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azjulie
@azjulie

Posts: 16
Joined: Aug 30, 2016

Waldenstroms and amyloidosis

Posted by @azjulie, Sep 8, 2016

Diagnosed with the Waldenstroms a year ago, just today with amyloidosis. Will start treatment next week. Anyone have these or know anything?

REPLY

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?

@colleenyoung

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?

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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

@colleenyoung

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?

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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.

@colleenyoung

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

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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.

@colleenyoung

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

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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?

@colleenyoung

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?

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know the AL amyloidosis is in his kidneys and the neuropathy but is systemic so where else is it. Been assuming he is too old for stem cell transplant (75) but know what they say about assuming. Dr will have new blood test results at next appointment which will tell if there is improvement. Still no appointment with the neurologist at Mayo. Pain in his hands is miserable and spreading up his arms and legs.

Julie, if you’re at Mayo, there is generally a social worker assigned to you as part of your health team. Speak to them and indicate that you need an earlier appointment because your husband’s disease has had an exponential increase. Hopefully the social worker can cut the red tape for you to see the doctor earlier. Also, I suggest that you keep your calendar available, either written or on cell phone or both so you can jot down new date and info.[if paper calendar, appointments in red, other general personal appointments in black] You should have access to Mayo’s portal. When a new date is set, you can go there and see it and other appointments as well. If that is not possible to register at portal, then call “Scheduling” and ask them if they have the appointment change that the social worker helped with you. If they do, you can request that they mail you all upcoming appointments.
Other questions: Prognosis? What type of meds for pain? Opoids may be addictive. Anything else for pain? Also, meditation is good for de-stressing for both of you. Exercise, even walking is good. you can do that together. Take Smart water with electrolytes or Gatoraide, wear good walking shoes, Just go at the pace that is comfortable. Take cell phone. Stay in fairly level streets or parkland. He should not walk alone at any time. Consider a mental health counselor that may ease his pain and stress. The social worker assigned has outside names to help.
I wish you well. I have to go. have my own issues to content with. Take care and be well.

@warrens

Julie, if you’re at Mayo, there is generally a social worker assigned to you as part of your health team. Speak to them and indicate that you need an earlier appointment because your husband’s disease has had an exponential increase. Hopefully the social worker can cut the red tape for you to see the doctor earlier. Also, I suggest that you keep your calendar available, either written or on cell phone or both so you can jot down new date and info.[if paper calendar, appointments in red, other general personal appointments in black] You should have access to Mayo’s portal. When a new date is set, you can go there and see it and other appointments as well. If that is not possible to register at portal, then call “Scheduling” and ask them if they have the appointment change that the social worker helped with you. If they do, you can request that they mail you all upcoming appointments.
Other questions: Prognosis? What type of meds for pain? Opoids may be addictive. Anything else for pain? Also, meditation is good for de-stressing for both of you. Exercise, even walking is good. you can do that together. Take Smart water with electrolytes or Gatoraide, wear good walking shoes, Just go at the pace that is comfortable. Take cell phone. Stay in fairly level streets or parkland. He should not walk alone at any time. Consider a mental health counselor that may ease his pain and stress. The social worker assigned has outside names to help.
I wish you well. I have to go. have my own issues to content with. Take care and be well.

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Thanks for your concern

@warrens

Julie, if you’re at Mayo, there is generally a social worker assigned to you as part of your health team. Speak to them and indicate that you need an earlier appointment because your husband’s disease has had an exponential increase. Hopefully the social worker can cut the red tape for you to see the doctor earlier. Also, I suggest that you keep your calendar available, either written or on cell phone or both so you can jot down new date and info.[if paper calendar, appointments in red, other general personal appointments in black] You should have access to Mayo’s portal. When a new date is set, you can go there and see it and other appointments as well. If that is not possible to register at portal, then call “Scheduling” and ask them if they have the appointment change that the social worker helped with you. If they do, you can request that they mail you all upcoming appointments.
Other questions: Prognosis? What type of meds for pain? Opoids may be addictive. Anything else for pain? Also, meditation is good for de-stressing for both of you. Exercise, even walking is good. you can do that together. Take Smart water with electrolytes or Gatoraide, wear good walking shoes, Just go at the pace that is comfortable. Take cell phone. Stay in fairly level streets or parkland. He should not walk alone at any time. Consider a mental health counselor that may ease his pain and stress. The social worker assigned has outside names to help.
I wish you well. I have to go. have my own issues to content with. Take care and be well.

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Julie, as a general rule of thumb because meeting with the doctor can be stressful and so that you can concentrate on what the doctor is suggesting, which are generally options, that another person can be with you to take notes [preferably another family member] and also ask questions. I have done that with my adult daughter present with me. My adult son,who is quite a distance from me, was on my cell phone with speaker activated so he could also ask questions if he wished. If you do this, then you can discuss it with your family with all the facts at your disposal.
Again, sending good thoughts your way.

@warrens

Julie, if you’re at Mayo, there is generally a social worker assigned to you as part of your health team. Speak to them and indicate that you need an earlier appointment because your husband’s disease has had an exponential increase. Hopefully the social worker can cut the red tape for you to see the doctor earlier. Also, I suggest that you keep your calendar available, either written or on cell phone or both so you can jot down new date and info.[if paper calendar, appointments in red, other general personal appointments in black] You should have access to Mayo’s portal. When a new date is set, you can go there and see it and other appointments as well. If that is not possible to register at portal, then call “Scheduling” and ask them if they have the appointment change that the social worker helped with you. If they do, you can request that they mail you all upcoming appointments.
Other questions: Prognosis? What type of meds for pain? Opoids may be addictive. Anything else for pain? Also, meditation is good for de-stressing for both of you. Exercise, even walking is good. you can do that together. Take Smart water with electrolytes or Gatoraide, wear good walking shoes, Just go at the pace that is comfortable. Take cell phone. Stay in fairly level streets or parkland. He should not walk alone at any time. Consider a mental health counselor that may ease his pain and stress. The social worker assigned has outside names to help.
I wish you well. I have to go. have my own issues to content with. Take care and be well.

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I seem to be the one taking notes and reading anything on the internet (probably too much). It doesn’t look promising but I might be awfulizing. Bleeding before cut. Trying not to do that. Taking it one day at a time. He is getting pretty weak which he attributes to the autonomic neuropathy.

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