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’ve finally reached Car-T infusion day. I must say that this process feels a lot like a stem cell transplant. The 3 days of T-cell depleting chemo has left me quite nauseous, and I’m on a steady cycle of anti-nausea drugs to combat it. They are helping, but it is also making me sleepy on top of being fatigued and brain foggy from the chemo. It’s a good time to beat me at a game, since I’m a bit scrabbled.
My picc line is feeling better and not so sore, which is nice. At times, I do feel a little cyborg-ish having this thing sticking out of my arm. I’m glad I have it though, to save me from the constant needling.
I’m hoping and praying everything goes well and easily, and this really wipes out the myeloma. Crossing my fingers 🤞🏼.
(I wonder where crossing your fingers for good luck came from?)
I wanted to share my assessment of my Stem Cell Transplant Strategy. Because at times I do things that are are out of the box and not part of the standard of care for cancer, I find myself constantly assessing and analyzing things I do.
I didn’t do anything that unusual for my stem cell transplant (well at least for me, I’m probably unusual for some people), but I wanted to write down how I think things went. Just as a quick reminder, I focused on diet, exercise and overall wellbeing.
I do think that the concept of the SCT procedure is flawed to begin. It is so destructive and the results seem to be hit or miss. I think we are in a bit of a transition period where Car-T treatments are slowly starting to replace SCT. But at the same time, I do know people that a SCT worked really well for them.
Overall, I don’t think my stem cell transplant was that successful. But maybe that was beyond my control. I do know people who have gone through the procedure and it has been a complete flub for them, with the myeloma coming back a month after the procedure. So I did better than that, but I did not achieve a long or durable response. But, I’m also playing the myeloma game on hard mode with my myeloma genetics, so it’s hard to compare between people sometimes.
So personally, I went into the procedure in pretty good shape, with excellent nutrition and fitness level. My blood counts stayed decent considering the bomb going off. I was not hospitalized and did not experience bad side effects. For the most part, it wasn’t that big of a deal (other than having to move to Stanford and all the time). When I was leaving Stanford, the attending physician told me I did better than most.
One could say everything went well for my just because of my age, but I’ve also seen similarly age people have a hard time. I will never know for sure, but I also don’t believe in randomness.
So my strategy seemed to have worked for getting me through and recovering from the transplant quite well, but it didn’t seem to do much for helping control the myeloma (?). It’s hard to say definitively. With my myeloma numbers returning to a crawl at the moment, and being off of chemo for more than 3 months now, something is controlling it to a degree.
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.
It’s something that I think of quite frequently these days. I’m mean, doctors have seen some horrific things due to bacteria, so a bunch of it is very justified. But I feel bacteria is not fully understood, and medicine just takes the approach that they normally do, and nuke the heck out of it.
I’ve thought vaguely about bacteria for a while, but I really started contemplating about it at the beginning of the year. My dog Yukon had a medical procedure, and they put him on antibiotics afterward. As I mentioned in a few other posts, I had been working with the garden soil, which involved a lot of manure.
Yukon does not eat manure, as some dogs do. I was spreading it around on the ornamental plants in the front yard, where he spends a lot of his time. He had been taking antibiotics for about 7 days. All of a sudden, he started chowing down on the manure.
“That’s weird” I said to my wife.
I started thinking about, when he was a puppy, he had an infection and the vet put him on antibiotics. He snacked on some manure while we would go hiking, that time as well. Those are the only times he has eaten manure. He ignores it the rest of the time. And believe me, I still spread it around a lot.
What are his animal instincts telling him?
I have a few cancer theories, and gut bacteria being one of them. Cancer develops from a dysfunctional immune system. Everyone has cancer cells, but most people’s immune systems wipe it out. Your immune system comes from your gut. Wouldn’t it be logical that people who have cancer (or other health problems) have a significant problem with their gut?
