Category: Blog

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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.

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“I Don’t Know”

Jothi

Wow, it’s been about a week since I wrote something. I feel like sleeping most of the time. I was warned about the extreme fatigue that comes with this, but this is a whole other level compared to other fatigue I’ve gone through.

I ended up getting the boot from the hospital a few hours after I wrote my last post. The doctor came in and did a complete 180 from what he said the day before. I think when it came down to it, they needed the room for someone else, and me staying was messing up someone’s schedule. The early test results said I didn’t have an infection, which was confirmed days later. My fever was caused by the CRS.

When they decided to give me the boot from the hospital, I mean they really did give me the boot. They pulled out my picc line, gave me a shot of Neupogen to boost my white blood cells, and had a wheelchair ride to the curb waiting. The doctor said a nurse practitioner was going to come by and answer all my questions, but one wasn’t available, so that didn’t happen. I was a bit ticked off with the lack of information as I was suddenly being shown the door. Overall the hospital stay and staff were good, except for the end.

I didn’t mind going home, as a hospital is not a place of rest or recovery. It’s a place to make sure you don’t die, although that happened quite a bit while I was there. 4 people dying in one day was my record while I was there.

I was talking with one of the nurses while I was there, and he was wishing they didn’t announce it on a loudspeaker on all floors. He found it disturbing and he wasn’t the one hospitalized. I didn’t mind knowing. It was a good reminder that death is part of life and it happens all the time, unknowingly to most people.

So I’ve been home for about a week now. I’ve been pouring in the nutrition, giving my body what it needs to recover. I had a check up on Monday, with labs showing my recovery. I have another check tomorrow, where I think we will run some myeloma labs, to start seeing how the treatment is going.

I’ve had two little bouts of confusion when I wake up in the middle of the night. I’m also having some weird nerve discomfort/pain down the backs of my arms and legs. That’s going in the “I don’t know” category for the doctors, but fortunately it is gradually getting better on its own.

I think that’s it for now.

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Panic Value Not Called Per Policy

Jothi

I’m at day +11 now. Things started to kick off on September 1st, which was day +7. My blood pressure dropped significantly and I started a low grade fever. I usually run in the 97’s temperature wise, and I bumped up into the 99’s. Those things remained for 3 days, so I was feeling pretty miserable at times.

At midnight, between day +9 and +10, my fever finally spiked into a true fever at 101. My hornet’s nest had finally been kicked after a few days of it just being gently shook. Inflammation took off and blood counts dived.

They have done a lot of tests looking for infection. I’ve been hooked up to a running IV of various things for 2 days straight, including constant IV antibiotics. I find it a bit odd. I’m having the expected response of fevers, low blood pressure and blood counts. And yet they have to assume its an infection and carpet bomb all the bacteria in my body, even though it’s expected to be a cytokine release syndrome.

I get why they do it, but it’s frustrating. I just have some work to do to try and restore it afterwards.

I don’t have a confirmed CRS rating yet, since my blood cultures haven’t finished growing to rule out infection. If it was graded, it would be rated as mild, since I did not lose any cognitive function other than a bit of spaciness. I suppose overall, so far, I’m getting through this on the easier end of the CAR-T scale (knock on wood (another funny saying)). The drug they used to calm the CRS did work quickly. So far, a second CRS hasn’t come, which I didn’t know was a thing.

My blood values seem to still be falling in the good places and are still elevated in a few wrong places. Seems like they are going to keep me here in the hospital longer than initially planned to keep monitoring. I’m at a really high infection risk with my ANC numbers. Hopefully I can get released by tomorrow.

Here is some of my more interesting data, in case you are curious.

I’m giving myself a pass and not proofreading this, so you will just have to suffer with any bad grammar or mistakes, sorry 😜.

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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…

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Infused

Jothi

Well that went well and was uneventful. I thought I would quickly share a bit about it with curious people. I found it all pretty interesting.

My cells were frozen at -176.6 °C, which obviously is quite cold. It’s amazing the cells don’t suffer damage from that. It only takes a quick 3 minute luke warm bath to warm them up enough to be infused.

The cells were clear, which was quite surprising to me. I was expecting them to be salmon colored, like my stem cells were. I was told they go through such a purification process, everything else is removed. No extra reds or platelets in there! It ended up being just 71 ml of T cells and preservative.

Speaking of preservative, I got the tomato soup flavor in my mouth again from it. It went away after about 15 minutes. Apparently, I still smell to other people. I find it weird that I can’t smell it. My wife says I smell like tomato soup, my son says I smell like burnt pine wood, and my daughter says I smell like a sweet chemical.

I was told that my engineered T cells get to work right away and are busy multiplying and killing myeloma. My moment of kicking the hornet’s nest is approaching in a few days, when my cells really start swarming.

I got a Car-T band in case I showed up at a hospital unexpectedly. They don’t want another doctor to accidentally kill off my expensive cells with something they do. I guess I’m part of the club now.

Today’s check up was uneventful. Just labs and a neurological check. I pretty much feel fine. I’m finally getting over the nausea from the chemo, so that is great!

I got asked what a table and a tv were and which hospital I was in. I told them Stanford just to get a reaction, although I’m not sure how long I can get away with answers like that. The nurse told me she can have a full conversation with someone and then ask them what a tv is, and they can’t answer that question. So it will be interesting.

I’ll see how long I can keep up with writing until I lose my marbles 🥴. (Hopefully only temporarily!)

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It’s Cell Day

Jothi

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?)

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My SCT Strategy Assessment

Jothi

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.

I’ll keep tinkering and experimenting.

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MRD Zero Sauce

Jothi

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.

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The Waiting Game

Jothi

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.

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Myeloma Mushrooms?

Jothi

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’ll just keep walking, moving forward…