Tag: UCSF

Blog

Not A Typical Patient

Jothi

Well, I’m going to attempt to just write something quick, I’m not sure if I’ll succeed. I’ve had more blood tests done and more doctor’s office visits. We ran some myeloma lab’s recently to start to check on the results of our efforts.

My light chains have practically disappeared. Everyone is supposed to be in normal range for normal blood formation. I’m now low on both. Just as a reminder, I have lambda myeloma, meaning I get too many lambda light chains. In my last test, my lambdas were at 157, which was too many. So those Car-Ts are doing their job, and then some.

My M-band is dragging its feet, as it normally does. It would have been nice to see a big fat zero, but maybe that’s just me being greedy. It has only been a few weeks since the Cars were infused in. At least it’s on its way down.

I had my first of six planned monthly infusions of IV-IG, which is an infusion of antibodies. The Car-T cells kill off antibodies as well as the myeloma cells. They are programmed to search for cells that have the BCMA protein, which both myeloma and regular plasma cells have. Which is also why I’m becoming immune compromised again. Although my neutrophils are now over 2, which is in normal range.

I had the nurse put in an IV to draw my blood and then set me up on the IV-IG to save myself a hole.

“This is not how we typically do this”, she informed me. “Usually you have your labs done in the lab, and then a nurse sets you up with an IV once you are in the infusion chair”.

“Sorry for the trouble,” I said.

I believe that doctors and nurses are so exposed to medical things, they get desensitized and set in their ways. They forget that a patient could be doing something for the first time (not that I was) or what could be best for a patient.

It’s just a very human response, so I wasn’t upset or anything. It was just a good reminder that everyone is human, doing human things, no matter who they are or what their job is.

When I was in sales years ago, I got very desensitized to spending other people’s money. Spending 5-10k of someone’s money was no big deal for me. It was an interesting learning experience for me once I realized it, and I started putting myself in other people’s shoes more often.

Besides, I refuse to be a typical cancer patient. If I was, with my myeloma genetics, I would have been dead years ago. Let’s see if I can get my atypical T cells to get rid of the myeloma, more than typical.

Blog

My Bed Has A Mind Of Its Own

Jothi

I’m at day +6 now in my Car-T process. I’m part of a newer hybrid outpatient/inpatient program for the Car-T, and I am now in the inpatient hospital section of it. I came in on day +4 as planned.

So far, I have nothing going on. No CRS or neurotoxicities, which is great, but also in the back of my mind, I’m having little thoughts “is this working?” To be fair, it’s probably a bit early for the average time for those things to show up. Although, I don’t think those side effects are an indication of effectiveness.

I get poked and prodded at all times of the day and night. They like to do blood tests at 4 in the morning, so the morning shift has numbers to look at. Sleep has been a challenge. I have this weird hospital bed that likes to guess what is most comfortable for me. It deflates where my body is laying and then inflates in random spots along my body.

“Oh, your finally comfortable, let me adjust that for you and stab you in your right kidney”.

We’ve finally figured out that unplugging the bed at night makes the bed less smart, and it doesn’t adjust itself.

I’m confined to the high risk transplant floor of the hospital, along with the rest of the patients who have immune compromised systems. My counts are definitely dropping. I’m trying to stay as active as possible because I’m not very good at sitting around. I can do walking laps around the floor. I saw an exercise bike yesterday, and they agreed to move it into my room when I want to use it and then take it back out when I’m done. That has been awesome for some exercise.

I saw that there is a felon at the other end of the hall, with 2 guards, when I was doing my laps this morning. I was glad to see that he was getting some good cancer treatment. Cancer sucks, no matter who you are or what you’ve done.

So far, 3 people have stopped breathing, or their heart have stopped since I’ve been here. They blare a super loud alarm when that happens, I think on all floors.

I’m just grateful to be the “boring patient” with nothing going on…

Blog

White Blood Cell Collection

Jothi

Step one for my Car-T is done ✅.

I had my white blood cells collected on Monday. They are on their way across the country to New Jersey, to be engineered into Chimeric antigen receptor T cells to kill myeloma cells.

