These days, unless you get one of the really bad ones, chances are it won’t be super quick. Well, unless serial killer RFK, Jr. creates lasting damage. My ‘next’ treatment was probably deep in the works and has now basically been killed. I’m on the best treatment available right now (on holiday from it), so I have no idea what will be next now if the treatment loses effectiveness if I have to go back on it.
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Being slowly driven nuts waiting for a key test result…
Not expecting good news…
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There are two tests that are done to detect monoclonal proteins. The first one is in but the second isn’t yet. It will be definitive if the second test is the same, but it looks like I’ve faded bad news for now. I’m not doing well physically, but if the second test says the same as the first I’ll be much less concerned.
Once I have the results, I’ll give an update about what’s been going on.
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Good God I hope so 
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The second result is in and also had no monoclonal proteins detected. It appears I’m ok for now even though I don’t feel ok.
As I previously posted, I had to get my dialysis catheter replaced about 2 weeks ago. I haven’t adjusted well to this catheter, with me going through major taste bud and appetite issues. Even though I’m eating relatively normally now, my body is refusing to hold weight and I’ve been at or below my dialysis target weight for the last 4 sessions, which means they only do a blood cleaning.
On the day after the surgery, I ran a low fever consistent with myeloma cell death. It was gone by the next day. Maybe on the Wednesday after the surgery, I started noticing some nerve discomfort in my right arm. It was enough to be distracting and annoying but that was about it. I had multiple dialysis sessions by then with seemingly no complications.
At some point Thursday afternoon the on and off cell death fever returned. It then passed. On Friday at about 4pm, it returned robustly (never above 100.4). It was exhausting enough that I had to stop working and mainly just tried to sleep until I needed to be up for dialysis the next morning at 4am. The fever broke at around 11pm and I haven’t had one since. Alarm bells were going off big time because this was very consistent with plasma being murdered, a sign multiple myeloma was trying to make a comeback.
My bloodwork was coming on Wednesday, so I knew I wouldn’t have to wait long. Meanwhile, the right arm discomfort had gotten a bit worse. On Wednesday morning about 8am my right hand went numb like it was asleep. It’s been in various states of that feeling since, though it reduces when I sleep. It makes working much more difficult.
For the results, I didn’t get anything particularly helpful in the first results. My white blood cell count was normal. There were three results that suggested my body was under stress and that it was fighting something. The next day, I got the urine light chain protein results which were alarming. Both kappa and lambda light chains had increased by 25%. Kappa was now outside the normal range, while lambda was still in the normal range. The alarming thing about lambda (where my disease is) was that it was the first time it had gone up in probably at least a year. That meant no matter how short a duration, plasma was firing at my kidneys again. That’s not a good sign for them wanting wake up.
Light chain proteins are basically from the past and last about 30 days in the urine, so in hindsight that probably happened last Thursday and Friday with my body doing gangbusters to stop the invasion.
I was now in a waiting game for the two key urine results, which finally came in today. Both had no monoclonal proteins detected, suggesting my fight with myeloma trying to return was brief and tamped down enough to not be detectable anymore less than a week after my struggle.
As implausible as it may be, here’s what I think may have happened. I think the surgeon may have nicked a ‘bag’ of hiding myeloma when placing the catheter. This probably dribbled into my blood stream on Sunday causing the cell death fever. More got into my bloodstream on the following Thursday and that took over 24 hours to tamp down. I’m glad it may have been a false alarm, but I do wish my arm and hand would start feeling better.
This should be my last update for about 5 weeks unless something dramatic happens in the meantime. I’m tired of dramatic stuff happening.
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Today is D-Day for me. I go in for bloodwork at 2pm PT and should have a good portion of the results by Friday, if not sooner. This will also include the myeloma blood test, which I probably won’t receive until next Wednesday or Thursday.
This last 6.5 weeks has been an utter nightmare for me. As mentioned in the last post, I still haven’t solved my hand issue. Getting in contact with doctors, then ordering tests, etc. has taken a long time. I went to the ER and had an ultrasound about 3 weeks ago, and it was clear (based on the stuff that happened in the ultrasound, it slightly improved how my hand felt since). The Physician’s Assistant suspected it might be a pinched nerve, which can apparently be uncovered via an MRI.
It took a week to get my oncologist to order one, and I finally had it last night. I have a tremendously bad back and when I got on that thing, I had no idea how I was going to get through it. She raised the head as high as she could (barely anything), put a pillow under my lower back (very flat pillow), and propped my knees up. I had major PTSD from my 10 out of 10 pain getting a parathyroid scan, and started out just trying to lift my core off the table, which reduced pain. Not long after, it did settle and I was able to get through the MRI. If it lasted 15 more minutes, I probably would have had to pause, so I was glad I didn’t have to. I should get results in 3-5 business days.
I’ve had major appetite issues since the latest catheter went in, and have lost a lot of weight since it went in. The kidney doctor at dialysis does not think any of my issues I’ve been having are related to the new catheter, which has been working fine at dialysis.
