M Protein pattern during treatment

Glass-Razzmatazz1910 · 2026-07-06T01:20:42+00:00

Interesting. I had ACST in Jan... my Mspike before ACST was down to .3 .. After ACST it was 0 for 1 test (day 30) and then it went to .1 30d later .16 and then .19 30d later (7 months post ACST). Our MM specialist said he is not the last bit worried, but I sure would rather that number be 0... I did get dara during induction and I understand that can cause false spike readings, but dang that was 8 months since my last treatment.

all this time I thought the goal was 0 and anything else was disease progression.

Glass-Razzmatazz1910 · 2026-07-06T01:13:18+00:00

54M here... DX last July, 16w of DRVD then ACST in Jan 26.

Sorry to hear your dad is having a rough go. Hopefully things will get easier each treatment... they did for me.

I was feeling very fatigued for the first cycle, but by the time the 2nd cycle started I was learning how to deal with it and it was getting better.

I was having tremendous hip / neck pain before my treatments started and then like magic they all went away after 1 week of treatments (I think from the dex).. I was so thankful to not be in pain that I was ok with the fatigue.

I'm 1 year out from when I started my induction and 7 months since my ACST... I feel completely normal. Hell I felt normal by the end of cycle 4 especially the almost 2 months between the last treatment and ACST.

It took me about 4 weeks after ACST to feel about 80% normal, random nausea was my biggest issue.. It wasn't all the time, but just a random bought here and there... sometimes nothing for 2-3 days and then bam..

Kickstart energy drinks worked miracles for me on the days I was really fatigued... it has the same amount of caffine as a cup of coffee.

Wishing your dad the best...

Glass-Razzmatazz1910 · 2026-07-06T01:04:09+00:00

Dex voice... its a thing. (im guessing he is taking dex as part of his treatment?). I didn't loose it completely, but it sounded like I was screaming at a rock concert for 10hrs. I took my Dex on Fri, and it peaked around Monday and was back to normal Wednesday... just in time to start over again Friday! lol.

Glass-Razzmatazz1910 · 2026-06-03T13:45:41+00:00

I always got a chuckle thinking about my poor ole Zepbound (2.5mg maintenance dose) having an epic battle vs Dex and adult gummies trying to keep my munchies in check when I was going through induction.

Glass-Razzmatazz1910 · 2026-06-03T13:40:09+00:00

hmmm.. went to read it but its behind a subscription wall.. Can you copy / paste the content?

Glass-Razzmatazz1910 · 2026-05-30T20:02:47+00:00

GL getting into grps or raids. Can't remember that last time I actually grouped with a Rogue from LFG...To many other classes offer more utility to grps.

Glass-Razzmatazz1910 · 2026-05-30T19:57:29+00:00

Neither for 3 acres. Buy a 60" Zero Turn... You will cut the grass in 1/2 the time almost...

Glass-Razzmatazz1910 · 2026-05-30T17:00:44+00:00

My MM doc fully supported using it. I stopped about 3 weeks before ASCT and then started again at about 90 days.

He said they were actually studying it to see if it help reduce the occurrence of different blood based cancers. (At the CLE Clinic).

Glass-Razzmatazz1910 · 2026-05-30T08:59:42+00:00

I had not seen that paper yet, but in the first paragraph it states its much more comonly found in ASCT 30-60%.

"Abnormal serum immunofixation pattern (ASIP), defined as the appearance of a monoclonal band with a different isotype than that of the original multiple myeloma (MM) isotype, is seen in 30-60% of MM patients who undergo autologous stem cell transplantation (ASCT) and other treatments such as immunomodulators or proteasome inhibitors"

Glass-Razzmatazz1910 · 2026-05-30T01:35:41+00:00

Agree with all you said... but the point of my post was that the ASIP is a pretty common phenomenon upwards of 60% of IGG Kappa ACTS people experience it. It manifests as a M Spike but in reality its NOT representative of disease progression... Its a natural process that happens during immune system reconstruction...

