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 Thehighlander 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))
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.
Beautiful day up in Inverness so just back from a walk.
I am great...... my story is rather long, hitThehighlander 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))
