Well, I’ve finally reached Car-T infusion day. I must say that this process feels a lot like a stem cell transplant. The 3 days of T-cell depleting chemo has left me quite nauseous, and I’m on a steady cycle of anti-nausea drugs to combat it. They are helping, but it is also making me sleepy on top of being fatigued and brain foggy from the chemo. It’s a good time to beat me at a game, since I’m a bit scrabbled.
My picc line is feeling better and not so sore, which is nice. At times, I do feel a little cyborg-ish having this thing sticking out of my arm. I’m glad I have it though, to save me from the constant needling.
I’m hoping and praying everything goes well and easily, and this really wipes out the myeloma. Crossing my fingers 🤞🏼.
(I wonder where crossing your fingers for good luck came from?)
I wanted to share my assessment of my Stem Cell Transplant Strategy. Because at times I do things that are are out of the box and not part of the standard of care for cancer, I find myself constantly assessing and analyzing things I do.
I didn’t do anything that unusual for my stem cell transplant (well at least for me, I’m probably unusual for some people), but I wanted to write down how I think things went. Just as a quick reminder, I focused on diet, exercise and overall wellbeing.
I do think that the concept of the SCT procedure is flawed to begin. It is so destructive and the results seem to be hit or miss. I think we are in a bit of a transition period where Car-T treatments are slowly starting to replace SCT. But at the same time, I do know people that a SCT worked really well for them.
Overall, I don’t think my stem cell transplant was that successful. But maybe that was beyond my control. I do know people who have gone through the procedure and it has been a complete flub for them, with the myeloma coming back a month after the procedure. So I did better than that, but I did not achieve a long or durable response. But, I’m also playing the myeloma game on hard mode with my myeloma genetics, so it’s hard to compare between people sometimes.
So personally, I went into the procedure in pretty good shape, with excellent nutrition and fitness level. My blood counts stayed decent considering the bomb going off. I was not hospitalized and did not experience bad side effects. For the most part, it wasn’t that big of a deal (other than having to move to Stanford and all the time). When I was leaving Stanford, the attending physician told me I did better than most.
One could say everything went well for my just because of my age, but I’ve also seen similarly age people have a hard time. I will never know for sure, but I also don’t believe in randomness.
So my strategy seemed to have worked for getting me through and recovering from the transplant quite well, but it didn’t seem to do much for helping control the myeloma (?). It’s hard to say definitively. With my myeloma numbers returning to a crawl at the moment, and being off of chemo for more than 3 months now, something is controlling it to a degree.
My cells came back last week. From collection to arriving back here, it was about 4 1/2 weeks, which was quicker than the doctor was expecting. All of a sudden there is a flurry of medical things happening. Lots of tests, lots of meetings and driving everywhere for it all.
I have dates for everything now. 3 days of lymphocyte depletion next week. My Car-T infusion is set for August 26. Hospitalization a few days after that.
Today, I’ve been having a lot of meetings about all the drugs they want me to take.
“You’re going to take this drug for this, and it’s going to make you feel like crap”.
“And you’re going to take this drug for that, and it’s going to make you feel like crap”.
“And this drug over here, that’s going to make you feel like crap as well”.
I’m starting to feel like crap just listening to how crappy I’m going to feel 😜. This is all without even counting the side effects from the Car-T.
Sigh, modern medicine, it’s really good at making you feel like crap. “Feeling too well? Well, we have a medicine that can fix that!” Too bad nobody has that problem…
It will be an interesting and intense process. I hope the end result is what I’m hoping for. My doctor told me a few days ago that he wants me to leave from the hospital and the infusion center to be at MRD zero. Which is also my goal (MRD zero is zero myeloma cells detected in my bone marrow). Afterwards I was thinking, if I didn’t achieve that from the Car-T, how would he achieve that?
“Jothi, you haven’t reached MRD zero yet, so we are going to give you and extra portion of MRD zero sauce on your food to get you there!”
Speaking of food, I had some myeloma labs done. I haven’t had any done for about 2 months. I was expecting the numbers to keep elevating at the same rate. When I was on carfilzomib and dara, my light chains were going up 12 a week. As I mentioned in my CAR-T post, when I stopped the chemo, things slowed down a bit.
In the past 2 months, I went up 16 points total! 8 a month. That gave me an unexpected shot in the arm. Again, I find it weird that the cancer was progressing faster when I was receiving treatment. My theory is that the chemo was punching down my system, which must be dealing with the myeloma on some level. Once I recovered, the myeloma went back to a crawl. Diet, exercise and de-stressing are making a huge difference for me.
Which gives me quite a lot of hope for Car-T, since I won’t have any maintenance drugs to punch me down. The cancer will die and hopefully diet, exercise and de-stressing can help take care of the rest, or at least make whatever is left over myeloma’s life miserable.
Turmeric, green tea and broccoli for the win. I’ll go over more of that in my upcoming post, My Car-T Strategy.
P.S. I forgot to mention that the maybe/maybe not tumor on my spine hasn’t shown up physically inside or out, so I’m leaning towards it not being there.
It’s been over 4 weeks since I had my T-cells collected. I find myself counting down the weeks, which I find a bit funny. Car-T has such great potential but can also have some nasty side effects. Maybe I’m just tired of dealing with cancer and would like to be done with it, or at least have a good long break from it.
