Tag: strategy

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A Reason For Hope

Jothi

It’s been a pretty crazy last couple of months in my myeloma world. My March labs were a bit iffy. Things looked pretty good, but I still had a hint of myeloma showing up. We were going to do a bone marrow biopsy, but that never happened due to something on the doctor’s end.

I went into April’s labs expecting more of the same, crossing my fingers for zeros. Most of my labs came back in the normal time frame, light chains still normal or low. My immunofixation electrophoresis (which is a myeloma blood test) didn’t come back in the normal time frame.

“What’s going on?” I asked myself. “Where are the results?”

The days went by, and they didn’t result. Finally, half of it resulted late in the week, and it showed a reading of my m-band of .2. Previously I was at zero, so this was not good.

The second part of the test came back that afternoon, and I didn’t think it was going to show anything new, so I casually opened it and looked at it.

“Positive for IGM Kappa”.

“WHAT?!?”

My version of myeloma is IGG Lambda. Why is it showing IGM Kappa?

Did the labs mix up my blood with someone else’s blood? I read the notes from the lab, and it says they ran the blood twice from two different vials to double check due to my igg lambda history. It was correct.

A quick search, and I found out it is possible to have double light chain myeloma. It’s like having myeloma twice. It’s very rare, and in only 1% of people with myeloma.

“Face-slap”

What did I do?

After a few moments, I turned on some snappy music and started to dance.

Can I dance?

No

This is really bad news. Why am I dancing?

Because at this point, I said, “Seriously f*** you cancer.” “If you are going to be so bent on killing me, we are going to do things my way. I won’t let you drag me down. I’m going to keep living until I’m not.”

That’s why I’m dancing.

Normally, I look at my labs with my wife, but I didn’t think it was going to be anything, so she wasn’t there when I opened it. I had to tell her the news. It was like placing a 500 pound sack on her shoulders. Being the loved one of someone who has cancer has to be one of the hardest things in the world to endure. I think most people don’t realize this, and it is greatly underacknowledged what they go through. It’s not the same as having cancer, but I think it’s up there on the toughness scale.

I expected a phone call from my doctor, but it never came.

I just kept living my life as much as like normal as I could for the next month. Another round of ivig came the next month, and another round of blood tests.

The timing of the return of the tests was similar. Light chains came first.

Light Chains – Low / Ratio – normal

I had to wait another day and a half until my protein electrophoresis came back. My wife and I nervously opened the first one. How much had things progressed in a month, I wondered?

M-band – zero

“Wow”, we said.

We held our breath on the second part of the result as we opened it since this was the one that showed IGM Kappa (or IGG Lambda).

Normal – no trace of IGM IGA IGG kappa or lambda.

My wife and I looked at each other speechless. We weren’t quite sure what to say. One, because of my previous month’s crappy labs, and second, for this being the first time in 6 years that I’ve had a normal result.

I had a meeting with my myeloma specialist a few days later. Zoom kicked on and the doctor first thing looks at me and says “you know, Jothi, I’ve never met anyone like you.”

“Umm thanks?”

He went on to talk about the IGM kappa showing up.

“I called up the lab director to make sure there was no mistake.”

“It’s unheard of someone developing a second mutation from a car-t. Maybe the cancer mutated with it’s dying breath.”

“It’s uncommon for a person to zero out this far out from a car-t.” (I was at 9.5 months post car-t)

“It’s also unheard of, a month later, the new cancer mutation being wiped out. There is no trace of myeloma in your blood. I’ve never seen this before, and I have no explanation.”

A few months ago, they were talking about putting me on treatment again. They wanted a bone marrow biopsy first, which never happened. The doctor is now throwing around the “C” word (cured), which I’ve personally never heard one say before. I’m left asking myself if something special just happened?

Now being a statical anomaly, I’m left wondering why with no answers. Did my car-t strategy of supporting my t-cells have an effect?

It’s too early to tell anything, and I know full well things can flip back the other way around quickly. I try not to get too low when bad things happen, the same goes for trying not to get too high when things go right. I still need a bone marrow biopsy to check things out on a cellular level. Without that being zero, this could be just a blip in the road. Even if it is zero, I need to be zero and maintain that for a few years before I can relax and let some breath out. Cancer is just that unpredictable and volatile.

My point with this post is not to toot my own horn or have people congratulate me. I’ve been playing the cancer game for a number of years now. I’ve been around a lot of people challenged by cancer, and I know firsthand how dire things can be at times and frankly have periods of hopelessness.

Obviously, I’m thrilled with the ways things have gone in the past month personally. I would be equally thrilled if my tale could lift someone else up and give them a reason for hope. That unexpected things can and do happen if you just keep dancing.

Blog

My CAR-T Strategy

Jothi

Note: I started writing this prior to my Car-T procedure. I didn’t get it done prior, and I wanted to document the procedure as I was going through it, so this post got tabled until afterwards. So the post might be written slightly funny.

Here you go…

When I think about the Car-T treatment, a few things come to mind. I’ve come up with two main points that I’m going to focus on.

