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?
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 (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?
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!
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.😏🤗
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?
I meant to say I am not fond of any chemo treatments. They all cause side effects and comorbidities. I would probably reject them all if suggested to me.
Hi @marymoreau1948 I don’t think anyone is fond of chemo treatments but they can be absolutely necessary for some of us in an effort to rid our bodies of cancer cells and to buy us precious time. In my case, had I not gone through the rigorous chemo treatments and a bone marrow transplant I wouldn’t be here. The side effects, though unpleasant, were short lived. And those I did have were a very small price to pay for now being able to live a full and happy life. I’ve been alive 4 more years than I would have been. I’m now 69 and counting on at least 20 more years!
So I hope, if you’re not ready to push up daisies from the underside, that if you are offered the choice between chemo and a premature visit through the ‘pearly gates’ that you trust your oncologist to help buy you precious time.
You have CLL and WM? Are you in a watch and wait period?
Thank you for allowing me to vent and your explanation of "watch and wait" was helpful.
The print out was from the Leukemia and lymphoma society revised date of Jan.2012. When I started checking the meds they prescribed none were mentioned by anyone on the Mayo. That is probably the only reason I paid attention to the date.
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?
Good morning, @catalinae. You’re welcome to vent anytime. We all need a pressure relief valve and no better place to open up than with others who are sharing a similar experience with you. ☺️
Ah, the dreaded ‘watch and wait’. Sometimes it feels like you’re waiting for ‘the other shoe to drop’, doesn’t it? But you can also look at it in a positive light that your hematologist isn’t anticipating anything to change rapidly.
There is no clinical value in starting you on a treatment right now because it wouldn’t do anything to slow the progression or change the course of your disease. There’s no point being on a medication when it’s not needed yet. If or when your blood work starts showing signs of a proliferation of unusual cells, then your doctor will talk to you about the options for treatment.
Not sure what the dated printout you received was concerning. Was this an informational sheet on WM?
Thank you for allowing me to vent and your explanation of "watch and wait" was helpful.
The print out was from the Leukemia and lymphoma society revised date of Jan.2012. When I started checking the meds they prescribed none were mentioned by anyone on the Mayo. That is probably the only reason I paid attention to the date.
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
Good morning, @catalinae. You’re welcome to vent anytime. We all need a pressure relief valve and no better place to open up than with others who are sharing a similar experience with you. ☺️
Ah, the dreaded ‘watch and wait’. Sometimes it feels like you’re waiting for ‘the other shoe to drop’, doesn’t it? But you can also look at it in a positive light that your hematologist isn’t anticipating anything to change rapidly.
There is no clinical value in starting you on a treatment right now because it wouldn’t do anything to slow the progression or change the course of your disease. There’s no point being on a medication when it’s not needed yet. If or when your blood work starts showing signs of a proliferation of unusual cells, then your doctor will talk to you about the options for treatment.
Not sure what the dated printout you received was concerning. Was this an informational sheet on WM?
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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?
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
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?
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!
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Like -
Helpful -
Hug
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 ReactionsI did check the web site. Thank you all,just having a venting day. Again,thank you.
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4 ReactionsHi @marymoreau1948 I don’t think anyone is fond of chemo treatments but they can be absolutely necessary for some of us in an effort to rid our bodies of cancer cells and to buy us precious time. In my case, had I not gone through the rigorous chemo treatments and a bone marrow transplant I wouldn’t be here. The side effects, though unpleasant, were short lived. And those I did have were a very small price to pay for now being able to live a full and happy life. I’ve been alive 4 more years than I would have been. I’m now 69 and counting on at least 20 more years!
So I hope, if you’re not ready to push up daisies from the underside, that if you are offered the choice between chemo and a premature visit through the ‘pearly gates’ that you trust your oncologist to help buy you precious time.
You have CLL and WM? Are you in a watch and wait period?
-
Like -
Helpful -
Hug
4 ReactionsI’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?
-
Like -
Helpful -
Hug
3 ReactionsThank you for allowing me to vent and your explanation of "watch and wait" was helpful.
The print out was from the Leukemia and lymphoma society revised date of Jan.2012. When I started checking the meds they prescribed none were mentioned by anyone on the Mayo. That is probably the only reason I paid attention to the date.
-
Like -
Helpful -
Hug
1 ReactionGood morning, @catalinae. You’re welcome to vent anytime. We all need a pressure relief valve and no better place to open up than with others who are sharing a similar experience with you. ☺️
Ah, the dreaded ‘watch and wait’. Sometimes it feels like you’re waiting for ‘the other shoe to drop’, doesn’t it? But you can also look at it in a positive light that your hematologist isn’t anticipating anything to change rapidly.
There is no clinical value in starting you on a treatment right now because it wouldn’t do anything to slow the progression or change the course of your disease. There’s no point being on a medication when it’s not needed yet. If or when your blood work starts showing signs of a proliferation of unusual cells, then your doctor will talk to you about the options for treatment.
Not sure what the dated printout you received was concerning. Was this an informational sheet on WM?
-
Like -
Helpful -
Hug
1 Reaction