Well, I got through another month and a half of my blood not trying to kill me, so I’m quite pleased about that. I’m starting to get cautiously hopeful. My specialist reminded me the other day that 30% of people who have car-t are cured. But the unspoken math says 70% aren’t. That would really be something to permanently survive myeloma.
My IGG is back to normal, which makes me feel some semblance of normal as far as energy and ability. When I was down in the lower 400s, I was really dragging, and I was getting sick frequently. I don’t know what my IGM or IGA are because my doctor doesn’t like to have them tested. IGA is the important one for this time of year, being cold and flu season, and that’s what those antibodies main job are.
I’m unsure at this point whether I can maintain my IGG level on my own or if I’ll start dropping again. The car-t really destroyed my IG levels as well as the cancer, so my antibody production ability is still unknown. The doctor stopped my IGG infusions, and we will wait and see at the next round of blood tests if I can hold it.
Well, honestly, my reaction was that I was shell shocked. This took a number of days for me to process, and frankly I’m still processing the long term ramifications of this test result.
My bone marrow CLONOSEQ report came back. This is actually the first time the report was shared with me, so I got to read the full thing myself. This is the best, most sensitive test that can be done for myeloma, counting individual cells.
Zero cancer cells in 3,709,872.
This means I achieved a sCR or Stringent Complete Response from my Car-T procedure. It also means that I’m in complete remission from myeloma.
It was funny, it somehow, for me, has a similar parallel to being told “you have cancer,” which was such a gut punch. Now being told,
“You don’t have cancer”
“Wait, what?”
It’s been a long six plus years with cancer; I feel a bit astonished.
The CARTITUDE-1 and CARTITUDE-4 clinical trials just reported with the long term results of CAR-T Carvykti therapy results. 32 patients are still cancer free 5 years later (32 out of 97 patients, 33%), and doctors are starting to call them cured.
So I have a 33% chance to be cured of myeloma, something previously unthinkable. Of course I’m thrilled with the test result. But, I think it will be some time before the cancer nagging thoughts in my head go away. The question for all cancer patients, will it come back?
I’ve had the best test available for myeloma, and it didn’t find any. But, really, all the test said is I don’t have any in my left hip. Only time will tell if the myeloma has been wiped out or if there are a few cells hiding in my right hip or in a vertebrae in my neck.
“Try to live a normal life,” my doctor told me.
I find myself in between having future test anxiety and just not caring anymore (because I hate worrying and find it exhausting).
I was talking with my wife about my parallel and my dumbfoundedness. Her thinking was that I had an identity before life with cancer and then that shifted into an identity of a person who was trying to survive cancer. Now, maybe I’m a person who has survived myeloma, I’m going to have to reinvent myself again.
I guess the trick now is not to hold my breath, let time flow, and keep making the most of life.
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.
Hello all. Here is the most recent snap shot of my blood. I view it, and it turns out my doctor also views it as a mixed bag. My m-band disappeared last month, which I was excited about. At that point, it had been six months since my car-t, and I was excited that my engineered cells were still alive and doing their job. I still had a faint showing of IGG lambda on the Immunofixation Electrophoresis test, which hinted that there is still myeloma in me.
March’s labs continued to show the faint hint of myeloma in my blood, even though my m band had zeroed out. So that was not the best news. I had a meeting with my specialist shortly after the blood test results. He was saying that most people would have zeroed out completely by now if they were going too. Having a smidge of protein on the immunofixation electrophoresis at this point is concerning for him. He did concede that there have been cases of people taking longer than 7 months post car-t (which is where I’m now) to have normal blood.
We are going to do a bone marrow biopsy and do some cancer counting on a cellular level to get a better idea of what’s going on.
So I have mixed feelings about it all. The cancer is under control but likely is still there. The doctor is thinking about recommending bi-specifics shortly (pending bmb results) to try and put a boot on the cancer’s throat.
I’m trying not to jump to conclusions prematurely, since there is prior data saying that car-ts can still being doing their job, just slowly (?). It’s been nice not being on any treatment though, other than antibodies. So the thought of having to go back on something is not a welcome thought.
Hurmph…. The life of a person who has been touched by cancer…
Here are my latest set of numbers for curious people. It’s been around 5 months since I had my car-t cell infused. By the looks of it though, I still have cancer in my blood at this point. I asked the doctor about it, and he said my having a value for my m-band didn’t necessarily mean I have malignant cells still circulating, and that sometimes it just takes awhile for the m-band to clear.
It has never taken me this long to clear my m-band, and it feels like a bit of sugarcoating on his part. But I’m trying to keep an open mind about it. I find my anxiety level is a lot higher after my car-t, which come to read recently, can be a side effect of car-t.
My light chains are still obliterated, which is good on the cancer front. In December, my m-band had a 50% drop, from .4 to .2, which I was pretty excited about. In January though, my m-band didn’t seem to move at all, which I feel kind of stinks.
