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Experience with Donanemab and Lecanemab
My wife has been diagnosed with Alzheimer’s and her Mayo neurologist recommended treatment with either Donanemab or Lecanemab. Does anyone have any experience with either of these drugs? It seems like we have a million questions.
How do you choose between the two?
The infusion time with either one is relatively short, but sounds like your actual time is much longer. Are you generally able to get by with one day of medical each cycle?
How bad are the side effects? Are you potentially losing 18 months of relatively good time during the disease progression while you go through treatment?
There are numerous articles which question whether the benefits from the clinical trial will actually follow in actual practice. What kind of actual experience have people experienced?
I am not sure why our family and myself seem to be questioning this treatment. My wife is a three time ovarian cancer survivor. She has obviously been through quite a great deal from a medical standpoint. The medical community and specifically Mayo has saved her. If one of these treatments will help there is no question we will proceed. I am sure part of our hesitation is in our situation the treatment cannot be done at Mayo.
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@paul55 Paul, sounds like we are in similar situations..the more I read about the infusion therapy the more concerns I have…my wife has a real anxiety problem now and I question if the cons of the therapy outweigh the pros. I try to keep her active socially which has a positive effect.. would appreciate your input after your wife’s first session
Thank you
@kjc48 thank you for your input..my wife has mild dementia which we suspected a 2-3 years ago and have finally been medically diagnosed after mris, blood test and pet scans..it’s a big decision as you know so we appreciate everyone s input..
Thank you 🙏
@joemurphy43 I just pulled from some of the Mayo stuff I print out, so I remember, something about, "15 Things to Know about the Two New Alzheimer's drugs by Marlene Cimons. It's an AARP magazine article Nov 6. 2024 in the health section. Goggle it and it may be helpful in trying to make a decision for your wife. Also, there are a lot of people on the lequembe infusions, so there must be more statistics out there now. Possibly your neurologist has some of that data. Best, Karla
@joemurphy43 based on my last conversation with my wife I believe we are going forward. Will let you know. Hoping for the best. Best to you and your wife.
@mugsarella thank you so much for taking the time to share. I hope things go as well as possible for you and your husband. As of now, we are going forward with the infusion next week. Will let you know how things go. Take care.
@kjc48 Karla, thank you, I appreciate it.. just read the article. A tough decision, especially since she turns 83 in August..I question if the18months therapy time is worth it…meet with her go nexr week..
Thank you so much Joe
@joemurphy43 Joe, I can only tell you that when I'm sitting at the neurologist with Eddie, my husband, other wives or husbands are in there. The women my husband is sitting with when he has his infusions, one woman was 89 years old, no issues, another was 86 years old. I know one woman, was very nervous, they ended up slowing down the infusion. You can ask the doctor about that. And when she came back, she wanted to do it on a day, the neurologist was there. you know, it's so hard to know, but our infusion center in South Florida is packed with people going in and taking them. doing. I don't mean to make this sound like a promotion for lequembe. I know it's a hard decision, but my husband was very positive over it. And the people going in, men and women, seem to feel the same way, (at least the ones I talk to all the time) Good luck. Best, Karla
@suezann
My husband was on lequembi and then kisunla and it was covered by medicare. he had a fall which caused some brain bleeding while being treated with lequembi so the neuroligist stopped the treatment. a few months later, kisunla was approved so he started that. after treatment 3, he experienced a weakness which i didnt realize was from the kisunla. we went to the er but then he was ok. after treatment 6, he experienced the same thing so we stopped the treatment. the nurse practitioner suggested another pet scan to see the results. i was shocked to learned that all of the plaque was gone. i would say that the result is that the progress of the disease has been slowed down.