Our gut should be like healthy garden soil. Full of life and diversity. I do believe that most intestinal troubles, weird unexplained rashes, chronic inflammation and maybe autoimmune diseases are all from your gut being out of wack.
I know I personally was exposed to way too many antibiotics, as well as a lot of other environmental toxins. I felt like any time I went to the doctor with any sickness, I was prescribed antibiotics. “It’s most likely a virus, but take these antibiotics just in case.” It took me too long to stop and think about the side consequences of taking so many.
I also find it curious, that veterinarians seem to be very pro probiotics, especially after a course of antibiotics, and will even prescribe probiotics for an animal.
Try to ask a human doctor, especially an oncologist about probiotics, and in my experience, they put on their politician face and dodge the question or try and pass the buck. It’s very frustrating.
To be fair, there are some doctors who are currently studying gut bacteria and the system on a whole. It also seems like the studies are picking up steam. There are even some studies from hundreds of years old. Ever hear of yellow soup from ancient Chinese medicine? It’s worth a google search and read, if you aren’t squeamish (dogs are definitely not squeamish about it).
I came across a study earlier in the year, unfortunately I can’t find it anymore. It was talking about the relationship of a healthier gut micro biome and people achieving MRD negative status from a stem cell transplant. People who had a better gut were more likely to be MRD negative. After reading that, I started eating probiotics foods prior to my transplant and started eating them again as soon as it was safe for me to do so afterwards.
While trying to find the previously mentioned study, I came across this one. Memorial Sloan Kettering Cancer Center wrote this piece, “Fecal Transplants Boost Helpful Microbiota for Stem Cell Transplant Patients”. Basically, if you don’t want to read it, people who had a more diverse micro biome recovered better. It also said people who had an allogeneic bone marrow transplant (donor stem cells), and had a fecal transplant, didn’t suffer as much of graft vs host disease.
That’s huge!
I actually had a chair next to a guy one day at Stanford, who had graft vs host disease from an allogeneic transplant. As I mentioned, they only have “privacy curtains” between the chairs, that don’t really provide much privacy. I saw the guy’s pictures of his rash. I went back to the apartment that day and read up on graft vs host. I could tell he had it severe, and his odds of being alive in the next six months we’re not very high.
Would a fecal transplant from himself, collected prior, saved his life? Possibly. If it was an option for myself, although I did well, and I had an autologous transplant, I would have given it a shot just to increase my odds.
Sometimes, I wonder whether a drug works for you or not, or how well it works for you depends on your bacteria in your gut? Chemotherapy eventually is no longer effective for you and they have to switch to another kind. Is that because your body/cancer just got used to the chemo? Or is it because the bacteria in your gut that helps process it is no longer viable or around? It would be a fascinating study.
But I don’t believe it’s as simple as popping in a bunch of probiotics.
“Take this pill, with 6 ka-gillion beneficial bacteria per pill, and all your woes will be cured!”
I believe you can have too much of certain types of good bacteria in you as well. I also feel, a hunch, there are things like micro bacteria, like micro nutrients, that are supposed to exist in your gut. Too much of any bacteria including good ones, don’t leave room for the lesser bacteria.
I don’t know about you, but my neutrophils are high enough, so I’m going to keep imputing good bacteria from probiotic sources such as yogurt, sauerkraut, beet kvass and whatever else I come across (diversity!) and pop an occasional probiotic pill. Couple that with continuing to eat lots of vegetables for the bacteria to thrive, let’s see what can happen. The bacteria battle is constantly happening within me, between the killing (chemo) and the replenishing.
Wouldn’t that be something. The cure for so many diseases, including cancer, would be a bacteria transfer from someone with a healthy intact gut (maybe from someone from 200 years ago or an Amish person). Something that is free and flushed away every day. (I’m not advising you to DIY).
Now that’s something that would keep up pharmaceutical companies at night!
I had my first infusion of maintenance carfilzomib and pills of cytoxan the other day. I had them both prior to my transplant, so my body has prior experience with them (or so I thought), so I didn’t think it was going to be much of a deal. I was a bit tired, so I went to bed a little early that evening.
