I’m generally very private about stuff like this (only one person here knows about my diagnosis), but based on some recent discussions I’ve seen on the site I felt like it’s time to do this. I’m not looking for any kind of sympathy and am doing this for educational purposes. Someone out there on this site or reading might find this helpful and that’s why I’m doing it. I’ll answer any questions about this within reason. Thanks for reading and any questions you ask if you do.
21 Likes
Can you give a brief description of what it is. I can look it up but would appreciate your words.
2 Likes
Do you mean kidney disease caused by multiple myeloma?
What’s your treatment plan? Are you on dialysis? How’s your energy with the anemia?
Good luck. Nothing else to say.
8 Likes
This is the same thing Kevin Drum had?
Do you have good insurance?
Are you in much pain on a day to day basis?
You’re one of the people who led me to create this thread.
For me, Multiple Myeloma Kidney is a rare 1 percent incurable blood cancer of the bone marrow. It either develops in the blood or the bones. Plasma is the enemy and it takes over white blood cells. The plasma essentially fired machine gun light chain proteins at my kidneys (normal is about 15-23 I think and I had 2700+) and clogged them up so they could do no filtering of waste. I had no major symptoms (peed fine) and it appeared to develop over a matter of weeks at the end of April, 2024.
On the 8th day of once a day vomiting and after noticing something very bad on the 7th day (blood in my right eye after one of the episodes), I went to an urgent care. I was running a significant fever and my blood pressure was about 190 over something (my blood pressure was previously normal). The doctor told me that she didn’t have the tools to treat me (a cop out) and said she didn’t know what it was but that she was sure ‘it is bad’. She referred me to a local emergency room of a hospital and said they’d be waiting for me. She told me I didn’t need to rush to get there but to not eff around basically.
After about an hour and a half of testing, a doctor that did my intake told me my kidneys were basically completely shut down (my creatinine was 22, roughly 1 is normal) and I was admitted to the ICU with sepsis. I was in the ICU for about 3 days and a kidney biopsy was done about 7 days after I was admitted. These were the results:
light chain cast nephropathy/lambda predominant/75 percent interstitial fibrosis with AKI
After that diagnosis, I was confirmed to have Myeloma Kidney with suspected Multiple Myeloma but they needed to do a bone marrow biopsy to confirm it. About 2 weeks later Multiple Myeloma Kidney was confirmed. I began Dexamethasone on my next to last day in the hospital, and began DaraCyBorD on May 31, 2024.
11 Likes
Technically, it’s just the blood cancer, but the organs the plasma attacked were my kidneys. I’ve been on DaraCyBorD since May 31, 2024. My kidney function still has not returned despite the AKI diagnosis and me being completely healthy otherwise. It’s currently at about 10 percent, but I’ve been told by multiple doctors not to give up hope the kidney function will return. I’ve been on dialysis three times a week for 3.5 hours a day for just over a year. My dialysis clinic has me ‘technically’ classified as ESRD, because they’re forced to do that after a certain number of months. I’ve been told it is still possible I can get off dialysis by the clinic kidney doctor. Being on dialysis with my particular diagnosis is a bad scene, so I’m mostly hoping to get off dialysis.
I had severe anemia at the beginning of treatment, was a little over 7 hemoglobin and needed one blood transfusion in June, 2024. In August, my hemoglobin gradually started going up, and since probably October it’s been roughly in the barely anemic 11-12 range. I was definitely tired in the early stages of treatment but there were so many things going on it was hard to tell what was anemia and what was treatment.
3 Likes
Very sorry to hear this. I wish you the best of luck.
6 Likes
I just looked him up, and he did have Multiple Myeloma. I can’t easily find whether his affected the blood or the bones. People with the bone version tend to survive much longer than the blood version from what I’ve seen in my research. People who present with it in the kappa light chain instead of the lambda light chain also have better survival from what I can tell. Do you know if he ever needed to be on dialysis?
I’m on my wife’s work insurance. I began with one insurance and then the company switched insurances in August of 2024. I had a few issues with continuity of care that could have messed up my treatment plan, but I took a risk that everything would be okay with my new insurance so I could keep on the same schedule.