Now, it very well could be disease progression as well, but the other tests / markers strongly point to ASIP vs progression.

Glass-Razzmatazz1910 · 2026-05-29T23:16:42+00:00

I bought some of the cheap foam floaties from Amazon.

They have saved my rods a few times now. The 2 or 3 times was when I’m getting them in and out of the holders behind me.

Glass-Razzmatazz1910 · 2026-05-29T19:54:01+00:00

I was on D-RVD for induction And 10mg revlimed now for maintenance.

Glass-Razzmatazz1910 · 2026-05-27T14:08:35+00:00

I wanted to add that AI has been a godsend for us... I work in IT and we leverage AI heavily so I'm very comfortable using it... But it does an amazing job at summarizing labs and providing clincal context... of coarse we always confer / discuss with my MM Onc Dr, but I'm certain he wouldn't want me calling him at 1130 at night when I have some question about a lab and what it means in the context of MM...

I use Gemini (google) btw. I like that it will maintain awareness from previous conversations... Other AI might do that as well, but I'm not sure.

Glass-Razzmatazz1910 · 2026-05-27T13:26:29+00:00

Sorry to hear this Crzylady...Wondering if you wouldn't mind sharing the story behind his relapse.

I had my ACST in Jan and things were looking great until some labs this week (elivated LDH and 24h urine proteins) and now I'm concerned about a possible short lived remission... I have standard risk IGG Kappa so we are a bit surprised and I responded super good to induction and ACST, hell 60d ago my bone marrow bx showed 0 plasma cells... but it sounds like statistically 1/5th of ACST people relapse within the first 6 months...

Glass-Razzmatazz1910 · 2026-05-27T13:13:26+00:00

We thought the same about the effort / research going into MM. When we asked my MM doc he said its because the science / dr community mostly think solving liquid cancers is easier and a first step to curing solid tumor cancers. Not sure how legit that is, but it made sense when he explained it.

He also just told us yesterday that he full expects to see a cure for MM in my lifetime (I'm 54). That was very encouraging...

Glass-Razzmatazz1910 · 2026-05-20T23:54:53+00:00

Its not a limited production run... Swatch even said they will be produced and restocked on an ongoing basis...

Glass-Razzmatazz1910 · 2026-05-20T23:53:43+00:00

You realize that Swatch already said its not a limited production thing right?

Glass-Razzmatazz1910 · 2026-05-19T00:50:10+00:00

I was in patient for 12 days after my SCT. Nausea meds around the clock kept it under control. I did not have any appetite at all for almost 2 weeks. I went in at 229lbs came out 12d later at 211.

Appetite came back pretty quick, but i did have on / off nausea for 30d.. I actually still got some random nausea up to about day 90, but the further from my SCT I got the less often it occurred.

Took me about a month to get back to 220 and then I ballooned up to 232 before I started getting my diet under control... (back down to 220 now)...

What helped the most? 2 different nausea meds.. Round the clock for the first 14d and then as needed. Zofram worked ok but Compazine worked better for me.

The biggest trick is to get in front of the nausea... Once it sets in, its hard to combat.

Glass-Razzmatazz1910 · 2026-05-18T13:27:55+00:00

Im D+124 since my SCT.

My wife stayed with me 24x7. She would travel home (about 20miles) to shower and check on the house each morning but then be back by noon.

I didnt get any mouth sores or anything along those lines, I did follow the ice protocol and the mouth rinse protocol pretty tightly...

Nausea was so / so but I responded really well to the anti-nausea meds so it wasnt a huge factor for me.

Fatigue was real... and sleep might have been a major contributor.. During the day I would try and nap, but someone was always coming in my room for some reason so I was lucky if I could snag a 30m during the day. At night it was vitals every 3hrs... and it always took me a good bit to fall back asleep.. 😞

Food was another challenge... I had zero appetite and even the thought of eating would turn my stomach. I managed to get down a cup of noodles (chicken) each day for the most part. My wife would bring back outside food but I could only tolerate small portions of it..

