light chains – Carrots Over Cancer

Labs 12/14/24 and 1/13/25

January 23, 2025 Jothi

Here are my latest set of numbers for curious people. It’s been around 5 months since I had my car-t cell infused. By the looks of it though, I still have cancer in my blood at this point. I asked the doctor about it, and he said my having a value for my m-band didn’t necessarily mean I have malignant cells still circulating, and that sometimes it just takes awhile for the m-band to clear.

It has never taken me this long to clear my m-band, and it feels like a bit of sugarcoating on his part. But I’m trying to keep an open mind about it. I find my anxiety level is a lot higher after my car-t, which come to read recently, can be a side effect of car-t.

My light chains are still obliterated, which is good on the cancer front. In December, my m-band had a 50% drop, from .4 to .2, which I was pretty excited about. In January though, my m-band didn’t seem to move at all, which I feel kind of stinks.

Although to be fair, my December test, I could have been at .2999 and it would still show .2, and now I could be at .2001, which would also show as .2. The test isn’t that sensitive though, so I’m having to try and not worry about it for another month until my next test.

My reds in my blood are still lousy. They never recovered after my stem cell transplant and are beat up more from the car-t. But they could be worse, so I’m still eating my plant iron to try to support them.

I had a new blood test done in December called TBNK Single Platform. It is a test that measured my various T cell levels, which I found pretty fascinating. In a nutshell, after some research, my low CD4 reading is normal after car-t, and it means that I have low immunity against germs and viruses. CD4 T cells also support cancer-killing T cells to do their job, so low isn’t the best, but it’s expected. They just have to work hard.

My CD8 T cells are high, which means my genetically engineered cells are doing quite well, multiplying and there are plenty of them to do their job of disposing of myeloma. I guess I just need them to get in all the little nooks and crannies in my body to do their job completely.

Overall, I do feel pretty good. Being off all treatment is awesome. I’ve taken up jogging again, which does feel good to move my body, get my heart pounding hard, and work out my lungs.

I did get sick at the beginning of January, which did end up sending me to the emergency room. My sickness wasn’t too bad, and honestly it did tick me off that I had to go to the ER. My fever spiked up to 102.4 and that’s what earned me the trip. It was just a run of the mill virus after all the tests that were done. It has taken me 2 weeks to mostly get over it, though. My wife caught it from me, and it took her only 3 days to get over it.

I guess CD4 cells really matter…..

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CAR-T

June 26, 2024 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?

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Labs 2/3/23

February 10, 2023February 10, 2023 Jothi

Here is my latest set. Not a whole lot changed. My light chains are now both low. I guess the drugs are really hammering them. M-band is too low to quantify. Some of the CBC’s are up and the others a down a bit.

I had another bone marrow biopsy as well. Results showed the myeloma is under 1%. Previous test showed 20%, so that was a huge drop in 3 months. They ran another fish genetics test as well for some reason. That came back normal, I do have the 1q gain and the 14:16 myeloma genetics, that show up when there is enough myeloma.

Name Standard range	12/9/22	1/6/23	2/3/23
KAPP/LAMB FR 0.26 – 1.65	0.29	0.39	0.73
KAPPA LIGHT CHAIN FREE 3.30 – 19.40 mg/L	3.55	2.25	2.14
LAMBDA LIGHT CHAIN FREE, SERPL 5.71 – 26.30 mg/L	12.07	5.82	2.92

Component	Your value	Standard range
Creatinine	0.72 mg/dL	<=1.34 mg/dL
Estimated Glomerular Filtration Rate	>60 mL/min/1.73 m2	=60 mL/min/1.73 m2

