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.
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…
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.
My blood is back from the vampires. I haven’t had any run for two months now, so that was a change for me. I wasn’t having any test fears (Scanxiety) that a person can sometimes get, but I have been wondering how my numbers are looking.
I was especially wondering if my m band was a one month wonder or if I was going to sustain things, even though I cut out one of the maintenance chemos. I’ve been feeling pretty good, so my guess was that it’s still zero, and it is.
My reds (red blood cells) are still challenged. I was expecting them to get a boost since I dropped the cytoxan, but that wasn’t the case. I wouldn’t want things to get too easy, it’s best to be short on oxygen for a challenge 😜. Although my mcv is at the top, which means my red blood cells are large, so there can be fewer of them.
They also ran a blood test to check out my heart, which I was happy about since it’s possible carfilzomib can damage the heart. I had been wondering if anyone was monitoring things because I hadn’t seen any evidence of it so far. Thankfully, it tested normal.
Anyhow, here are the numbers:
KAPPA LIGHT CHAIN FREE
Normal range: 3.30 – 19.40 mg
Date
Value
Normal Range
Dec 1, 2023
3.06mg/L
3.3 – 19.4 mg/L
Oct 7, 2023
5.2mg/L
3.3 – 19.4 mg/L
Aug 25, 2023
5.32mg/L
3.3 – 19.4 mg/L
LAMBDA LIGHT CHAIN FREE, SERPL
Normal range: 5.71 – 26.30 mg/L
Date
Value
Normal Range
Dec 1, 2023
2.01mg/L
5.71 – 26.3 mg/L
Oct 7, 2023
3.03mg/L
5.71 – 26.3 mg/L
Aug 25, 2023
2.66mg/L
5.71 – 26.3 mg/L
KAPP/LAMB FR
Normal range: 0.26 – 1.65
Date
Value
Normal Range
Dec 1, 2023
1.52
0.26 – 1.65
Oct 7, 2023
1.72
0.26 – 1.65
Aug 25, 2023
2
0.26 – 1.65
WBC
Normal range: 3.7 – 11.1 K/uL
Date
Value
Normal Range
Dec 1, 2023
4.4K/uL
3.7 – 11.1 K/uL
Oct 5, 2023
4.9K/uL
3.7 – 11.1 K/uL
Sep 8, 2023
4.8K/uL
3.7 – 11.1 K/uL
RBC’S
Normal range: 4.10 – 5.70 M/uL
Date
Value
Normal Range
Dec 1, 2023
2.9M/uL
4.1 – 5.7 M/uL
Oct 5, 2023
3.15M/uL
4.1 – 5.7 M/uL
Sep 8, 2023
3.19M/uL
4.1 – 5.7 M/uL
HGB
Normal range: 13.0 – 17.0 g/dL
Date
Value
Normal Range
Dec 1, 2023
10.5g/dL
13 – 17 g/dL
Oct 5, 2023
11.3g/dL
13 – 17 g/dL
Sep 8, 2023
11.3g/dL
13 – 17 g/dL
HCT
Normal range: 39.0 – 51.0 %
Date
Value
Normal Range
Dec 1, 2023
29%
39 – 51 %
Oct 5, 2023
31.2%
39 – 51 %
Sep 8, 2023
31.9%
39 – 51 %
MCV
Normal range: 80 – 100 fL
Date
Value
Normal Range
Dec 1, 2023
100fL
80 – 100 fL
Oct 5, 2023
99fL
80 – 100 fL
Sep 8, 2023
100fL
80 – 100 fL
PLT
Normal range: 140 – 400 K/uL
Date
Value
Normal Range
Dec 1, 2023
109K/uL
140 – 400 K/uL
Oct 5, 2023
116K/uL
140 – 400 K/uL
Sep 8, 2023
150K/uL
140 – 400 K/uL
PROTEIN ELECTROPHORESIS INTERPRETATION, SERUM – No Homogeneous Band Or Spike Seen.
B type natriuretic protein Normal value: <=100 pg/mL
Value 43
>= 100 pg/ml may be associated with congestive heart failure. Other causes should be excluded. < 100 pg/ml clinically significant congestive heart failure unlikely. Clinical correlation required.
I had some big news with this set of labs. I was actually on a video visit with my myeloma specialist when the rest of my labs finally showed up. My wife and I quickly scrolled through them to see if there was anything that we wanted to ask the doctor about.
