I’m not sure if you’ve been to this site or not but there’s some good information on here and hopefully newer than the info you were handed.
Here’s the link for the Leukemia and Lymphoma Society regarding Waldenstrom macroglobulinemia https://www.lls.org/search?search=WM
There are a number of articles on that page. Remember, you may not be needing any meds for some time, if ever. So please don’t be frighted off by things you read. I had a very aggressive form of leukemia 4 years ago and I am alive and thriving because of the powerful drugs I received. Better living through chemistry is now my motto. ☺️.
From past replies, I see you’ve been able to get quite bit of helpful information from @ejrquast for the Waldenstrom’s Macroglobulinemia Foundation, https://iwmf.com/join-the-iwmf/#
Have you been to that site yet for information and support?
Hi,this site has been very helpful not only in sharing info. but also in making me realize I am not alone!
My question today is "why watch and wait"? Please help me to understand that.
My. Hemotologist gave me a printout and I feel that he furnished me with numbers,but it was overwhelming at.least to me. The printout was dated 2012. Perhaps
an oversight on his part.
Maybe I am just venting.catalina
Hola Catalina, le saludo cordialmente. Quiero contarle que mi esposo había sido prediagnosticado hace 3 meses con Macroglobulinemia de Waldestrom, y hace solo 1 mes y algunos días su diagnóstico final fue Mieloma Múltiple, aunque ambas enfermedades son muy parecidas en síntomas la realidad es otra en su evolución, ya mi esposo se puso el primer suero citostático porque tiene una cantidad considerable de células malignas filtradas en su médula, y aunque la pasó bastante delicado con las reacciones adversas de dicho suero, estamos seguros de que es una de las soluciones más efectivas en la lucha contra la enfermedad, y con miedo pero con fe mañana enfrentaremos el segundo citostático. Estoy segura que en este lugar ( mayoclinic) encontrará respuesta y apoyo a sus preguntas y dudas. Un abrazo a todos y mis mayores deseos de bienestar.😏🤗
Hola Catalina, le saludo cordialmente. Quiero contarle que mi esposo había sido prediagnosticado hace 3 meses con Macroglobulinemia de Waldestrom, y hace solo 1 mes y algunos días su diagnóstico final fue Mieloma Múltiple, aunque ambas enfermedades son muy parecidas en síntomas la realidad es otra en su evolución, ya mi esposo se puso el primer suero citostático porque tiene una cantidad considerable de células malignas filtradas en su médula, y aunque la pasó bastante delicado con las reacciones adversas de dicho suero, estamos seguros de que es una de las soluciones más efectivas en la lucha contra la enfermedad, y con miedo pero con fe mañana enfrentaremos el segundo citostático. Estoy segura que en este lugar ( mayoclinic) encontrará respuesta y apoyo a sus preguntas y dudas. Un abrazo a todos y mis mayores deseos de bienestar.😏🤗
A big heartfelt thank you !! Along with get well hugs to everyone needing to know we are not alone.
Most of all thank you to strangers that bear their thoughts to help the rest of us. That can never be repaid.
We will get through this. I pray everyday for all of us needing patience and healing!
Hello (my 1st post) - I have Waldenstrom's - diagnosed 2007 or so. Had bad neuropathy which improved somewhat. Also fatigue, sweats, lost 20lbs. and respiratory infections.
Chemo in 2010-2011, after which my blood levels (IgM et al) improved to normal levels, but many after-effects.
Now the original symptoms are returning, I have a new hematologist/oncologist, and they've done a PET which found nodules in my lungs (yikes!)
Not sure what course we'll follow.
I was diagnosed and treated for Waldenstrom in Jun2018. Do you or anyone else know at what level IgM and the Kappa light chain should be to consider restarting treatment?
I was diagnosed and treated for Waldenstrom in Jun2018. Do you or anyone else know at what level IgM and the Kappa light chain should be to consider restarting treatment?
I was diagnosed and treated for Waldenstrom in Jun2018. Do you or anyone else know at what level IgM and the Kappa light chain should be to consider restarting treatment?
Hello @bobkat694 Welcome to Mayo Connect. While you’re waiting to see if any other members can give you insight on possibly restarting treatment for WM I found an article that might be of interest from Cancer.org. https://www.cancer.org/cancer/types/waldenstrom-macroglobulinemia/treating/people-with-wm.html
Also, if you haven’t been on their site, the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is an outstanding educational and support resource for patients and families. https://iwmf.com/
As you’ve seen in this discussion, we have quite a few members with WM. One member in particular, @ejrquast is an IWMF support group leader and really helpful with her information and experiences with this condition.
Do you see indications that your blood numbers are changing? Your hematologist would be the best source for your particular treatments. Have they discussed any plans for future treatment with you?
