I would like to introduce an ongoing new series of posts, focusing on interesting and inspiring patient stories. I started doing this a while back, but lost focus and stopped featuring your stories regularly. That was a mistake!
I have run into so many interesting survivors as I travel around the country. So many that I have started interviewing them and asking if they would pass-along details about their myeloma journeys for me to post.
I am now sitting on a half dozen or more of these patient “snapshots.” I will start running them tomorrow. But before I do, I wanted to share more about myeloma’s close cousin, amyloidosis.
First, I wasn’t aware that long term dialysis–especially hemodialysis–can cause amyloidosis.
Here’s a link to a short note I found about this on the Kidney Cares Community website:
More than 5 Years Hemodialysis can Cause Amyloidosis
I have been running into more and more amy/myeloma patients lately. I can only imagine what it’s like, fighting the cancer war on two fronts. (My inconvenient brush with melanoma doesn’t count!)
Amyloidosis affects different patients in different ways–much like multiple myeloma–only more so. I met two patients recently that were both battling laryngeal amyloidosis. Each were struggling to speak.
Here is an abstract from a study I found that focuses on laryngeal amyloidosis. I have highlighted in BOLD some points I felt were most important:
How to deal with laryngeal amyloidosis? Experience based on 16 cases.
Wierzbicka M, Budzyński D, Piwowarczyk K, Bartochowska A, Marszałek A, Szyfter W.Source
Department of Otolaryngology, Head and Neck Surgery, Poznań University of Medical Sciences , Poland.
Abstract
Introduction: Amyloidosis is characterized by the deposition of amorphous fibrillar protein (amyloid) in the intercellular or intracellular space. Localized amyloidosis is rare in the head and neck area. In Polish literature of the last decade it has been the subject of case studies. Aim: The goal of the study was to carry out a retrospective analysis of patients treated for amyloidosis in the Department of Otolaryngology and Head and Neck Surgery of the Poznań University of Medical Sciences in the period from 2000 to 2009. Based on the collected clinical material, the authors made an attempt to determine the most frequent anatomical location of amyloid deposits and the most frequently affected organs, the type and duration of symptoms, the therapeutic approach, further diagnostic measures taken and the final outcome of the treatment. The next goal was to assess the number of microlaryngoscopies performed in patients with amyloidosis affecting the larynx as compared to the overall number of such procedures. Material: The detailed analysis included 16 patients with laryngeal amyloidosis. Results: Amyloidosis of the larynx was found in only 0.52% of patients undergoing microlaryngoscopies in the period from 2000 to 2009. In the vast majority of patients (11 of 16), there was no suspicion of amyloidosis in the initial diagnosis. Only the histopathological assessment definitely confirmed the nature of pathological changes in the larynx. Glottis was the most common location of amyloid deposits in the study group. In all cases, additional studies and long-term monitoring of the postoperative course excluded generalized amyloidosis. Conclusions: Laryngeal amyloidosis is very rare, however it should be considered in the differential diagnosis in patients with laryngeal dysfunction. Surgery remains the treatment of choice in most patients, although the attempts of radiotherapy are undertaken. Preserving the normal function of the organ remains the priority.
I hope both of the women I met feel “special,” because as you can see, amyloidosis of the larynx is extremely rare. Add myeloma to the list, and let’s just say that with bad luck like theirs, I wouldn’t be heading to Las Vegas any time soon!
I’m “betting” that most of us take our ability to speak for granted. I know I do! I hope that their luck improves soon…
Tomorrow I will run the first installment of my patient snap-shot series. Until then, get up and get moving–even when it’s hard to do.
Feel good and keep smiling! Pat
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