A dear friend of mine, whom I met via the blog many years ago, has been dealing with an unusual and very serious condition for several months. She asked if she could post an appeal on the blog to see if anybody else has had a similar experience or can help her in any way. If you have any information that might be useful to Clare in this very difficult moment, please let me know, or leave a comment on this post. If you want your comment to remain private, I will definitely respect your wish and send it only to Clare.
Thank you very much.
Here is what she wrote:
I’ve had smouldering Myeloma for 13 years without treatment.
Over the past year and a half I have become more and more out of breath. I thought it was just Asthma. I had an echocardiogram last March which looked normal. Suddenly, in July, my legs swelled up, and I felt even more out of breath and tired. My cardiologist is concluding that I must have Protein Amyloid deposits in my heart from the Myeloma. They couldn’t see any on a heart MRI, however, so I have a heart biopsy coming up to be 100% sure.
I just wonder if anyone has AL Myeloma or any experience of Amyloids from Myeloma.
It would be great to hear from you.
Thank you.
Clare, UK
Dear Clare,
I am so sorry to hear about your edema and lack of breath after living with smouldering myeloma for 13 yrs. I’ve been living with myeloma for about 19 years and have gone from active (lost kidneys when I was originally diagnosed) to smouldering myeloma after stem cell and 2 kidney transplants. God has certainly blessed me and preformed many miracles in my life for me to be alive today. With respect to the amyloids, I understand that all myeloma patients, will be producing these proteins all to different degrees. Before my stem cell transplant back in 2005, I recall that they wanted to perform a heart biopsy to check for amyloids because my heart was considered weak at the time. I asked the simple question what they would do if they found amyloids and the response was nothing. My response to that was don’t bother. Now that was about 20 yrs ago and maybe amyloid treatment has advanced, but if it hasn’t then maybe you will be in the same situation as me. Anyway, after reaching out to the almighty from some very dark health episodes, my heart became stronger even after all the years on dialysis and chemo. I’m not sure if this has helped, but my thoughts and prayers are with you Clare. God bless you.
Very sorry to hear this Clare. I had suspected the same and had a fat pad biopsy and a post colonoscopy mucous membranes biopsy on Congo red checkup. This was a year after the colonoscopy so I was lucky they still had a specimen. Both luckily negative. In case you had any operation where they can get one maybe there is no need for a heart muscle biopsy.
Regards and best wishes
Mascot
Hi Clare,
I saw someone took IP6 & Curcumin and got a good result. (IP6: take 8 caps two times daily and on an EMPTY stomach)
I hope this helps.
Ps. I took IP6 for a long time. “IP6 Gold” is a better choice.
I just saw this now. My father was diagnosed with smoldering MM and Amyloidosis. He started swelling in the legs and we found out that he had proteinuria from AL amyloidosis in the kidneys (testing confirmed it). Later on we found out that he also had amyloidosis in the heart. I found a study done by Professor Hunstein, who he himself was diagnosed with AL amyloidosis in the kidneys. His website is here: http://hunstein-egcg.de/en/al-egcg.html , and focuses on using Green Tea extract which has shown dissolve the amyloid proteins in the organs. My dad took the green tea extract plus proteolytic enzymes and after a short time frame, probably 6 months his kidneys were back to normal and the proteinuria was no longer an issue. They were ready to put him on dialysis. His heart also improved greatly, with the measurements going back down in size to normal.
Wow. Thank you exactly what I needed. Green Tea, here I come !!! BIG ? THANKS
Well that didn’t last long. I started on Velcade a month ago and no green tea allowed !!! Last time, exactly 10 yrs ago I started treatment on Velcade it sorted my free light chain to normal, but the proteinuria stayed at a gross number.