Don’t google enterocutaneous fistulas
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If you spend some time on google image search for these fistula, I think you’ll find that they don’t all look terrible. There is a wide range, from nbd to “ZOMG WTF happened to your arm”.
YouNeverKnow?
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How goes the fight @nunnehi ?
I’m still hanging in there, but have had some roughness over about the last 10 or 11 days with eating. Stuff isn’t landing right, making it hard for me to eat much sometimes. This happened the other day when I had what I thought were no taste bud or stomach issues and when I went to eat it just wasn’t happening.
Other than that, I had my second treatment under the scaled back regimen on Friday. Since early Saturday morning, I’ve been able to walk up and down the stairs normally, which I like. Last treatment, I was able to do that for 8 days before I couldn’t walk down the stairs normally anymore. I’m hoping I get more time this time before it turns.
My next follow up with my oncologist is July 9. I didn’t see anything super alarming in my numbers from my bloodwork that was taken before my last treatment, so I’m expecting the follow up to be uneventful (hopefully). My hemoglobin has fallen to 9.8 in the last few weeks, which is moderate anemia, but that’s really the only number I’ve seen so far that may be somewhat problematic since I don’t know what’s causing the fall. It’s been much lower before, so I’m not really that concerned about it yet.
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I just saw another test did come in that had a note I haven’t seen before. The numbers don’t look majorly different to me from the previous version, and in most cases look better than the previous version but it came with this note:
[No definitive paraprotein detected; however minor irregularity noted in the gamma region. Recommend follow-up with immunotyping.]
And this one:
[Minor irregularity in the gamma region with hypogammaglobulinemia. Monoclonality cannot be confirmed or ruled out. Clinical correlation and interval testing recommended.]
The normal message I get for this is:
Normal pattern. No monoclonal proteins detected.
So maybe an adventure at my follow up does await.
Just found out my medical insurance will be changing again on August 1. Should be an absolute blast dealing with continuity of care again. At least my next treatment is before the change.
Won’t know what max out of pocket will be in the various plans until next Wednesday.
I also think life insurance is changing. I’m basically uninsurable outside of what I think is a Group Life plan through my wife’s job. I was able to get $100k through that but haven’t died fast enough. A good life insurance policy expired about a month before I got sick, which was ironically funny to me.
On the common market, I could probably get one of those garbage $10k policies but that’s about it. No idea if there will be a similar policy available through my wife’s job, but I’ll be getting whatever max I’m allowed if there is one.
Fun times are surely ahead for me.
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I had my follow up with my oncologist today, and there is good news.
I am now on a treatment holiday, which means as of today I’m no longer on any form of cancer treatment. He will continue to monitor my blood work very closely, but I will be able to go back on the Darzalex if the cancer does return. I’ll be getting the same test that monitored myeloma down to the cell next Wednesday, and then my next blood work after that will be 5 weeks from then. My next follow up appointment will be in a little over 2 months.
Hopefully, with treatment being stopped I will finally start seeing the road toward getting off of dialysis successfully. At the very least, I hope to start feeling better overall even though it will likely be at least another 3 weeks before I notice any change from the treatment being stopped.
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Great news! Hope it continues!
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I forgot to mention that even as recently 5 months ago, it was looking like I was going to be on treatment until it lost effectiveness. Now I’m off it because it worked so well with the ability to get back on it if necessary, when I originally just wondered what would be next when it stopped working.
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Superb. Kicking goals man.
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I had one moderately alarming lab result come in from dialysis. My hemoglobin has again dropped to 8.6 from 9.9. I haven’t had a hemoglobin level this low since last summer. I’m glad I’m getting major bloodwork done at the oncologist on Wednesday to make sure something hasn’t slipped back in since my last tests.
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Hopefully you were just a little fluid overloaded. Did they slow down your dialysis or did you miss a session?
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No, no changes to dialysis. Anemia is an underlying condition to Multiple Myeloma, so it’s definitely concerning to me, even though it may be ‘nothing’.
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Fingers crossed. You deserve a reprieve.
After an agonizing 9 day wait, my myeloma blood test finally came in this morning. As a reminder, they take 6 samples and test for how many myeloma cells are present in the blood. This is using roughly 3.3 million cells.
