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Waldenstroms and amyloidosis
Diagnosed with the Waldenstroms a year ago, just today with amyloidosis. Will start treatment next week. Anyone have these or know anything?
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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.
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1 ReactionThanks for your concern
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.
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1 ReactionI 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.
Julie, just be sure to touch base with nurses that he's okay. They generally cover more than one patient. If you think he's too weak, you can tell them and perhaps have a doctor check him out. As far as reading too much on internet, you can find everything you need in one place sciencedaily.com No fee and comprehensive. And taking breaks is important as well. Overanalysis can create paralysis. You can get too tired, and that's not healthy for you. Then when you don't take care of yourself first, it's difficult to take care of him. So try to get sleep and eat well and hydrate too with water that has electrolytes or Gatoraide. Daily vitamin helps too. Sometimes as we get older, hopefully not always, we don't get full attention in hospital. So being diplomatically assertive to ask for help and check on him. My thoughts are with you.
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1 ReactionI, too, was diagnosed with WM in 2015. I am stable so there are no treatments. Every 3 mos. I go for labs. Every 6 mos. I see my oncologist. I've been told that some people with WM never have symptoms so they never need treatments. Could I be so blessed?! Anyway, it is tough having such a rare cancer, one nobody has ever heard of. My doctor says she has one other patient with WM. But I did meet a wonderful girl not far from me with the same WM. We have become quite close & I treasure her insights & knowledge. We have become quite supportive of each other. Also, I recommend you get in touch with the International Waldenstorm Macroglobelemia Foundation (IWMF) on line. They will share with you a wealth of information and support. Keep in touch. I care.
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1 ReactionColeen, I read a lot. I'm not a doctor. I appreciate your measured responses and high level of expertise in working with people in the throes of a difficult disease. Kudos to you.
Warren
Julie, I’m surprised there is no strong thread here about WM. The WM foundation does have lots of resources.
@jproctor Welcome to Mayo Clinic Connect. Have you been diagnosed with Waldenstroms? There are several discussions within this group that mention Waldenstrom's.
Ginger
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