Started Rituxan treatment for four weeks in January. My IgM went from 5490 to 3900, and the IgA went from 12 to 20. In the spring, I had an eye stroke, and a month later had another one in the other eye, then some eye bleeds. I had vertigo, kidney stones, and UTI's all the time. I was tired and cold. My blood work showed anemia, high protein, and a low a/g ratio. I had wrist and hand surgeries due to the neuropathy and extreme coldness in my hands. My doctor tested for several items, and the next specialist thought everything was related, and that I had vasculitis. Five months later, the oncologist/hematologist thought it was MM, and then WM due to the high IgM. The bone marrow biopsy showed CLL/SLL or mantle cell lymphoma, with pending results for MYD88, which turned out to be positive. So apparently a B-cell lymphoma and WM, (metastasis, Stage IV and secondary malignant neoplasm.) Am still learning so much about this. Am feeling much better, and have more energy, although I am still tired quite often and have blurred vision. (As an art educator, the neuropathy in the hands and blurred vision with gray spots wasn't easy.) I go back in a few weeks to see if I have more improvement, and I think I will. Appreciate getting to read what others are going through. It's been one heckuva ride. I took care of my dad for two years, who was twice my size and couldn't walk, so I thought the fatigue was from that. Then he was having mini-strokes that affected his eyesight, so I thought I was possibly really connecting with him. That only lasted for about five minutes. I have always been so healthy, so it was really strange to be in the ER for kidney stones, then horrid vertigo and nausea, then eye strokes, and once for my heart as it went from 80 to 202 bpm. I really don't want to be a hypochondriac as I get older, so it was just very strange, as ALL of this was real! AND it all relates to the cancer! I can chuckle about it now, but it wasn't too funny at the time.
I was diagnosed with Waldenstroms a year ago. Is shortness of breath a common symptom? It happens upon the slightest exertion during the day, and often in the middle of the night when I am lying down and suddenly wake up gulping for air.
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I did check the web site. Thank you all,just having a venting day. Again,thank you.
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4 ReactionsHola Catalina, le saludo cordialmente. Quiero contarle que mi esposo había sido prediagnosticado hace 3 meses con Macroglobulinemia de Waldestrom, y hace solo 1 mes y algunos días su diagnóstico final fue Mieloma Múltiple, aunque ambas enfermedades son muy parecidas en síntomas la realidad es otra en su evolución, ya mi esposo se puso el primer suero citostático porque tiene una cantidad considerable de células malignas filtradas en su médula, y aunque la pasó bastante delicado con las reacciones adversas de dicho suero, estamos seguros de que es una de las soluciones más efectivas en la lucha contra la enfermedad, y con miedo pero con fe mañana enfrentaremos el segundo citostático. Estoy segura que en este lugar ( mayoclinic) encontrará respuesta y apoyo a sus preguntas y dudas. Un abrazo a todos y mis mayores deseos de bienestar.😏🤗
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2 ReactionsA big heartfelt thank you !! Along with get well hugs to everyone needing to know we are not alone.
Most of all thank you to strangers that bear their thoughts to help the rest of us. That can never be repaid.
We will get through this. I pray everyday for all of us needing patience and healing!
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Like -
Helpful -
Hug
4 ReactionsI was diagnosed and treated for Waldenstrom in Jun2018. Do you or anyone else know at what level IgM and the Kappa light chain should be to consider restarting treatment?
Don't know. Do know the levels you're talking about, but as they relate to restarting treatment don't know (sorry).
Take care,
Don
Hello @bobkat694 Welcome to Mayo Connect. While you’re waiting to see if any other members can give you insight on possibly restarting treatment for WM I found an article that might be of interest from Cancer.org.
https://www.cancer.org/cancer/types/waldenstrom-macroglobulinemia/treating/people-with-wm.html
Also, if you haven’t been on their site, the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is an outstanding educational and support resource for patients and families. https://iwmf.com/
As you’ve seen in this discussion, we have quite a few members with WM. One member in particular, @ejrquast is an IWMF support group leader and really helpful with her information and experiences with this condition.
Do you see indications that your blood numbers are changing? Your hematologist would be the best source for your particular treatments. Have they discussed any plans for future treatment with you?
Started Rituxan treatment for four weeks in January. My IgM went from 5490 to 3900, and the IgA went from 12 to 20. In the spring, I had an eye stroke, and a month later had another one in the other eye, then some eye bleeds. I had vertigo, kidney stones, and UTI's all the time. I was tired and cold. My blood work showed anemia, high protein, and a low a/g ratio. I had wrist and hand surgeries due to the neuropathy and extreme coldness in my hands. My doctor tested for several items, and the next specialist thought everything was related, and that I had vasculitis. Five months later, the oncologist/hematologist thought it was MM, and then WM due to the high IgM. The bone marrow biopsy showed CLL/SLL or mantle cell lymphoma, with pending results for MYD88, which turned out to be positive. So apparently a B-cell lymphoma and WM, (metastasis, Stage IV and secondary malignant neoplasm.) Am still learning so much about this. Am feeling much better, and have more energy, although I am still tired quite often and have blurred vision. (As an art educator, the neuropathy in the hands and blurred vision with gray spots wasn't easy.) I go back in a few weeks to see if I have more improvement, and I think I will. Appreciate getting to read what others are going through. It's been one heckuva ride. I took care of my dad for two years, who was twice my size and couldn't walk, so I thought the fatigue was from that. Then he was having mini-strokes that affected his eyesight, so I thought I was possibly really connecting with him. That only lasted for about five minutes. I have always been so healthy, so it was really strange to be in the ER for kidney stones, then horrid vertigo and nausea, then eye strokes, and once for my heart as it went from 80 to 202 bpm. I really don't want to be a hypochondriac as I get older, so it was just very strange, as ALL of this was real! AND it all relates to the cancer! I can chuckle about it now, but it wasn't too funny at the time.
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2 ReactionsIt was for me. Since treatment, I am much better. When I had more hyper-viscosity I was out of breath often, upon exertion.
Thank you for helpful answer. I am glad to hear you are feeling better.
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1 ReactionThanks, Leslie, and hope you are, too.