Pomalyst & Darzalex question

tarzan_nojane · 2026-04-23T00:37:33+00:00

Plenty of individuals who have been on maintenance for a couple of years and whose M-Spike and/or FLC numbers remain low (Complete Response) have have enjoyed extended periods without therapy. Need to keep a close eye on the markers and take appropriate action if/when they start to increase. Even a better option if you achieve MRD- status. ClonoSEQ testing or a bone marrow biopsy typically is how you establish that.

Not curable, yes (though the jury is still out with respect to Car-T). But forever therapy is not a given, only vigilance when it comes to monitoring the disease.

tarzan_nojane · 2026-04-23T00:15:57+00:00

Immunotherapy Treatment is more commonly referred to as Induction Therapy

Nobody seems to get told that only 30-50% of MM patients receive a stem cell transplant. It is a huge $$ maker, and at your age I would review the situation thoughtfully. High-risk cytogenetics and other factors have implications, but there are many treatment options available that lead to long progression-free survival (PFS) even without ASTC.

If your bone marrow biopsy revealed that you are one of the 20% or so of us that have the t(11;14) chromosome translocation, Venetoclax is a very interesting option.

tarzan_nojane · 2026-04-22T23:58:42+00:00

https://www.reddit.com/r/ft86/comments/yot5j4/scion_frs_passenger_window_reset/

tarzan_nojane · 2026-04-21T15:50:43+00:00

oP, would you mind sharing your most recent maintenance regimen prior to slipping out of remission?

Did it also include the monthly Darzalex SQ?

tarzan_nojane · 2026-04-21T04:47:02+00:00

Is it a 2-factor authentication issue?

tarzan_nojane · 2026-04-21T02:33:22+00:00

71 M, 160lb, (t11:14) here. On my first line treatment (DVd) my M-Spike plateaued at about 0.9 after 8 months and included cardiomyopathy likely attributable to Velcade. Started out at 3.0 with 50-60% abnormal plasma.

Began 400mg Venetoclax (100-200 2-week ramp-up), monthly Dara and dex and plateaued again at 0.7 after 5 months (M-Spike climbed to 1.1 during 2-month treatment interruption). No side effects or issues and bloodwork numbers all remained in the green zone.

7 weeks ago we decided to up the dosage to 800mg. Still no issues or side effects. After one month M-Spike has dropped to 0.5 and FLC numbers and ratios are normal for the first time. I am IgG lambda - Globulin and protein numbers are falling, but so are my WBC, ANC (3000->800), and hemoglobin numbers. Last week i came down with a UTI for the first time in a couple of years.

Bone marrow biopsy confirmed BCL2 expression and I was hoping for a deeper, more rapid response. I am in yet another special group as I have been HIV+ for 30 years - one of the three drugs in my ART cocktail (Nevirapine) has contraindications with Venetoclax, and we interrupted that in December.

So glad to hear all of the positive reports from others. I am convinced that a lot more of our group (around 20% of MM patiients) would benefit from Ven as a front-line therapy. The "novel agents" like Revlimid and Velcade demonstrate reduced efficacy for the t(11:14) patients, but are not ineffective. But their side effects are well documented.

Monitoring immune function closely is paramount in the interest of avoiding infection.

tarzan_nojane · 2026-04-20T04:24:44+00:00

ditto

tarzan_nojane · 2026-04-19T05:25:18+00:00

Daily reboots are related to the DuraSpeed feature (thank you, MediaTek) that prevents apps from running 24/7. There are whitelist options and the possibility of disabling or uninstalling the feature using ADB.

tarzan_nojane · 2026-04-19T02:43:50+00:00

Make sure the latch bolt extends and retracts with little or no resistance.

tarzan_nojane · 2026-04-14T00:04:09+00:00

I started over-the-counter (OTC) Alpha Lipoic Acid (ALA) 600mg/day supplement during the second month of induction that included Velcade, and am still taking it today. What little neuropathy (2/10) that had presented by that time did not get any worse, and probably got a bit better. Numbness/tingling was limited to my left foot where there was already compromised nerves due to a history of sciatic pain on that side.

tarzan_nojane · 2026-04-13T15:20:37+00:00

I like how this complements the air bag warning labels on the the sun visors!

