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FormerMember
FormerMember
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Hi. My first post so I would be grateful for any insights to secondary bone cancer. I was diagnosed with stage 3/4 Non Hodgkin Lymphoma nearly 3 years ago. I was on watch an wait for 2 years when after a increase in lymphoma in my chest and neck it was decided to go for radiotherapy. I can’t have chemotherapy because of a MRSA infection in the bones in my foot. I’m allergic to the antibiotics that will kill this. Not a easy case for my doctors. Had that in Jan 2020 and the lymphoma receded. I felt really unwell since November and saw my doctor face to face 2 weeks ago after a year of télé appointment (covid19 

after a Pet scan they found that it was now in my shoulder bones and neck. He didn’t offer any further information and when I got home was starting to worry. I then did a silly think and looked it up. Scared myself silly. So this morning I messaged McMillan and they have been great. Sent me some useful information. They said to say hello to this forum as you can be a great help. So Hello. Hope you can offer any info that you think might help

xxx

  • Hi  and welcome to the Community. I am Mike  and I help out around our Non Hodgkin’s Lymphoma Groups.

    It will be interesting to hear what your team say what this is.

    We have had a few folks over the years in our NHL groups develop Primary lymphoma of bone (PLB), it is rare but not unheard of happening..... and this is not necessarily seen as secondary bone cancer 

    If you find your way onto this type of journey then do check out our various NHL Groups.

    Also good to see you have posted a question to our nurse team ((hugs))

    General Non Hodgkin's Lymphoma

    Follicular Lymphoma

    Diffuse Large B-Cell Lymphoma

    Mantel Cell Lymphoma

    T-Cell Lymphoma

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember

    Hi. I’m going to email my cancer nurse. The doctor said that the lymphoma was now in my shoulders and across my back. I had to ask him if I had heard right. He didn’t explain what would happen or if treatment was needed. I told him that for 6 months I had been using ibuleave on both shoulders for very bad pain. He didn’t elaborate. I also have a concern in my left leg. Over the last year this has bowed and the pain is terrible. Again he said nothing. Not sure I have been given any information regarding this and it has left me really worried. I know that the team are really busy but this is very important. Thanks for responding. It’s good to know that someone is listening 

    sending hugs xxx

  • Hi again, I do think you need a good talk with your team so you can get a clear understanding of what is going on.

    After re-reading your post and reflecting on other folks I have talked with over the years, many have reported NHL in multiply sites over their body including Bone Marrow .

    I had a skin NHL so my body at times was 70% covered with visible tumours, also Bone Marrow involvement and eventually in lymph nodes.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Hi Mike. I’m just composing a email to her. Hopefully she will let me know what this is. I’ve not had the best experience with this doctor and normally take someone with to to verify what he says. Reading about your journey is heartbreaking. I hope your in a better place now. I’ll let you know how things pan out 

    stay strong xxx

  • Beautiful day up in Inverness so just back from a walk.

    I am great...... my story is rather long, hit to have a look but make a cup of tea or coffee first.

    In short, I was diagnosed in 1999 with a rather rare and difficult to treat Stage 4a Low Grade Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma.

    I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”

    I see you have now joined the FL group so like my CTCL your FL is Low Grade slow growing and is very treatable but incredible

    After years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream.

    Good luck with your email ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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