Waldenstroms and amyloidosis

Julie, I moved your message to the Cancer group where you can meet others who may share your husband's diagnosis. I suggest you read the stories and experiences that @gaetanche @mvpdda @tmousetis and @jenrico share in the discussion called "Diagnosed with AL Amyloidosis. What can I expect?" http://mayocl.in/2bQSFQR

@jan52241 @irishk will you share about the treatments you've been getting for amyloidosis and what AZJulie might expect as a caregiver for her husband?

I went to Mayo Clinic in 2012 when my brother had a stem cell transplant for amyloidosis. There are different types of amyloid, his affected his nervous system. He has done well since his stem cell transplant. There is an amyloidosis research consortium where you can get more information. My brother went to DC last year to attend a forum where the FDA was present to hear patient stories first hand.
http://www.amyloidosis.org/amyloidosis-research-consortium/
Mayo is the best.

irishk

Thanks for the consortium. Very helpful. Ken is too old for sct. Starts chemo tomorrow. Hopefully Mayo can get it stopped.

@azjulie How are you doing? How did chemo go for Ken? I bet it was a long day.

He sailed through the ritoxin infusion. Been taking citoxin for 3 days with 2 more to go and so far, so good. Slept in this morning tho. They say they can't reverse the damage but hope to stop it. Still no appointment with the neurologist where we hope he can help the pain in his hands from neuropathy. Need more patience.Thanks for asking. PS: we're waiting for his hair to fall out.

Glad to hear it Julie. Neuropathy can be a challenge to manage. @johnbishop posted an interesting article about living with neuropathy here: https://connect.mayoclinic.org/discussion/any-caregivers-for-peripheral-neuropathy/ You may be interested in reading it.

My Dad had mild neuropathy due to diabetes and chemo made it worse. They lowered the dose of the drug know to cause neuropathy for his last 3 chemo rounds so that the damage would be less likely to be permanent. Is your husband's neuropathy caused by the chemo or did other causes?

He has autonomic neuropathy caused by his Waldenstroms (non-Hodgkins lymphoma). Not diagnosed until recently so pretty bad case. It is crawling up his arms and legs. Don't imagine the chemo helped it. Don't expect them to reverse it but hope to stop the spread. He wears tight golf gloves on his hands and says it cuts the pain in half. Does not take any pain pills as does not like the way they make him feel. Also is on cumondum because of blood clots.

My understanding of Waldenstroms and amyloidosis is that it is a genetic disease that strikes primarily in people's age in the 60s. My wife developed it at 68. That blood borne disease then compromises the immune system. That then creates a fertile area in the body where other cancers can grow. In my wife's case she had six tumors in her head.Chemo and light radiation helped, but the area behind her head was very aggressive and she passed after 3 months. My paramount concern now is that if it is a genetic disease, how can my my family and well as other family members be tested for it. If they are, what is the best treatment for my family. The Waldenstrom Foundation may also have useful information there about this insidious disease. Not to upset anyone, but I was told Waldenstrom is an incurable disease. I believe if we garner our families support to battle back this disease, we can then have a cure which is our ultimate goal.

Thanks Warren. He will take retoxin and dex (sp) every three weeks and 4 pills of cytoxin for 5 days those weeks too. Had one session and made it thro but sure doesn't feel good. He's not used to feeling so week. Will ask the doctor about the genetic part when we see him Oct 3.

Welcome to Connect Warren. So great to have someone to connect with Julie who understands what she is facing.

Julie - What other questions do you have for the doctor at the upcoming appointment?