CAR-T: Opportunity to Connect

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Just checking in with you, @4health4bonnie. Any word on your transplant date? Have you had any educational classes on what to anticipate with your procedure?

My cells have been harvested. March 26 is the date for infusion. Has anyone had experience with pick lines? We have been given quite stringent instructions to prevent infections. Im not to cook, clean, do laundry etc. no restaurant food, showering everyday, all handles, switches wiped with clorox everyday……what were peoples experience with this?
Bonnie

Hi Bonnie. You have a target date! I think it can be a relief to have the time scheduled, to know the plan is going forward.

One of the first things you’ll receive before your infusion, as you mentioned, will be a Picc line. It’s a type of port with long, soft, flexible tubes inserted into a vein in the upper arm to administer fluids or medications. It’s also used for blood draws and will make your life easier without all the needle pokes you’ve gotten used to by now.
You’ll be in a surgical room for this briefly while the doctor uses image guiding equipment to make sure the placement is secure. I’ve had 4 of these during my leukemia treatments. They’re easy and painless.

You’ve also been given very stringent instructions to prevent infection. It is imperative that you follow these guidelines. With your CAR-T therapy, you’ll be having lymphodepleting pre-conditioning chemo which will deplete your immune system, leaving you very vulnerable to infection whether bacterial, viral or fungal. This is temporary so don’t panic! Life resumes to near normal in the future. But for now, wear a mask around people, in stores, church, elevators…
no gardening or watering plants in your house…to avoid fungal infections. No cleaning, no laundry, no toilet bowl swabbing, no changing litter boxes. Your toilet bowl should be cleaned often however.
If there is any pink/black mildew on your shower curtain, now is the time to replace it!
A biggie! There is no longer a 5 second rule! If food hits the floor, consider it lost in the lava! Sanitizing wipes are your best friends to wipe surfaces, light switches, etc.
Cooking is out of the question for a while because you should not handle or eat raw/undercooked meats…chicken, fish, beef/pork, etc.
Foods from the deli or even packaged ‘soft meats’ such as turkey and ham should be avoided for potential listeria infection…unless you heat them first…all meats that you consume should be cooked to 160 degrees. Raw fruits need to be scrubbed before eating. Even bananas. Peel apples.
Lettuce/romaine salads, strawberries, raspberries are off limits. No honey!!
Another no-no is going out to eat at a buffet! Too many opportunities for bacterial growth on the food…and contamination from other people handling the serving utensils. This also entitles you at family gatherings to be the first to be served! Have someone else dish up your food so you don’t have to use common utensils.
Think GERMS. No touching your hands to your face or rubbing your eyes. Basically, this is your opportunity to sit like a pretty princess while others dote on you hand a foot for a few weeks. ☺️

You’ll also be asked to keep that Picc line in your arm clean and dry. It is another potential port of entry for bacterial. Your CAR-T care team will do the maintenance on the port, but it’s up to you for the personal hygiene portion. You may be instructed to buy Aqua Guards, a plastic film barrier with tape around 4 sides to seal your arm from water while showering. You can make your own with Glad Self Stick foodwrap Or a plastic baggie with paper medical tape.

I know, Bonnie, this is a lot to absorb! But what you’re going through is no walk on the beach so you don’t want to screw it up by risking an infection if it can be avoided. Everyone who has had a bone marrow transplant or CAR-T Therapy has been given similar instructions. These were my instructions from Mayo when I had my BMT. So grin and bear it…the time will go quickly and you’ll be back to a more normal existence.
I’m here, along with other members to help you through this. So don’t hesitate to ask questions! 😊
Will you have to relocate to another city to have your transplant? Is this an outpatient service for you or will you be admitted to a clinic for a few weeks?

I have a small apartment I have rented close to ohsu and the cancer center. Thank you for the detailed instructions. My caregiver is coming from another state, so it will be interesting! I feel better reading the infection control is temporary.

Lots to see here. I have a couple of questions about this. I know that so far it is only approved for a limited number of blood cancers. On my las visit with my hematologist/oncologist, he noted that they may be starting a phase 1 clinical for my condition. I am very open to these studies and have been doing my best to learn more. There was a good webinar by LLS a few weeks ago that was helpful.

In general what would be the criteria for inclusion/exclusion for a phase 1 CAR-T study? I just missed out on one a year ago with an oncogene inhibitor (0.5% low on an echo). I have seen lots of "success" stories, and have heard of those that were not quite as good, but cannot find out why (the mother of a friend had poor results) so would like to know more of these potential downsides.

Hi, soon I may be facing a trial with Quadruple chemo followed by CAR-T in one arm & ABMT in the other. This is initial treatment for Multiple Myeloma. Any comments?

What is abmt?

Autologous marrow transplant.

Hi, just wanted to add my reassurance on the whole infection control piece. It really does become second nature pretty quickly, and while it does involve limitations, there’s still a lot you can do. I didn’t miss cleaning the bathroom, but really missed sushi! I am 18 months post transplant and I am still more cautious than I was in the past, they will give you some recommendations for longer-term limitations, I don’t swim in certain types of water and wear gloves when taken care of pet rabbits, which can have some hard to treat germs. But it is definitely doable. I truly hope all goes well for you. Many of us have done it and come out the other side doing just fine.