hi all just been diagnosed with Lymphoplasmacytic lymphoma after spending months going in and out of hospital with ITP. Finally after being on high steroids - prednisone- I had a bone marrow biopsy which indicated the Lymphoplasmacytic lymphoma. I had 4 sessions of Rituximab and my consultant has now told me that this has not worked and I need DRC treatment.
im quite confused as initially she said it would take 90 days to work, and it has not been that long. Also I’ve managed to get down from 60 mg to 5 mg on alternative days and my platelet count has stayed at 107 whereas previously it has been 20 with bruising, nose bleeds and mouth blood blisters.
i have asked if I can come off of the steroids to see what happens and if my platelet count drops and she has said yes and will check it again next week. I can’t understand why she has not suggested this and it has taken 6 months to get to this stage and I am very frustrated as feel no further forward now than then.
also my Paraprotein is, she says high at 5 but I have read this normal which is even more confusing.
i wondered if anyone else has been in this situation. I have been told I am unique but this doesn’t help.
would welcome any support
thanks
Hi Smiffy2512 and welcome across to this corner of the Community and sorry to see you are on the cancer rollercoaster again.
So sorry to hear your diagnosis, Lymphoplasmacytic lymphoma as you know is one of the rare 60 types of Lymphomas and this often results in it being hard to talk with others in the same position. I was the same with my type of NHL, my story is in my profile, it’s rather long but it is 21 years long and does have a positive ending.
I do understand your thoughts about the decisions your consultant is or is not taking but for me it was persistent questions and a need to understand.
I have to say that my team did put my case out for review to UK and World Wide experts...... a good question to ask him/her.
I had a quick check on the site and we have had a few come through the site with Lymphoplasmacytic lymphoma so let’s see if they are still looking in.
You could also put Lymphoplasmacytic lymphoma into the group search tool and you can see their posts. You can then send them a reply and try and connect.
Always around to listen and support as best as I can.
Edit: The Lymphoma Action Site is a good place to find more detailed information - try this link:
Hi, thanks for your response, good to know I’m otthe only one with ITP.
My consultant wanted to start chemo last week but I asked her to hold off for a week and this week platelet count is 164 so imVERY glad I asked her to hold off so hoping that the Rituximab has just 
starting to work - here’s hoping
This is just an inconvenient phase that I will get through.
