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Anyone In This Group Has Multi Myeloma And AL Amylodosis?How Was It Discovered?what Are Your Treatments? Did You Have To Get A Specialist

A MyAmyloidosisTeam Member asked a question 💭

I have a MM specialist but not an Amyloid specialist. My MM ( Multi myeloma) specialist says that my chest wall amyloid tumor was caused by the MM.Treatments for Amylodosis is very much the same for the Induction treatment for MM. My MM specialist states that he is monitoring my Amylodosis along with my MM. What are your thoughts?

I just finished my Induction tx for MM and may have to have Stem Cell Transplant. Strongly leans towards that.I 'll know for certain 1/27/25. Does Stem… read more

January 22
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Organ Damage and AL Amyloidosis Read Article...
A MyAmyloidosisTeam Member

Oh gosh Helen I’m right there with you. I loved my job and my independence. The whole thing is infuriating sometimes but I try not to let it get to me. I find the winters are challenging not being able to get out of the house with my all terrain walker! April can’t come soon enough.

God bless ❤️

January 22
A MyAmyloidosisTeam Member

If you read my story it will help answer some questions. It’s too long to retype 🙄 I’m on disability. I can’t work. I was a medical assistant at a pediatrician. I hate that my independence has been taken away. I’m trying to get used to my new normal. I was 57 when I got sick. I had smoldering myeloma but got downgraded to MGUS after treatment. Any other questions I’ll be happy to answer for you. Sit tight it’s a long road but it does get better. ❤️‍🩹

January 22
A MyAmyloidosisTeam Member

It sounds like you're navigating a complex journey with both multiple myeloma (MM) and AL amyloidosis. Based on my knowledge base:

1. Specialist Care: While MM and AL amyloidosis share treatments like chemotherapy and stem cell transplants, consulting an amyloidosis specialist can provide tailored care, especially for Show Full Answer

It sounds like you're navigating a complex journey with both multiple myeloma (MM) and AL amyloidosis. Based on my knowledge base:

1. Specialist Care: While MM and AL amyloidosis share treatments like chemotherapy and stem cell transplants, consulting an amyloidosis specialist can provide tailored care, especially for organ-specific concerns.

2. Stem Cell Transplant: This is a common treatment for AL amyloidosis and MM. It can help reduce amyloid production and improve symptoms, but eligibility depends on overall health and organ involvement.

3. Maintenance Therapy: Maintenance for AL amyloidosis often includes drugs like Velcade (bortezomib), Revlimid (lenalidomide), or steroids. Your MM specialist's approach may overlap.

4. Side Effects: Fatigue, weight changes, and other side effects are common. Managing these often involves rest, nutrition, and working closely with your care team to adjust medications.

5. Organ Health: It's great your organs are doing well. Monitoring is crucial, as amyloid deposits can affect the heart, kidneys, and nerves.

6. Work and Disability: Many people adjust work based on their health. Applying for disability depends on your ability to work and the impact of symptoms.

Your journey is unique, and connecting with others who share similar experiences can provide support. Wishing you strength and clarity as you approach your next steps, including the decision on stem cell transplant.

January 22
A MyAmyloidosisTeam Member

Thank you Theresa 💕 I worked in Occupational Therapy. No longer can I meet my job description.
I was written out of work 5/6/24.
I am so use to helping others and bringing in a steady income. Now ,I am at the mercy of others. I've always treated people and my patients the way I would treat my mother( whom I love ), a family member or myself. So far I have.
Unsure if you read my story .Like you too much to retype. I am going to re - read your story.
May God bless you on marathon of a journey.
Sending love , hugs and prayers!

January 22

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