Component	Your value	Standard range
Bilirubin, total	1.0 mg/dL	0.2 – 1.2 mg/dL

Component	Your value	Standard range
ALT	16 U/L	0 to 47 U/L0 – 47 U/L

Name Standard range	12/9/22	1/6/23	2/3/23
HCT 39.0 – 51.0 %	35.8	34.9	35.1
HGB 13.0 – 17.0 g/dL	13.2	12.4	12.4
MCV 80 – 100 fL	89	94	97
NRBC <=0 /100WC	0	0	0
PLT 140 – 400 K/uL	177	177	184
RBC’S 4.10 – 5.70 M/uL	4.02	3.72	3.63
RDW, RBC 12.0 – 16.5 %	14.9	15.2	13.8
WBC 3.7 – 11.1 K/uL	4.4	4.7	5.5

Name Standard range	12/9/22	1/6/23	2/3/23
BASOS % AUTO %	0	0	0
BASOS ABS AUTO 0.0 – 0.1 K/uL	0.0	0.0	0.0
EOS % AUTO %	1	2	4
EOS ABS AUTO 0.0 – 0.4 K/uL	0.0	0.1	0.2
IMMAT GRANS ABS AUTO 0.0 – 0.1 K/uL	0.0	0.0	0.0
IMMAT GRANULO % AUTO %	0	0	0
LYMPHS % AUTO %	25	28	28
LYMPHS ABS AUTO 0.9 – 3.2 K/uL	1.1	1.3	1.5
MONOS % AUTO %	14	12	12
MONOS ABS AUTO 0.3 – 0.9 K/uL	0.6	0.6	0.6
NEUTROPHILS % AUTO %	61	58	56
NEUTROPHILS ABS AUTO 1.8 – 7.9 K/uL	2.7	2.8	3.1

Name Standard range	12/9/22	1/6/23	2/3/23	2/3/23
ALB 3.8 – 5.0 g/dL	4.3	4.2	4.5
ALPHA 1 GLOB EP 0.2 – 0.4 g/dL	0.3	0.3	0.3
ALPHA 2 GLOB EP 0.5 – 1.0 g/dL	0.4	0.4	0.5
BETA GLOB EP 0.6 – 1.2 g/dL	0.6	0.6	0.6
GAMMA GLOB EP 0.7 – 1.8 g/dL	0.6	0.4	0.4
TP 6.0 – 7.7 g/dL			6.2	6.2

Name Standard range	12/9/22	1/6/23	2/3/23
M-BAND-1 <=0.0 g/dL	0.4	SEE ABN	SEE ABN
SPEP INTERPRETATION	SEE ABN	SEE ABN	SEE ABN

RESULT
Normal FISH Result

1q (CKS1B) Gain: not detected
t(4;14) (IGH-FGFR3) Fusion: not detected
9p (JAK2) Gain: not detected
11q (CCND1) Gain: not detected
t(11;14) (IGH-CCND1) Fusion: not detected
t(14;16) (IGH-MAF) Fusion: not detected
t(14;20) (IGH-MAFB) Fusion: not detected
17p (TP53) Deletion: not detected

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Labs 10/13/22

October 17, 2022October 16, 2022 Jothi

Normal blood numbers look good. Cancer numbers look BLAH! I feel like my cancer cells see the cancer drugs and are flipping the bird and going the other direction.

Name Standard range	8/18/22	9/15/22	10/13/22
KAPP/LAMB FR 0.26 – 1.65	0.06	0.07	0.06
KAPPA LIGHT CHAIN FREE 3.30 – 19.40 mg/L	6.71	7.66	6.73
LAMBDA LIGHT CHAIN FREE, SERPL 5.71 – 26.30 mg/L	117.49	110.37	118.37

Component	Your value	Standard range
Creatinine	0.68 mg/dL	<=1.34 mg/dL
Estimated Glomerular Filtration Rate	>60 mL/min/1.73 m2	>=60 mL/min/1.73 m2

Component	Your value	Standard range
Bilirubin, total	0.7 mg/dL	0.2 to 1.2 mg/dL

Name Standard range	7/15/22	8/18/22	10/13/22
TSH 0.4 – 4.2 uIU/mL	18.7	3.2	3.7

Name Standard range	8/26/22	9/15/22	10/13/22
HCT 39.0 – 51.0 %	38.5	38.6	38.5
HGB 13.0 – 17.0 g/dL	13.9	13.6	13.6
MCV 80 – 100 fL	92	92	91
NRBC <=0 /100WC	0	0	0
PLT 140 – 400 K/uL	155	132	123
RBC’S 4.10 – 5.70 M/uL	4.17	4.20	4.24
RDW, RBC 12.0 – 16.5 %	13.2	13.3	13.6
WBC 3.7 – 11.1 K/uL	5.0	3.9	5.3

