I recently went to Golden Gate Park in San Francisco for a day trip. First we went to the Japanese tea garden, which is a place that I was excited to go. I really love Japanese maple trees, of which it turns out they didn’t have many, but the grounds and the buildings were really cool.
We had a bit of extra time afterward, and I wanted to walk over to the Conservatory of Flowers, to see if they had anything blooming outside. As we were walking up, I could see in the distance a bright field of color, so we beelined right for it. When we got there, it was an amazing field of dahlias. So many colors and shapes. I had no idea there were so many varieties of dahlias. So if you can’t make it there in person, here are some photos to see it virtually.
Here are my latest numbers. I find myself holding my breath every month still. Last month, my m-band showed up with a value of detectable but not quantifiable, which of course I was not happy about. This month it was the same. (M-band indicates an excess of abnormal antibodies (M-proteins) in the blood, and can be caused by myeloma or by a few other reasons.)
My doc says there are no signs of myeloma; I’m not sure if I believe him with that showing up on my m-band. Although, I don’t know what to believe in general within myself. It could be cancer, it also could be my post car-t immune system. Only time will tell. My light chains are normal, so that’s good. My lambdas went into normal range this month. They have been low since my car-t, which I guess is a year old now.
I guess I haven’t really written about growing mushrooms here on my blog. I’ve been posting a bit about it on instagram. Anyhow, I started growing gourmet and medicinal mushrooms in May, I believe. It was a bit of a learning curve to it, and I’m still learning, but I have a lot of it down by now. Growing mushrooms here at home has left me, at times, with quite a surplus of mushrooms. So I’ve been eating lots of them everyday.
Something that I learned in the last few months is that mushroom organism (mycelium) is still alive and active for up to 48 hours after the mushrooms have been picked. Being picked fresh and then consumed has exposed my cells to something different.
The reason for my seemingly random tangent is when I was looking at my CBC last month and particularly this month (it’s easier to see the trend), I was surprised to see the spike up in my red blood cells, hemoglobin, and hematocrit. It’s quite noticeable on a data point graph (posted below).
When there is a change, I like to look and see what has happened since. Not much has changed in my life other than my consumption of new and a lot of mushrooms. It could be for other reasons, but it makes me wonder if mushrooms are responsible. The four mushrooms that I’ve been growing are pink and yellow oysters (gourmet), lion’s mane (gourmet and medicinal), and reishi (medicinal). But perhaps that is for another post.
In any case, I’m left with another month of mental torment, wondering if the myeloma is percolating or if the cancer gods are just messing with me. Just keep walking is what I tell myself. I’m off to get another round of IVIG to help my poor immune system.
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…
When I was younger, I used to embroider with my grandmother, probably mostly to keep me out of trouble. I wasn’t very good at it due to my young age, but it is still a memory that we created.
A few years ago, I was thinking about time. You pay time for all sorts of things, and a number of them you don’t end up with anything for your time. Excessive social media use is one prime example. Scrolling for a bit can give you some entertainment, but after a certain point, you don’t gain anything.
I was talking with my wife about doing some embroidery again. She got me a kit for my birthday, and she retaught me again. I completed one and decided to start on another. I thought it would be fun on the second one to take a picture each time I worked on it, and at the end, create a video. It took me nearly a year, with some significant time off from doing it due to treatment, but I finally finished.
I hope you enjoy watching my stitches through time.
