Lymphoplasmacytic lymphoma

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Hi everyone,

I was diagnosed with lymphoplasmacytic lymphoma some months ago and am currently on active monitoring.  I have experienced rib pains and terribly itchy skin on my arms for all of that time but I'm informed that this isn't usually associated with the type of lymphoma I have.   

Does anyone out there have these symptoms, too, and have you been told the same thing?

  • Hi again  ..... I have to say that based on the many years helping out on this Community but also as a volunteer on the Lymphoma Action Support Platforms there is no definitive rule as to how Symptoms show their faces......

    We could line up 10 people with the same type of NHL (even with Lymphoplasmacytic Lymphoma (LPL)) and get 10 different stories.

    Itching is indeed a recognised symptom........ but more so in Hodgkin's Lymphoma....... but having lived with and been treated for a skin Lymphoma I can tell you that skin is very reactive to changes in the bodies metabolism and it is reported by many people across the Lymphoma types.

    I can't help with the rib pains......... but from my first hand experience, once my mass in my neck started growing it enclosed around nerves and this caused pain on and off up and down my Lefts side of my body........ at times bad down my spine and ribs.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you for coming back to me Highlander - it was helpful.

  • Sorry to hear of this. Whilst the lymphoma cannot be ruled out as the cause, the stress and anxiety of it all can certainly produce chest tightness/rib pain and skin rash. Anxiety is capable of producing over 100. physical symptoms, with no actual disease being present. I remember here that our bodies are capable of producing. only about 150 distinct symptoms. You might enquire regarding at least some temporary help with anxiety - as it is often invisible to oneself. 

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    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.

  • Thanks PO18guy.  I appreciate you taking the time to come back to me.  

  • The reason I mentioned it was that, before cancer, I was under a lot of job stress and did have chest tightness and some pain. All medical tests were spot on, so it indicated the level of stress I was under. And if a cancer diagnosis and treatment is not stress, I do not know what is! 

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    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.