The first insurance was problematic but mostly did okay. I still have several bills that keep rolling in a year later that are to be covered by that insurance company. It was called Marpai and used Aetna as its underlying insurance company. Hospitals and doctors had major trouble dealing with them but most of it has gotten paid from what I can tell. My new insurance is Cigna and other than the continuity of care issue, I’ve had no issues with them. Out of the plans we could choose from when the new plan came in, I looked for the one with the lowest out of pocket expenses. It’s roughly $3500, which is covered on basically day one of the year based on how expensive my treatment is. I don’t have to pay anything for prescriptions and have racked up an enormous amount of medical bills already this year, including dialysis.
I would say the Cigna is good insurance and the Marpai was average. Marpai approved my experimental treatment (my oncologist said it was the best one available), and he was concerned they wouldn’t. Cigna did put it through but it appeared to take some effort from my doctor even though it was supposed to be continuity of care.
I’m in nearly constant pain (I take nothing for it) but it has nothing to do with the disease and is basically just from side effects from my treatment. On dialysis days, those side effects become very acute after dialysis mostly presenting in my feet, knees, hands, taste buds, and light uneasiness in my stomach that usually doesn’t prevent eating. I have significant neuropathy in the feet, knees, and hands. It’s manageable but I am almost always in some sort of discomfort. I never had bone pain, and my PET scan about 12 days after I began full treatment showed nothing in either my blood or bones. My hospital bone marrow biopsy showed that I had 237,000 myeloma cells per million in my system prior to the PET scan, but the bone scan they did on my last day in the hospital showed nothing which made me think it was going to be the blood version.
5 Likes
To give some good news with the bad, I’ve been in remission since September, 2024. I responded very quickly to the DaraCyBorD treatment and after the first round of treatment (4 week once a week cycle) my light chain proteins went down by 99%. Their goal at my diagnosis is to get it down to something like 60% of what it was, so my doctor was very surprised by that. I’m pretty sure there wasn’t much myeloma detectable in me fairly early on based on the PET scan, so I was fairly sure I’d be in remission at the checkpoint after round 4 in September.
In April of 2025, my doctor became curious about exactly how much myeloma was in my system because of how good most of my other numbers were. He did a blood draw that can detect myeloma down to the cell and compared the results to the bone marrow biopsy I had in the hospital and the bone marrow biopsy that confirmed remission in September. Again, the original bone marrow biopsy showed 237,000 cells per million. The remission was under 5%, probably considerably lower, but I didn’t understand how to interpret the results enough to know how low it was.
In the new test, they took 6 samples comprising of about 3.3 million cells. In 5 of the 6 samples, they could not detect any myeloma. In the 6th one, there was a very small amount in it. My doctor told me there was 1 myeloma cell per million. That’s called Negative Minimal Residual Disease and is considered deep remission. It is possible I may not relapse or that it will not happen for significantly longer than expected.
Because of that news, my doctor took Bortezomib (Velcade) out of my treatment regimen as he’s now confident he’s over treating me. I’m fairly sure that drug is causing me the worst side effects I face from the treatment and it was something I had to take every two weeks. Last Friday would have been my most recent treatment, and my pain appears to have shifted slightly, but it’s nowhere near gone yet.
I’m now just taking Dexamethasone and Darzalex once every 28 days, with my next treatment coming two Fridays from now. My doctor plans on doing the blood test again in 3 months to see if it’s being held at bay. If it is, he says while he’s not considering it seriously now that it’s in the back of his head that he may remove my treatment entirely if my numbers remain similar. That’s too far ahead for me to think about, so I’m not doing it.
As of 4 months ago, I was under the impression that I would remain on this treatment until it loses effectiveness, so it was quite a shock to find out that part of the regimen was being removed. I go to door to door with a level 3 surgical mask on in public and have not been sick outside of the disease since I began treatment. It is a massive immunosuppressant (no vaccines allowed) and people generally get frequent infections when on the treatment. I feel fortunate that I haven’t had any.
Remaining on dialysis truly sux, but I’m hoping my kidney function will start returning now that another piece of my treatment has been removed.