At diagnosis, my highest of the 6 bone marrow biopsy samples had 294,000 cells (of roughly 550,000 cells). At remission, I had less than 5 percent per sample (less than 2,500 cells). In the first myeloma blood test, I had one sample of the 6 that had a detectable count, but the overall count was roughly 1 cell per million for the full 6 samples. All the rest were undetectable. In the latest test, there was no detectable myeloma in any of the 6 samples. My treatment holiday is officially warranted.
I had my other major bloodwork done two Wednesdays ago, as well, and there were some encouraging results. I’m trying to take them with a grain of salt, because my bloodwork is usually on Fridays and a new baseline needs to be set for Wednesday bloodwork.
The notable stuff is that my hemoglobin went back to 10.1 from the 8.6 I’d most recently seen. I have no explanation as to why it had such a big jump, but I’ll take it. My creatinine went down to 6.4 from 6.7, the lowest number I’ve seen since March 21 and mid-November last year before that. The one previous to the 6.7 was 6.89, and the one previous to that was 7. I’m having some trending downward movement in the creatinine which I hope continues. My kidney function also went from 9% to 10%. The highest my kidney function has ever been since I began treatment was 11%, and the lowest was 6%. I probably had roughly 1% kidney function when I went into the hospital with AKI.
After going back through my bloodwork, my kidney function was around 10% until the middle of December, 2024. At that point, my creatinine went up some (7.55) and kidney function went down to 8%. Creatinine dipped to 6.94, with kidney function going up to 9% again on January 10, but hit its high of 10% and a similar creatinine to my last test on March 21. It then went bad again on April 4, knocking my kidney function back to 8%, before recovering slightly in the next test. It’s been stuck at 9% since, until this last test.
My next bloodwork is in about 3.5 weeks, and it will be the first bloodwork done after stopping the cancer treatment. I’ll be eager to see the results good or bad. My treatment holiday from the cancer treatment officially begins today at about 2:30pm (when my next treatment would have been). After that, I will have no cancer treatment going through my body anymore. The bruise from my last shot in the stomach 28 days ago is still there, but it’s finally beginning to fade. I don’t think I’ve ever had a bruise last this long.
The questions now are how long I’ll be able to be on the treatment holiday and if my kidney function will improve enough to get off dialysis.
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Some lazy quick googling reveals that kidneys don’t really repair themselves, except sometimes they sort of maybe do, a little?
What is your best case kidney function % if things go well? Is improvement in % due to the kidneys healing themselves, or something else?
For chronic kidney disease, they don’t repair themselves. For AKI (which is what I had), they can and sometimes do repair themselves. I’ve been told by multiple kidney doctors that they’ve seen people get off dialysis after over a year. It’s not common, but I’ve been told to remain optimistic, especially because I’m considered the most stable person in my roughly 30 person clinic when I’m there and obviously because of how well I’ve responded to the cancer treatment (probably in the 1% best outcomes for speed and effectiveness).
How it’s been told to me is that my kidneys are sleeping. There was no discernible damage on the ultrasound and my kidneys looked normal to the doctors. When I was in the ICU, the kidney doctor thought it was reversible. He also thought I wouldn’t need dialysis, sooo…
My kidneys went through extreme damage prior to my diagnosis, and the goal for the first round of treatment is to reduce the light chain proteins to 55-60 percent of what they were at diagnosis. Mine were reduced by 99 percent in the first round, so the light chain proteins that were blocking the kidney filters were gone quickly. But the trauma my kidneys faced was so severe that they apparently haven’t wanted to wake up ‘much’ after that. I would say any kidney improvement I have is the kidneys slowly waking up, but I haven’t seen enough sustained movement in a long time to have any real confidence they’ve officially started waking up yet. The kidney doctor hopes within a few months of being off treatment that my kidney function will return.
No one’s talked to me about what kidney function I can expect to get to. They’ve only said that to get off dialysis I’ll need to get up to 20 percent kidney function. There’s still a long way to go, but I’ll take any baby steps I can get at this point. That’s mainly because needing to remain on dialysis with my original diagnosis is an extremely bad scene. Most people under the diagnosis/needing to remain on dialysis I have don’t make it much longer than a year. I’m at 15 months since I started getting sick and I’m definitely not going downhill at this point. I’m literally like one of those soccer matches where they go into extra time but no one tells you how much extra time there is. It could be a lot, who knows?
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Glad for the good news.
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