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Diagnosed with AL Amyloidosis. What can I expect?

Posted by jenrico @jenrico, Mar 13, 2016

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

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tomy | @tomy | Jun 21 7:57am
In reply to @dandgk721 "Tomy...I have been on this journey with my husband for the past year. amyloids started in..." + (show)
Profile picture for dandgk721 @dandgk721

Tomy...I have been on this journey with my husband for the past year. amyloids started in in gastrointestinal tract, nerves, heart, skin and bone marrow. 4 different chemo meds failed. We currently are on teclistamab which is first drug to actually decrease the amyloids. We are optimistic that he can get at least another year. His disease was caught late and so many different organs have been infected with amyloids he does not qualify for stem cells or cart t. You may want to ask your doctor to do an iron study. If you have low iron or anemia that could be a possible cause for your shortness of breath. In addition to checking your iron levels also check your B12 levels. If they are low, iron and vitamin b12 supplements may improve your shortness of breath.

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Thank you. I do have anemia because of multiple myeloma. Iron is ok. I do take b12. I have al amblydosis which has compromised my heart’s dystolic function

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dandgk721 | @dandgk721 | Jun 21 9:54am
In reply to @tomy "Thank you. I do have anemia because of multiple myeloma. Iron is ok. I do take..." + (show)
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Thank you. I do have anemia because of multiple myeloma. Iron is ok. I do take b12. I have al amblydosis which has compromised my heart’s dystolic function

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Understand as amyloids have affected my husbands heart as well to point he needs heart transplant for which he does not qualify. Three things can have helped us
1. stop and rest..
2. Try sitting in "tripod" position...put your hands on legs and bend at the waist...this will help expell air better
3. Try "purse" breathing....https://www.youtube.com/watch?v=7kpJ0QlRss4&t=4s
Ive attached a video from the American Lung Association to show how to do this and why it works.

My husband does have sleep apnea which also causes issues with oxygenation. Our pulmonary specialists recommended cpap or bipap at night which can help with oxygenation during the day

Prayers for peace and understanding for answers on your journey.

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java352 | @java352 | Jun 28 11:19am
In reply to @colleenyoung "Hi @nick0820, I want to add my welcome. You may be interested in this video by..." + (show)
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Hi @nick0820, I want to add my welcome.
You may be interested in this video by Mayo Clinic experts. Martha Grogan is a leading specialist in amyloidosis
+ Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

I appreciate your willingness to continue sharing about your journey. Don't hesitate to ask questions too.

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I would like to view the video but receive a message that it is not available. My husband was diagnosed in March with Wild AttR primarily impacted his heart. He recently had a fat pad biopsy that had a "negative" result noted on his portal. I'm trying to determine what that means. It has been quite a long haul and few medical providers in our area ... South Central PA.... have any experience with Amyloidosis. His last scheduled test is for a Nuclear PET Scan in two weeks. We are concerned with the lack of expertise including communication and management of this disease. Mayo Clinic is quite a distance. Are there telemedicine consultations available? Thanks.

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