At this point, I have no idea what’s going on with me, and shockingly all of my major dialysis numbers are in range, despite not being able to eat much. I feel like crap, but my numbers are good. Even my creatinine went down over a point when dialysis measured it a couple of Thursdays ago, so I’m hoping that gets reflected in today’s bloodwork. If it’s not, I’m going to be very disappointed considering that my ‘real’ creatinine would probably have been somewhat lower than the lower dialysis number if it had been taken a day sooner. The dialysis creatinine number was the lowest I’ve ever seen since this began, but not by much.
I’ll be under a sweat for at least the next few days seeing what’s going on. Nothing will surprise me based on what I’ve been going through. I am exhausted and now know what people mean when they say they’re fighting it…whatever ‘it’ is.
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Good luck!
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Still waiting on any results of substance to roll in, but the CBC didn’t seem encouraging. It appears my body is fighting something and my platelets have dropped to 101 (lowest I’ve seen it) from 150 in my last test. Hemoglobin is at 10.7. My White Blood Cells were at 11.3 (highest I’ve seen it), which is on the edge of being high in the range they gave me, but is considered high for a normal person. Couldn’t really tell much else other than my body is appearing to be under a lot of stress from something, showing up similarly to how it did in the last test when I was feeling terrible after the catheter change. These numbers at least seem to match how I’m feeling vs. all my crucial numbers in dialysis being in range now.
I did receive the MRI results, and I really don’t know what they mean. Here are the key notes:
C5-C6: Posterior disc bulge. Left uncovertebral joint hypertrophy. Mild left foraminal narrowing. No significant right foraminal narrowing. No central canal stenosis.
IMPRESSION: Mild degenerative changes at C5-C6 with mild left foraminal narrowing.
From plugging this into google AI, I should be having symptoms in my left arm, not my right. I am so confuuuuuused. This has gotta be something else and I really don’t know how to get to the bottom of it.
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Those MRI results are meaningless. Do an MRI of any person your age and those findings will pop up.
Have you reconsidered about getting a fistula done?
No fistula reconsideration.
I had a numb/dead thigh about a year ago that was diagnosed as a pinched nerve under the muscle that runs front to back under the hip.
they did do an mri and mine said stuff like that. Dr said it was actually very good for a 60 year old. That’s why he was confident it wasn’t spine related.
Goood luck nunn
OK so I re-read some of your complaints about your hand/arm. If you do this for 60 seconds, does this cause any changes?
I think you should get this evaluated by someone with more experience maybe? Your post mentioned something about a PA evaluating this, but nerve compression at the cervical level doesn’t really make sense to me based on what you’ve said so far.
How did you fix it? Or figure out it was a pinched nerve?
Doesn’t seem like a change
It is agony waiting for these results. Each one is showing something that may be alarming, but I haven’t really gotten any super important test results yet, except maybe one.
That’s the LDH panel. Throughout my disease, this has stayed well within the normal range, except for one time when it dropped slightly low. In my last bloodwork on September 24, 2025, it was more elevated than usual but still well within the normal range. I felt like I was fighting a myeloma comeback attempt at that time (successfully), and the evidence of that was that I had elevated light chain proteins in my urine.
For this LDH panel, it was 271, which is 21 points above my considered normal range, 130 points above the average I’ve had throughout the disease. This is still considered a normal number for regular people, though it is on the verge of high. I believe this test is being used to catch if it seems like the cancer is coming back. I’m very very nervous about the rest of my test results now. I hope it’s a false alarm, but based on the way I feel, I really don’t know.
My creatinine did go down to 6.2 from 7.1 in my last test. This was slightly lower than the dialysis number, but not enough to really make a difference in anything. I was hoping for better, but at least it wasn’t higher or near what it was last time. Still a long way to go to try to get off dialysis successfully.
I’m hoping my oncologist will move my bloodwork up to every two weeks, because the five week intervals might be too long right now. Even though the treatment worked so well that my body is still identifying and killing the invader, the invader almost killed me in about two weeks before I went to the hospital. Five weeks seems like plenty of time for it come raging back. I hope it hasn’t.
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Steroids and PT. I flew to India just a few days later. Hasn’t come back for a year and I’ve been playing tennis 3-4x/week.
Nice, what kind of specialist did you see?
Sports medicine doctor. Piroformis muscle sits right on top the sciatic nerve and can press on when inflamed. Since I was traveling we treated based on this and I got an MRI when I got back just to be sure to rule out any spinal issues. The fact that the steroids and stretches worked so fast really helped to be certain of the diagnosis. I also bought one fine ass seat cushion for the plane.
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I know from watching fermentation how easy it is to react to this or that number moving from sample to sample. Can’t imagine it’s your own body. Once a year physical is stressful enough.
hang tough
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It wouldn’t be as bad if I didn’t feel bad. Because I feel bad, it’s agonizing.
I’m hoping I will finally get an explanation for how I’m feeling.