Category: Blog

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?

Blog

I’m Still Standing

Jothi

Today is my Cancerversary.

This one a a bit more emotional for me.

Today, I reached 5 years.

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?

Blog, labs

Labs 5/17/24

Jothi

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.

Blog

521 Days Left

Jothi

I went to the lifespan doctor today. I sat down in her blue medical chair and waited for her to finish reviewing my paperwork. She finished up and said,

“Hold out your finger please”

You see, I was sitting next to the lifespan machine. She pulled out a thin cord that had a tiny needle attached to the end.

“Ouch”, I cried out as she stuck me with the needle and took a little bit of blood.

The dials and wheels on the machine started whirling as it processed my blood and was computing.

It printed out a small strip of paper with the number 521 on it.

“You have 521 days left to live”, the doctor said.

“Good to know”, I replied as I got up to leave. “Thanks”.

🤔 Of course, there is no such thing as a lifespan machine.

Sometimes, I feel like I didn’t have a worthwhile day and it was a wasted. It does leave me pondering, dang, what if I only had 521 days left to life and I just wasted one of them? Sometimes, I just have to live with that thought.

Whoever you are reading this, what if you knew you only had 521 days left? What would you do that would make them good days left?

For me, seeing my wife or kids have a good laugh and a big smile on their faces, makes it a good day.

Going out in nature and experiencing things that make me be in awe, is a good day.

Doing something creative, makes it a good day.

Spending 5 hours a day looking at instagram is a good day…… oh wait, Meta high jacked my account and wrote that in there! Actually for me, those are the days that I feel like I wasted, the ones I spend too much time looking at a screen (I only spend 5-10 minutes a few times a week looking at instagram).

Next time you have a good day, try and identify what made it good and try and duplicate it. Next time you feel you wasted a day, try and find out why it felt wasted and try and eliminate that aspect.

None of us know how many days we have left to live, 1 to 25,000, try and make them count in whatever fashion counts for you.

We don’t have a machine that tells us how many days we have left. I’m going to try and do my best not waste mine.

Blog, labs

It’s Been Awhile

Jothi

Looks like I haven’t written anything for awhile. For no particular reason; I guess I just haven’t felt inspired. Hmm…. I wonder what has happened recently in my myeloma world.

I had a bone marrow biopsy (maybe in January?) to check my MRD status. I went up to 27 myeloma cells in a million. That was from about 1 in a million. So that was a bummer to see. MRD is pretty cutting edge. Nothing showed up on my blood tests, although the following round of blood tests showed my m-band moved to “detectable but not quantifiable”. BLAH, it would have been nice to hit MRD zero and stay there.

My oncologist didn’t want to make any changes based on MRD as most oncologist would follow. The myeloma specialist then spoke to the oncologist and then had a meeting with me to talk things over. He said that the numbers were not trending in the right direction, and what was the point of waiting until things significantly elevated. The specialist said he went through the list of drugs and wanted to add in a drug that “wasn’t going to do me harm”. He recommended adding back in Dara to punch the numbers back down.

I was on Dara prior to transplant, but Stanford stopped it because it was not working fast enough. Since it didn’t seem to give me any problems, I agreed to go back on it. If he was recommending something like cytoxan, I would have said no.

Well, as it turns out, side effects can change post transplant. I had my first dose of Dara with carfilzomib and it was rough. I turned into a 90-year old, with super fatigue. My skin on my torso also went hypersensitive and wearing a shirt was unpleasant. Too bad we were still in winter ❄️. That lasted for about a week. I had another round two weeks after the first, and the same thing happened again. The oncologist was baffled. We ran some blood tests, but nothing showed up. I’ve noticed that if something is out of the ordinary and not listed on a clinical trial, the oncologist is left bumbling his bottom lip and saying, “Good luck with that”.

Fortunately for me, by the third dose, my body was getting used to the drug and the symptoms significantly lessened. I didn’t have any of those symptoms by the fourth dose. So I’m back to being left with the few days of being miserable from the carfilzomib side effects. Maybe the cancer gods will show me some favor and things will get good enough to eventually drop the carfilzomib and just stay on the Dara.

But then again, at this point, I’m pretty sure the cancer gods don’t like me very much 😜. But then again again, they just updated all the five year cancer survival rates, and myeloma is now 59%. I’m going to hit 5 years soon. Not that I attribute that to the cancer gods, I’ll take the credit with my efforts.