I got into bed and tried to get comfy. My wife came to bed about an hour later. I was still awake and asked for the thermometer since I was feeling a bit cold. We are going through a heat wave and it was 95 degrees outside, and we don’t have an AC, so it was a little unusual.
98.9 was the reading.
I laid there for a bit longer, pulling up the sheet to my neck. I was starting to shake a bit. I got a fever when I first started carfilzomib and cytoxan months ago, so I guessed I was going through it again since it had been awhile.
99.8 at the next check.
I was really starting to shake, so we added another blanket. Time went by, and I added the comforter. I had all my winter blankets on and it was still quite hot outside. I took a tylenol trying to get my shaking to knock it off, so I could sleep.
102.6 the thermometer read a little while later.
Everyone who has been on chemotherapy knows 101.4 is that magic number when you call the on call nurse and most likely head to the ER. I didn’t want to call, since I had been through this before with these drugs and talked about it with the oncologist last time. I knew they would have dragged me down t the ER to get checked. They (and I as well) are very concerned about infections, but I knew this was just a chemo reaction.
Phase 2 of my reaction was about to begin.
I feel like a lot of people have conversations with themselves when throwing up is involved. Sometimes the buildup lasts for quite a while. “I don’t want to throw up, maybe if I lay this way or that way, I won’t puke.” I didn’t have any buildup or warning.
For a bit of dramatic effect, I’ll narrate the conversation between my body and head.
“Jothi! Get up right now!
“Why?”
“We are going to throw up right now!”
“Really? I don’t really feel nauseous.”
“We are doing this right now! Make a run for it.”
I went to the bathroom and almost immediately threw up. I found it very funny and ironic. I didn’t throw up at all during my transplant or at all during any of my previous times on full strength chemo, and I puked with “maintenance”. Go figure.
I got back into bed and started to shiver again. In hindsight, that probably was not a good omen for my stomach and esophagus. Half an hour later, I asked my wife for a zofran to try and settle things down. Twenty seconds later, my body said:
“Let’s do this again.”
“Are you serious!? We just did that!”
I just got into the bathroom again, and out came the remainder, and it felt like my intestines and liver as well. I got back into bed, with my shakes gone now, and promptly fell asleep for the rest of the night.
My saint of a wife volunteered to dispose of my two rounds of half digested dinner. I only made it to the garbage can both times, so it was very kind of her.
When I woke up in the morning, I didn’t have any fever or vomiting. I spent the day replenishing my fluids.
It’s only been about 4 months since I was on carfilzomib and cytoxan, but I forgot all my do’s and don’ts for those drugs. Maybe I should write a post on it, so I can read it.
But jeez, my torso was sore! I haven’t thrown up at all, probably in nine years. I guess you must have special puking muscles, and mine weren’t at all developed. I wonder if they have a work-out for that?
“For the low low price of $19.99, you can get our puking muscle training program. Strengthen your back muscles, side muscles and abdomen. We guarantee you can puke 5 times in a row without getting sore, or your money back!”
It is test and doctor visit time, post transplant, for me. I had my meeting with my new myeloma specialist today. My old one left to go work for a drug company, so I had to get a new one, which was a bit of a challenge to get, surprisingly.
In my post transplant meetings with Stanford, the doctor kept repeatedly recommending I go on Revlimid for maintenance. In all my meetings with that doctor, I always had the feeling she would rather be off working on her projects, rather than working with patients. “Revlimid is what is normally done post transplant.” Her recommendation of revlimid, showed me she didn’t actually take the time to read my file.
To be fair, she is a transplant doctor and not an oncologist or myeloma doctor, but still, it would have been nice for a little effort on her part.
I finally had to say, “My case is not the typical myeloma case. I’m four years into myeloma and I’m just doing a transplant now. I’m already refractory to revlimid.”
