Tag: dara sq

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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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Brains……

Jothi

It feels like a long time since I posted something, but actually it hasn’t been that long. I have been working on a few things, but they aren’t done yet.

I switched recently from getting Dara and dex weekly, to every other week. I seemed to be more or less humming along getting it weekly so that’s what I was expecting, getting it every other week.

Well, I was wrong about that. It almost seems like my body reset from the drugs and I was getting them for the first time all over again. Nothing major from side affects, other than extreme FATIGUE. I was a zombie for days. I had my normal loss of sleep for two days from the dex, but even on those days I didn’t want to get out of bed in the middle of the night to do things, like I normally do. I get the injection and dex on Saturday and more dex on Sunday.

Monday, Tuesday and Wednesday I was sleeping 9-10 hours a night. I’d go to bed tired and wake up just as tired 🥱. It wasn’t until Thursday, til I started snapping out of it. It would have been interesting to see a CBC, to see what the blood was doing. Red blood cell drop?

I was still up doing things, but as bedtime got closer, my bed was looking so good. “Honey, I’m going to bed!”

No chemo this week, I’m even on a Pom break. Blood tests at the end of the week.

Speaking of blood tests. I was reading an article about some myeloma patients relapsing after initial treatment with bispecific antibodies, which of course is what Dara is. HAHA, just what I need to be reading after starting initial treatment 😅.

I could see my mind, almost from a third party, start the fear cycle. It lasted a few seconds before I said to myself “Screw it, I’m not going down this road. It’s either working or not and that’s out of my control.” Keep living while you still have life and not worry about the rest.

I’ve been referred to Stanford for a bone marrow transplant. I have my meeting with them tomorrow. I met with them 3 years ago to go over everything and learn about it. I did not elect to do it at the time. Something about it never sat right with me. It just seems counterintuitive to me. Dropping an atomic bomb on my body, while they try and keep me alive, waiting for my body to pick up the pieces and put it back together.

I hired a myeloma specialist earlier in the year from UCSF. I had to pay out of pocket for it, since my provider claims to have expertise in myeloma and they wouldn’t cover it, since it’s out of network. I now know, their expertise is limited compared to the specialist and UCSF. American health care can be so frustrating 😡.

The specialist told me, that there are basically only four things that work against myeloma. Initial treatment, Bone marrow transplant, Dara and Car T cell therapy. There is some free knowledge for you from a specialist. Hence, that’s why I’m back to heading down to talk with Stanford tomorrow. I’ve learned to let go of things and just go with the flow in my particular point in the river.

My youngest son Rohan (12), decided he wanted to play baseball. They have a winter league starting up soon, so we signed him up. He’s really excited and looking forward to it. I decided to sign up to be a assistant coach for his age group. I’m not sure what compelled me to volunteer to be surrounded by a bunch of pre teens and teens. I’ll just have to not come on days that I’m affected by dex 🤯.

I do enjoy baseball. I played on a team when I was around his age. I remember being so competitive. I played first base for the beginning of the season. Our worse player got stuck out in right field of course. After seeing him not catch the ball repeatedly, I asked to be switched to center field.

I remember one game, the other team figured out that our right fielder had catching issues and kept hitting the ball to right. Hit after hit, run after run. I got so mad at my teammate. I was playing center and a good chunk of right, which of course is too much ground to cover effectively for one person. I was having balls fall in center because I was in right field, which of course did not help my mental attitude 😅. We lost the game of course.

Our right fielder had lots of fielding practice going forward and things got better, including his happiness. I’m sure he didn’t like dropping every ball that was hit his way. I’d sure like to go back in time and smack myself on top of the head to gain some sense.

Looking back on something like that now, it’s so trivial. Like a little league game matters in the grand scheme of things. It’s funny how a lot of things in life we give greater importance to than they actually have. One of the things that matter (in my opinion) with life, is the happiness for the people that surround you. I hope to pass that on to the next generation.

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The First Post

Jothi

Well, where to start? My name is Jothi (pronounced Joe-T). I’m married for 20+ years at this point, and we have 4 children aged 12-19. I am a big nature person. I love spending time outdoors, gardening, hiking, going to the beach, exploring. I am also a huge gamer. Games of any type, board games, sports (both playing and watching) and occasional video games.

People who I would like to sit down and have a long conversation with are in no particular order: Dalai Lama, Barack Obama, Warren Buffett, Anita Moorjani, Neil McKinney, Shin Terayama, Ryan Reynolds, Michael Jordan, John Stewart, Helen Jane Long and Steve Kerr.

For my myeloma family out there, I have Lambda Light chain myeloma. Which means I have too many lambda light chains that make up my blood for everyone else. I have the 14;16 translocation in my myeloma genetics, which basically means my myeloma is smarter than standard myeloma and is good at side stepping drugs.

I had 2 lesions when I was diagnosed, one on my 7 rib on my right side and a bigger one on the right side of my sacrum. Sometimes, I think about tumor placement in the body, and while there are worse spots than the sacrum, the sacrum is a terrible spot to have a tumor! I don’t recommend it. That’s the spot where your spinal cord fans out in a fantastic web of nerves. To this day, it’s like a little bird sitting on my shoulder poking me, saying, cancer, cancer, cancer.

I have had radiation on my sacrum and I went through the VRD chemo protocol (Velcade, Dex and revlimid). I elected not to do the stem cell transplant at that time. My lambda light chains at the high point were 470 and my Kapp/Lamb Fr was .01. M-band was 1.4.

About a month ago I started on Dara sq, Pom and Dex. As of last blood draw, my Lambda light chains are 142.52 Kappa Light chains 5.70 and KAPP/LAMB FR is .04. My M-band is 1.4. These numbers are after being off of all Chemo for over 6 months after I had a go with covid and saw that the chemo wasn’t doing anything anyhow.

I’ve had 2 pet scans this year, with the most recent in July. Both have come back showing no cancer activity.

I have become very passionate of diet, nutrition and what actual food is along my brief journey. When I was struggling for a website name, my kids suggested: Eatyourvegetablesdotcom, but it was already taken. But it is definitely my motto.

That’s the gritty numbers post with the information download. I hope my future posts will be a bit more fun and entertaining.

EAT YOUR VEGETABLES!!!