I am an 83 yr old female and an 11 yr breast cancer survivor. I was recently diagnosed with WM. Currently hematologist is just watching. Said that all treatments have side effects. Is this best approach or should I be seeking other help?
I am an 83 yr old female and an 11 yr breast cancer survivor. I was recently diagnosed with WM. Currently hematologist is just watching. Said that all treatments have side effects. Is this best approach or should I be seeking other help?
I prefer to refer to "watch and wait" as the "active surveillance" treatment option. Watch and wait feels like inaction and just waiting for the worst. Active surveillance is pro-active. Your condition may not require treatments like chemo, but you are still being actively monitored for any changes that may indicate a different treatment approach.
When deciding on treatment options, your doctor will take many things into consideration like how slow or fast the condition progresses, your age, health status, personal preferences and treatment side effects.
Did your doctor discuss options and the pros and cons of each with you?
I prefer to refer to "watch and wait" as the "active surveillance" treatment option. Watch and wait feels like inaction and just waiting for the worst. Active surveillance is pro-active. Your condition may not require treatments like chemo, but you are still being actively monitored for any changes that may indicate a different treatment approach.
When deciding on treatment options, your doctor will take many things into consideration like how slow or fast the condition progresses, your age, health status, personal preferences and treatment side effects.
Did your doctor discuss options and the pros and cons of each with you?
I prefer to refer to "watch and wait" as the "active surveillance" treatment option. Watch and wait feels like inaction and just waiting for the worst. Active surveillance is pro-active. Your condition may not require treatments like chemo, but you are still being actively monitored for any changes that may indicate a different treatment approach.
When deciding on treatment options, your doctor will take many things into consideration like how slow or fast the condition progresses, your age, health status, personal preferences and treatment side effects.
Did your doctor discuss options and the pros and cons of each with you?
Hello all. Thought I would jump in and be part of the discussion on Waldenstrom disease. I have been part of a support group for prostate cancer for 3 years and appreciate the value of the group.
Diagnosed with MGUS in 2020 and monitored for 2 years when condition progressed and treatment was started Feb 2023 with IVIG infusions.
Again blood work showed progression to Waldenstrom with IgM at 7800. Chemo started last week with treatments every month for two consecutive days each time.
Look forward to being part of this discussion group going forward
Best to all!
Hello all. Thought I would jump in and be part of the discussion on Waldenstrom disease. I have been part of a support group for prostate cancer for 3 years and appreciate the value of the group.
Diagnosed with MGUS in 2020 and monitored for 2 years when condition progressed and treatment was started Feb 2023 with IVIG infusions.
Again blood work showed progression to Waldenstrom with IgM at 7800. Chemo started last week with treatments every month for two consecutive days each time.
Look forward to being part of this discussion group going forward
Best to all!
Welcome to the club, @badnewsforme We just had another new member join the WM group yesterday. @bacord83 was recently diagnosis with Waldenstrom and hasn’t started treatment yet and is researching options, since this is new to her. Maybe your experience with the IVIG and Chemo will help her get a better understanding.
You were diagnosed with MGUS in 2020 and then your disease progressed to Waldenstrom’s in about 3 years? That’s when you began receiving IVIG infusions. Which is used to treat inflammation or autoimmune conditions. https://www.healthline.com/health/ivig-infusion
How did you do with the IVIG infusions? Any side effects?
When your condition progressed further you then began chemo treatments. Could you let us know the name of the treatment?
Thank you for sharing your story here! It takes a village and we never know how many people we can help when post our experiences. ☺️
I know it’s pretty early in the game but have you noticed any side effects from the chemo?
I am an 83 yr old female and an 11 yr breast cancer survivor. I was recently diagnosed with WM. Currently hematologist is just watching. Said that all treatments have side effects. Is this best approach or should I be seeking other help?
I believe everyone is an individual on their own path. I was diagnosed in 2004 and was on a watch and wait. I saw my Doctor every three months and had blood tests each time.
This continued until 2019. At this time my blood work and a bone marrow test indicated I needed chemotherapy. Went through chemo and now I am back seeing my doctor every 4 months waiting and watching! I wish you well .
Welcome to the club, @badnewsforme We just had another new member join the WM group yesterday. @bacord83 was recently diagnosis with Waldenstrom and hasn’t started treatment yet and is researching options, since this is new to her. Maybe your experience with the IVIG and Chemo will help her get a better understanding.
You were diagnosed with MGUS in 2020 and then your disease progressed to Waldenstrom’s in about 3 years? That’s when you began receiving IVIG infusions. Which is used to treat inflammation or autoimmune conditions. https://www.healthline.com/health/ivig-infusion
How did you do with the IVIG infusions? Any side effects?
When your condition progressed further you then began chemo treatments. Could you let us know the name of the treatment?
Thank you for sharing your story here! It takes a village and we never know how many people we can help when post our experiences. ☺️
I know it’s pretty early in the game but have you noticed any side effects from the chemo?
Hello Lori and group, IVIG infusions continue for autoimmune condition. Receiving every 3 weeks on a different schedule from Waldenstrom treatments. Infusions have been well tolerated with minimal side affects.
For Waldenstrom treatment I’m receiving Bendamustine (Bendeka) and Rituximab (Rituxan) once a month on 2 consecutive days each treatment. First treatment was split between the 2 medications and given over 8 days. This was an attempt to minimize side affects. Extreme fatigue and increased blurred vision on the day of treatment. Fatigue issues improved after 48 hours. Blurred vision was a problem before treatment started and continues. This may be related to blood viscosity elevation.