Name Standard range	8/26/22	9/15/22	10/13/22
BASOS % AUTO %	1	1	1
BASOS ABS AUTO 0.0 – 0.1 K/uL	0.0	0.0	0.0
EOS % AUTO %	5	2	4
EOS ABS AUTO 0.0 – 0.4 K/uL	0.2	0.1	0.2
IMMAT GRANS ABS AUTO 0.0 – 0.1 K/uL	0.0	0.0	0.0
IMMAT GRANULO % AUTO %	0	0	0
LYMPHS % AUTO %	24	42	39
LYMPHS ABS AUTO 0.9 – 3.2 K/uL	1.2	1.7	2.1
MONOS % AUTO %	8	15	14
MONOS ABS AUTO 0.3 – 0.9 K/uL	0.4	0.6	0.7
NEUTROPHILS % AUTO %	62	39	42
NEUTROPHILS ABS AUTO 1.8 – 7.9 K/uL	3.1	1.5	2.2

Name Standard range	8/18/22	9/15/22	10/13/22	10/13/22
ALB 3.8 – 5.0 g/dL	4.0	4.1	4.1
ALPHA 1 GLOB EP 0.2 – 0.4 g/dL	0.3	0.3	0.3
ALPHA 2 GLOB EP 0.5 – 1.0 g/dL	0.4	0.4	0.5
BETA GLOB EP 0.6 – 1.2 g/dL	0.6	0.6	0.6
GAMMA GLOB EP 0.7 – 1.8 g/dL	1.1	1.0	1.1
TP 6.0 – 7.7 g/dL			6.6	6.6

Name Standard range	8/18/22	9/15/22	10/13/22
M-BAND-1 <=0.0 g/dL	1.0	0.9	1.0

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Labs 08/18/22

August 24, 2022 Jothi

Here is my last set of labs. I back dated the labs a bit just to show the trend. Looks like Dara/Pom/Dex is having a good effect for me. 8/18 test is after one cycle. 7/15 is my baseline.

I was thinking things were working a few weeks earlier, because my monocytes were way above normal range on the weekly blood tests. Monocytes are basically your body’s garbage trucks. So I have a large amount of dead cells needing to be processed, I was just hoping they were dead myeloma cells and not too many healthy cells. I still have a ways to go. I wonder how long it will take to get the light chains/M band punched back down?

Kidney’s and Liver still working well, High five!

Standard range	6/17/22	7/15/22	8/18/22
KAPP/LAMB FR 0.26 – 1.65	0.05	0.04	0.06
KAPPA LIGHT CHAIN FREE 3.30 – 19.40 mg/L	7.16	5.70	6.71
LAMBDA LIGHT CHAIN FREE, SERPL 5.71 – 26.30 mg/L	135.98	142.52	117.49

Name Standard range	6/17/22	7/15/22	8/18/22
M-BAND-1 <=0.0 g/dL	1.3	1.4	1.0
SPEP INTERPRETATION	SEE ABN	SEE ABN	SEE ABN

Name Standard range	8/5/22	8/12/22	8/18/22
HCT 39.0 – 51.0 %	34.5	36.3	36.8
HGB 13.0 – 17.0 g/dL	12.4	13.3	13.6
MCV 80 – 100 fL	92	92	91
NRBC <=0 /100WC	0	0	0
PLT 140 – 400 K/uL	119	117	137
RBC’S 4.10 – 5.70 M/uL	3.76	3.93	4.03
RDW, RBC 12.0 – 16.5 %	12.8	12.9	12.6
WBC 3.7 – 11.1 K/uL	3.9	3.1	4.2