I guess the other thing physically that happened was that, I developed a frozen shoulder. Possibly from the chemo, they aren’t actually sure what causes them. It’s quite bizarre. I can’t raise my right hand or arm above shoulder height or move it in an outward direction. I guess the tissue surrounding the “ball” of your arm, that goes into your socket, just seizes up. It can take 8 months to 2 years to “unfreeze”. Fortunately, it looks like I’m going through the stages at the faster rate. I’m sure the infrared sauna and turmeric are helping. Too bad my muscles didn’t freeze in a better spot 💪🏼. Imagine having your six pack be frozen and being ripped for 2 years.

Let’s see, I guess I have some blood numbers to share, here you go.

My medical provider made it a pain for me to transfer over my data, so that’s why I don’t post much about it (plus, I don’t have blood run much these days). Because of my weird side effects from the Dara, they did run a whole metabolic panel. My red blood cell numbers are still low. From the metabolic panel, they ran iron.

As you can see, my iron is quite well, from all those goji berries and beets. So my poor red blood cells are just quite beat up from the chemo. I thought that was interesting to see.

Well, I can tell your attention span is beginning to wane by this part of the post so I’ll be quick with the rest.

I made it to a succulent nursery, “Succulent Gardens”, down by Monterey, that I always wanted to go to. That was pretty awesome to visit. I’m a huge succulent fan, as you may have noticed from the pictures on my website. They supply plants to a lot of the other nurseries in California, so I was cool to visit the source. Here are some pictures.

I took a mushroom propagating class at a local collage. I sort of knew how to grow mushrooms from books and the internet, but I wanted some hands on training. So I know how to do that now. I have mushrooms growing inside the kitchen cupboards now. Hopefully at some point I’ll have a bigger space to really get into it.

Preparing mushroom growing media.

Finally, spring has sprung. Here are my irises that I planted last year. They had a year to grow and be undisturbed, so they are happy. Yukon likes to eat the grass around the pot.

Blog

My Hidden Superpower

Jothi

I was walking my dog Yukon the other day. We go for a walk every day, for my benefit and his. Most days, Yukon needs to have a bowel movement along the way, much to my chagrin. But hey, it’s part of nature, and I’ve let go of my timing preferences.

His perfect moment for this day was way at the other end of our street, in front of a deaf guy’s house. Yukon was doing his business, not in the guy’s yard but in front. Suddenly, the door flies open, and the guy starts yelling at me in a way that I couldn’t understand, since he was deaf. But it was pretty easy to tell he was not happy about Yukon’s choice.

“I’m cleaning it up” I said.

He kept yelling, not hearing what I said. Obviously, out of habit I spoke, since I don’t have much experience communicating with a deaf person.

I showed him the dog poop bags, he understood that, waved and slammed his door.

Now, I’ve never left a mess behind, anytime or anywhere, from my dog. I hate stepping in dog poo and it’s a lame move to let your dog poop in someone’s yard and leave it. His reaction would have been fully justified in my mind if that’s what I did. But I didn’t. He must have been having a bad day and this was the last straw.

Lucky me, it’s not like I can control my dog’s bowel movements. OR CAN I??? It’s something that I’ve wished for more than a couple of times.

REALLY?!?!

You are going here?

I have to carry this now for 2.5 miles, back to a garbage can!?!

It would be a super handy, but super lame super power.

Recently, I was standing in a circle in my superhero group. You see, an Alien race was starting to invade, and it looked like the end for humanity. We were its last hope.

“Let’s review everyone’s powers before we head out” Colossal man said.

“I have super strength and speed” one said.

“I can teleport” said another.

“I don’t have a superpower, but I’m really rich and can make gadgets” said the third.

“I can create and control fire” chimed another.

It was my turn and everyone turned to me.

“I can control my dog’s bowel movements”, I said.

Invincible Woman turned to me and said, “I’m so jealous of your power.”

“I know right, it’s pretty awesome” I replied. 😜

Oh well….. I guess I can cross off getting scolded by a deaf man off my bucket list.

Blog

Fernando

Jothi

I was cooking lunch today, and the song “Sweet Child o’ Mine” came on. That song has one of the most epic openings of all time; you can’t help but play your air guitar. But it made me think of my friend Fernando.

We weren’t best friends or anything. We spent countless hours at work together, even though we worked for separate companies. Spending a lot of time with “the guys” somehow creates a brotherly feeling.

Fernando loved rock and roll. I remember him always going to concerts and wearing various rock and roll band t-shirts. He had a loud, rich projecting laugh. He loved hummus and celery and would tell me excitedly what flavors of hummus were his favorites. His dream vehicle was a Chevy Silverado. He was so happy the day he drove up after he was able to buy one.

I remember one job. It was my job to completely redo the electrical system of one of the famous “Painted Ladies” houses in San Francisco. The job was near the end. I had taken off my work shoes in the garage, to go inside so I wouldn’t scratch the new floors, to go up to the 4th floor to do some testing.