On the day my diagnosis was confirmed, my oncologist said ‘Multiple Myeloma Kidney not a death sentence’. He was 100% confident he could get me to remission and did. When I went in for a consult with a bone marrow stem cell transplant doctor, I was given the cold hard facts of my diagnosis that my oncologist didn’t share. I was Stage 3 High Risk Multiple Myeloma Kidney with AKI. That is the worst diagnosis of the disease. Technically, the stem cell transplant doctor declined to do the transplant after I relayed my concerns, especially since she’d never done one with a dialysis patient, but I wasn’t going to do it if she hadn’t declined to do it. I feel fairly vindicated not doing it now after the result of that blood test but it’s still too early to tell.
When I was confirmed in remission, my oncologist said he expected the treatment to stay ahead of the disease for 17 months. He didn’t say when that clock started, so it’s either November 2025 or February 2026. If I can get off the treatment, I’d expect that clock will last longer unless the myeloma is just sitting in the parking lot smoking waiting for an opening.
15 Likes
Hoping for more continued good news.
1 Like
Wishing you the best.
1 Like
Thanks for the explanation and thanks for sharing. I think it’s important.
1 Like
Wishing only good thoughts for you and your health. Great to hear that things have gone well. Let’s keep that going.
1 Like
https://www.motherjones.com/kevin-drum/2014/10/friday-cancer-blogging-24-october-2014/
Here was his initial post about it. I don’t think he was ever on dialysis, but I’m not sure. It appears that his initial diagnosis was bone-related, but I’m not sure if that means his counted as the bone version.
Thanks for sharing that. It seems clear from reading it that he had the bone version. He also didn’t appear to have any kidney issues. I was told the main preceding symptom of Multiple Myeloma is bone pain and I had none of that.
Darzalex, which he mentions in one of his last posts, is the wonder drug for Multiple Myeloma, and in his early treatment it didn’t exist yet. It’s a plasma killer. The best drug at that time was Velcade, which I talked about above. If my insurance didn’t approve DaraCyBorD, I would have been on CyBorD and I would likely be long dead (he was on an earlier version of a similar treatment). I was diagnosed at 52 which is a little earlier than he was I think around 55. Most people who get the disease are in their 70s, though my oncologist said the youngest person he treated for it was 40. My age and health were likely major factors for getting the treatment approved by insurance. Tom Brokaw has lived a long time with the bone version that he was diagnosed with in 2013. He does not appear to have any kidney issues.
My sister found the data when my kidney biopsy results were explained but roughly 6% of Multiple Myeloma patients (already a 1% cancer) present at the ER the way I did. Most of those never left the hospital. Based on stuff I’ve read, knowing there are very few matching diagnoses, I’m into bonus time but am not getting worse.
1 Like
It sucks man, cancer just comes out of nowhere and hits so fast.
Yes, in this case it was very true. I was still living a relatively normal life until the very end of April 2024, though I felt a little off. It accelerated very quickly in early May. By the time I landed in the hospital on May 8 I was probably very close to death. I think it went from nothing to exploding in about 2 weeks. Getting into treatment even a couple of days later likely would have given me a very different outcome. Going into the hospital one day earlier or leaving one day earlier (which I was desperately trying to do) would have given me a completely different oncologist. He is my guy, ride or die, and I knew that the second I met him.
I felt very judged by a kidney doctor in the hospital before anyone knew what was going on. It turned out it was not caused by anything I’d done. I was basically struck by lightning, with my oncologist saying ‘it was just something that happened to you’. There were no significant warning signs, but in hindsight it was very obvious my creatinine was high now that I know what that is.
I’ve accepted my outcome, whatever and whenever it is, and am at complete peace with it.
1 Like
Sorry to hear this nun. Hoping you stay in remission as long as possible.
1 Like
How is your wife doing? And kids/parents (if applicable)?
Has this caused you to have thoughts about what is important to you in general? E.g. what career you picked and how hard you worked, things you are glad you did, or wished you had done, things that made it all worthwhile, etc.
Sorry for the nosy vague philosophical questions. Feel free to ignore or reframe as needed.
Does the Dex suck? Does it cause insomnia?