Although to be fair, my December test, I could have been at .2999 and it would still show .2, and now I could be at .2001, which would also show as .2. The test isn’t that sensitive though, so I’m having to try and not worry about it for another month until my next test.
My reds in my blood are still lousy. They never recovered after my stem cell transplant and are beat up more from the car-t. But they could be worse, so I’m still eating my plant iron to try to support them.
I had a new blood test done in December called TBNK Single Platform. It is a test that measured my various T cell levels, which I found pretty fascinating. In a nutshell, after some research, my low CD4 reading is normal after car-t, and it means that I have low immunity against germs and viruses. CD4 T cells also support cancer-killing T cells to do their job, so low isn’t the best, but it’s expected. They just have to work hard.
My CD8 T cells are high, which means my genetically engineered cells are doing quite well, multiplying and there are plenty of them to do their job of disposing of myeloma. I guess I just need them to get in all the little nooks and crannies in my body to do their job completely.
Overall, I do feel pretty good. Being off all treatment is awesome. I’ve taken up jogging again, which does feel good to move my body, get my heart pounding hard, and work out my lungs.
I did get sick at the beginning of January, which did end up sending me to the emergency room. My sickness wasn’t too bad, and honestly it did tick me off that I had to go to the ER. My fever spiked up to 102.4 and that’s what earned me the trip. It was just a run of the mill virus after all the tests that were done. It has taken me 2 weeks to mostly get over it, though. My wife caught it from me, and it took her only 3 days to get over it.
It’s been awhile since I’ve felt like writing anything. I’ll have to try and remember what’s been going on, post CAR-T, in the last month or so.
I had my second infusion of antibodies and another round of myeloma blood tests. All my light chains were still about zero, below normal. My M-band is still hanging around with a reading of .5. That means that I still have cancer cells circulating in my blood. The doctor said since my light chains are basically zero, they expect my m-band to continue and drop, and hopefully disappear completely.
I have another round of blood tests this week. I’m very curious what my blood will say. I was scheduled to have a bone marrow biopsy a month ago. I was telling my doctor I didn’t see the point, since my blood was saying there was myeloma still circulating. Of course I was going to have a myeloma reading from my marrow. The thing I’m going for is MRD zero, which is no trace of myeloma in my marrow. So I got them to postpone the test.
I did end up having a few minor neurotoxicities, which turned my mind a bit sluggish. The extreme fatigue was a challenge, but I seem to be over both. I was on the antibiotic bactrim after my hospital stay, but it was dropping my platelets and red blood cells too much. Doctors are concerned with pneumonia post Car-t, so it was precautionary. They switched me over to another antibiotic, atovaquone, which is a liquid (?) type. It was basically like eating a sweet, good quality yellow paint. Gloppy, thick, and gross.
I ended up having an abnormal reaction to that stuff. It caused my inflammation to rise significantly, and it felt like I had thriving active myeloma again in my bones. It was painful, and I certainly didn’t want to feel like I had lots of cancer having a party inside of me after doing Car-t. I couldn’t help wondering if the treatment had bombed, because it sure felt like it. So it was a good mental struggle and stress, and was another hurdle to overcome. My last blood test said the opposite, so that took my load off.
So in the meantime of not doing anything medically related, I’m finding my body restarting its systems. Recently, I find myself saying “Oh yeah, that’s what it feels like to be normal”. I have energy again. My mind is sharp again. I’m not tired after doing a simple task. I’m not combating a steady dose of side effects from chemo. It’s funny what a person gets used to and becomes their version of “normal”.
I’ve been off chemo a few times in my myeloma marathon. I got Covid around 3 years ago, and the doctor stopped my Revlimid while I was dealing with that. I had a blood test before I was going to restart, and it showed the revlimid actually wasn’t doing anything. I decided to stop all chemo for about 8 months and try some alternatives.
The difference between then and now is that I knew the myeloma was increasing (very slowly) and contained somewhat, but I was getting worse over time. Now again, I’m off chemo, but it feels like the reverse is happening. I seem to be getting better over time.
So far, that makes me a big fan of Car-T. I’m still waiting and hoping the cancer zeroes out, and I don’t have to deal with myeloma. What kind of story will my blood write for me?
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.
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.
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.
Well, I’m going to attempt to just write something quick, I’m not sure if I’ll succeed. I’ve had more blood tests done and more doctor’s office visits. We ran some myeloma lab’s recently to start to check on the results of our efforts.
My light chains have practically disappeared. Everyone is supposed to be in normal range for normal blood formation. I’m now low on both. Just as a reminder, I have lambda myeloma, meaning I get too many lambda light chains. In my last test, my lambdas were at 157, which was too many. So those Car-Ts are doing their job, and then some.
My M-band is dragging its feet, as it normally does. It would have been nice to see a big fat zero, but maybe that’s just me being greedy. It has only been a few weeks since the Cars were infused in. At least it’s on its way down.
