Feb 19, 2013 - 8:09 pm
I am so happy that I have found a site that talks about long term survival, relapse, and support! I am having a bit of a hard time right now, have had a number of health stuff going on. Let me tell you a bit about me I was diagnosed with HD at the age of 13 in 1988 stage III A only symptom was back pain, after having gone through every test and told all my complents where in my head from the onset of symptoms to diagnosis took 3 years. Spleenectomy and ABVD 12 cycles followed. I was cancer free until I was 25 then was diagnosed with folicular carcinoma of the thyroid, again after complaining for a couple of years about constant fatigue etc. it was finally found and treated however, first the found the contained nodule through altrasound saying that it is highly unlikely to be cancer given that I was never treated with RT. But that given my history they would send me to have one lobe out and if they detemine it to be cancer which the should know in 15 min from romoving it that they will remove the other lobe...well 3 weeks after the first lobe I get a phone call saying um yeah turns out it is maligniant and we need you to have the other half out. Had the sugery follwed by I-131 drink to kill residule tissue. That has now been just over 10 years.
K so now new stuff I have been feeling ill for a few month, bone pain, nasuea, fatigue, slightly swollen axillary nodes, and inner thigh nodes. Random low grade fevers on and off. Rash in center chest sores on upper thighs. Labs including ESR have been a little up and down but nothing drawing attention. I am on madifinial from my nurologist to combat fatigue which some days it helps other days not so much. I feel like I am obsessing lately about how I feel and think the Dr's are missing something. In the last 2 years I have spent 2 weeks at a time in the hospital because high platelets and white cell count not super high but platelets have been 100 normal is between 1 and 400 in canada mine have been 599 white cell count normal is between 4 and 10 I always run about 13 since I had my spleen out however at times they are 25. I was told that high platelets could be because I don't have a spleen. However, most research I have found says that you should return to normal levels.
I can't seem to get my dr to order a CT..or do anything more then blood work which I know lymphoma is not always detected in the blood. So I guess I just need to talk with others who understand. I am just really fustrated!