Second round of chemo Aug 28 & 29. Will update following treatment.
Best to all!
Hello Lori and group, IVIG infusions continue for autoimmune condition. Receiving every 3 weeks on a different schedule from Waldenstrom treatments. Infusions have been well tolerated with minimal side affects.
For Waldenstrom treatment I’m receiving Bendamustine (Bendeka) and Rituximab (Rituxan) once a month on 2 consecutive days each treatment. First treatment was split between the 2 medications and given over 8 days. This was an attempt to minimize side affects. Extreme fatigue and increased blurred vision on the day of treatment. Fatigue issues improved after 48 hours. Blurred vision was a problem before treatment started and continues. This may be related to blood viscosity elevation.
Second round of chemo Aug 28 & 29. Will update following treatment.
Best to all!
Not sure how this all works, but I am responding to the post above. Thank you for making me feel more comfortable. I am 74 years old and have been on watch and wait for 1-1/2 years, feeling good, but now need to begin chemo due do numbers quickly moving in the wrong direction. It seems to be exactly the schedule you are following, with the rituxin and bendeka at 3 days per month. I hope I sail through it like you seem to be doing.
Leslie F.
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I am an 83 yr old female and an 11 yr breast cancer survivor. I was recently diagnosed with WM. Currently hematologist is just watching. Said that all treatments have side effects. Is this best approach or should I be seeking other help?
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1 ReactionWelcome, @bacord83. I moved your message to this discussion:
- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom/
Just click the link to see the discussion about watch and wait with WM and meet other members like @squidlee @catalinae @champ9810 @ejrquast and more.
I prefer to refer to "watch and wait" as the "active surveillance" treatment option. Watch and wait feels like inaction and just waiting for the worst. Active surveillance is pro-active. Your condition may not require treatments like chemo, but you are still being actively monitored for any changes that may indicate a different treatment approach.
When deciding on treatment options, your doctor will take many things into consideration like how slow or fast the condition progresses, your age, health status, personal preferences and treatment side effects.
Did your doctor discuss options and the pros and cons of each with you?
-
Like -
Helpful -
Hug
3 ReactionsNo discussion on treatment options, only that all treatments had side effects
Hello all. Thought I would jump in and be part of the discussion on Waldenstrom disease. I have been part of a support group for prostate cancer for 3 years and appreciate the value of the group.
Diagnosed with MGUS in 2020 and monitored for 2 years when condition progressed and treatment was started Feb 2023 with IVIG infusions.
Again blood work showed progression to Waldenstrom with IgM at 7800. Chemo started last week with treatments every month for two consecutive days each time.
Look forward to being part of this discussion group going forward
Best to all!
-
Like -
Helpful -
Hug
1 ReactionWelcome to the club, @badnewsforme We just had another new member join the WM group yesterday. @bacord83 was recently diagnosis with Waldenstrom and hasn’t started treatment yet and is researching options, since this is new to her. Maybe your experience with the IVIG and Chemo will help her get a better understanding.
You were diagnosed with MGUS in 2020 and then your disease progressed to Waldenstrom’s in about 3 years? That’s when you began receiving IVIG infusions. Which is used to treat inflammation or autoimmune conditions. https://www.healthline.com/health/ivig-infusion
How did you do with the IVIG infusions? Any side effects?
When your condition progressed further you then began chemo treatments. Could you let us know the name of the treatment?
Thank you for sharing your story here! It takes a village and we never know how many people we can help when post our experiences. ☺️
I know it’s pretty early in the game but have you noticed any side effects from the chemo?
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Like -
Helpful -
Hug
1 ReactionI believe everyone is an individual on their own path. I was diagnosed in 2004 and was on a watch and wait. I saw my Doctor every three months and had blood tests each time.
This continued until 2019. At this time my blood work and a bone marrow test indicated I needed chemotherapy. Went through chemo and now I am back seeing my doctor every 4 months waiting and watching! I wish you well .
-
Like -
Helpful -
Hug
3 ReactionsHello Lori and group, IVIG infusions continue for autoimmune condition. Receiving every 3 weeks on a different schedule from Waldenstrom treatments. Infusions have been well tolerated with minimal side affects.
For Waldenstrom treatment I’m receiving Bendamustine (Bendeka) and Rituximab (Rituxan) once a month on 2 consecutive days each treatment. First treatment was split between the 2 medications and given over 8 days. This was an attempt to minimize side affects. Extreme fatigue and increased blurred vision on the day of treatment. Fatigue issues improved after 48 hours. Blurred vision was a problem before treatment started and continues. This may be related to blood viscosity elevation.
Second round of chemo Aug 28 & 29. Will update following treatment.
Best to all!
-
Like -
Helpful -
Hug
2 Reactions@bacord83 have you had any follow up about treatments? Or watch and wait?
Not sure how this all works, but I am responding to the post above. Thank you for making me feel more comfortable. I am 74 years old and have been on watch and wait for 1-1/2 years, feeling good, but now need to begin chemo due do numbers quickly moving in the wrong direction. It seems to be exactly the schedule you are following, with the rituxin and bendeka at 3 days per month. I hope I sail through it like you seem to be doing.
Leslie F.
Just watch & wait for now. Next blood tests in October
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