I had my first of six planned monthly infusions of IV-IG, which is an infusion of antibodies. The Car-T cells kill off antibodies as well as the myeloma cells. They are programmed to search for cells that have the BCMA protein, which both myeloma and regular plasma cells have. Which is also why I’m becoming immune compromised again. Although my neutrophils are now over 2, which is in normal range.
I had the nurse put in an IV to draw my blood and then set me up on the IV-IG to save myself a hole.
“This is not how we typically do this”, she informed me. “Usually you have your labs done in the lab, and then a nurse sets you up with an IV once you are in the infusion chair”.
“Sorry for the trouble,” I said.
I believe that doctors and nurses are so exposed to medical things, they get desensitized and set in their ways. They forget that a patient could be doing something for the first time (not that I was) or what could be best for a patient.
It’s just a very human response, so I wasn’t upset or anything. It was just a good reminder that everyone is human, doing human things, no matter who they are or what their job is.
When I was in sales years ago, I got very desensitized to spending other people’s money. Spending 5-10k of someone’s money was no big deal for me. It was an interesting learning experience for me once I realized it, and I started putting myself in other people’s shoes more often.
Besides, I refuse to be a typical cancer patient. If I was, with my myeloma genetics, I would have been dead years ago. Let’s see if I can get my atypical T cells to get rid of the myeloma, more than typical.
Wow, it’s been about a week since I wrote something. I feel like sleeping most of the time. I was warned about the extreme fatigue that comes with this, but this is a whole other level compared to other fatigue I’ve gone through.
I ended up getting the boot from the hospital a few hours after I wrote my last post. The doctor came in and did a complete 180 from what he said the day before. I think when it came down to it, they needed the room for someone else, and me staying was messing up someone’s schedule. The early test results said I didn’t have an infection, which was confirmed days later. My fever was caused by the CRS.
When they decided to give me the boot from the hospital, I mean they really did give me the boot. They pulled out my picc line, gave me a shot of Neupogen to boost my white blood cells, and had a wheelchair ride to the curb waiting. The doctor said a nurse practitioner was going to come by and answer all my questions, but one wasn’t available, so that didn’t happen. I was a bit ticked off with the lack of information as I was suddenly being shown the door. Overall the hospital stay and staff were good, except for the end.
I didn’t mind going home, as a hospital is not a place of rest or recovery. It’s a place to make sure you don’t die, although that happened quite a bit while I was there. 4 people dying in one day was my record while I was there.
I was talking with one of the nurses while I was there, and he was wishing they didn’t announce it on a loudspeaker on all floors. He found it disturbing and he wasn’t the one hospitalized. I didn’t mind knowing. It was a good reminder that death is part of life and it happens all the time, unknowingly to most people.
So I’ve been home for about a week now. I’ve been pouring in the nutrition, giving my body what it needs to recover. I had a check up on Monday, with labs showing my recovery. I have another check tomorrow, where I think we will run some myeloma labs, to start seeing how the treatment is going.
I’ve had two little bouts of confusion when I wake up in the middle of the night. I’m also having some weird nerve discomfort/pain down the backs of my arms and legs. That’s going in the “I don’t know” category for the doctors, but fortunately it is gradually getting better on its own.
I’m at day +11 now. Things started to kick off on September 1st, which was day +7. My blood pressure dropped significantly and I started a low grade fever. I usually run in the 97’s temperature wise, and I bumped up into the 99’s. Those things remained for 3 days, so I was feeling pretty miserable at times.
At midnight, between day +9 and +10, my fever finally spiked into a true fever at 101. My hornet’s nest had finally been kicked after a few days of it just being gently shook. Inflammation took off and blood counts dived.
They have done a lot of tests looking for infection. I’ve been hooked up to a running IV of various things for 2 days straight, including constant IV antibiotics. I find it a bit odd. I’m having the expected response of fevers, low blood pressure and blood counts. And yet they have to assume its an infection and carpet bomb all the bacteria in my body, even though it’s expected to be a cytokine release syndrome.
I get why they do it, but it’s frustrating. I just have some work to do to try and restore it afterwards.
I don’t have a confirmed CRS rating yet, since my blood cultures haven’t finished growing to rule out infection. If it was graded, it would be rated as mild, since I did not lose any cognitive function other than a bit of spaciness. I suppose overall, so far, I’m getting through this on the easier end of the CAR-T scale (knock on wood (another funny saying)). The drug they used to calm the CRS did work quickly. So far, a second CRS hasn’t come, which I didn’t know was a thing.
My blood values seem to still be falling in the good places and are still elevated in a few wrong places. Seems like they are going to keep me here in the hospital longer than initially planned to keep monitoring. I’m at a really high infection risk with my ANC numbers. Hopefully I can get released by tomorrow.
Here is some of my more interesting data, in case you are curious.
I’m giving myself a pass and not proofreading this, so you will just have to suffer with any bad grammar or mistakes, sorry 😜.
Carrots Over Cancer 