“Oh really!?” She replied, looking flustered, rapidly clicking on her computer, and started trying to recover. “Let me review your case with one of my colleagues and I’ll get back to you.”
I tell you, it’s hard enough dealing with cancer without trying to manage your doctors!
Hence, my reason for paying out of pocket for a myeloma specialist at a different medical institution. I’m really glad I did. This is only my second meeting with a specialist, a year apart, and I can tell their myeloma knowledge is significantly better than my other doctors.
This new specialist told me almost right off the bat, that he is the leader in MRD (minimal residual disease) research. A mrd test is the best test you can have done for blood cancers, looking for remaining cancer cells. I’ve been pestering my regular oncologist for this test and he finally ran it with my last bone marrow sample. I’ve been waiting and waiting for the result, and I guess the specialist had it.
3 myeloma cells in 2,600,000 normal cells. My goal was zero detectable cells (MRD negative or MRD zero), I might as well swing for the fences. Second best is 1 in 1,000,000. I almost hit 1 in a million, just missed the mark. Anyhow, he was quite pleased with the numbers. His goal is to get me to MRD zero.
Although, I was thinking about the MRD test. It is only a sample of the marrow from a specific section of your bone where they pull the marrow from. So you can have different values at different spots in your bones. MRD positive in your left hip, MRD negative in your right. So I guess the MRD result is essentially flawed from the beginning. But I suppose it gives the best idea of what’s generally going on, since blood tests aren’t this sensitive.
I was thinking of the analogy of a city. If I had a city with a population of 2.6 million, and three of those people were crappy people, I would be doing pretty well. My city used to have a lot more crappy people in it, so I’m glad they are gone, but I still have work to do.
My regular oncologist recommended using carfilzomib as maintenance. I was on it prior to transplant, so that makes sense to me. The specialist recommended a higher dose, saying what was recommended wasn’t going to get it done. He also added cytoxan pills, I was also on that prior to transplant, which I’m not too excited about. It’s not an intelligent drug, and it just kills everything. I guess it’s all the lesser of two evils, maintenance versus active myeloma.
I think I’m going to be a bit more beat up from this maintenance than I was originally thinking, which is a bit of a bummer for me. Hopefully we can lessen the drugs over time….
I’m at day +77 from my transplant today. I had blood tests and a bone marrow biopsy done last week. We are going to talk with the Dr. today to go over the results. It will be interesting to see how well the treatment worked.
My hair is starting to make a bit of a comeback. My head was getting fuzzy, but it looked like a bunch of my hair turned white or gray. I decided it was all chemo hair and shaved it all off again. It’s fuzzy again after a week and has my darker color this time, so I think it’s about to take off (my hair typically grows fast).
My facial hair went through a weird cycle. I lost my hair on my neck, cheeks, my chin and the left part of my lip. It looked like I had a bad biker mustache. Now around my mouth, it’s coming back with a vengeance. Making up for lost time? Especially my left part of my lip, the hair is thicker than it was before and growing like it’s on steroids. Hopefully the right side of my lip catches up. Maybe I can grow a good curly mustache now?
I had a simple strategy for my stem cell transplant. I thought about the procedure for a little while, and this is what made sense to me. For me, it’s all about increasing odds and outcomes. I viewed this transplant as a major ordeal for the body. You wouldn’t get off your sofa and do a decathlon! Why would it make sense to get off your sofa and do a transplant? I went into transplant training.
The procedure in its essence is killing off your bone marrow and therefore your blood as well. Trying to wipe the slate clean. It is regrown from stem cells that were collected from yourself previously.
My step one, thinking about it logically, I wanted to have the highest quality possible of stem cells that were going to be collected. After all, this little bag of stem cells is what was going to regrown all my marrow.
I’m a huge plant person. Growing plants isn’t complicated. Give them the nutrients, light and water they need in the right amount and they thrive. Humans aren’t much different.
