Tests indicate Alzheimer's: Any thoughts on Leqembi and Kisunla?

Colleen, thanks very much for support. I appreciate it. Here is an update. My wife had a 2-3 hour neuropsychological test, which confirmed the shorter one and the other findings. They also drew blood to do genetic testing. She definitely has mild cognitive impairment/Alzheimer’s Disease. The neuropsychologist meet with us afterward and was very helpful and supportive. She discussed possible infusion treatments, and I though was suggesting Leqembi. We met with the actual neurologist who is a specialist in this area along with two others. She confirmed the diagnosis, and is recommending Kisunla, which was a little confusing, but I guess that is the recommendation. The genetic findings were not in at that time, but she is recommending infusion treatment unless the genetic test excludes her. She said our next appointment would not be for 8 months, which I found disappointing, as that seems to indicate that other than the infusion treatment, there is really nothing to be done.
A few days later we saw the genetic testing result on mychart. My wife has APO alleles e3/e4. The doctor said e4/e4 is not eligible for infusion treatment, I think because the risk of brain bleed or brain swelling is too great. I think the risk is less for e3/e4 but still higher risk than normal e3/e3 or others. Waiting to hear from her about whether she now recommends infusion treatment. she explained that the infusions get rid of the amyloids in her brain, but does not make things better—it is hoped the infusions slow down further decline.
Regarding infusion treatment, my wife, and I have mixed feelings about it. Our understanding is that after the 18 months with an infusion a month, it only lessens decline for 6-12 months. After that, she will be at the same place someone who did not get the infusions is at. On the other hand, I suppose an extra 6-12 months putting the worst off will seem like a big deal when it happens. We have not decided on whether to do the infusions even if she is eligible. At first I think my wife was against it, now I am not sure. We have a very active live, trying to go on overseas trips twice a year and spend a month in Palm Desert every January and one or two other trips within the U.S. each year, including a week on the North Shore in Minnesota with our daughers and their families in the summer. Have been doing so for about 5 years now, and now facing the possibility of not being able to do so in the not distant future.
Lastly, we are in the process of making an appointment to consult with a doctor at Mayo Rochester to get a second opinion but really to see if the treatment process there is more postive, or gives more hope, or perhaps allows for participation in trials for newer treatment methods, pills, infusions or otherwise.
Of course the doctor would not be tied down regarding timing of decline to the point where my wife will not help on normal day to day care. But it seemed like she was saying it likely to be within the next 5-10 years. That hit us hard.
I would appreciate. your thoughts, suggestions or support regarding all this. Thank you!

@paul55 My husband also has MCI was diagnosed in August 2025. I posted above somewhere in this thread as what we were told, the diagnosis for either lequembe or Kinsula has to do with the MRI and Pet Scan findings which determines which treatment they recommend. I was told the Kinsula is an 18-month much stronger dose, why the once a month vs. two treatments in one month. Also, I was told the other day, the lequembe treatments are 36 months. with interval MRI's in between. I do know, from being in the doctor' office every two weeks, with spouses waiting for their spouse getting an infusion, that people are seeing results. One man in particular who has had 22 lequembe infusions, filled out the form in the office on his own, his wife told me the first time he has remembered all the question details. That may sound like a small feat to us, but it's huge for them, where all of us just want to see a difference. It sounds like you and your wife are quite active with trips and schedules that you've done for years. Obviously, some of that, changes with the progression of this disease, as you know. I haven't chosen to travel much while my husband is doing lequembe because of the altitude in planes, etc, and my worries about brain bleeds and swelling. I don't know what I don't know so for right now, I just take it one day at a time. I also know, that whether we do something or not, MCI makes them confused, and I realize that my husband treasures the calm, being in a quiet day to day structure. We've done a few short drive trips, not many....so I'm testing the waters. A few meltdowns from that, probably worse for me than him. Unfortunately, you know, things change for us with this disease. We never know what each day brings, but I do know in talking with my husband......he feels it's worth taking the infusions, to try to slow the progression done. He's done well with the infusions for now. I worry, but I would worry just as much if we weren't doing anything. There's no easy fix here. Just the courage of one day at a time. Clarity to know what to do and when. And God's light to help be our guide through this every day. We are not alone.

