Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Waldenstrom's Macroglobulinemia Community
This patient support community is for discussions relating to Waldenstrom's Macroglobulinemia, non-Hodgkin lymphoma, monoclonal gammopathy of unknown significance (MGUS), multiple myeloma, and plasmapheresis.
Periodic M-Spike Clarification
by ScarlettRae, May 01, 2008 05:18PM
Thank you Dennis for responding to my earlier question re: a periodic M-spike. Indeed I have had a BM biopsy done (although it was 9 yrs ago) which showed 20% plasma cells and an absence of marrow Fe stores. Persistent elevation on the following labs: BUN/Creat, MCV, MCH, Sed Rate, C-reactive protien. Occasional elevations (1-2 times per year) of IgM, Calcium, Beta-2 Microglobulin.
Spleen was mildly enlarged according to sono. No lytic lesions. Persistent lymphadenopathy (primarily cervical and axillary nodes). As I am not a doc - please forgive any messy jargon I may have included : ).
Now, the imferon treatments have been repeated every 2 years (400mg IV Imferon 1 x per week for 10 weeks) - and my doc remains mystified as to where my iron goes. My hypercalcemia has only responded to Pamidronate, and has been the most "dangerous" of my symptoms - as it had reached 16 at one point. The bone pain - primarily back and hips - is intolerable at times, but thankfully is intermittent.
I have found myself increasingly more exhausted, and I am vulnerable to infection - being treated for pnuemonia in hospital about once per year. I have been seeing my Hem/Onc since I first became ill. He says that I "have a process that will eventually declare itself". What that is - he will not /cannot clarify. He says my immune system is comprimised, although there is no medical explanation as to why - except that I cannot mount an immune response to polysaccaride vaccines (some pneumovax test where he measured the increase in titers).
I would just like to know if there are perhaps some other avenues to explore...I want my life back.
Any suggestions would be apperciated - Thanks
Scarlett
Spleen was mildly enlarged according to sono. No lytic lesions. Persistent lymphadenopathy (primarily cervical and axillary nodes). As I am not a doc - please forgive any messy jargon I may have included : ).
Now, the imferon treatments have been repeated every 2 years (400mg IV Imferon 1 x per week for 10 weeks) - and my doc remains mystified as to where my iron goes. My hypercalcemia has only responded to Pamidronate, and has been the most "dangerous" of my symptoms - as it had reached 16 at one point. The bone pain - primarily back and hips - is intolerable at times, but thankfully is intermittent.
I have found myself increasingly more exhausted, and I am vulnerable to infection - being treated for pnuemonia in hospital about once per year. I have been seeing my Hem/Onc since I first became ill. He says that I "have a process that will eventually declare itself". What that is - he will not /cannot clarify. He says my immune system is comprimised, although there is no medical explanation as to why - except that I cannot mount an immune response to polysaccaride vaccines (some pneumovax test where he measured the increase in titers).
I would just like to know if there are perhaps some other avenues to explore...I want my life back.
Any suggestions would be apperciated - Thanks
Scarlett
Post Comment
Your condition is likely related in origin with a defect in the immune system. Hence, it is no surprise that mounting a response may not occur.
While it is nice to think that there are so many tests available, that technology is ever evolving, but then diseases very in severity and presentation, that cases such as yours (with no clear diagnosis, even after several years) do occur. Attempting to jump the gun would however compromise chances for cure if it turns out to be a curable hematologic cancer and would subject you to toxicities with an uncertain goal in mind.
Stay positive.