The first one would be actually getting through the procedure and the side effects from it. I’m going to follow the same strategy that I employed for my SCT. I can’t control what side effect I’m going to have, but I can be as strong and as healthy as I can be to withstand the treatment.

I’m not going to go too much into it since I’ve already written about it. I’m eating tons of vegetables and lentils so my body can have what it needs to repair and recover.

I’m getting as much exercise as I can. I have a few physical bumps and bruises from a slip from when I was hiking. That’s limited me more than I would like, so I’m not doing as well in this aspect as I would like to be.

Lastly, I’m trying to shore up my mental aspects using Qi gong and meditation. With all the potential issues that can come up, it can be mentally taxing. This process has already been going on for 2 months, with all the doctor appointments, tests, cell collection and driving in between.

I’m at the point of “just get on with it already” and thankfully that’s where I’m finally at. Sometimes I do find myself teetering between being positive and negative. So I’ve been utilizing meditation to re-center myself.

The second aspect of this procedure is the Car-T cells themselves. The cells have been edited to find and destroy the myeloma cells. But the biggest problem with the edited T cells, is they get exhausted from doing this after a certain point.

Clearly, science hasn’t quite figured out manipulating cells, because body-made cells don’t have this issue as it will just replace the worn out cells.

There have been a few articles, that I know of, written about studies talking about reversing T-cell exhaustion. Two articles that I’m going to cite were written by Healthtree for Myeloma, which is a great myeloma resource if you aren’t currently using it.

Reversing T-cell exhaustion using antioxidants

How your T-cells become exhausted in fighting cancer

Essentially, again eating well, especially eating food that are high in antioxidants can give your engineered cells new life and help them replicate.

So where can I get a high concentration of antioxidants from?

In 2010, the National Library of Medicine came out with a study of various food sources and the levels of antioxidants that were in them. They found that plant-based foods are generally higher in antioxidant content than animal-based and mixed food products, with spices and herbs having the highest concentrations of all food types. It’s a fascinating read, even if you only look at their charts.

Source NIH Nutr J. 2010 Jan 22;9:3. doi: 10.1186/1475-2891-9-3. PMID: 20096093; PMCID: PMC2841576.

So post Car-T, I’m making sure to eat a wide variety of whole plant based foods that are quite flavorful because of an assortment of herbs and spices. I’m doing this to give my body a wide variety of antioxidants with the hope of supporting my T cells to do their best job. Besides the antioxidants, my body is receiving a tremendous amount of nutrition for further support.

None of this is guaranteed for success, but I feel like it’s giving me the best odds for success. I don’t feel as sharp mentally 🥴 as I normally do (side effect of Car-T), so I think I’ll end this post here. Maybe at some point I’ll come back and edit it when I’m fully functional again.

Blog

My SCT Strategy Assessment

Jothi

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.

I’ll keep tinkering and experimenting.

Blog

MRD Zero Sauce

Jothi

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.

Blog

The Waiting Game

Jothi

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.

Blog

CAR-T

Jothi

I had a few more blood tests and they confirmed that I have relapsed. The myeloma is starting to party inside of me. I was surprised by how quick my light chains and m-band ratcheted up on the first blood test. Things have slowed down a bit. Seems like I’m going up about 6-8 points a week with my light chains. Which is funny, the myeloma grew at a faster rate when I was on chemo (12 points a week) versus not being on it. (I did light chain math 🧮)

As you can imagine, I’ve been having a lot of doctor conversations and from that lots of tests. I am definitely starting to have medical fatigue from it all.

I decided to sign up for Car-t, which is genetically engineering my T cells to go after the myeloma. I was referred to UCSF. My myeloma specialist is from UCSF, so he instantly told my oncologist he wanted to take me on, which was nice for a change.

I decided to go with Carvykti Car-t. I had two choices of Car-t products. One that didn’t have many side effects but didn’t work as well, or Carvykti which works a lot better against the cancer but has a bigger potential for some nasty side effects.

I find that cancer is full of impossible choices, with a lot of the time having to choose between the lesser of evils. I do feel optimistic about Car-t therapy though. In my opinion, I think it’s probably the best treatment option for myeloma out there. I felt I had to swing for the fences with Carvykti. I’m starting to feel like I’m running out of treatment options. My specialist said he has some patients that are 5+ years myeloma free from Car-t and it’s starting to look like a cure for them.

I had a Pet scan this morning to look for cancer lesions. The myeloma specialist said if it was all clear that I could potentially not have to do any bridging chemo between from when I have my cells collected and infusion time, which is about a month. It came back as I’m writing this and it is all clear! Yay for exercise, meditation, carrots, mung beans and broccoli (or maybe just luck)!

I had my last chemo infusion 5 weeks ago. I’m having my T-cells collect on July 8, and it’s about 6 weeks to engineer them and send them back. So if I don’t need bridge chemo, that’s a good couple of months without chemo. I sure my body will appreciate that.

Someone asked me if I’m nervous about being off of chemo for a while as I have active myeloma now. I’m not really.

