BMB in November 2021. With low-grade B-cell lymphoproliferative disorder. With potential marginal zone lymphoma. It seems challenging to arrive at a diagnosis.
I am a bit anemic, tired and cold most of the time.
Hi Beverly, my daughter was told she will now be treated for the same thing, after being treated for Multi Myeloma these last 6 wks. Dr now thinks it is Lympho-plasmocytic. She is anemic, tired and cold all the time too. They are going to change her meds. For now they are giving her a break from them. Protein is high and kidney he has concerns. As her mom, I don't know what to expect next. I hope to hear more from friends on this grp. Everyone has been great!
I too have Waldenstrom macrogrobulinemia. Six years ago they thought I had NHL, BUT, Now after being in remission for three years, my bloodwork is now showing it us that not NHL! The same infusion is used for both..that is why after 3 years of infusions my blood labs are pointing more toward this. Will be same infusions whenever they feel it is time to start up again. BTW, I also have primary left lobe lung cancer and a small spot on right lung. Had radiation for left lung..stoppedit. Next week I get a CT scan to see if either has grown. And July I get a PET scan looking for any new tumors. Life is not fun. I battle fatigue all the time, then add insomnia. Sometimes I'm awake all.night.... Thank you for this group. BTW,I had a liver transplant in 2003 for an autoimmune liver disease, PBC.
To all I send healing hugs,my friend said it sounds better than "get well" With our WM there are so many symptoms, for myself I feel like "what else"? Thank you all for sharing and for being there.
I have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. Just been told to go home and live my life as there is no cure and treatment does not start until I have symptoms. Labs are not looking too great but could be worse, I suppose. I also now have Hypothyroidism. What next? Let me know how you are doing.
Elainejarrett sounds to me like a case of some sort of lymphoma, as you say. I have a bucket full of these disorders, and no healing for any of them. I suspect that, unless you are under 10 years, you will do just as well by treating what you can, guessing at the rest, and doing a lot of fishing and praying. I have all of these and many more I just try to enjoy living.
It may be the best option, instead of some protocol that damages your health only to fail to cure. The notion of using cart t cell therapy as a last resort seems cruel when it gives the best remission rates.Has anyone heard of Thraxton HDL nanoparticles?? It's suppose to attach to HDL that feeds cancer and starves the cancer WITHOUT chemotherapy.
catalinae | @catalinae wanted to do a private comment; but don't know how. I sincerely appreciate someone who can understand blood disorders and avoid cold. I have cold urticaria - anaphylaxis shock when I get cold. I've always been high on iron (but) first time ever; I'm have MF and PV. We have opposite problem; you have macroglobulin (red blood cells to big > over 100) I have macrocytic anemia (red blood cell is
I too am annemia. Plus MAST CELL ACTIVATION DISORDER. My body is allergic to most foods so I produce too much hystamines. Funny, I get COLD often and can't get warm..but they think its from MAST CELL, now I am wondering if this is the real reason I get cold so easy.. I'll look up your " cold urticaria". Gets confusing when I have so many autoimmune illness's. I have chronic cough from post nasal drip which comes from MAST CELL..... It is hard..but so far I've made it to 78 years old. Also, colitis! Sjogrens, arthritis, spine problem L1 thru L4...etc...yards dealing with my life
Hi @pysullivan, welcome to Connect. Here a few previous discussions in the community about Waldenstrom macroglobulinemia (WM), a type of non-Hodgkin lymphoma (NHL):
I'm tagging other members @sstouten@azjulie@dcp45 who have also talking about Waldenstrom. While we wait for others to join in, PYSullivan, why don't you tell us a bit more about you? Have you been recently diagnosed with WM? I assume watch and wait is the proposed treatment option at the moment, correct?
I too have Waldenstrom macrogrobulinemia. Six years ago they thought I had NHL, BUT, Now after being in remission for three years, my bloodwork is now showing it us that not NHL! The same infusion is used for both..that is why after 3 years of infusions my blood labs are pointing more toward this. Will be same infusions whenever they feel it is time to start up again. BTW, I also have primary left lobe lung cancer and a small spot on right lung. Had radiation for left lung..stoppedit. Next week I get a CT scan to see if either has grown. And July I get a PET scan looking for any new tumors. Life is not fun. I battle fatigue all the time, then add insomnia. Sometimes I'm awake all.night.... Thank you for this group. BTW,I had a liver transplant in 2003 for an autoimmune liver disease, PBC.
You are in my thoughts and healing wishes are going your way!
With this disease (WM) unfortunately it seems to be a waiting game for symptoms to show up.
We are all in this together. More hugs going your way!
You too are in my thoughts.. It is scary when anything untoward shows up as far as health as you think... is this it. The treatment seems to work well for the most part. Thanks for getting back to me.
I have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. Just been told to go home and live my life as there is no cure and treatment does not start until I have symptoms. Labs are not looking too great but could be worse, I suppose. I also now have Hypothyroidism. What next? Let me know how you are doing.
