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.
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.
It’s been over 4 weeks since I had my T-cells collected. I find myself counting down the weeks, which I find a bit funny. Car-T has such great potential but can also have some nasty side effects. Maybe I’m just tired of dealing with cancer and would like to be done with it, or at least have a good long break from it.
My doctor was on vacation when my potential spine growth showed up in my heart MRI. That left me communicating with a nurse practitioner filling in for the doc. That was a bit of a challenge, having odd responses from her. Her choice of action was to wait for a month, when the team could review my scan in their monthly meeting.
Huh?!?
None of her suggestions made any sense to me, and I finally told her I wanted to talk with the myeloma doctor when he got back. It was funny timing because I was a few weeks into having my cells engineered. You have to be off treatment for about 3 weeks before the Car-T infusion. Did I want treatment for a week?
Fortunately, I feel like I have a very good myeloma doctor, and he called the day he got back and we discussed things. He said that things can show up on scans that aren’t actually there, and if there is something there, it’s so small, unless I have pain, just let the Car-T deal with it. He recommended not doing anything, which sounded good since I am not in pain.
For the most part I feel pretty good. I find myself wondering when I have a weird jab of pain. Is it cancer? Or is it just a weird jab of muscular pain?
It’s been about 3 months since my last infusion of chemo, and apparently it already wasn’t working at that point.
I am starting to notice little cancer clues for myself. When my cancer numbers went up recently, some of my hair started falling out. My hair started failing out over 5 years ago, before I was first diagnosed. So I think it’s a sign for me. In the last week, at times, I have been hit with some pretty good waves of fatigue and occasionally aren’t as hungry as I should be. I haven’t had a myeloma blood test in 6 weeks. I wonder how my numbers are?
I know potentially, I might get hammered by the Car-T. I think it’s a fine line between having too many cancer cells, and have the T cells go berserk, and not enough and the cells not activate efficiently.
I’m not letting any of it hold me down, it will be whatever it will be and I’ll get through it. I’m still staying active, walking, running, hiking and weightlifting. I’m still pounding nutrition. I find that eating whole real food is easy to eat, and I want to build myself up as much as possible before the Car-T gauntlet.
Mung beans oh mung beans. I love mung beans so much, that’s the title of the song I made up for them that I sing when I cook them (mainly to make my children roll their eyes).
This legume is a powerhouse that is a staple in Asia, and it definitely doesn’t get its recognition here in the West. To put it into perspective, I almost feel like it’s the corn or wheat of Asia, except it’s so much better for you.
You can make soups, deserts, noodles, snacks, and of course, bean sprouts, which is probably how most westerners eat them, maybe without knowing what they are.
Human cultivation of mung beans started about 4500 years ago in India. It is easy to cook, easily digestible and nutrient dense. All those traits are super important for all people and extremely important for people who are going through cancer.
In both Ayurvedic and Chinese medicine, mung beans are very cleansing and rejuvenating for the body and its organs. Who wouldn’t want that? They have been a constant companion on my health and cancer journey. I eat 1/2 of a cup of them every day.
This nutritional chart is for 3.5 ounces. 3.5 ounces is about half a cup. Talk about a nutritional powerhouse wrapped up in this tiny little legume. Protein, vitamins and minerals. It’s pretty ridiculous how good these are for you.
Just to remind you, 50 grams of protein is the recommended daily amount for an adult, and you can get more than half of that from less than half a cup.
My brother recently went to Thailand and sent me this picture because I’m such a mung bean fan. It is a desert made from mung beans. They look pretty awesome and quite different from a small green bean. Their use is only limited to a person’s imagination.
Here is my simple mung soup recipe (I do have a deluxe version as well).
Soak overnight 1/2 a cup of mung beans
Rinse well when ready to cook.
Add the mung beans to a pot with 2 cups of water.
Add a pinch of Asafoetida
Add a pinch of ground black pepper
Add 1/2 a teaspoon of each of cumin powder, coriander powder and turmeric powder (turmeric is anti-cancer, especially myeloma).
Chop and add half of a small onion
Grate and add one knuckle of ginger (two inches)
Stir in a teaspoon of coconut oil
Bring to a boil. Mung beans will be cooked when the beans start cracking open and are soft.
Add salt to taste
It’s pretty easy to make. I encourage you to try to incorporate these little wonders into your diet, and maybe they will do something wonderful for you.
I was eating some sauerkraut with my dinner last week. It’s part of my bacteria quest that I wrote about a little while ago. I was sitting there thinking to myself,
“Boy, this is great. I’m eating this food to help out my good bacteria population and maybe help heal my gut and who knows what else!”
Then an image popped into my head, of my grandmother canning up her soup in mason jars from years ago. I remember it taking heat to cause those lids to pop down and seal.
Hmmm….. heat kills bacteria 🤔. This store bought organic sauerkraut is from a sealed jar. Is there any other ways of sealing a jar other than from heat?
Probably not?
