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Posts (15)

Wed, Apr 22 7:09pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

This really has been a tough time for you! I'm sorry to hear about your dad, but if there's a bright spot in all of this, it goes by the term CAR-T. Not to be concerned about the infusion… it's actually interesting. Two nurses handle it…one constantly checking vitals and the other controlling the flow based on the vitals. It's really anticlimactic. They'll keep her and monitor for several hours..as I remember, 4 or so… then if no reaction, away you go back to GOL. Then in a day or two, she'll probably be hospitalized for a while. The hardest part there is the separation. My wife will need the rehab because she was in pretty poor shape when this started, and she's lost a lot of strength while hospitalized. As the doctor told me this morning, "she was in pretty tough shape when she came in — she hadn't been giving herself enough to eat." Whatever you do, remember what they told you…everyone is different and responds differently. Not to worry… it'll work out and she'll do just fine. Remember—the best in the country are taking care of her!

Wed, Apr 22 4:59pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

The GOL House was very, very nice. After discussing the future with her CAR-T doctor and nurse practitioner, when she is released from the hospital, she will go to an inpatient care facility for physical and occupational therapy, and most likely home after that, not returning to the GOL. As as result of that discussion, I decided to return to our home 45 miles from Rochester and leave the GOL. Because of the pandemic and inability to be with her, I decided I can face time her from home as well as from the GOL house. And if, by some miracle, I can get to see her in person, I can be there in less than an hour. And it is quite possible she may be released to the Mayo facility in our town. At least. that's what they are working toward. Thanks for asking. Would I recommend GOL to others? As we say in Minnesota, "Ya, you betcha!"

Tue, Apr 21 3:57pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Thanks for asking. Be prepared for an up/down roller coaster ride,. The infusion was nothing, but four days later she was in the hospital with CRS and neurotoxicity …just like they said would happen. The first few days she was basically non communicative …just guttural sounds. As time went on, it became words, kind of mumbles not unlike a stroke victim. It slowly got better to where we could carry on what would pass for a conversation. Yesterday was the best she had been since hospitalization 17 days before. Then yesterday pm it went to heck in a hand basket. She became totally confused and delusional. Today she'is extremely tired and uses simple yes and no in response to any comment. The nurse practioner says.she's doing as expected, and doing well, although it will be a long recovery. The hardest part is the total isolation from her, although we do FaceTime. I'm just kind of afraid to do so because I never know what will be on the other end. One thing I'm doing is keeping a day-by-day journal in case she ever wants to know what went on. It also makes me use my mind in this world of extremly limited human contact. But if it works…all the tough times will be forgotten.

Sun, Apr 12 9:33pm · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

I wish my wife coul have had a stem cell transplant, and we were all ready to go, but a pet scan a couple of days before it was scheduled showed she had too heavy a burden of lymphoma for a possible successful outcome. As a result, she had a CAR-T infusion. She has withstood the physical side effects quite well, but is having a battle with neurotoxicity — she's been in a near coma state for three days, but we are assured she will come out of it. As we understood, there is nothing like that with a stem cell transplant. The hardest part … For me, anyway, is the forced separation…can't talk to her or hold her hand …at a time we both need it..even tho she might not know I'm there. Hopefully we'll have time for that soon.

Mon, Apr 6 1:22pm · Are you getting cancer treatments during COVID-19? in COVID-19

The place is absolutely wonderful, as is the staff. I'm actually at home now..till next Sunday. My wife's cousin (from Rochester) has her doctorate in nursing and teaches nursing at Augsburg College in St. Paul, and is giving me a break. She's serving as my wife's caregiver … and I'm sure she's better at the medical aspects of it than me. This is literally my first break since the first week in Sept. (8 months) and after 24/7 together, I'm sure she's the one who feels SHE'S the one getting the break! (and on day 4, still no real side effects, other nadir from days -5 through -3 chemo)

Mon, Apr 6 1:14pm · Are you getting cancer treatments during COVID-19? in COVID-19

Apparently Jacksonville is like a child–it doesn't listen to what Mother Mayo says (I know from where I speak…had three children). Perhaps their decisionmaking is related to your governor's decision-making on this pandemic. In MN, we've been locked down for many days… unlike our neighbors Iowa and the Dakotas, which our governor suggested they move away from us.

Mon, Apr 6 10:42am · Are you getting cancer treatments during COVID-19? in COVID-19

Don't believe everything you see on the internet…or portal. By all means, wear a mask whenever you leave your home. At Mayo Rochester, patients and caregivers alike are required to wear masks in treatment/exam rooms. Nurses and the entire staff wear masks all the time, even tho they have "self-tested" before coming to work and once during the day. I find that to be more accurate on the mask question than anything else. And good luck with the CART-T. My wife is in day 4 and so far, no side effects except extreme fatigue, which could be the result of nadar from chemo on days -5.-4 and -3.

Mon, Mar 30 4:07pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

What's it like? Unreal. Mayo Rochester usually is not unlike Grand Central Station at rush hour. Now, All you see are a few patients …like maybe just a couple in a block-long hallway. Only outpatients can have one person accompaniing them: no one except patients in hospital. And they mean no visitors, caregivers or spouses. Just getting in the building is not unlike going thru a TSA checkpoint. They take your temp in an outer hall, then if no temp, you go to a desk where you answer questions. If you pass the test, in you go. I will admit we do feel quite safe. And where do I go while she's in the hospital and I'm not. I'll hang out at the Gift of Life Transplant House.