[cloudspotterParticipant]

Hi Tony, Many thanks for your helpful and reassuring reply.
Thanks, too for the information about Kappa and Lambda light chains. I have to confess that, during the decades of monitoring, I never really understood them- maybe because I didn’t want to think about it too much.
Your advice sounds excellent, and I will do my best to follow it!

All the Best, Liz

[cloudspotterParticipant]

Hello Mulberry, thank you so much for your very prompt and helpful reply.
It helped me to understand the various factors involved.
I certainly didn’t know about cancer cells and iron!
Many thanks for your good wishes

[cloudspotterParticipant]

Hi again, everybody. I’m very relieved to say that, after all the usual tests, the Haematologists etc. could not find any evidence of Myeloma- just MGUS and Lymphoma in the bone marrow.
Thanks for all your help and support.
The specialist posts a copy of her letter to my GP on RD&E Exeter’s “My Care” system, and I can easily access my rather complex blood test results.
She says I am anaemic, because of the Lymphoma (sorry, this is a bit “off topic”), and also short of vitamin B12 and Folate. She would like to use chemotherapy on the Lymphoma *if* we can find something that wouldn’t make my neuropathy worse.
I would like to start treating the anaemia and B12/Folate deficiency *before* considering Chemo. Does anyone have any experience of this general situation, please?
Thanks very much

[cloudspotterParticipant]

Hope you have a wonderful holiday and Christmas, Mariposa- well deserved.
Also that these ominous discoveries don’t develop into anything!
All the best, Liz xx

[cloudspotterParticipant]

Thanks Tony- that’s very useful to know

All the Best, Liz

[cloudspotterParticipant]

Thank you so much for your replies, Mulberry and kh0305
This is the sort of thing that I was hoping to achieve through the forum
I’ve gathered plenty of “official” information through various channels, but I also wanted to hear about peoples’ personal experiences
I’m having to build up the sort of support in a matter of months that took decades after my lymphoma and peripheral neuropathy diagnoses. Myeloma UK has been a great help, I’m glad to say.
I’m pleased to say that my doctor, nurse, and the rest of the Haematology team at the RD&E hospital, Exeter, seem very capable, efficient, kind, and caring, so I am hoping for the best….
Thanks again, very much

[cloudspotterParticipant]

Thanks, Mariposa, that’s a very kind reply. These check ups can be a bit daunting, can’t they?
My sister in law has Parkinsons, and is a real inspiration. Needless to say, we have plenty to talk about on the medical front!
I do a “gratitude meditation” every morning. It helps me stay positive, which presumably must be good for my immune system, and it’s quite surprising the things that do actually go right in life without us actually noticing.
Wishing you all the very best of luck
Take Care x

[cloudspotterParticipant]

Hi Mariposa, and All

I’m so glad to hear that you “only” have MGUS, and I do hope that it never becomes a problem.

I was diagnosed with MGUS in 1999, then Low grade non hodgkins lymphoma (NHL) in the bone marrow in 2001.
Blood disorders can be *so* complicated!
As a result of this, my Paraprotein levels gradually rose to 75.6 grams per decilitre
Unfortunately, these paraproteins attack my peripheral nerves, and give me peripheral neuropathy
My mobility has gradually deteriorated, and I now use a rollator and a boot buggy, and hire a “Tramper” all-terrain buggy when I can
I have lost a huge amount of manual dexterity, and find it extremely difficult to write, handle cash, open jars etc.
My Haematologist is concerned that the MGUS may finally be progressing to Myeloma (I’m nearly 71 years old), which he would want to treat with chemotherapy.
My concern is that all chemotherapy drugs damage the nerves, with Thalidomide and Vincristine being the worst offenders. I really don’t want my neuropathy to get any worse, or to start getting neuropathic pain (which so far, I’ve escaped). Unfortunately, other treatments (eg immunotherapy) can have side effects too. At my age, I already have various health issues (eg deafness and tinnitus, cataracts, etc etc)
The Haematology staff, and “Ask the Nurse” have been very helpful, but does anyone have any personal experience of this situation?
Thanks very much

[Author]

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