When we saw the myeloma marker M-band test, we both raised an eyebrow.
“No Homogeneous Band Or Spike Seen”
“Does that mean what I think it means?” I asked the doctor.
“Yes, your M-band reached zero and that’s a very good sign. With that result, it is probable that an MRD test would show zero myeloma cells in a million now.”
!!!!!!!!! (Inside of me)
For Non myelomers, basically what it means is, the cancer is no longer detectable from a blood test. It doesn’t mean I’m cancer free, there is just isn’t enough of it anymore to register. We are going to do another bone marrow MRD test in January, which is a lot more sensitive.
Honestly, I had given up on hitting zero for now, since I didn’t achieve it with the bone marrow transplant.
Then he went on talking about this, that and the other thing. The visit ended and a few minutes later, it really started to sink in. A wave of emotions hit me like a truck. I don’t even know what emotions I had, but it was overwhelming. Happiness? Joy? Relief? Exhaustion? I broke down crying.
An oncologist once told me that only 50% of myeloma patients are able to achieve a zero reading on their M-band, and even less in people who have my myeloma genetics. I’m not tooting my own horn, I’m just trying to convey what it means to me. It’s been one of my goals since the beginning.
I’ve been trying to achieve this result for over 4 years. The number 4 doesn’t sound very large, but it’s been nonstop for me. It’s over 1500 days of trying. Over 36,000 hours of trying to get zero.
Literally drinking thousands of carrots and beets. Hundreds of needle jabs. Days sweating in the sauna. Fevers, throwing up. Truck loads of vegetables. Bags and bags of IVs. Fatigue, like I’m walking up Everest without oxygen. Pounds of turmeric. How am I painting my picture?
I suppose I won’t actually know what ended up flipping the switch for me. Was it just the constant ponding from the chemo that did it? Did adding in the bacteria help? I won’t say I was just lucky, because I don’t believe in randomness when it comes to health. There is a reason, I just won’t ever know the reason.
I know full well that it’s possible it could only be for one month and I could have a reading next month, but I will take my small victory. It’s only a stepping stone for me, with still lots of work to go. I can’t let off the gas. I need to have repeat readings and prolong results of zero.
My other news is, that the Doc and I agreed that I would stop taking the cytoxan and just stay on the carfilzomib. I really can’t stand the cytoxan and I feel intuitively I should stop. It can be a bit scary to stop something that maybe helped stomp the myeloma. But, making decisions based of fear, is something that I try not to do. So, I’m going with my gut (also literally, since it’s shredding my digestive system).
Anyhow, here are some other labs results. My provider changed their system, which made it more difficult to transfer results over. I just picked the main ones I thought people would want to see.
I’m off to go eat some vegetables…..
WBC
Normal range: 3.7 – 11.1 K/uL
Date
Value
Normal Range
Oct 5, 2023
4.9K/uL
3.7 – 11.1 K/uL
Sep 8, 2023
4.8K/uL
3.7 – 11.1 K/uL
Aug 25, 2023
3.8K/uL
3.7 – 11.1 K/uL
Jul 30, 2023
4.1K/uL
3.7 – 11.1 K/uL
Jun 9, 2023
6.6K/uL
3.7 – 11.1 K/uL
RBC’S
Normal range: 4.10 – 5.70 M/uL
Date
Value
Normal Range
Oct 5, 2023
3.15M/uL
4.1 – 5.7 M/uL
Sep 8, 2023
3.19M/uL
4.1 – 5.7 M/uL
Aug 25, 2023
3.25M/uL
4.1 – 5.7 M/uL
Jul 30, 2023
3.57M/uL
4.1 – 5.7 M/uL
Jun 9, 2023
3.65M/uL
4.1 – 5.7 M/uL
HCTNormal range: 39.0 – 51.0 %
Date
Value
Normal Range
Oct 5, 2023
31.2%
39 – 51 %
Sep 8, 2023
31.9%
39 – 51 %
Aug 25, 2023
30.9%
39 – 51 %
Jul 30, 2023
32.7%
39 – 51 %
Jun 9, 2023
35.2%
39 – 51 %
RDW, RBC
Normal range: 12.0 – 16.5 %
Date
Value
Normal Range
Oct 5, 2023
12.9%
12 – 16.5 %
Sep 8, 2023
14.2%
12 – 16.5 %
Aug 25, 2023
13.8%
12 – 16.5 %
Jul 30, 2023
13.5%
12 – 16.5 %
Jun 9, 2023
13.3%
12 – 16.5 %
PLT
Normal range: 140 – 400 K/uL
Date
Value
Normal Range
Oct 5, 2023
116K/uL
140 – 400 K/uL
Sep 8, 2023
150K/uL
140 – 400 K/uL
Aug 25, 2023
127K/uL
140 – 400 K/uL
Jul 30, 2023
129K/uL
140 – 400 K/uL
Jun 9, 2023
109K/uL
140 – 400 K/uL
KAPPA LIGHT CHAIN FREE Normal range: 3.30 – 19.40 mg/L
Here is my latest set of labs, posted super late. I went on vacation and I didn’t have time to post them before I went. Light chains or M band weren’t run. My doctor’s office really screwed up all my lab orders, from not having them at all or trying to run tests they weren’t supposed to do. They had it set up to run a Hep B test, daily, if I wanted to get stuck every day and not something simple, like a CBC.