I took myself off maintenance chemo about 3 years ago after I got covid and had to stop. I saw that the chemo actually wasn’t doing anything. The myeloma was just poking along, rising about 10 light chain points a month. This time it is growing faster, but hopefully I can make it until my anti-myeloma army get infused back in.

I’m trying really hard to keep my expectations in check. It’s so easy to look at the amazing data (potentially cured) and hope for that myself. I know full well that this treatment could easily flop and be back in this same spot or worse (looking at you neurological problems 😡).

Pray for the best, prepare for the worst?

Blog

521 Days Left

Jothi

I went to the lifespan doctor today. I sat down in her blue medical chair and waited for her to finish reviewing my paperwork. She finished up and said,

“Hold out your finger please”

You see, I was sitting next to the lifespan machine. She pulled out a thin cord that had a tiny needle attached to the end.

“Ouch”, I cried out as she stuck me with the needle and took a little bit of blood.

The dials and wheels on the machine started whirling as it processed my blood and was computing.

It printed out a small strip of paper with the number 521 on it.

“You have 521 days left to live”, the doctor said.

“Good to know”, I replied as I got up to leave. “Thanks”.

🤔 Of course, there is no such thing as a lifespan machine.

Sometimes, I feel like I didn’t have a worthwhile day and it was a wasted. It does leave me pondering, dang, what if I only had 521 days left to life and I just wasted one of them? Sometimes, I just have to live with that thought.

Whoever you are reading this, what if you knew you only had 521 days left? What would you do that would make them good days left?

For me, seeing my wife or kids have a good laugh and a big smile on their faces, makes it a good day.

Going out in nature and experiencing things that make me be in awe, is a good day.

Doing something creative, makes it a good day.

Spending 5 hours a day looking at instagram is a good day…… oh wait, Meta high jacked my account and wrote that in there! Actually for me, those are the days that I feel like I wasted, the ones I spend too much time looking at a screen (I only spend 5-10 minutes a few times a week looking at instagram).

Next time you have a good day, try and identify what made it good and try and duplicate it. Next time you feel you wasted a day, try and find out why it felt wasted and try and eliminate that aspect.

None of us know how many days we have left to live, 1 to 25,000, try and make them count in whatever fashion counts for you.

We don’t have a machine that tells us how many days we have left. I’m going to try and do my best not waste mine.

Blog

How To Rub Your Kidneys

Jothi

This post probably should be called Why Should I Rub My Kidneys? But knowing how to, probably more specifically, where they are to rub, is more important.

Known as “The Root of Life” in Chinese Medicine. They act like batteries for Qi, or energy, for your body. I like to get up in the morning, have a big glass of warm water, and rub my kidneys to charge them up for the day. Your kidneys filter the toxins and waste from your body, and you get rid of that via a direct connection between your kidneys and bladder.

In TCM, the kidneys are also responsible for the production of bone marrow, which governs your bones, brain, spinal cord and obviously your marrow. So anyone with myeloma, blood or bone issues should take extra care of their kidneys. Renal failure or kidney failure is one of the main ways people with myeloma die, getting plugged up with all those extra light chains. These guys are very important to keep running well for everyone, especially people with cancer.

If you don’t believe any of this or none of this makes sense to you, who doesn’t like a good back rub? It just feels good, and you can do it anytime and while doing other things. I rub my kidneys while I cook, because there is a lot of little snippets of time in between things. Rubbing them, while standing and having a chat with a friend is also a good time. If you are too sick to do it, you can get help or get a little electric massager to do the job.

So, where are your kidneys located for a good rub?

All you have to do is find the bottom of your ribs on your back. Your kidneys are a little under your ribs at the top, and the rest are exposed right under, on either side of your spine.

In this picture, my hands are right up against the bottom of my ribs, so that’s the level for my kidney massage.

There are also two thin tubes of called ureters that run between your kidneys and bladder. I also like to rub from my waist to my kidneys to get those a bit of a massage as well.

The actual kidney massage should be whatever feels good for you and your body type. You can go clockwise, counterclockwise, back and forth, and up and down.

Using a closed fist versus open hands will change the feeling as well.

In this video, I’m using the Qi Gong method of massage, using the acupuncture point, Large Intestine 4, or the Great Eliminator, on my kidneys. If you make a V with your pointer finger and thumb, the spot is at the bottom of the V. (LI-4 is also a good spot to rub in general or if you are going through some constipation)

I do find it interesting, as I’m currently going through carfilzomib. I can feel my kidneys working hard a few hours after the infusion, especially when my urine turns a putrid color. I can feel that my left kidney is having a harder time with things than my right. I make sure to drink lots of fluids and rub, rub, rub especially on the left.

It’s a minimal commitment to do and another simple tool to put into your well-being toolbox. Give it a try!

Nutrition

The Thing Is… About Sauerkraut

Jothi

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.

Nutrition

The Thing That Keeps Doctors Up At Night

Jothi

Bacteria!

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.

Health tree for Myeloma, a really great resource if you are affected by myeloma, wrote a few posts on gut bacteria and better myeloma outcomes. I think they are worth a read. Your gut bacteria and responses to multiple myeloma treatment and Myeloma and the microbiome the proven connection.

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!