Thank you for reaching out for support. WM is a very rare blood cancer. While it can be an overwhelming diagnosis, there are treatment options and hope. I was diagnosed with Waldenstrom’s Macroglobulinemia in 2014 and was immediately referred to a WM specialist at Mayo to coordinate my care with my Mayo Rochester specialist.
I contacted the International Waldenstrom’s Macroglobulinemia Foundation, I.W.M.F., for support and amazing educational resources. If you go to the following website: https://iwmf.com/join-the-iwmf/#
you can then click on the JOIN button. You will receive a new member packet with invaluable WM information.
Hi,so glad to read your note. I have also just been diagnosed with WM and have so many ups and downs.
I am experiencing tingling in hands,however I am mostly concerned about the thickening of the blood and the complications that could result from it!
I can not really offer any information,as I was just diagnosed 3weeks ago. Hope to hear from others. Thank you
Since you are experiencing tingling in your hands, you may want to contact the IWMF’s LIFELINE resource and contact a volunteer for Peripheral Neuropathy. The IWMF also provides worldwide support groups and you can join more than one. May I ask if you are experiencing more symptoms?
I have just been diagnosed with WM and am on a watch and wait as well. I've been referred to have a pet scan by my hematologist. I do not have symptoms now. It is a scary feeling not knowing what to expect. I'll be following this group to keep in touch with what others are experiencing. I know that diet has not much influence on this diagnosis but am interested to hear how others have managed or altered their diets, if at all. Thanks!
Thank you for reaching out for support. WM is a very rare blood cancer. While it can be an overwhelming diagnosis, there are treatment options and hope. I was diagnosed with Waldenstrom’s Macroglobulinemia in 2014 and was immediately referred to a WM specialist at Mayo to coordinate my care with my Mayo Rochester specialist.
I contacted the International Waldenstrom’s Macroglobulinemia Foundation, I.W.M.F., for support and amazing educational resources. If you go to the following website: https://iwmf.com/join-the-iwmf/#
you can then click on the JOIN button. You will receive a new member packet with invaluable WM information.
Hi,so glad to read your note. I have also just been diagnosed with WM and have so many ups and downs.
I am experiencing tingling in hands,however I am mostly concerned about the thickening of the blood and the complications that could result from it!
I can not really offer any information,as I was just diagnosed 3weeks ago. Hope to hear from others. Thank you
I have just been diagnosed with WM and am on a watch and wait as well. I've been referred to have a pet scan by my hematologist. I do not have symptoms now. It is a scary feeling not knowing what to expect. I'll be following this group to keep in touch with what others are experiencing. I know that diet has not much influence on this diagnosis but am interested to hear how others have managed or altered their diets, if at all. Thanks!
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.
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.
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
Welcome, Beverly. Being told you have lymphoma and the treatment is watch and wait can be unsettling to say the least. It's not an uncommon approach. I actually prefer the term "active surveillance" which sounds more attentive than watch and wait.
As you may know lymphoplasmacytic lymphoma (LPL) is sometimes called Waldenström’s macroglobulinemia. I moved your question to this existing discussion where @pysullivan asked the very same question and got the conversation started. See here:
- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom/
Beverly, you mention that the diagnosis is new, but that lymphocytes have been changing since 2017. So you've been on watch and wait since 2017 really, right? What symptoms are you experiencing now? What led to the diagnosis?
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.
Lymphoplasmacytic lymphoma
This is a new diagnosis for me. But lymphocytes changes began in 2017. What can I expect to happen during this watch and wait period. I am stage IV
Welcome, Beverly. Being told you have lymphoma and the treatment is watch and wait can be unsettling to say the least. It's not an uncommon approach. I actually prefer the term "active surveillance" which sounds more attentive than watch and wait.
As you may know lymphoplasmacytic lymphoma (LPL) is sometimes called Waldenström’s macroglobulinemia. I moved your question to this existing discussion where @pysullivan asked the very same question and got the conversation started. See here:
- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom/
Beverly, you mention that the diagnosis is new, but that lymphocytes have been changing since 2017. So you've been on watch and wait since 2017 really, right? What symptoms are you experiencing now? What led to the diagnosis?
Lymphoplasmacytic lymphoma
This is a new diagnosis for me. But lymphocytes changes began in 2017. What can I expect to happen during this watch and wait period. I am stage IV
Connect
Connect
Like
Helpful
Hug
Thank you so much for sharing your experience. I have joined the I.W.M.F and look forward to educating myself .
Appreciate your prompt response!
.
-
Like -
Helpful -
Hug
5 ReactionsSince you are experiencing tingling in your hands, you may want to contact the IWMF’s LIFELINE resource and contact a volunteer for Peripheral Neuropathy. The IWMF also provides worldwide support groups and you can join more than one. May I ask if you are experiencing more symptoms?
-
Like -
Helpful -
Hug
3 ReactionsThank you for reaching out for support. WM is a very rare blood cancer. While it can be an overwhelming diagnosis, there are treatment options and hope. I was diagnosed with Waldenstrom’s Macroglobulinemia in 2014 and was immediately referred to a WM specialist at Mayo to coordinate my care with my Mayo Rochester specialist.
I contacted the International Waldenstrom’s Macroglobulinemia Foundation, I.W.M.F., for support and amazing educational resources. If you go to the following website: https://iwmf.com/join-the-iwmf/#
you can then click on the JOIN button. You will receive a new member packet with invaluable WM information.
-
Like -
Helpful -
Hug
5 ReactionsHi,so glad to read your note. I have also just been diagnosed with WM and have so many ups and downs.
I am experiencing tingling in hands,however I am mostly concerned about the thickening of the blood and the complications that could result from it!
I can not really offer any information,as I was just diagnosed 3weeks ago. Hope to hear from others. Thank you
-
Like -
Helpful -
Hug
3 ReactionsI have just been diagnosed with WM and am on a watch and wait as well. I've been referred to have a pet scan by my hematologist. I do not have symptoms now. It is a scary feeling not knowing what to expect. I'll be following this group to keep in touch with what others are experiencing. I know that diet has not much influence on this diagnosis but am interested to hear how others have managed or altered their diets, if at all. Thanks!
-
Like -
Helpful -
Hug
4 ReactionsIt 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.
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
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.
-
Like -
Helpful -
Hug
1 ReactionWelcome, Beverly. Being told you have lymphoma and the treatment is watch and wait can be unsettling to say the least. It's not an uncommon approach. I actually prefer the term "active surveillance" which sounds more attentive than watch and wait.
As you may know lymphoplasmacytic lymphoma (LPL) is sometimes called Waldenström’s macroglobulinemia. I moved your question to this existing discussion where @pysullivan asked the very same question and got the conversation started. See here:
- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom/
In this discussion, you can connect with others with the same diagnosis like @dcp45 @66andcounting @puffwithfluff @jam5 @jproctor @deljr @connie72 @ejrquast.
Beverly, you mention that the diagnosis is new, but that lymphocytes have been changing since 2017. So you've been on watch and wait since 2017 really, right? What symptoms are you experiencing now? What led to the diagnosis?
-
Like -
Helpful -
Hug
1 ReactionLymphoplasmacytic lymphoma
This is a new diagnosis for me. But lymphocytes changes began in 2017. What can I expect to happen during this watch and wait period. I am stage IV