Nothing too exciting with my labs. I’m not too thrilled with my Red blood cells, Hematocrit and Hemoglobin. Although, I’m not really that far from the transplant in reality and my blood still gets punched in the face every 2 weeks. Maybe I need to eat more beets and goji berries.
I thought it may be interesting for Myeloma people to see my stem cell transplant labs. It’s a ton of data, there is a scroll bar on the bottom of each table, but it gives a pretty good picture. There are blanks on the “cytes and phils” because there weren’t any to measure at a certain point.
Stem cell collection on 3/31 (note the sky high white blood cells to be collected)
High Dose Chemo on 4/11
Stem Cell Infusion on 4/13 (interesting to see the decline and then the climb)
NAME (STANDARD RANGE)
3/20/23
3/31/23
4/10/23
4/13/23
4/14/23
4/15/23
4/16/23
4/17/23
4/18/23
4/19/23
4/20/23
4/21/23
4/22/23
4/23/23
4/24/23
4/26/23
5/2/23
5/11/23
Basophil % (%)
0.2
0.2
0.2
0.0
0.3
0.2
Basophil, Absolute (0.00 – 0.25 K/uL)
0.01
0.01
0.01
0.00
0.01
0.01
Eosinophil % (%)
1.8
0.8
0.2
1.0
0.3
5.9
Eosinophil, Absolute (0.05 – 0.55 K/uL)
0.10
0.04
0.01
0.03
0.01
0.24
Hematocrit (40.0 – 52.0 %)
33.3
36.8
32.6
30.9
29.7
29.3
27.9
28.4
27.2
25.7
23.4
21.7
21.5
19.5
20.7
21.1
25.1
28.3
Hemoglobin (13.5 – 17.7 g/dL)
12.2
13.2
11.9
11.1
10.5
10.6
10.3
10.5
10.3
10.0
9.2
8.5
8.1
7.4
7.6
8.0
9.0
10.2
Imm. Granulocyte, % (0.0 – 0.7 %)
0.4
0.2
0.2
0.7
0.6
0.2
Imm. Granulocyte, Abs (0.00 – 0.06 K/uL)
0.02
0.01
0.01
0.02
0.02
0.01
Lymphocyte % (%)
18.1
18.0
7.4
1.4
26.1
27.7
Lymphocyte, Absolute (1.00 – 3.00 K/uL)
1.02
0.92
0.31
0.04
0.87
1.13
MCH (27.0 – 34.0 pg)
34.0
34.3
33.7
33.5
33.8
33.4
33.2
33.0
33.9
34.0
33.9
33.5
32.4
33.2
31.9
33.5
33.3
34.1
MCHC (32.0 – 36.0 g/dL)
36.6
35.9
36.5
35.9
35.4
36.2
36.9
37.0
37.9
38.9
39.3
39.2
37.7
37.9
36.7
37.9
35.9
36.0
MCV (82.0 – 98.0 fL)
92.8
95.6
92.4
93.4
95.5
92.4
90.0
89.3
89.5
87.4
86.3
85.4
86.0
87.4
87.0
88.3
93.0
94.6
Monocyte % (%)
9.0
7.0
3.3
0.0
22.2
17.6
Monocyte, Absolute (0.30 – 0.95 K/uL)
0.51
0.36
0.14
0.00
0.74
0.72
Neutrophil % (%)
70.5
73.8
88.7
96.9
50.5
48.4
Neutrophil, Absolute (1.70 – 6.70 K/uL)
3.98
3.78
3.72
2.77
1.68
1.97
nRBC, Abs (K/uL)
0.00
0.00
0.00
0.00
0.00
0.00
nRBC, % (%)
0.0
0.0
0.0
0.0
0.0
0.0
Platelet count (150 – 400 K/uL)
165
125
146
104
95
85
85
65
54
36
22
15
7
17
20
34
90
110
RBC (4.40 – 5.90 MIL/uL)
3.59
