Linda, I am so sorry to hear that you had extreme rashes. How are you doing on Ibrutinib? I took Ibrutinib for just over two years. Sounds like your local specialist and Dr. Binder work well together. May you continue to do well on Ibrutinib.
Ibrutinib seems to be keeping my lab levels in check and will continue with it instead of IV infusion which seemed to cause my reaction and being hospitalized a second time.
I have to be tested next week for possible amyloidosis and will also have to see a neurologist.
Colleen Young, Connect Director | @colleenyoung | Dec 17, 2021
@puffwithfluff, I'm glad you've connected with @ejrquast. I hope the two of you will continue to talk here on Mayo Clinic Connect to help newcomers diagnoses with Waldenstrom macroglobulinemia.
Puffwithfluff, what are the mental challenges of this recent diagnosis that you struggle with the most?
@puffwithfluff, I'm glad you've connected with @ejrquast. I hope the two of you will continue to talk here on Mayo Clinic Connect to help newcomers diagnoses with Waldenstrom macroglobulinemia.
Puffwithfluff, what are the mental challenges of this recent diagnosis that you struggle with the most?
One of the biggest mental challenges was when I first heard the diagnosis of WM and kept asking WHY???? Finding out how rare the cancer is and the best way to treat it is on my mind.
I also struggle with being unable to do simple things for myself like get dressed and trying to button my blouse. I wanted to give up mentally and physically because my husband had to do everything and attend to me 24-7! He had to do laundry, housekeeping, shopping and cooking. I worked in a nursing home for thirty eight years helping others and I couldn’t care for myself now.!!!!!!
Thank heavens I am not alone!!!!
Puffwithfluff
I was diagnosed with Waldenstrom Syndrome in 2013 . I received 2 years of chemo . I have been in remission about 6 years . I see my Dr. every 6 months and get blood work a week before I see him ; so far I am still doing well.
I wonder if any one with this has to be on a life time of antibiotic therapy to prevent pneumonia ? I take Septra twice on Monday & twice on Thursday . I have a friend with the same cancer , same Dr. and does not take it ?
I also get IVGA every month from Oct. to March to help boost my immune system . I trust my Dr. 100 % . Just curious .
I was diagnosed with Waldenstrom Syndrome in 2013 . I received 2 years of chemo . I have been in remission about 6 years . I see my Dr. every 6 months and get blood work a week before I see him ; so far I am still doing well.
I wonder if any one with this has to be on a life time of antibiotic therapy to prevent pneumonia ? I take Septra twice on Monday & twice on Thursday . I have a friend with the same cancer , same Dr. and does not take it ?
I also get IVGA every month from Oct. to March to help boost my immune system . I trust my Dr. 100 % . Just curious .
I have WM and was on Bactrim during treatments but taken off 17 months after my last treatment because Bactrim adversely affected a couple of levels. I have a friend with WM who was on Bactrim during her treatments, that ended in 2017, and she continues taking Bactrim.
I have IVIG when My IgG levels get low but not monthly.
If you go to the IWMF (International Waldenstrom’s Macroglobulinemia Foundation) website -https://www.iwmf.com/ - and search for the Helpline, you will be able to contact a volunteer who can assist you with any questions about IVIG. Also, the IWMF has an IVIG fact sheet that is extremely informative.
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
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?
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.
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
Connect
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Yes, definitely. I would appreciate any help with dealing physically and mentally with my Waldenstrom cancer. Thank-you.
Ibrutinib seems to be keeping my lab levels in check and will continue with it instead of IV infusion which seemed to cause my reaction and being hospitalized a second time.
I have to be tested next week for possible amyloidosis and will also have to see a neurologist.
@puffwithfluff, I'm glad you've connected with @ejrquast. I hope the two of you will continue to talk here on Mayo Clinic Connect to help newcomers diagnoses with Waldenstrom macroglobulinemia.
Puffwithfluff, what are the mental challenges of this recent diagnosis that you struggle with the most?
-
Like -
Helpful -
Hug
1 ReactionOne of the biggest mental challenges was when I first heard the diagnosis of WM and kept asking WHY???? Finding out how rare the cancer is and the best way to treat it is on my mind.
I also struggle with being unable to do simple things for myself like get dressed and trying to button my blouse. I wanted to give up mentally and physically because my husband had to do everything and attend to me 24-7! He had to do laundry, housekeeping, shopping and cooking. I worked in a nursing home for thirty eight years helping others and I couldn’t care for myself now.!!!!!!
Thank heavens I am not alone!!!!
Puffwithfluff
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed with Waldenstrom Syndrome in 2013 . I received 2 years of chemo . I have been in remission about 6 years . I see my Dr. every 6 months and get blood work a week before I see him ; so far I am still doing well.
I wonder if any one with this has to be on a life time of antibiotic therapy to prevent pneumonia ? I take Septra twice on Monday & twice on Thursday . I have a friend with the same cancer , same Dr. and does not take it ?
I also get IVGA every month from Oct. to March to help boost my immune system . I trust my Dr. 100 % . Just curious .
-
Like -
Helpful -
Hug
1 ReactionI have WM and was on Bactrim during treatments but taken off 17 months after my last treatment because Bactrim adversely affected a couple of levels. I have a friend with WM who was on Bactrim during her treatments, that ended in 2017, and she continues taking Bactrim.
I have IVIG when My IgG levels get low but not monthly.
If you go to the IWMF (International Waldenstrom’s Macroglobulinemia Foundation) website -https://www.iwmf.com/ - and search for the Helpline, you will be able to contact a volunteer who can assist you with any questions about IVIG. Also, the IWMF has an IVIG fact sheet that is extremely informative.
-
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
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/
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 ReactionBMB 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 ReactionOne 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