1st June 2005
Tip2mol,
Thank you so much for your concern and understanding. You have been great. I want to start by saying I do not have Cutanious or the skin form of this disease. I do believe when I was a kid I was diagnosed with bumps and marks that my doc said were from an allergy and sent me on my way. They went away and we suspected it was from a litter of cats. Years later I became dermatographic at times. I left it untreated during like high school years and they stared getting less frequent until a few years later. I have not had an episode since then. At this time now I have had absolutely no sign of cutanious for years.
As far as the chance of having Mast cell leukemia, they were completely terrified of that too at first. Wile testing the bone marrow for Masto, they tested for that too. The Leukemia test came back negative though. It seems that my specialist that I seen later told me that in his carrier of over 200 patients he had only seen 3 or 4 with severe bone problems as mine and that they were much older. It did at times affect my stomach and intestines as most with it. That has for the most part gone away since they put me on Famotidine. Thankfully most of the tests they have done for my internal organs seem to show little if any damage from what they can see so far. I am taking a ton of different things including antihistamines and certain vitamin and mineral supplements. They say the Interferon though is to hopefully reduce and or hold this thing at bay before it spreads to the organs. Today I go for another chemo drug I.V. treatment called Aredia. It’s a bone builder used for bone cancer. My newest drug now is a blood pressure med to counter the effects of all this other junk.
As far as its effects on my life, that’s a loaded question. Firstly you hate the pain it brings to your family and those who love you. That is worse than the physical pain. My condition is noticeable because my back is a bit hunched right now. I seem to make some people uncomfortable now so they avoid me. They say I’m not disabled but can’t lift anything because I may become paralyzed? Just what most employers want to hear right? As far as all the other symptoms who knows. They say masto can make you tired and drained. They say the same thing about Interferon. Ever since the interferon I feel like I haven’t slept no matter how many hours I lay in bed. Next, I won’t go into the all the unbelievable terrible losses and deaths of both parents ect… I have been through last year along with being diagnosed with this and now I have lost my job. They tell me my insurance will be up in August and my meds alone are around $3,500 a month. If I could get someone to hire me their insurance wont pick up my existing incurable disease. Unemployment or disability won’t make the bills either so I may loose my home next. Enough losses! Your PRAYERS are very appreciated here too. By the way did you know that stress is also a trigger to release tryptase and histamine? Interferon can make people extremely depressed and suicidal also. At times I mood swing a little bit and may become a little weepy. Thank God I have not been that low or bad even once though. The funny thing is everyone asks, “How I can keep smiling wile walking hunched in pain and with all I have been through?” I say how can I not? I go to a Cancer center monthly seeing people and even kids having all kinds of chemo for all kinds of Cancer. There is always someone worse off and would trade places with you. I still Love my life and my family. I just hope it gets better soon and stops turning to losses for me. I am so sorry for dumping or letting this seem too personal but you asked how it effected my life.
As for you, I never meant to seem pushy. I am just a bit concerned for anyone who may have this as you can see why now. My prayer for you is that you do not have this and that they find what is giving you trouble and fix it.
God Bless and thanks for everything.
John
Thank you so much for your concern and understanding. You have been great. I want to start by saying I do not have Cutanious or the skin form of this disease. I do believe when I was a kid I was diagnosed with bumps and marks that my doc said were from an allergy and sent me on my way. They went away and we suspected it was from a litter of cats. Years later I became dermatographic at times. I left it untreated during like high school years and they stared getting less frequent until a few years later. I have not had an episode since then. At this time now I have had absolutely no sign of cutanious for years.
As far as the chance of having Mast cell leukemia, they were completely terrified of that too at first. Wile testing the bone marrow for Masto, they tested for that too. The Leukemia test came back negative though. It seems that my specialist that I seen later told me that in his carrier of over 200 patients he had only seen 3 or 4 with severe bone problems as mine and that they were much older. It did at times affect my stomach and intestines as most with it. That has for the most part gone away since they put me on Famotidine. Thankfully most of the tests they have done for my internal organs seem to show little if any damage from what they can see so far. I am taking a ton of different things including antihistamines and certain vitamin and mineral supplements. They say the Interferon though is to hopefully reduce and or hold this thing at bay before it spreads to the organs. Today I go for another chemo drug I.V. treatment called Aredia. It’s a bone builder used for bone cancer. My newest drug now is a blood pressure med to counter the effects of all this other junk.
As far as its effects on my life, that’s a loaded question. Firstly you hate the pain it brings to your family and those who love you. That is worse than the physical pain. My condition is noticeable because my back is a bit hunched right now. I seem to make some people uncomfortable now so they avoid me. They say I’m not disabled but can’t lift anything because I may become paralyzed? Just what most employers want to hear right? As far as all the other symptoms who knows. They say masto can make you tired and drained. They say the same thing about Interferon. Ever since the interferon I feel like I haven’t slept no matter how many hours I lay in bed. Next, I won’t go into the all the unbelievable terrible losses and deaths of both parents ect… I have been through last year along with being diagnosed with this and now I have lost my job. They tell me my insurance will be up in August and my meds alone are around $3,500 a month. If I could get someone to hire me their insurance wont pick up my existing incurable disease. Unemployment or disability won’t make the bills either so I may loose my home next. Enough losses! Your PRAYERS are very appreciated here too. By the way did you know that stress is also a trigger to release tryptase and histamine? Interferon can make people extremely depressed and suicidal also. At times I mood swing a little bit and may become a little weepy. Thank God I have not been that low or bad even once though. The funny thing is everyone asks, “How I can keep smiling wile walking hunched in pain and with all I have been through?” I say how can I not? I go to a Cancer center monthly seeing people and even kids having all kinds of chemo for all kinds of Cancer. There is always someone worse off and would trade places with you. I still Love my life and my family. I just hope it gets better soon and stops turning to losses for me. I am so sorry for dumping or letting this seem too personal but you asked how it effected my life.
As for you, I never meant to seem pushy. I am just a bit concerned for anyone who may have this as you can see why now. My prayer for you is that you do not have this and that they find what is giving you trouble and fix it.
God Bless and thanks for everything.
John