Author: Jothi

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Oh Yeah, That’s What It Feels Like

Jothi

That’s what I’m starting to say to myself.

It’s been awhile since I’ve felt like writing anything. I’ll have to try and remember what’s been going on, post CAR-T, in the last month or so.

I had my second infusion of antibodies and another round of myeloma blood tests. All my light chains were still about zero, below normal. My M-band is still hanging around with a reading of .5. That means that I still have cancer cells circulating in my blood. The doctor said since my light chains are basically zero, they expect my m-band to continue and drop, and hopefully disappear completely.

I have another round of blood tests this week. I’m very curious what my blood will say. I was scheduled to have a bone marrow biopsy a month ago. I was telling my doctor I didn’t see the point, since my blood was saying there was myeloma still circulating. Of course I was going to have a myeloma reading from my marrow. The thing I’m going for is MRD zero, which is no trace of myeloma in my marrow. So I got them to postpone the test.

I did end up having a few minor neurotoxicities, which turned my mind a bit sluggish. The extreme fatigue was a challenge, but I seem to be over both. I was on the antibiotic bactrim after my hospital stay, but it was dropping my platelets and red blood cells too much. Doctors are concerned with pneumonia post Car-t, so it was precautionary. They switched me over to another antibiotic, atovaquone, which is a liquid (?) type. It was basically like eating a sweet, good quality yellow paint. Gloppy, thick, and gross.

I ended up having an abnormal reaction to that stuff. It caused my inflammation to rise significantly, and it felt like I had thriving active myeloma again in my bones. It was painful, and I certainly didn’t want to feel like I had lots of cancer having a party inside of me after doing Car-t. I couldn’t help wondering if the treatment had bombed, because it sure felt like it. So it was a good mental struggle and stress, and was another hurdle to overcome. My last blood test said the opposite, so that took my load off.

So in the meantime of not doing anything medically related, I’m finding my body restarting its systems. Recently, I find myself saying “Oh yeah, that’s what it feels like to be normal”. I have energy again. My mind is sharp again. I’m not tired after doing a simple task. I’m not combating a steady dose of side effects from chemo. It’s funny what a person gets used to and becomes their version of “normal”.

I’ve been off chemo a few times in my myeloma marathon. I got Covid around 3 years ago, and the doctor stopped my Revlimid while I was dealing with that. I had a blood test before I was going to restart, and it showed the revlimid actually wasn’t doing anything. I decided to stop all chemo for about 8 months and try some alternatives.

The difference between then and now is that I knew the myeloma was increasing (very slowly) and contained somewhat, but I was getting worse over time. Now again, I’m off chemo, but it feels like the reverse is happening. I seem to be getting better over time.

So far, that makes me a big fan of Car-T. I’m still waiting and hoping the cancer zeroes out, and I don’t have to deal with myeloma. What kind of story will my blood write for me?

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My CAR-T Strategy

Jothi

Note: I started writing this prior to my Car-T procedure. I didn’t get it done prior, and I wanted to document the procedure as I was going through it, so this post got tabled until afterwards. So the post might be written slightly funny.

Here you go…

When I think about the Car-T treatment, a few things come to mind. I’ve come up with two main points that I’m going to focus on.

The first one would be actually getting through the procedure and the side effects from it. I’m going to follow the same strategy that I employed for my SCT. I can’t control what side effect I’m going to have, but I can be as strong and as healthy as I can be to withstand the treatment.

I’m not going to go too much into it since I’ve already written about it. I’m eating tons of vegetables and lentils so my body can have what it needs to repair and recover.

I’m getting as much exercise as I can. I have a few physical bumps and bruises from a slip from when I was hiking. That’s limited me more than I would like, so I’m not doing as well in this aspect as I would like to be.

Lastly, I’m trying to shore up my mental aspects using Qi gong and meditation. With all the potential issues that can come up, it can be mentally taxing. This process has already been going on for 2 months, with all the doctor appointments, tests, cell collection and driving in between.

I’m at the point of “just get on with it already” and thankfully that’s where I’m finally at. Sometimes I do find myself teetering between being positive and negative. So I’ve been utilizing meditation to re-center myself.

The second aspect of this procedure is the Car-T cells themselves. The cells have been edited to find and destroy the myeloma cells. But the biggest problem with the edited T cells, is they get exhausted from doing this after a certain point.

Clearly, science hasn’t quite figured out manipulating cells, because body-made cells don’t have this issue as it will just replace the worn out cells.

There have been a few articles, that I know of, written about studies talking about reversing T-cell exhaustion. Two articles that I’m going to cite were written by Healthtree for Myeloma, which is a great myeloma resource if you aren’t currently using it.

Reversing T-cell exhaustion using antioxidants

How your T-cells become exhausted in fighting cancer

Essentially, again eating well, especially eating food that are high in antioxidants can give your engineered cells new life and help them replicate.

So where can I get a high concentration of antioxidants from?

In 2010, the National Library of Medicine came out with a study of various food sources and the levels of antioxidants that were in them. They found that plant-based foods are generally higher in antioxidant content than animal-based and mixed food products, with spices and herbs having the highest concentrations of all food types. It’s a fascinating read, even if you only look at their charts.

Source NIH Nutr J. 2010 Jan 22;9:3. doi: 10.1186/1475-2891-9-3. PMID: 20096093; PMCID: PMC2841576.

So post Car-T, I’m making sure to eat a wide variety of whole plant based foods that are quite flavorful because of an assortment of herbs and spices. I’m doing this to give my body a wide variety of antioxidants with the hope of supporting my T cells to do their best job. Besides the antioxidants, my body is receiving a tremendous amount of nutrition for further support.

None of this is guaranteed for success, but I feel like it’s giving me the best odds for success. I don’t feel as sharp mentally 🥴 as I normally do (side effect of Car-T), so I think I’ll end this post here. Maybe at some point I’ll come back and edit it when I’m fully functional again.

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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.