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
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.
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.
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.
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!
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.
Hi Beverly, my daughter was told she will now be treated for the same thing, after being treated for Multi Myeloma these last 6 wks. Dr now thinks it is Lympho-plasmocytic. She is anemic, tired and cold all the time too. They are going to change her meds. For now they are giving her a break from them. Protein is high and kidney he has concerns. As her mom, I don't know what to expect next. I hope to hear more from friends on this grp. Everyone has been great!
I am inclined to think my bad back pain, fatigue, and numbness in finger tips is due to WM in addition to my CLL The doctor at Emory Hospital could have told me this during a visit but declined, so when it comes to great doctors and treatments, I distrust everybody.
I was diagnosed with Waldenstrom macroglobulinemia July of 2021. I went to the emergency room for severe back pain and after six hours I was admitted to the hospital for a possible kidney stone and kidney failure. The next day the Dr. said I had good news and bad news. The good news I passed the kidney stone and the bad news I had CANCER!
I felt like a character in a Charlie Brown cartoon where everything was mumbled, and I could only hear the word CANCER!!!
Initially, it was believed I had Multiple Myloma. Upon further blood work and a bone marrow sample which was sent to Mayo, it was determined I had Waldenstrom's macroglobulinemia. I started several plasmaphersis treatments and one chemotherapy with bendamustine and rituximab.
Several weeks later, and about thirty pounds lighter, I was readmitted to the hospital after a visit with my oncologist.
I was unable to eat anything and developed a SEVERE RASH covering my entire body!! I was itching from my head to the bottom of my feet. I was redder than a ripe tomatoe, had swollen lips and eventually my skin peeled from the top of my head, ears, hands, back and almost my entire body. Later the rash seemed to correlate with IgM levels.
While in the hospital oral chemotherapy was started using ibrutinib. Upon discharge from the hospital it took about three months for my rash and skin peeling to stop. I started to eat actual food and not supplement drinks. The food no longer tasted metalic nor did I have to use plastic utensils.
My oncologist arranged for me to go to Mayo Clinic in Rochester, MN. I spent two days in Mayo and was referred to Dr. Binder for consultation. I was impressed with the time he took to listen to me and answer questions I had. He reaffirmed my oncologist in Sioux Falls, SD was doing what he could and was right about how to treat my condition.
I did several blood draws and a twenty-four hour urine sample. Dr. Binder suggested further testing to help determine issues I am having with pain in my hands etc.
I am so glad I have a strong support system of God, Family and friends!!!! I couldn't ask for better Physicians and people taking care of me.
I have had CLL since 2017 and now another non-hodgkin lymphoma. My back hurts all the time but thought it was my Arachniphobia which causes nerve pain. Finger tips are now numb in right hand. After hearing about your rash and pain after treatment, I am inclined to reject Ritux and Benda when the Dr's decide to suggest treatment for me. I have received more info from you today than my oncology visit to Emory Hospital this week! Thanks.
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.
Connect
Connect
Like
Helpful
Hug
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 ReactionI 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.
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 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.
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!
-
Like -
Helpful -
Hug
1 ReactionLike 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
4 ReactionsWM is better than MM but be wary of treatments.
-
Like -
Helpful -
Hug
1 ReactionI am inclined to think my bad back pain, fatigue, and numbness in finger tips is due to WM in addition to my CLL The doctor at Emory Hospital could have told me this during a visit but declined, so when it comes to great doctors and treatments, I distrust everybody.
I have had CLL since 2017 and now another non-hodgkin lymphoma. My back hurts all the time but thought it was my Arachniphobia which causes nerve pain. Finger tips are now numb in right hand. After hearing about your rash and pain after treatment, I am inclined to reject Ritux and Benda when the Dr's decide to suggest treatment for me. I have received more info from you today than my oncology visit to Emory Hospital this week! Thanks.
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.
-
Like -
Helpful -
Hug
1 Reaction