You are in my thoughts and healing wishes are going your way!
With this disease (WM) unfortunately it seems to be a waiting game for symptoms to show up.
We are all in this together. More hugs going your way!
BMB in November 2021. With low-grade B-cell lymphoproliferative disorder. With potential marginal zone lymphoma. It seems challenging to arrive at a diagnosis.
I am a bit anemic, tired and cold most of the time.
I too have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. My labs are not great but stable. No symptoms as of yet. Are you receiving any treatment? I feel tired and sometimes feel hot with a very light sweat over my body especially my forehead. I have also been diagnosed with Hypothyroidism and have to have further labs done for that. No treatment yet either. Would love to hear back from you.
One of the great problems of our time is that modern medical practice has not yet met the full meaning of having multiple diseases and disorders. I have listed many of mine on these pages. I am pretty sure that I have at least a couple thousand diseases, phenotypes, and disorders that may be messing with my life, especially through all the protein changes and mutations and "unknown significances". Anyway, the search for the gen and its effects are the core of truth in modern medicine. If you have not had one of the better labs, such as Nebula or Sequencing .com do an analysis, do it. The price is well worth it, and you will learn great things.
oldkarl
I have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. Just been told to go home and live my life as there is no cure and treatment does not start until I have symptoms. Labs are not looking too great but could be worse, I suppose. I also now have Hypothyroidism. What next? Let me know how you are doing.
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Hi Beverly, my daughter was told she will now be treated for the same thing, after being treated for Multi Myeloma these last 6 wks. Dr now thinks it is Lympho-plasmocytic. She is anemic, tired and cold all the time too. They are going to change her meds. For now they are giving her a break from them. Protein is high and kidney he has concerns. As her mom, I don't know what to expect next. I hope to hear more from friends on this grp. Everyone has been great!
To all I send healing hugs,my friend said it sounds better than "get well" With our WM there are so many symptoms, for myself I feel like "what else"? Thank you all for sharing and for being there.
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Like -
Helpful -
Hug
2 ReactionsElainejarrett sounds to me like a case of some sort of lymphoma, as you say. I have a bucket full of these disorders, and no healing for any of them. I suspect that, unless you are under 10 years, you will do just as well by treating what you can, guessing at the rest, and doing a lot of fishing and praying. I have all of these and many more I just try to enjoy living.
I don't know of anyone in my group that get cart T cells is for Multiple myloma..and it works for most.
I too am annemia. Plus MAST CELL ACTIVATION DISORDER. My body is allergic to most foods so I produce too much hystamines. Funny, I get COLD often and can't get warm..but they think its from MAST CELL, now I am wondering if this is the real reason I get cold so easy.. I'll look up your " cold urticaria". Gets confusing when I have so many autoimmune illness's. I have chronic cough from post nasal drip which comes from MAST CELL..... It is hard..but so far I've made it to 78 years old. Also, colitis! Sjogrens, arthritis, spine problem L1 thru L4...etc...yards dealing with my life
-
Like -
Helpful -
Hug
1 ReactionI too have Waldenstrom macrogrobulinemia. Six years ago they thought I had NHL, BUT, Now after being in remission for three years, my bloodwork is now showing it us that not NHL! The same infusion is used for both..that is why after 3 years of infusions my blood labs are pointing more toward this. Will be same infusions whenever they feel it is time to start up again. BTW, I also have primary left lobe lung cancer and a small spot on right lung. Had radiation for left lung..stoppedit. Next week I get a CT scan to see if either has grown. And July I get a PET scan looking for any new tumors. Life is not fun. I battle fatigue all the time, then add insomnia. Sometimes I'm awake all.night.... Thank you for this group. BTW,I had a liver transplant in 2003 for an autoimmune liver disease, PBC.
-
Like -
Helpful -
Hug
3 ReactionsYou too are in my thoughts.. It is scary when anything untoward shows up as far as health as you think... is this it. The treatment seems to work well for the most part. Thanks for getting back to me.
-
Like -
Helpful -
Hug
2 ReactionsYou are in my thoughts and healing wishes are going your way!
With this disease (WM) unfortunately it seems to be a waiting game for symptoms to show up.
We are all in this together. More hugs going your way!
-
Like -
Helpful -
Hug
2 ReactionsI too have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. My labs are not great but stable. No symptoms as of yet. Are you receiving any treatment? I feel tired and sometimes feel hot with a very light sweat over my body especially my forehead. I have also been diagnosed with Hypothyroidism and have to have further labs done for that. No treatment yet either. Would love to hear back from you.
-
Like -
Helpful -
Hug
2 ReactionsI have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. Just been told to go home and live my life as there is no cure and treatment does not start until I have symptoms. Labs are not looking too great but could be worse, I suppose. I also now have Hypothyroidism. What next? Let me know how you are doing.
-
Like -
Helpful -
Hug
3 Reactions