The procedure went well, thankfully. My veins were good enough and held up for a double IV, one in each arm. The nurses decided my best outflow vein for the big IV was in my bicep. That was a new one for me. But it was actually a pretty good spot.

I had 15 liters of blood pumped out of me. The white blood cells were filtered out and then the remainder was pumped back in.

The human body holds about 5 liters of blood, so all of my blood was taken out and put back in 3 times. So, as you could image, I’m pretty tired from all of that. It sort of feels like I ran a marathon and I’m ready for a goodnight sleep, except I just woke up in the morning.

I usually don’t post pictures of hospital things, but since Car-T is newer, I thought I would show a bit more.

This is what my bag of white blood cells looked like. It has some red blood cells mixed in with it, which is why it’s pretty red. Your red blood cells and platelets also drop as a result from the apheresis, so that’s part of the reason for the tiredness.

I’m told, that when they come back from being engineered, they will be a light pink color.

In the lab in New Jersey, they will filter all the other cells out until it just down to T cells. Then they will test the T cells to see how viable they are and make sure they are of good quality. The finished edited cells have to have a quality rating of at least 80, which was set my the FDA. If they are 70-80, you and your doctor have to decide whether to go through it still or not. If they are below 70, then they get scrapped and you have to try again.

So I was trying my best to try to scrub my cells and get them as healthy as I could. When I had my cells collected, it had been 7 weeks since the last chemo infusion. So I was factoring 2 weeks for the chemo to mostly be cleared, which left me with 5 weeks to heal.

Well, I think I’m going to take a nap 🥱, hopefully I snap out of the fatigue thing soon!

Blog

CAR-T

Jothi

I had a few more blood tests and they confirmed that I have relapsed. The myeloma is starting to party inside of me. I was surprised by how quick my light chains and m-band ratcheted up on the first blood test. Things have slowed down a bit. Seems like I’m going up about 6-8 points a week with my light chains. Which is funny, the myeloma grew at a faster rate when I was on chemo (12 points a week) versus not being on it. (I did light chain math 🧮)

As you can imagine, I’ve been having a lot of doctor conversations and from that lots of tests. I am definitely starting to have medical fatigue from it all.

I decided to sign up for Car-t, which is genetically engineering my T cells to go after the myeloma. I was referred to UCSF. My myeloma specialist is from UCSF, so he instantly told my oncologist he wanted to take me on, which was nice for a change.

I decided to go with Carvykti Car-t. I had two choices of Car-t products. One that didn’t have many side effects but didn’t work as well, or Carvykti which works a lot better against the cancer but has a bigger potential for some nasty side effects.

I find that cancer is full of impossible choices, with a lot of the time having to choose between the lesser of evils. I do feel optimistic about Car-t therapy though. In my opinion, I think it’s probably the best treatment option for myeloma out there. I felt I had to swing for the fences with Carvykti. I’m starting to feel like I’m running out of treatment options. My specialist said he has some patients that are 5+ years myeloma free from Car-t and it’s starting to look like a cure for them.

I had a Pet scan this morning to look for cancer lesions. The myeloma specialist said if it was all clear that I could potentially not have to do any bridging chemo between from when I have my cells collected and infusion time, which is about a month. It came back as I’m writing this and it is all clear! Yay for exercise, meditation, carrots, mung beans and broccoli (or maybe just luck)!

I had my last chemo infusion 5 weeks ago. I’m having my T-cells collect on July 8, and it’s about 6 weeks to engineer them and send them back. So if I don’t need bridge chemo, that’s a good couple of months without chemo. I sure my body will appreciate that.

Someone asked me if I’m nervous about being off of chemo for a while as I have active myeloma now. I’m not really.

I took myself off maintenance chemo about 3 years ago after I got covid and had to stop. I saw that the chemo actually wasn’t doing anything. The myeloma was just poking along, rising about 10 light chain points a month. This time it is growing faster, but hopefully I can make it until my anti-myeloma army get infused back in.

I’m trying really hard to keep my expectations in check. It’s so easy to look at the amazing data (potentially cured) and hope for that myself. I know full well that this treatment could easily flop and be back in this same spot or worse (looking at you neurological problems 😡).

Pray for the best, prepare for the worst?