I’m at hospital again today, waiting in line to see my cardiologist to discuss my recently diagnosed Amyloidosis. Same time last week I was with my Oncologist discussing CLL and the week before that my Neurologist discussing my Polyneuropathy.
Is it a stretch of the imagination that everything is related and stems from my IGm being up in the 30s when 0.5-2.0g/L is the norm?
Initially the IGm was noted by my GP, back in 2014. That led to tests revealing CLL in 2015. Then 18months of nothing started thoughts of MGUS. Then WHACK, 12 months ago everything hit me at once. CLL, heart issues leading to an ablation and tests revealing global enlargement and of course, fast track to treatment of CLL, with Ibrutinib and Venetoclax which has been awesome.
Anyway, as I wait I can safely say the CLL drugs have been marvellous and not only am I feeling pretty awesome, my bloods are almost all back in line. Apart from my IGm.
So the question that Inhave asked all of my consultants separately is “is everything related and if so, surely you should be speaking to each other?”
Anyone else in the same boat as me? If so, I would welcome your comments.
For the record, I am not complaining and feel blessed that the medics have saved my life and helped with its quality too. I just sense that I am on to something?!
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Kods
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It is quite rare, but not unheard of that your CLL clone is releasing IgM causing your symptoms. More commonly it is a different plasma cell clone producing and releasing IgM. Take a look at these papers and discuss it with your specialists.
Systemic amyloidosis associated with chronic lymphocytic leukemia/small lymphocytic lymphoma onlinelibrary.wiley.com/doi...
and
AL amyloidosis associated with IgM paraproteinemia: clinical profile and treatment outcome bloodjournal.org/content/bl...
"Investigations for the clonal disorder in IgM amyloidosis should focus on accurate characterization of the underlying clone to select an appropriate treatment regimen."
My CLL clone spews out a kappa light chain that causes Raynaud's symptoms and joint pain.
Hi Kods...Like you, I have CLL and its expression is in my IgM. I first began treatment in December with Ibrutinib and then Gazyva infusions were added in January. My beginning IgM levels were 5000. Everything was going swimmingly until I began to have respiratory issues that resulted in my having to quit the Ibrutinib 30 days ago. Since quitting, my IgM has gone from 600 to 1200. My doc is looking into replacing the Ibrutinib with Calquence. Let's stay in touch...we are somewhat anomalous in the way our CLL expresses itself. Best wishes, Janice
Bless you Janice. It is all of our worst fears that materialise. I first heard of IgM from my Father who had it 'high', but lower than my first presentations. It is a significant factor and one that tends to get overlooked. The effects of a high IgM have led to all sorts of issues, respiratory like you but also amyloidosis and then the peripheral polyneurooathy. It's all rotten, but as time goes on I find it's my new normality and I stress much less. It just sits there in the back of my mind.
Anyway, my regime of ventoclax and ibrutinib is winning. I am not under any illusion that I will live a long life, but for now I'll take this.
Rest assured even 10 years ago this CLL would be killing us off, but I am meeting people all the time that are 10 years + on immunotherapy and doing great. Keep the faith. I try and say to myself live with it rather than die from it and you might just beat it? I wish you well and if the above reads like crap, I'm not surprised but I blame the meds😂
Glad to hear that the venetoclax and Ibrutinib is working. I’m on Gazyva and will be adding Calquence soon. I was diagnosed in 2017 and started treatment in 2018 due to elevating IgM. I am now 56 years old. How old are you? Who is your doctor? Where are you located?
I’m 56 and located in Los Angeles. I’m glad to hear that Venetoclax is being used in England. I wasn’t sure if it was approved as a front line therapy in the UK.
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