A quick internet search about sauerkraut and the sealing process. Son of a gun! Most store sold sauerkraut is pasteurized and thus killing off all the bacteria! Grrrrr….. I’ve been eating all this pickled cabbage without getting the benefit of the bacteria! The things you don’t know about until you do a little digging (or thinking).
Everyone is constantly scared about bacteria!
Fortunately, making sauerkraut is not very hard to do. I received a little birthday money as a gift and bought some sauerkraut making mason jar lids (stainless steel, I hate plastic, I avoid it as much as possible). I started channeling my inner Ukrainian.
Yukon loves cabbage! He was quite excited about the process and quickly gobbled up any cabbage spills.
You just have to chop up the cabbage. Add a tablespoon of salt per 2 pounds of cabbage. Massage it in a bowl until it’s soft, and the juices are released. Put it all in a jar, with all the cabbage under the fluid (our kit has a spring to hold it down), and in a month, you have fresh sauerkraut full of good BACTERIA!
The only problem is I have to wait a month for it to be ready. But I suppose, if that’s one of my complaints, I’m doing alright.
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 was on my way out the door from Stanford a few weeks ago, and I was given this document about nutrition. I must confess, I rolled my eyes a bit and said sarcastically, “this ought to be good”.
To be fair, the nutritional advice that I got from my regular provider is “eat a bunch of doughnuts to gain some weight”. Also, during my transplant, I don’t know how many times I was told to eat ice cream and drink gatorade (which I didn’t do). So, I was expecting more of the same advice as I was on my way out.
I started reading and my jaw hit the floor in shock. I told my wife, “Wow, this is actually really good”. It’s so good, that I wanted to share it with you.
It’s solid advice whether you have cancer or you want to avoid getting cancer (or other chronic illnesses). I feel if all Americans adopted this diet, 75% of illnesses would go away or be prevented automatically.
One of my favorite lines from it is, “At least 2/3 of your plate should be comprised of fruits, vegetables, minimally processed grains, and beans”. I think most people’s plates are the opposite or worse. Observe what your plate looks like at your next meal.
Hot off the press, my latest numbers. Not much new. Although, my ratio of Lambda and Kappa finally are at a normal ratio, which it’s been awhile since that happened. Things do look pretty good though, despite the weekly chemo hammerings.
I’m marching towards high dose chemo with stem cell rescue (SCT) at Stanford, with collection at the end of this month. High dose chemo and stem cells infused back around April 10th. I feel pretty grateful that I’ve been referred to them for this procedure.
My last zap of chemo is on March 11. My self-imposed training regiment begins after that. I want to be in high gear physically and mentally. My goal is to restore and revitalize my cells and organs as much as possible prior to collection.
I have a meeting with two Stanford nutritionists tomorrow, I hope I learn something. The last time I had a meeting with a nutritionist, I was teaching them things. “Oh wow! I didn’t know that”, they said. As I’ve mentioned previously, I’m pretty passionate about nutrition.
But, I would like to point out, because sometimes I feel like I’m on a box preaching about nutrition, with no one listening. I feel like most people, if not all, would say Stanford is pretty top notch, as far as health care. They are making a point about how important nutrition is while you go through this procedure.
I’ve known people who have gone through medical procedures, and they’ve said to me that they want to eat really healthy and well, so they recover quickly. I find it funny, how it doesn’t compute with them about eating good food all the time, and they go back to eating garbage food after they’ve healed.
I’ll get back up on my box and say it matters all the time….
(And I suppose they mostly work for chemotherapy and life in general.)
It’s one of my goals to write more practical every day posts and I have a bunch of them in my head. Here is the start of hopefully a good long line of helpful things for people going through it.
I had 10 days of radiation treatment to my pelvis and sacrum area, years ago. There are drug options for side effects, but I always prefer to do it naturally as much as possible, since they generally don’t have additional negative side effects. Here are some (hopefully) helpful tips.
Constipation:
When I think of unusual constipation, the first thing I think of is psyllium husks. Nothing but 100% pure fiber. (I use Anthony’s organic psyllium husk, from Amazon) Mix 1-2 tablespoons with a full glass of warm water, stir and drink it down. Usually within a few hours, your symptom will be relieved. You can use a tablespoon of psyllium husks with a glass of water daily if you know you’re going to be challenged.
You can combat normal constipation by just drinking enough fluids a day. I personally start my day by drinking 24oz of water and rub my kidneys. I’m always shocked to hear how little some people drink through the day. Your pee color will tell you if you are drinking enough. If it’s not light yellow or clear, DRINK MORE!
Diarrhea:
Try the BRAT diet, which stands for bananas, rice, apple and toast. I definitely had some bowls of brown rice and bananas when my intestines were getting hit by radiation on the way to my bones. Coconut oil or shredded coconut can also help take care of diarrhea.
Coconut oil or ghee topically can help tremendously with a sore butt from all the trips to the bathroom.
