CAR-T Cell Therapy: Introduce yourself and connect with others

@hanya You are always such a bright spirit, Hanya! Your positivity is golden and as I’ve seen in my own life, it can be the driving force behind our survival! ☺️

Oh my gosh, I know it’s not funny but I couldn’t help chuckle with your comment about ‘your house and finances not being in order’…needing more time! Is there EVER enough time??? I’ve been through that myself. I’d always thought I was ‘fairly’ organized until leukemia hit out of the blue for me! Boom! Was in the hospital for 5 weeks the first time, with no certainty that I would return home.
My husband and I always had a tacit division of labor. He had his jobs and I had mine. Along with household issues, I also paid bills, fortunately through online checking. But husband had no clue of the utility accounts, passwords, etc. So here I was, plugged into my chemo in a hospital bed with my iPad, opening a new email account for bills only, so that my husband got the notifications, when to pay, etc. We are both organized in our own right, but when it came to merging our ‘jobs’ it was obvious we had a lot of work to do. I believe we are now better organized to the point where we’ve made it easier for our daughter to find pertinent paperwork/financials. But our house…le sigh…no matter how hard I try there is always excess somewhere!

When we’re not feeling well, the last thing we want to focus on is cleaning and prepping for the end. We should be enjoying our time on the planet! So whatever you feel you need to do, mete it out…set a timer and only do so much work at a time, devoting the rest of the day to focus on essentials and joyful moments.

Now, for that 2nd opinion on your health…if you’d like to make an appointment with Mayo Clinic, here’s a link to get you started!
http://mayocl.in/1mtmR63
There are 3 Mayo Clinic Campuses. Rochester, MN
Phoenix, AZ and Jacksonville, FL. They all have impressive hematology departments. I wouldn’t be here today without the amazing care I received in Rochester. So of course I’m a little biased. ☺️

Happy Thanksgiving to you and your family, Hanya. Hugs.

At Mayo now. Had my CAR T infusion on Tuesday. Nurses signed a card wishing me a happy 2nd birthday.
So far I feel pretty good. I am 72 hours out and have only a slight fever. My ANC is low - which is to be expected.
I'm praying a lot and asking the Holy Spirit to protect and heal me. Doing some visual exercises as well. Imagining those receptors seeking out the cancer cells in my body and destroying them.

@floridaed I am approaching my 2 year anniversary of my CAR T therapy in February. It was like magic! Interesting that you are “reaching out to your receptors” . In addition to CAR T, I did Ayurvedic healing with a guru in London (remotely). I see this as the same thing. I also meditate and use the energy that I acquire for healing. My motto is: Positivity is the best therapy.

I know you will do well. Good luck and best wishes! Oh and Merry Christmas!

At Mayo now. Had my CAR T infusion on Tuesday. Nurses signed a card wishing me a happy 2nd birthday.
So far I feel pretty good. I am 72 hours out and have only a slight fever. My ANC is low - which is to be expected.
I'm praying a lot and asking the Holy Spirit to protect and heal me. Doing some visual exercises as well. Imagining those receptors seeking out the cancer cells in my body and destroying them.

I’m just connecting with this discussion which I see took place six years ago! I did a CAR-T trial in January for stage 3 ovarian cancer. First, four days of chemotherapy to knock out my immune system, then the actual infusion of my modified T cells two days later. I experienced low level CRS although it didn’t feel low level: fever of 101.9, vomiting, intense shaking. Two and three days later I had injections of interleukin (IL-2) which caused more inflammation, intense bone pain and a generalized rash. Now three weeks post infusion and just starting to get some energy back. I’ve had significant mental fogginess which has made it difficult to read or do much, but that is starting to clear. Personally, this was much more difficult to go through than front line chemotherapy, however I have no regrets. I will have CT scans in two weeks and that will show the outcome…nervous about this.

I’m just connecting with this discussion which I see took place six years ago! I did a CAR-T trial in January for stage 3 ovarian cancer. First, four days of chemotherapy to knock out my immune system, then the actual infusion of my modified T cells two days later. I experienced low level CRS although it didn’t feel low level: fever of 101.9, vomiting, intense shaking. Two and three days later I had injections of interleukin (IL-2) which caused more inflammation, intense bone pain and a generalized rash. Now three weeks post infusion and just starting to get some energy back. I’ve had significant mental fogginess which has made it difficult to read or do much, but that is starting to clear. Personally, this was much more difficult to go through than front line chemotherapy, however I have no regrets. I will have CT scans in two weeks and that will show the outcome…nervous about this.

@amywells Welcome to the CAR-T group! CAR-T cell therapy has been rapidly gaining ground in the treatment of various types of cancer, including ovarian. That’s a huge breakthrough. And while you found the initial side effects a bit more challenging than the frontline chemo you had for your cancer treatments, this CAR-T procedure may help ensure that you will no longer have to worry about the cancer or any more chemo.
Wishing you well on your recovery! I think you’ll be encouraged with comments from @kirkwilliams2049 @aalietz @4health4bonnie and others who have shared their success stories with their CAR-T journeys.