I wanted to spam myself with nutrition. I tend to do that all the time, but I made an extra effort. Your food is your cell’s building blocks. Healthy grains, berries, a rainbow of vegetables, lentils, healthy proteins and oils. Diversity is the key.
(👈🏼 Bitter melon is great for detoxing your liver, yes, it’s very bitter).
Second, I wanted to detox my body as much as I could, from all the chemo and drugs I had done. I mainly did this using a little personal infrared sauna. I sat in the sauna daily at 170 degrees and let my body sweat out the junk it could. Besides the big nutritional benefit of fresh vegetable juice, it also detoxes your organs, particularly the kidneys, liver and intestines.
Thirdly, I increased my exercise regiment. Walking, running, weight lifting and exercise biking. I also made it a priority to go hiking for miles, as much as I had time for. Sweating and heavy breathing, helped detox. Increased breathing, increased oxygen for my cells. Plus, hiking in nature helped my mental facilities and forest bathing can have a positive effect on cells.
Fourthly, I needed to work on my mental game. I increased my breathing, meditation and Qi gong. I felt it was important to have a level calm head, so I could overcome the mental lows that I knew were coming up. I went over breathing techniques in my How to stop freaking out post.
Meditation is the best way to keep control of your mind. Early in my cancer journey, for some reason, I was resistant to meditation. I kept hearing how beneficial it was, and I eventually overcame my resistance. It was the single biggest reason for my mental U-turn out of cancer negativity. I highly recommend learning a simple practice and doing it daily. Qi gong is kind of like a walking meditation (I’m planning a series of posts on Qi gong upcoming).
I also feel that the power of music is underestimated. I worked on creating a playlist of uplifting and positive songs that I could listen to. When you’re down in the dumps, sometimes music can help flip your script. I ended up with a wide variety of genres that clicked with me. I used it to get my positive vibe up, especially while cooking (didn’t you know food tastes better if you dance while it’s cooked?) Although, during the transplant, I mostly listened to my favorite pianists, Ludovico Einaudi and Helen Jane Long (Ludovico’s songs Ascent Day 1 and Nuvole Bianche are epic).
So these were my pre transplant regiment. During transplant, I once more wanted to keep up as much as I could on the nutrition. This was the building blocks of my new cells. I wanted to create good tissue and give my cells what they need to thrive. I was really excited when they said I could drink fresh vegetable juice, I drank it daily.
Besides the vegetable juice, it was also imperative for me to keep up on my fluids. Drinking was also a challenge. I drank water, coconut water and bubbly mineral water for the minerals and it helped with the nausea. I also asked for if fluids every day whether I needed them or not. Certainly high dose chemo is highly toxic itself and the fallout from it is a lot of dead cells. I wanted to flush things out as much as possible once the chemo was done doing its job. You have to protect your kidneys!
(A juice man created by my daughter 👉🏻)
Having my GI tract destroyed was a challenge for wanting to eat anything. I mostly ate my normal breakfast just in a smaller portion. Mung beans and vegetables for lunch and whatever I could get down for dinner (by dinner I usually wasn’t interested in eating at all). I do feel like having the wholesome diet helped a lot with not having extreme nausea and keeping my blood and electrolytes up.
It was also important for me to keep moving every day and get exercise through it. After breakfast, I would do my Qi gong exercises. I would then take a rest and then no matter how tired I was, I’d scrape myself off the sofa and go walking in the park every day. I do believe movement is life and if you want to keep living, keep moving.
I’ve gone back to my pre transplant regiment except for the sauna, which I’m not allowed to do until day +60. I have random pain in some of my tissue, which can be a sign of toxicity. I’m looking forward to some good sweating. My GI tract went back to some semblance of “normal” at around day +27. The doctors and nurses keep telling me how good my blood numbers are. I feel like I got through it easier than some people, from reading their stories.
This is my strategy, I guess we will see where the chips end up. If the myeloma is going to thrive through all this, it’s going to have to do it eating broccoli.
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)
Carrots Over Cancer 