new here new diagnosis for mum

Hi again Pink Pigeon and well done navigating across to the group.

Some blood cancers can be very complicated just like Lymphoplasmacytic lymphoma (LPL).

This is a low-grade (slow-growing) non-Hodgkin lymphoma. It develops from B lymphocytes (a type of white blood cell) that become abnormal. 

LPL often fits into the ‘low grade’ or ‘indolent’ groups when the lymphoma cells are dividing slowly. Low-grade non-Hodgkin lymphoma can develop over a long period of time and is often at an advanced stage by the time it is diagnosed.

There are a number of folks in the group with LPL so let’s see if they are looking in.

I am in no way an expert in all the issues surrounding all the NHLs but do check out the Lymphoma Action where you will find lots of Lymphoma Specific Information, great videos and also details about our regular regional online Lymphoma Zoom Support Groups and indeed our great Lymphoma Buddy Service.

Here is a link to the Lymphoma Action info on LPL https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/lymphoplasmacytic-lymphoma-and-waldenstroms-macroglobulinaemia

Always  happy to talk more.

I was having a quick look at “haemolytic anaemia and cold agglutinin disease”..... and truly have no answer I can give, although a blood cancer can develop so many other blood and bone marrow complications so these are questions for her team.

10 months after my second Stem Cell Transplant my team said “.... well Mike it looks like your bone marrow has went on strike and we actually don’t know why”...... 4 months of blood transfusions the bone marrow decided to wake up..... it can be that complicated.

thank you ..its all very complicated isnt it?

Yes it’s all science. We have had long serving very experienced medical professionals come through the Community and it was totally baffling.

Collecting clear information is so important so l asking the correct questions of  Heamatology is essential and also talking with others who have walked the walk.

Happy to help as best as I can.

Indeed it is incomprehensibly complex. I had a (temporary) form of autoimmune hemolytic anaemia (AIHA). It was caused by a cytokine storm that was in turn caused by Angioimmunoblastic T-Cell Lymphoma (AITL). In my case, treatment of the underlying lymphoma lead to the eventual resolution of the AIHA. In your mum's case, the LPL causes overproduction of IgM and that itself can cause the breathlessness. "It would appear" that the resolution of this would be for her to entertain (if not actually enter) active treatment to suppress the disease. 

thank you for taking the time to reply..I am trying to find out a reasonable amount of info to help but not scare her 

Hi,

I can comment on the haemolytic anaemia but not on your mums other conditions. I had haemolytic anaemia a few years ago and became very breathless and tired, but that was when my haemoglobin had become very low. After treatment that went away. I was treated with steroids and when the symptoms were severe they gave me a transfusion which brought my blood back to normal for a period of time. Eventually they did stabilise me and I lived a normal life even with the condition.

hope this helps

thank you for taking the time to reply. My understanding is mums breathlessness is due to the anaemia , she has cold agglutinin haemolytoc anaemia ( CHAD) and the lymphoma. There was talk of a blood transfusion but at last check her Hb was 92 so its been put on hold it has its associated complications because of the CHAD. .. I think !. We are hoping to start rituximab soon, she has her second covid vaccinnation booked but there is hope she can have it earlier.