3.85
3.53
3.31
3.11
3.17
3.10
3.18
3.04
2.94
2.71
2.54
2.50
2.23
2.38
2.39
2.70
2.99
RDW (11.5 – 14.5 %)
13.1
13.7
13.1
13.2
12.9
12.2
12.3
11.8
11.8
11.5
11.2
11.2
11.1
11.1
11.5
11.6
16.6
17.2
WBC (4.0 – 11.0 K/uL)
5.6
45.4
5.1
4.2
4.0
3.6
2.9
1.4
0.3
0.1
<0.1
0.1
0.1
0.3
2.0
2.6
3.3
4.1
NAME (STANDARD RANGE)
3/20/23
3/31/23
4/10/23
4/13/23
4/14/23
4/15/23
4/16/23
4/17/23
4/18/23
4/19/23
4/20/23
4/21/23
4/22/23
4/23/23
4/24/23
4/26/23
5/2/23
5/11/23
Albumin, Ser/Plas (3.5 – 5.2 g/dL)
4.7
4.7
4.2
4.0
4.3
4.2
4.4
4.3
4.2
3.9
4.2
4.0
3.9
3.9
4.0
4.4
4.5
Alk P’TASE, Total, Ser/Plas (40 – 130 U/L)
55
69
56
55
54
56
56
58
58
59
57
53
48
51
51
52
51
ALT (10 – 50 U/L)
20
17
11
13
15
15
13
15
14
10
11
10
10
12
12
16
30
Anion Gap (5 – 15 mmol/L)
10
9
11
11
12
11
12
10
11
11
10
11
11
9
7
9
9
AST (10 – 50 U/L)
15
15
9
13
14
11
12
15
11
12
11
14
12
12
11
16
21
Calcium (8.4 – 10.5 mg/dL)
9.4
8.9
8.6
8.3
8.9
8.8
8.8
8.8
8.9
8.7
8.6
8.4
8.3
8.7
8.3
8.9
9.3
Chloride, Ser/Plas (98 – 107 mmol/L)
106
109
105
106
106
104
106
104
102
104
101
103
105
106
107
107
105
CO2, Ser/Plas (22 – 29 mmol/L)
24
24
23
21
22
22
22
22
21
21
22
20
18
22
23
24
25
Creatinine (0.67 – 1.17 mg/dL)
0.70
0.68
0.68
0.57
0.60
0.60
0.60
0.64
0.65
0.67
0.65
0.62
0.66
0.55
0.59
0.62
0.74
EGFR (>60 mL/min/1.73 m2)
117
118
118
124
122
122
122
120
119
118
119
121
119
125
123
121
115
Fasting
No
Globulin (2.0 – 5.0 g/dL)
1.2
1.3
1.3
1.2
1.1
1.3
1.4
1.5
1.4
1.5
1.2
1.2
1.3
1.7
1.4
1.2
1.6
Glucose, SER/PLAS (Manual Entry) See EMR for details (70 – 140 mg/dL)
A number of my labs look like this. My poor cells after getting hit with high dose chemo. I hope the myeloma cells are following a similar trajectory 😅…..
Here is the latest set, a little late. It’s the first full set since I changed drugs. Light chains, made it to normal levels (barely). M-band dropped by 60%, which was awesome to see. I’m curious how far it will go, if it will hit zero.
My protein levels got punched and I’m not sure what happened to my Gamma Globlins. They pretty much have never moved much at all and all of a sudden they are low. My M spike is in the Gamma region, so I’m thinking maybe it has something to do with that? I’ll have to ask the Dr.
My platelets haven’t been this high in over three and a half years, so that was also nice to see. I’d say the rest of the numbers are more or less the same as usual.
Carrots Over Cancer 