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 .
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 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!
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 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 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 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.
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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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 .
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4 ReactionsWelcome 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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1 ReactionHello 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!
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Like -
Helpful -
Hug
1 ReactionNo discussion on treatment options, only that all treatments had side effects
Welcome, @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 ReactionsI 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 ReactionThanks, Leslie, and hope you are, too.
Thank you for helpful answer. I am glad to hear you are feeling better.
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1 ReactionIt was for me. Since treatment, I am much better. When I had more hyper-viscosity I was out of breath often, upon exertion.
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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Like -
Helpful -
Hug
4 Reactions