Dehydration:
The World Health Organization fluid replacement electrolyte solution is 1/2 tsp of salt, 3/4 tsp baking soda, a cup of fruit juice, mixed with 1 liter of water.
Obviously water is also important to drink and mineral water is also helpful (especially if your stomach is queasy).
Dehydration will happen from either the diarrhea or vomiting. Make sure to stay on top of your hydration! Try to drink a 8oz cup, per trip to the bathroom (diarrhea). Don’t start replenishing fluids from throwing up until you can keep them down.
Fatigue:
Exercise exercise exercise. It’s hard to get up and move your body sometimes, but it does help out tremendously. Keep in mind that you are going through a lot and not to push too hard or too fast. Just walking every day can be helpful. Give yourself permission to rest and get some help when you need it.
Dry skin/burns:
I’ll start with, Do Not put oil or lotion on your skin in areas that are actively being radiated! What until your treatment is complete. Oil with radiation will cook your skin and burn you, Kentucky fried human.
Make sure to be your own advocate for shielding your other body parts that don’t need to be radiated. It doesn’t hurt to make sure you get the best care/protection possible.
I used coconut oil and Vitamin E on my skin. You can just get Vitamin E capsules and break them open. Vitamin A cream is also supposed to be very helpful (I haven’t tried it though). It definitely took awhile for my skin to recover fully. Keep at it.
Blood counts:
As you know by now, I’m huge on nutritional diet. Vegetables can have an amazing effect on the quality of building blocks your body uses. Fresh vegetable juice gives you a large quantity of vegetables in a less filling application. Juice carrot, beet, green apple, ginger, turmeric, greens, celery, pomegranate and sprouts. Any combination works. Vegetable juice can also rejuvenate and cleanse your organs and combat constipation. Feed your blood!
Nausea:
I use ginger for this. I cook with it, I make tea with it. I put it in my vegetable juice. It works super well for me. Try have some ginger tea. Take 1/2-1 tsp of ginger powder and boiling water and pour it into a cup. Stir it a little while you wait for it to cool and that’s it. You can also take fresh ginger, cut it up into pieces and put it into a pot and bring to a boil. Either work. Try it.
Eating bland food or dry food can also be helpful. Not all nausea is the same, sometimes you just have to experiment with it.
Other things:
It is said outside of conventional medicine that a low glycemic diet while undergoing radiation therapy can make a huge difference in effectiveness. If you’re going to do it, you might as well try and make it as effective as possible. Sugar increases growth factor IGF-1, which suppresses cancer cell death. You have nothing to lose and everything to gain by trying it, why wouldn’t you?
Again outside of conventional medicine, Ashwagandha. Ashwagandha is said to make cancer cells more sensitive to radiation and protect healthy cells. You do have to take ashwagandha with at least 5% withanolides. There is a lot of ashwagandha out there, withanolides are the active compounds of ashwagandha. It’s not worth taking without the 5%. I did not use it while I did radiation, only because I didn’t know about it. Ask your doctor and make your own decision. I have taken lots of ashwagandha at different times in the past years. It does help calm and can help you sleep. It had no negative effect on the chemo I was taking.
I’m sorry, I debated with myself about posting more about this. Part of me doesn’t want to talk much about this anymore, but there was a thought I had, that I forgot to put in first time. So here we go…
82 grams of sugar per serving still just blows my mind. First, I would like to establish that sugar is not a main food item. Sugar is in the category of flavor enhancer, improver, almost like a spice but not quite. It’s something to add to something else to make it taste better. No one sits down with a bowl of sugar and just eats it.
Ok, now let’s imagine that we have a drink and we replace the 20 teaspoons of sugar with 20 spoons of something else.
First, let’s replace the sugar with 20 spoons of salt. Could you even find a person who would drink something with 20 spoons of salt? What would happen? According to Wikipedia: “Eventually the blood’s sodium concentration rises to toxic levels, removing water from cells and interfering with nerve conduction, ultimately producing fatal seizure and cardiacarrhythmia.”
Ok, that doesn’t sound very good!
Let use something that is good for you. How about Vitamin C? Our bodies don’t produce it naturally, so we need an external source. 82 grams, huh……ok, a person’s body can ingest about 10 to 12 grams, without negative effect. So about 1/8 of 82. Once you go over 10 to 12 grams, you experience diarrhea and vomiting. I’m not sure what would happen if you drank 82 grams of vitamin C in one go?
Certainly they have high dose IV vitamin C which bypasses your gut. I’ve had it myself. Without a properly trained doctor, that starts around 50 grams and ramps you up to the 80 level, you can die from it.
82 grams of cinnamon? 82 grams of oregano? 82 grams of cumin? 82 grams of Reishi? 82 grams of Chili pepper? Do you see my point? How insane 82 grams of sugar in a drink is? People only do it because it tastes good, but I promise you there are health consequences, just like ingesting 82 grams of anything else.
Carrots Over Cancer 