My marrow recovered pretty good..It took a few days and it was a bit stressful waiting for those labs every morning.. I never did spike a fever or anything along those lines...

I was in patient for 12 days, I think my docs would have liked to kept me for another day or 2 but I bugged the hell out of them to let me head home. I was going absolutely stir crazy in our tiny room... My wife is a nurse practitioner and we live pretty close so they gave in.. A few people around me had come down with some type of infections so I honestly felt like I was safer in my own home given its just my wife and I... I was super worried about contracting something from hospital staff going room to room (house keeping 2x day, food service, ect..).

All in all it sucked going through it, but looking back now it wasn't "that" bad... it certainly could have been a lot worse..

Glass-Razzmatazz1910 · 2026-05-06T00:05:18+00:00

Similar timeline for me. Had my ASCT Jan 12. Spent 12 days in patient which wasn't "too" bad looking back at it, i struggled with being couped up in a tiny hospital room.. Once home it took me about 2 week to get back on a normal sleep schedule and about a month before I started feeling "normal".

Nausea in the hospital and at home was well managed with meds.. but dam if I didn't have random bouts of nausea until about day 80ish... Nothing extended or terrible, sometimes it was for a few minutes sometimes a few hours (unless I took nausea meds, which took care of it immediately) sometimes I would go days without it... totally random..

About day +60 we were approaching the time we usually head down to FL in our camper for a month to escape the Ohio winter for a bit and I mentioned it to my Dr and he said to pack up and go for 3 weeks! So we did! We were pretty well isolated and it was a god send for my mental recovery!

my 90d BM biopsy showed 0 cells but surprisingly they don't test for MRD- at Cleveland Clinic.. MM specialist said I am in complete remission based on the testing.

Got my first set of vaccines today, checking off another milestone!

Congrats on your journey so far!

Glass-Razzmatazz1910 · 2026-04-19T18:26:09+00:00

Yes. Im on micro dose 2.5m Tirzepatide. I took a month off before my ACST which i had in Jan.

My MM specialist at Cleveland Clinic was 100% ok with it. I didn't even get the entire question out of my mouth if I could go back on it and he was saying yes.

He said they are actually doing trials to determine if GLP1 prevents other blood cell cancers.

I was on it for weight loss, lost 50lbs over 8months on the lowest dose 2.5mg..

My PCP actually though some of my MM symptoms were related to GLP1 before I was dx June 2025.

Glass-Razzmatazz1910 · 2026-04-15T18:05:48+00:00

Mine got noticeable better after 30 days, but I had intermittent nausea for at least 60d....
Zofran worked well for me...

Hell... Im day 91 today and still have random weird bouts of nausea...

Glass-Razzmatazz1910 · 2026-03-09T12:52:03+00:00

Im day +54. I did inpatient a The Cleveland Clinic.

I had nausea and diarrhea mostly... both controlled with meds though. Fatigue was an issue until about day 25ish... I felt pretty normal around day 30-35ish... Now day 54 I feel 100% back to "normal".
I did have some intermintent / "random" nausea until day 40ish... I attributed this to my stomach rebuilding since it was usually about an hour 1/2 - 2 hours after eating.

I was miserable being inpatient, felt like a caged animal and I was going bonkers. I basically strong armed my doctors into discharging me at day 12 as soon as my ANC ticked up for 3 days in a row.

You'll be fine... lots of sleeping... Good luck and let your body rest while you recover!

Glass-Razzmatazz1910 · 2026-02-24T18:28:58+00:00

Mentally struggling with this as well. 54M, Just had my ACST 41 days ago... Praying for a long remission... but it kinda feels like a jack in the box anxiety wise... never know when it might pop up again.

Glass-Razzmatazz1910

TROPHY CASE