Waldenström's Macroglobulinemia

That’s great to hear I haven’t been engaged with anyone other than my haematologist and my gp that’s all I thought that they would say I should see a diet specialist or a health and physical fitness person but they have not said anything… I do have a lot of health problems with sore bones and when I get up and down it takes a toll it’s a huge effort and I can’t walk 20 metres without been out of breath I’d appreciate any help or contacts please

I am sorry to hear that you are not able to view your recent test results on line. It is helpful for us to be aware of our continued results.
I personally experienced being “short of breath.” For me, that improved as I gradually improved my physical exercise. I understand feeling exhausted and short of breath, but started with slow and short walks and increased slowly. It took months to experience improvement.
May I ask if you are seeing a WM specialist? If not, I can direct you to a new program with the IWMF for assistance with second opinion WM specialists.

Thankyou for your reply greatly appreciated, when I tell them anything I’m having wrong with me they think I’m crazy and literally blow it off and send me on my way after chemo finished November 21 I am still short of breath badly and my stomach hurts and swollen and pain they say I’m fine and don’t care to hear it and there not putting my results up to my health records for me to view anymore

Sorry to hear about your knee issue. I have never experienced a dent in my knee and not aware of any WM who have. It may be time to communicate with your hem/onc.

Yes it does sometimes within minutes up to an hour or can still be there day or days later I just want to know I’m not crazy..

Hi Ben, I'm tagging fellow WM-ers like @ejrquast @joannecathcart @newwaldenguy @sidm @kincarnati @danputz @nsh, on your question about getting a dent in your knee when you kneel to see if anyone else has experienced this.

@belcar45, does the dent go away after a time?

My knee has a dent in it if I kneel on it are my bones soft with WM
Hello, when I kneel down on one knee left alright for any period of time seconds to a couple of minutes, I am left with a very large dent in my kneecaps, wondering if with WaldenStroms macroglobulinaemia are my bones softer I’m not crazy a big dent in my knee cap for ages

That’s great to hear hope all goes well 😊 I was wondering if anyone knows what I mean when I say if I kneel down on my knee for any amount of time at all 10 seconds to minute or 2 I have an indent on my knee I think 🤔 my bones are soft upon pressure or something does anyone know what I mean the dent in my knee cap bone stays like it for hours sometimes longer

Thank you for sharing your experience. Hopeful news is encouraging for all of us. May your scan results be negative. Are you experiencing any symptoms?

I've had this for almost 7 years. Been in remission 3 years. Having PET SCAN end of month to see if any new tumors. The infusion treatments do work!!