My husband age 64 diagnosed last April 2018 with Waldenstrom with bone marrow biopsy, his main complaint was fatigue and did have a few episodes of numbing and tingling in fingertips occasionally, then in October he had an episode of severe headaches that were treated for a sphenoid sinus infection the edema was so bad along with headeaches they did an MRI/MRA of head which was normal, then they suspected Temporal Arteritis which they then did a bilateral biopsy that came back inconclusive, he was on a high dose of prednisone 60mg and has just weaned off as of March 1, he is still fatigued and now battling a URI, his Oncologist/Hematologist suggest treatment when his IGM level is 3,000 and his is 1600 now. He is frustrated with the not knowing and feeling so fatigued most days, he was always very active cycling, going to the gym etc.
Like your husband, I was diagnosed with Wm this past March. I experience the tingling and numbness in my hands and arms with progressive fatigue. I’m in the ‘wait and see’ phase. Like your husband, part of my diagnosis included a bone marrow biopsy. Your husband and I share the active live well, biking, walking, swimming, and the gym; I’m finding normal physical activity like doing gardening is becoming more challenging. How much of this is Wm or my aging? I appreciate you sharing your husband’s situation. One of my greatest fears is burdening others with my care as things progress. You are obviously a great help and support for your husband. My oncologist is hopeful advanced treatments will be found soon. Let’s hope he is right.
Mary can you tell me what meds she should be wary of?
She is on 3 chemo drugs right now. After 3 months her numbers are slowly going up or at least the Dr's say they feel good about her progress. Thank you!
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.
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.
My daughter has WM and is on 3 chemo drugs. It's been less then a year for her. She sees her Dr's once a week. Her iron is low which is causing her to be anemic, which makes her tired when she over exers. Have you had your blood levels checked lately? If you get an answer on why this is happening to you, will you post it? Thank you.
My daughter has WM and is on 3 chemo drugs. It's been less then a year for her. She sees her Dr's once a week. Her iron is low which is causing her to be anemic, which makes her tired when she over exers. Have you had your blood levels checked lately? If you get an answer on why this is happening to you, will you post it? Thank you.
I actually am anemic, which is how the lymphoma was diagnosed in the first place. So I guess that is the cause of shortness of breath with the slightest exertion. As for waking up at night short of breath, it seems much better if I sleep nearly sitting up with extra pillows. Thanks.
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
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?
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.
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?
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?
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Like your husband, I was diagnosed with Wm this past March. I experience the tingling and numbness in my hands and arms with progressive fatigue. I’m in the ‘wait and see’ phase. Like your husband, part of my diagnosis included a bone marrow biopsy. Your husband and I share the active live well, biking, walking, swimming, and the gym; I’m finding normal physical activity like doing gardening is becoming more challenging. How much of this is Wm or my aging? I appreciate you sharing your husband’s situation. One of my greatest fears is burdening others with my care as things progress. You are obviously a great help and support for your husband. My oncologist is hopeful advanced treatments will be found soon. Let’s hope he is right.
-
Like -
Helpful -
Hug
3 ReactionsMary can you tell me what meds she should be wary of?
She is on 3 chemo drugs right now. After 3 months her numbers are slowly going up or at least the Dr's say they feel good about her progress. Thank you!
-
Like -
Helpful -
Hug
1 ReactionI 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.
My daughter has WM and is on 3 chemo drugs. It's been less then a year for her. She sees her Dr's once a week. Her iron is low which is causing her to be anemic, which makes her tired when she over exers. Have you had your blood levels checked lately? If you get an answer on why this is happening to you, will you post it? Thank you.
I actually am anemic, which is how the lymphoma was diagnosed in the first place. So I guess that is the cause of shortness of breath with the slightest exertion. As for waking up at night short of breath, it seems much better if I sleep nearly sitting up with extra pillows. Thanks.
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
-
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 ReactionThank 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 ReactionI’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
2 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
2 Reactions