Fernando thought it would be funny and a good joke to take a roll of blue painters tape and go around and around my shoes with tape, until they were a blob of blue tape.

One of his co-workers called up the stairs in an urgent voice for me to come down.

Unfortunately for Fernando, his boss and the architect made a surprise visit, and they wanted to go over some things with me in the garage.

I got to the bottom of the stairs to see Fernando’s face, stressing out, panicking, and trying to take all the tape off my shoes, worried he was going to get into trouble with his boss. I had a good laugh at his prank backfiring. He wasn’t going to get it off in time, so I just kept walking into the garage in my socks. Fortunately, most people just don’t look at other people’s feet, and his boss and the architect didn’t notice. He had such a face of relief afterward, and we all had a good laugh.

A few months after my cancer diagnosis, about five years ago now, I got a text from a gossipy co-worker. I had gone through radiation and was doing induction chemotherapy (VRD). I was not working and was trying to get my head straight again.

“Did you hear about Fernando?” He asked.

“No, what’s up with Fernando?” I replied.

I was standing out in the backyard, in my garden, and there was no reply. “Well, thanks,” I thought to myself. You can’t just say something like that and ghost a person.

I’m also friends with Fernando’s boss. I called him up.

“What’s going on with Fernando?”

“I was trying to keep this from you” he replied.

“WHAT!?!?!” I said impatiently, getting nervous.

Fernando’s boss is 6 feet tall, gruff, hairy as all get out, an ex-football player, has a good beard as well a gigantic belly, and looks like he should be driving around on a Harley.

He burst out crying.

“Fernando killed himself a few days ago.”

“Oh God,” with tears forming in the corners of my eyes.

I was in shock. I know we kept talking on the phone, but the conversation has been wiped out of my head. I just remember the crying. My work brother was gone…..

We go through our lives creating a network of strings, of connections with people we come across. People who become part of our beings. When people disappear from our strings, there are holes.

You don’t understand what role you hold for other people, but it’s more than you think. It’s something that I think of occasionally, between my pre and cancer life. Sometimes I already feel like just a memory to my pre-cancer relationships. What things will I be remembered for?

For the record, I love hummus and celery as well.

Sweet Friend o’ Mine, Fernando.

Blog

How To Rub Your Kidneys

Jothi

This post probably should be called Why Should I Rub My Kidneys? But knowing how to, probably more specifically, where they are to rub, is more important.

Known as “The Root of Life” in Chinese Medicine. They act like batteries for Qi, or energy, for your body. I like to get up in the morning, have a big glass of warm water, and rub my kidneys to charge them up for the day. Your kidneys filter the toxins and waste from your body, and you get rid of that via a direct connection between your kidneys and bladder.

In TCM, the kidneys are also responsible for the production of bone marrow, which governs your bones, brain, spinal cord and obviously your marrow. So anyone with myeloma, blood or bone issues should take extra care of their kidneys. Renal failure or kidney failure is one of the main ways people with myeloma die, getting plugged up with all those extra light chains. These guys are very important to keep running well for everyone, especially people with cancer.

If you don’t believe any of this or none of this makes sense to you, who doesn’t like a good back rub? It just feels good, and you can do it anytime and while doing other things. I rub my kidneys while I cook, because there is a lot of little snippets of time in between things. Rubbing them, while standing and having a chat with a friend is also a good time. If you are too sick to do it, you can get help or get a little electric massager to do the job.

So, where are your kidneys located for a good rub?

All you have to do is find the bottom of your ribs on your back. Your kidneys are a little under your ribs at the top, and the rest are exposed right under, on either side of your spine.

In this picture, my hands are right up against the bottom of my ribs, so that’s the level for my kidney massage.

There are also two thin tubes of called ureters that run between your kidneys and bladder. I also like to rub from my waist to my kidneys to get those a bit of a massage as well.

The actual kidney massage should be whatever feels good for you and your body type. You can go clockwise, counterclockwise, back and forth, and up and down.

Using a closed fist versus open hands will change the feeling as well.

In this video, I’m using the Qi Gong method of massage, using the acupuncture point, Large Intestine 4, or the Great Eliminator, on my kidneys. If you make a V with your pointer finger and thumb, the spot is at the bottom of the V. (LI-4 is also a good spot to rub in general or if you are going through some constipation)

I do find it interesting, as I’m currently going through carfilzomib. I can feel my kidneys working hard a few hours after the infusion, especially when my urine turns a putrid color. I can feel that my left kidney is having a harder time with things than my right. I make sure to drink lots of fluids and rub, rub, rub especially on the left.

It’s a minimal commitment to do and another simple tool to put into your well-being toolbox. Give it a try!