My doctor was on vacation when my potential spine growth showed up in my heart MRI. That left me communicating with a nurse practitioner filling in for the doc. That was a bit of a challenge, having odd responses from her. Her choice of action was to wait for a month, when the team could review my scan in their monthly meeting.
Huh?!?
None of her suggestions made any sense to me, and I finally told her I wanted to talk with the myeloma doctor when he got back. It was funny timing because I was a few weeks into having my cells engineered. You have to be off treatment for about 3 weeks before the Car-T infusion. Did I want treatment for a week?
Fortunately, I feel like I have a very good myeloma doctor, and he called the day he got back and we discussed things. He said that things can show up on scans that aren’t actually there, and if there is something there, it’s so small, unless I have pain, just let the Car-T deal with it. He recommended not doing anything, which sounded good since I am not in pain.
For the most part I feel pretty good. I find myself wondering when I have a weird jab of pain. Is it cancer? Or is it just a weird jab of muscular pain?
It’s been about 3 months since my last infusion of chemo, and apparently it already wasn’t working at that point.
I am starting to notice little cancer clues for myself. When my cancer numbers went up recently, some of my hair started falling out. My hair started failing out over 5 years ago, before I was first diagnosed. So I think it’s a sign for me. In the last week, at times, I have been hit with some pretty good waves of fatigue and occasionally aren’t as hungry as I should be. I haven’t had a myeloma blood test in 6 weeks. I wonder how my numbers are?
I know potentially, I might get hammered by the Car-T. I think it’s a fine line between having too many cancer cells, and have the T cells go berserk, and not enough and the cells not activate efficiently.
I’m not letting any of it hold me down, it will be whatever it will be and I’ll get through it. I’m still staying active, walking, running, hiking and weightlifting. I’m still pounding nutrition. I find that eating whole real food is easy to eat, and I want to build myself up as much as possible before the Car-T gauntlet.
Part of my Car-T prep was to have an echocardiogram to check out my heart. The test showed I was mostly fine except for a potential problem with one of my valves.
This was a new problem from either the high dose melphalan or more likely from the carfilzomib, since that is known for beating up hearts.
Anyhow, they wanted me to have an MRI of my chest to further investigate my heart. I got the result back last night. I showed that my heart is perfectly fine (thank goodness).
“Grossly unremarkable”
That was the term they used, which is actually pretty funny.
I turned to my wife and told her, “I love you with all of my grossly unremarkable heart”.
We had a chuckle and I kept reading the report.
“An osseous lesion noted within the midthoracic spine, incompletely evaluated on this study”.
Son of a gun!!! Where the heck did that thing come from. I just had a pet scan a few weeks previously, and it didn’t show anything!
This was an (unexpected) blow to me. I haven’t had a lesion since more than 5 years ago, when I was first diagnosed. Now I have a little bugger popping up it’s head in my spine!? The ups and downs of myeloma 🤦🏻.
I needed to reset my head. I went and had a shower and then went outside and did some Qigong and meditation. Qigong and meditation are my go to for (re) leveling my head.
I’m still working out the last dredges of it from my system today.
I was cutting up some mushrooms for my lunch today. The thought popped into my head, that myeloma is a lot like mushrooms. Myeloma percolates in a person’s marrow, just like mycelium in logs for mushrooms. Then all of a sudden, when conditions are just right, a lesion seems to pop up, just like a mushroom after a rain!
Grrr….. I don’t know what the doctor is going to recommend yet. Radiation, chemo, leave it be? I still have 3-5 weeks until my engineered cells come back.
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!
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 😡).
Reaching 5 years was one of my goals. Recent data came out for 5 years survival rate for myeloma. That number was 59%. Meaning out of 100 people, only 59 are still alive 5 years later.
That percentage was less 5 years ago, especially for people with my myeloma genetics (14:16).
The reason why this one is a bit more emotional is that I remember very specifically hearing the doctor tell me 5 years ago,
“You have 2 years left to live”.
I remember thinking “okaaayyyy…..”
Fortunately, shortly after, I started learning about cancer and learned that I wasn’t powerless to deal with it. My life was not in the hands of a stranger (the oncologist I was assigned to). There were things that I could do to change the direction of my life.
I have no doubt in my mind, that if I continued eating a standard American diet (SAD), I would be dead by now. I believe, eating a whole food diet has helped save my life up to this point.
I still have cancer. But I’m still here, despite what I was told.
Up to now, I have survived cancer.
On to the next goal. I wonder what the 10-year survival rate is?
Well, I had some bad news from this last set of labs 😔. My lambda light chain went from 10 (normal) to 100 (abnormal) in two months. So that was a big jump for me. For non-myeloma people, having your light chains rise like this means the cancer is active again. In the past, my light chains went up 8 to 10 points a month, so 45 points a month was a change.
I wonder if my stem cell transplant killed off something in my that held it better in check. Or maybe my frozen shoulder with its inflammation contributed. Hard to know, not that it matters a whole lot. It is what it is. I already had a regular scheduled appointment with the myeloma specialist next week, so that will be an enlightening conversation.
I feel like a treatment change is on the horizon for me. I feel a bit conflicted or discouraged by it. Meaning that the treatments that I have been doing for maybe a month or more haven’t been doing much, and I’ve been miserable for a few days each time for nothing. As well as the new treatment is probably going to involve staying at a hospital for a little bit, no matter what route I take, so that’s a bit of a bummer.
That’s how my life goes, I’ll just keep walking……
You can’t always control what happens, but you can control how you react.
Carrots Over Cancer 