article soon to appear in Archives of Dermatology which
suggests that LyP patients have an increased incidence of allergy and
asthma, i.e. an exaggerated immune response, but I have not heard about an
anaphylactic shock in this circumstance. I am glad that you recovered from
this reaction. I am passing on this information to my colleague, Dr. Clara
Curiel who conducted the research on allergy in LyP.
suggests that LyP patients have an increased incidence of allergy and
asthma, i.e. an exaggerated immune response, but I have not heard about an
anaphylactic shock in this circumstance. I am glad that you recovered from
this reaction. I am passing on this information to my colleague, Dr. Clara
Curiel who conducted the research on allergy in LyP.
I think that I just have to come to terms with the fact that in having LyP and anaphylaxis I am a true rarity (at last it's confirmed!!!! LOL) and will probably never find anyone in the same pickle and so won't know, unless I try it myself, what would be the outcome of desensitisation!
Annie :o)
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