Oct 15, 2013 - 6:33 pm
Hi, I am a 12 year survivor of advanced Hodgkins Disease Lymphoma. I had nodular sclerosing type of tumors, about 30 in my chest and neck. When diagnosed I was stage 3 with type B symptoms if I remember correctly and about 26 years old. I received chemo for about 12 weeks and then another 12 weeks than radiation for another 3 months. I was given the Stanford V regimen. I have since had Raynaud's phenomenon, Mitrial regurgitation, aortic insufficiency and pulmonary hypertension. Not that I am complaining because I have lived to see my four daughters grow up and I would not trade that for the world. But I was just curious if anyone else has had these problems. I am 39 now and have always exercised adequately and have never been over weight. Last year I was diagnosed with subclavian steel syndrome and am currently awaiting a subclavian carotid bypass surgery. The doctor said this was a direct result of the radiation therapy to the chest during treatment of the Hodgkins Disease. Now I have a rare type of anemia like alcoholics have with vitamin B deficiencies such as a severe folic acid and thiamin ddeficiency. I do not drink but made the mistake of telling the doctor that I might have one or two Margaritas in the summertime you know when its really hot out on 4th of July or something but it is a rarity. Well because of that the damn doctor has it stuck in her head that I am an alcoholic despite telling her that I am not. Now she treats me like I am responsible for my health problems because I am a drunk but seriously I do not drink. I have county insurance now, the same one given to indigent individuals so we are pretty much just a number and no one wants or has to be held accountable for the treatment we receive. My hip hurts so bad now that it wakes me up from sleep but does not hurt when walking or using it or anything. Only when sitting, trying to sleep or sitting crossed leg, again I am only 39 years old and have no diseases or disorders in the family other than paternal family with bone cancer and my father has Diabetes Type II Agent Orange from Viet Nam but no genetic disorders. My question is do any of you long term Hodgkins Disease or Non Hodgkins Lymphoma survivors have any of the health issues that I mentioned.