Checking in to see how your son is doing (and you as the caretaker)…..
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Curious if anyone has had lab results showing a much lower than normal level of Immunoglobulin M with all other levels at a normal amount. My doctor did not seem concerned, but because my levels have been at the norm for 2 years, my concern is high.
I read your message about the small red lesion and wanted to share my experience. I wanted to let you know about an autoimmune disease I have called Morphea, a localized scleroderma. It first appeared as a faint red rash about the size of a quarter on one shin & eventually on the other several months later. Over the next year, the faint red become brighter and then looked like a bruise. It did not hurt, itch or burn. I knew I had not caused the bruising. After it began to spread toward my knees, my concern became greater, I pointed it out to my primary care physician who sent me to a dermatologist who monitored the 'rashes' for the next few months. He biopsied the middle of this rash on one shin and the pathology report showed the Morphea. This dermatologist continued to tell me I was 'a very lucky gal' as the only other patients (3 total) he treated for Morphea also had an underlying disease. Fast forward 5 years since that diagnosis…..my lymphoma was diagnosed in 2015. All oncologists with whom I have met believe the lymphoma existed for several years before the diagnosis was made. My intent is to not scare you, but definitely have your primary care doctor and oncologist take a look at the rash. If they don't think it is a big deal, you may still want to have a dermatologist check it. I hope it clears up and disappears for you.
Congratulations on your new home, Jackie! It sounds like you may have an infection in your mouth, so it would be a good idea to get checked in case medication is needed. I have been stable and continue on 'watch & wait'. I return to the oncologist for a 6 month exam in late September. My obvious symptom continues to be the fatigue. The heat and humidity make it worse at this time of the year. I just know I need to be disciplined and go to bed at a reasonable hour. Hope you are doing well other than the toothache, which will hopefully be gone quickly!
That is great news! Hope your gym has a cleaner & towels or disinfectant wipes to clean equipment before you use to avoid germs. If not, bring your own to avoid germs. It's that one germ that could cause an infection that will delay your treatment, and you don't want that to happen. Best of luck to you and hope the next few months go very quickly for you!
Yes that is the type of lymphoma I have —- I was in touch with you in March and April (if I recall dates correctly). The stem cell transplant would be the next step for most of us with this type. I am relieved to hear that your son is feeling fine right now. If time allows (and depending on the limits of his insurance), I would highly recommend getting a 2nd & 3rd opinion on whether the time is now right for the transplant. There are quite a few patients on the American Cancer Society support site that have shared their experiences with the transplant. The most important thing is to keep all germs away from your son so he can recover as quickly as possible. Best of luck to him, you and your family. You are all in my prayers!
And yes, we have a very rare form of lymphoma. Your son falls into the average age and gender of this lymphoma. The more of us that share our experience with Nodular lymphocyte-predominant Hodgkin lymphoma, the more we will help others who have this type. Being diagnosed at the age of 52 and a female through off the lymphoma teams at 3 teaching institutions with whom I met…..very uncertain what to do with me.