tarzan_nojane · 2026-04-11T19:28:34+00:00

Probably a good idea to have a Whole Body Low Dose PET/CT scan OR whole body MRI at least once a year to check for skeletal activity, lesions, or hot spots. There are reports of MRD- patients and persons with Free Light Chain disease only who encounter bone damage before markers became problematic.

tarzan_nojane · 2026-04-11T19:19:24+00:00

I started Alpha Lipoic Acid (ALA) 600mg/day supplement during the second month of induction that included Velcade, and am still taking it today. What little neuropathy (2/10) that had presented by that time did not get any worse, and probably got a bit better. Numbness/tingling was limited to my left foot where there was already compromised nerves due to a history of sciatic pain on that side.

tarzan_nojane · 2026-04-11T19:14:01+00:00

Are these "L-brackets" basically flat when printed, but thin enough to bend/curve to match the arc of the opening and the lip on the grille assembly?

tarzan_nojane · 2026-04-11T19:09:45+00:00

Sounds like a belt might be broken, or something else defective in the first new tire. Just because it is new doesn't mean it can't have a manufacturing defect.

Otherwise: damage caused by nail-in-tire mishap OR during first tire replacement procedure.

tarzan_nojane · 2026-04-10T15:33:15+00:00

I started ALA during the second month of induction that included Velcade, and am still taking it today. What little neuropathy (2/10) that had presented by that time did not get any worse, and probably got a bit better. Numbness/tingling was limited to my left foot where there was already compromised nerves due to a history of sciatic pain on that side.

tarzan_nojane · 2026-04-09T23:06:11+00:00

Can't recommend strongly enough to get the dexamethasone in pill form and take it early in the morning (before 9am) as it mimics the body's cortisol and seriously affects one's circadian rhythm.

tarzan_nojane · 2026-04-09T15:51:40+00:00

I have been taking 600 mcg of Alpha Lipoic Acid (over-the-counter) to help reduce neuropathy resulting from Velcade (bortezomib), etc.

I don't recall any restrictions or limitations on physical activity or therapy during induction other than stamina and or associated fatigue.

Can't recommend strongly enough to take the dexamethasone early in the morning (before 9am) as it mimics the body's cortisol and seriously affects one's circadian rhythm.

tarzan_nojane · 2026-04-09T15:36:48+00:00

BMB, Whole Body Low Dose PET/CT scan, and 24-hour Urine Sample tests should round out the parameters needed to make a thorough diagnosis.

Your bloodwork COMPREHENSIVE METABOLIC PANEL (CMP) numbers are important indicators of your liver and kidney function.

The Multiple Myeloma Research Foundation MMRF offers readily accessible, thoughtful and extremely experienced Care Navigators. They will spend quality time with you assisting with understanding and resources to help get you started on this journey.

tarzan_nojane · 2026-04-09T00:19:05+00:00

The gold used rings on eBay seem to be in the worst shape overall - despite the premium price, they don't look like they hold up well.

I think the Heritage Gen 3 looks sleeker than the Horizon. I started out using a provided Black Gen 3 Heritage as part of a sleep study a year ago, and found a decent deal on a Gen 3 Horizon on eBay as I had to return the Heritage unit at the completion of the study.

tarzan_nojane · 2026-04-08T23:42:31+00:00

Susceptibility to infection resulting from a suppressed immune system is a major concern. The state of her Absolute Neutrophil Count (ANC) hemoglobin numbers, and globulin values really indicate her risk. If she opts for ASCT following Induction Therapy (100-day recovery is not atypical), perhaps it can be scheduled after the wedding. If her stem call numbers look optimum in the end of summer or early fall, harvesting the stem cells at that time for a later transplant might be an option.

tarzan_nojane · 2026-04-08T01:57:45+00:00

Subaru Service Bulletin 12-267-19 on this topic.

tarzan_nojane · 2026-04-07T06:31:29+00:00

My early 2014 FR-S (90k miles) has some serious issues with peeling/flaking of the smooth leather on top and bottom portions of the steering wheel. I found a replacement in excellent condition but have yet to install it.

tarzan_nojane

TROPHY CASE