Well, I got through another month and a half of my blood not trying to kill me, so I’m quite pleased about that. I’m starting to get cautiously hopeful. My specialist reminded me the other day that 30% of people who have car-t are cured. But the unspoken math says 70% aren’t. That would really be something to permanently survive myeloma.
My IGG is back to normal, which makes me feel some semblance of normal as far as energy and ability. When I was down in the lower 400s, I was really dragging, and I was getting sick frequently. I don’t know what my IGM or IGA are because my doctor doesn’t like to have them tested. IGA is the important one for this time of year, being cold and flu season, and that’s what those antibodies main job are.
I’m unsure at this point whether I can maintain my IGG level on my own or if I’ll start dropping again. The car-t really destroyed my IG levels as well as the cancer, so my antibody production ability is still unknown. The doctor stopped my IGG infusions, and we will wait and see at the next round of blood tests if I can hold it.
I don’t feel like writing a lot about my labs this month, because I’m getting bored with talking about bloodwork.
The only thing that I wanted to briefly talk about is that my m-band is back to nothing. Obviously that is important to me, but I wanted to point it out just so other people going through car-t, see that m-band can fluctuate. I feel like that’s significant for other people to see, since shared information is hard to find.
Having it be zero and then having a hint of something and then back to zero is something that can be stressful. When I spoke to my specialist earlier in the month, he said science at this point just doesn’t have a good understanding of how it all works.
I just have to keep hoping for it to stay at zero.
Here are my latest numbers. I find myself holding my breath every month still. Last month, my m-band showed up with a value of detectable but not quantifiable, which of course I was not happy about. This month it was the same. (M-band indicates an excess of abnormal antibodies (M-proteins) in the blood, and can be caused by myeloma or by a few other reasons.)
My doc says there are no signs of myeloma; I’m not sure if I believe him with that showing up on my m-band. Although, I don’t know what to believe in general within myself. It could be cancer, it also could be my post car-t immune system. Only time will tell. My light chains are normal, so that’s good. My lambdas went into normal range this month. They have been low since my car-t, which I guess is a year old now.
I guess I haven’t really written about growing mushrooms here on my blog. I’ve been posting a bit about it on instagram. Anyhow, I started growing gourmet and medicinal mushrooms in May, I believe. It was a bit of a learning curve to it, and I’m still learning, but I have a lot of it down by now. Growing mushrooms here at home has left me, at times, with quite a surplus of mushrooms. So I’ve been eating lots of them everyday.
Something that I learned in the last few months is that mushroom organism (mycelium) is still alive and active for up to 48 hours after the mushrooms have been picked. Being picked fresh and then consumed has exposed my cells to something different.
The reason for my seemingly random tangent is when I was looking at my CBC last month and particularly this month (it’s easier to see the trend), I was surprised to see the spike up in my red blood cells, hemoglobin, and hematocrit. It’s quite noticeable on a data point graph (posted below).
When there is a change, I like to look and see what has happened since. Not much has changed in my life other than my consumption of new and a lot of mushrooms. It could be for other reasons, but it makes me wonder if mushrooms are responsible. The four mushrooms that I’ve been growing are pink and yellow oysters (gourmet), lion’s mane (gourmet and medicinal), and reishi (medicinal). But perhaps that is for another post.
In any case, I’m left with another month of mental torment, wondering if the myeloma is percolating or if the cancer gods are just messing with me. Just keep walking is what I tell myself. I’m off to get another round of IVIG to help my poor immune system.
Hello all. Here is the most recent snap shot of my blood. I view it, and it turns out my doctor also views it as a mixed bag. My m-band disappeared last month, which I was excited about. At that point, it had been six months since my car-t, and I was excited that my engineered cells were still alive and doing their job. I still had a faint showing of IGG lambda on the Immunofixation Electrophoresis test, which hinted that there is still myeloma in me.
March’s labs continued to show the faint hint of myeloma in my blood, even though my m band had zeroed out. So that was not the best news. I had a meeting with my specialist shortly after the blood test results. He was saying that most people would have zeroed out completely by now if they were going too. Having a smidge of protein on the immunofixation electrophoresis at this point is concerning for him. He did concede that there have been cases of people taking longer than 7 months post car-t (which is where I’m now) to have normal blood.
We are going to do a bone marrow biopsy and do some cancer counting on a cellular level to get a better idea of what’s going on.
So I have mixed feelings about it all. The cancer is under control but likely is still there. The doctor is thinking about recommending bi-specifics shortly (pending bmb results) to try and put a boot on the cancer’s throat.
I’m trying not to jump to conclusions prematurely, since there is prior data saying that car-ts can still being doing their job, just slowly (?). It’s been nice not being on any treatment though, other than antibodies. So the thought of having to go back on something is not a welcome thought.
Hurmph…. The life of a person who has been touched by cancer…
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.
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.
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.
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 are my latest numbers. My numbers are pretty punched down. I am currently doing my labs mid-maintenance cycle, so I guess it’s not surprising. I was getting my labs done when I was told the doctor’s office needed them, but they just figured out that they had me doing it mid-cycle. I’ll be switching back to getting them done prior to the beginning of the cycle. Hopefully, my poor CBC can recover. I don’t think my HCT has ever been this low. I have Lambda myeloma (where I have too many Lambda light chains), so the rising ratio of Kappa is not a concern.
Carrots Over Cancer 