Alzheimers care and treatments: Consult with Mayo Clinic?

Thank you for the encouraging words. I will pass you and your wife's experiences and hopefully it will easy her fears a little more. You and your wife keep fighting this!!!

On another note, just read today about this...
"Researchers from the University of California, San Francisco (UCSF) believe that letrozole, a hormone-based breast cancer drug, and irinotecan, a lung and colon cancer chemotherapy medication, can help reverse brain damage caused by the incurable neurodegenerative disease."

...and this

"Trontinemab’s Phase Ib/IIa Brainshuttle™ AD study continues to show rapid and robust clearance of amyloid plaques, with 91% becoming amyloid PET negative and ARIA-E remaining < 5%" Roche is the manufacturer.

Of course, do your own due diligence but sounds promising.

Currently Early Stage. Taking Aricept. Concern about side effects of infusion stopped us. Interested in hearing from those receiving the infusions.

Oh, Ken @japlok, the waiting is so, so difficult and is such a rollercoaster. I am glad you found Mayo Clinic Connect and are comfortable sharing what you are learning and commenting when you have concerns.

You are getting treatments scheduled and I believe your Mayo Clinic visit is coming up soon. I hope you are able to work joy into these times. While totally not in your position, I do have experience with making the best out of medical appointments. I spent over 4 years getting LDL apheresis treatments that consumed the better part of one day every other week (process similar to dialysis). I found inspiration from another patient that called her time, a “spa day”. I planned something I thought was comfortable/fun to work into these days. I also have made little detours on my drive to MN, and as I have a day with Clinic appointments we incorporate small moments making pleasant memories in Rochester. I am trying to live each day with a healthy sense of urgency, including determination to find joy in each one.

You probably have seen the online Caregivers Support Group meeting. It may be valuable to check out. I notice the next meeting is Thursday, August 7: https://connect.mayoclinic.org/event/caregiver-support-group-25-4f980c4f/

I hope you and your wife are finding moments of joy, and look forward to reading your updates.

Hi @japlok. Any news about your wife’s treatment schedule, or Mayo appointment?

Can you share any insights how your husband and you chose Lecanemab rather than Donanemab?

Hi! you must have a sixth sense because we just scheduled the first 3 treatments yesterday. The first one will be on Monday, Aug. 25th. Very exciting and a little scary...but more excited to finally getting on the road to hopeful improvement. We still have a long road ahead of us but we will tackle it with positive thinking and doing what we have to, to fight this thing. Of course a great help in all of this is because of people like you.

Mayo appointments are scheduled for Sept. 2nd, 3rd, and 4th. We will try and make a nice trip out of it.

Thank you again for checking in.

Ken

Hi @spoolly, my wife and I choose Lecanemab because it seems to have less risk for developing the more dangerous side effects. Although her APOE tests came back as low risk, we did not want to risk her health more than we needed to.

Thank you! Your input is very helpful.

When my husband qualified for the infusions of Lecanemab (Leqembi), it was the only drug available to us. Although we did a lot of research on both drugs, we were anxious to begin treatments as soon as we could. My husband has been doing the twice monthly infusion since March. Knowing what we know now, we probably would have preferred a once a month schedule. Between the infusions, support groups, and MRI's, it has become a huge part of our life. The term "becoming the disease" is creeping into our lives in many ways. Social isolation, alzheimer's management, emotional toll to name a few... Let us know what you decide.