My husband is 84 and was diagnosed with MCI/Alzheimers late last year in October after his knee replacement surgery in August. The options of Leqembi/Kisunla treatments were presented. I am just not convinced that 18 months of treatment with only 6 months benefit is worth it for him. On the other hand, I have no idea what his rate of decline will be. I signed him up with a personal trainer 3 times a week to exercise at a gym. I am hoping that would increase his mental stimulation helping him stay active and slow his decline.
Another 6 months...is also hard to refuse...but all these transfusions... We will be seeing another neurologist for a second opinion next month.
I would appreciate hearing from someone in similar situation and what your thoughts are.

@llthomson I may have answered this to someone else. I'm sorry. I try to answer these messages with information of value, because I rely on other Mayo connect caregiver answers so much. thank you to all of you have taken your time for me.
My husband is 78 and was diagnosed with mild cognitive impairment. He immediately went on Lequembe what I thought was 18 months but I'm now being told is 36 months. I need to verify that now. In between are periodic MRI's and initial PetScan was done that diagnosed it along with that first MRI, and a few other test. The periodic MRI's in between certain stages of Lequembe are to look for any brain bleeding, swelling, etc. I don't know what you mean by your husband only getting a 6 month benefit from an 18 month set of infusions. What I'm told and read, is that lequembe slows down the MCI alzheimers progress, doesn't restore the memory he lost, but slows it down, and the studies I've seen, show patients are getting results. As I'm sitting in the lequembe infusion center in South Florida, spouses are communicating with each other on the results they are seeing in their significant other. But what I'm told is that takes time - and doesn't appear to be the first set of initial infusions. I don't know if this good or bad - as anytime we take any kind of medicine, medically, one thing could trigger another. What I do know is we know the outcome with no treatment of any kind. So for my husband and I we chose the lequembe route. Kinsula I've heard is a stronger treatment once a month. And the diagnosis between the two (lequembe or Kinsula) depends on the findings in the MRI, and I'm not sure if associated with that APOE4 gene. You can tell I'm not a doctor, so I have to rely on the diagnosis the doctor gave us. We didn't go for a second opinion at Mayo COnnect, as the neurologist we have here has a big practice and he was referred by our primary care. BUt I love Mayo and if you're not convinced the direction you want to go in, get your primary to refer you in, unless you are already a Mayo patient.
Hope this helps. I know as a caregiver, I'm like a sieve every time some wonderful caregiver here shares with me what they know.
God's light to help guide us through the day and all these decisions we are now forced to make. We are not alone.

My husband is 84 and was diagnosed with MCI/Alzheimers late last year in October after his knee replacement surgery in August. The options of Leqembi/Kisunla treatments were presented. I am just not convinced that 18 months of treatment with only 6 months benefit is worth it for him. On the other hand, I have no idea what his rate of decline will be. I signed him up with a personal trainer 3 times a week to exercise at a gym. I am hoping that would increase his mental stimulation helping him stay active and slow his decline.
Another 6 months...is also hard to refuse...but all these transfusions... We will be seeing another neurologist for a second opinion next month.
I would appreciate hearing from someone in similar situation and what your thoughts are.

Just a clarification, Leqembi is an 18 month process with 2 infusions per month (every 2 weeks) for a total of 36 infusions and Kisunla is 1 infusion per month for anywhere from 6 to 12 months. My wife is on Leqembi infusion 14 with no issues so far. She decided on going with the treatment because the extra time it potentially provides is more time together and more importantly, more time where there could be advancements including a cure...we have to be optimistic.

@kjc48 I appreciate very much your detailed reply.
You wrote, "I don't know what you mean by your husband only getting a 6 month benefit from an 18 month set of infusions." :
In AARP magazine Nov 6, 2024, in the Health section, there was an article titled "15 Things to Know About the Two New Alzheimer’s Drugs" by Marlene Cimons. In it,
"11. What should I expect in the way of results if I take one of these drugs?
The research, which was conducted over 18 months, suggests “you get an additional six months of better quality of life for every 18 months, if you start early and keep using them,” Budson says. Schulz cautions, however, that it is still unclear how long these benefits will last. “We are still following those patients to give more guidance,” Schulz says. “As of this time, we don’t know whether we can say that we delay things 6 months for every 18 months. What we can say is that it is true for the first 18 months.”"
Not really sure how else to interpret that...