Joy,

In 2021, my Induction of DarzFasPro was a total of 3 months and my reduced Maintenance was 4 months.

At 6-1/2 months (May 2022) they finally found the DarzaSpecfic Lab #123218 that I had been asking for (but didn’t know it’s CPT code back then). It showed that my persistent 0.1 MSpike (since 6 weeks after starting Induction) was False.

Fortunately my Onc was already setup with clonoSEQ and seeing that I had No MSpike he sent for a Blood Sample clonoSEQ. When it came back Negative they said they were giving me a MEDs Holiday. A few weeks later when they said they wanted me to restart Maintenance - I Stated No, Not When My Labs Show No MM Activity.

Again fortunately my Onc was willing to help me under these terms. Together we’ve made this work extremely well. Sept makes 5 years since my original Stage 2 Diag.

In Sept 2023, a dormant Bone Lesion became a very Active Bone Tumor. A few weeks of Revlimid and Dex with 2 DarzFasPro shots killed off the Tumor in a week and a new PET/CT at 12 days after starting Treatments confirmed everything was fine again. By 6 weeks I tested MRD Negative again (Nov 2023) and I immediately Stopped All MM Meds and I continue with Labs Monitoring Only.

End Part 1:

I wear a mask on planes. Usually I don't wear one unless its the peak of some flu outbreak. I do get IVIG monthly for my low immunoglobins. I always carry a mask in my purse just in case I get into close quarters with someone coughing etc.

Once I stopped All MM Meds, after Treatment for my Bone Lesion Tumor in Sept 2023, thanks to my Plant Based Diet, Supplements and Exercise, within 6 months all of my Labs had returned to Normal.

These included CBCs, CMPs, IgA, IgG, B2M, CRP, LDH, K/L & Ratio, TSH, Vit D (85ng to 95ng on purpose), SIEP and SPEP.

I also tested my Natural Killer Cells, which increased from 11% to 17% (range is 4% to 25%) - very healthy for being at age 72.

Knowing all of these factors I’m sure I’m Not Immune Compromised and have no concerns about wearing a mask. Around 8 months ago I took a Flight from to Florida and spent 3 days at a crowded Trade Show, met with dozens of people and had dinners with friends (no masks).

At home, I do the grocery shopping and I’m out golfing routinely.

Since I’m able to truly Measure that my Immune Health (I also get a Quarterly clonoSEQ Blood Sample MRD test that remains Negative) is better than it’s been in decades, I don’t have any concerns about wearing a mask.

All of this from my original Stage 2, 5915 IgA Kappa with t4;14 high risk in Sept 2021. At that time DarzFasPro + RVd were the Miracle Meds that I needed.

As I’ve gone back and Studied my Labs (via my self education), they prove that I was back to Normal Labs in just 6 weeks (from starting Induction mid Nov. thru end Dec. 2021).

Unfortunately my 6-1/2 months of Induction resulted me being overmedicated that caused me plenty of problems to recover from (muscle wasting and significant neuropathy) that I have handled but were never necessary.

My point is Treatment needs to be Individualized and Based on Labs, MRI, and clonoSEQ MRD Blood tests, rather than just Following the Playbook as prescribed by the FDA Standards of Care which are Funded by Pharma Sponsored Case Studies.

I also never collected my Stem Cells and never received a SCT. My Research in 2021 convinced me then to protect my Bone Marrow Microbiome and my Life Time of Gained Immunities.

In Dec 2023, Dana-Farber’s Press Release said “Keep the SCT In Reserve when having a Very Good or Better Response to Induction”.

I know that SCTs are Life Saving for many but it’s still being Pushed, regardless of an Individual’s Response to Treatment. The SCT chemo causes significant damage to the Marrow Microbiome that can take years to heal, leaving a person Immune Compromised.

Treat Smarter and Live Better - Given a chance we can truly Recover. I’ve seen this happen beyond just myself.

Part 2:

It’s your Dara+Len that are keeping you immune compromised.

Get the Lab test #123218 to see if you have No MSpike. Get this even if you are IgA MM (they’ll say this test is only for IgG people - sorry but they’re wrong)

Also know that for IgG, a MSpike can persist for up to a year even when you’re in Complete Remission.

Get a Blood Sample clonoSEQ MRD Test. If you’re Negative at 10 -6 (none per million), look at a healthy Plant Based Diet with no junk foods, processed foods or bad seed oils and Consider a Labs Monitoring Protocol that doesn’t require any MM Meds. Get Monthly Labs and Quarterly Blood Sample clonoSEQ Tests to track your status and take lower levels of MM Meds for short periods if you truly become MM Active.

Before starting this Protocol it may be worth getting a new BMB and PET/CT If your last ones are over 6 months ago.

For myself, while I Remain MRD Negative via the Blood Sample clonoSEQ, I do Not get any Annual BMBs or Imaging, especially PET/CTs or X-rays - get these only when MM Active. An MRI is safe since it doesn’t use any Radiation but if you get an MRI do not get it with Contrast Chemicals (they’re rarely needed and can be harmful).

Back in June 2022, when I told my Consulting Johns Hopkins Specialist that I was Stopping All MM Meds for Monitoring Only, he said “Nothing would happen to me in 3 months that they couldn’t Easily Fix”.

This is why I get the Quarterly Blood Sample clonoSEQ. I’m able to see if there’s anything happening long before it shows in my Monthly Labs or an Annual BMB.

Then if needed I’d get a new BMB, Imaging and a short Treatment and then quickly revert back to Monitoring Only - for myself, based on my Labs and Genetics of my F158V being V/V (very abundant and resilient Natural Killer Cells), it’s extremely unlikely that I’ll ever have MM again (so long as I keep a healthy Lifestyle of Diet, Supplements and Exercise).

I’ve detailed plenty of this at my Story @A MyMyelomaTeam Member

If you’re able to Transition to Monitoring Only, over the course of a year or two you should see a significant improvement in your Labs and Immune System Markers, even though you had a SCT. This Road has real potential and only requires careful Monitoring & Lifestyle efforts.

Staying on MM Meds when they’re not needed will simply leave your immune system compromised and it makes you a sitting duck for opportunistic infections and cancers - I’ve seen it happen.

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A MyMyelo...

I very seldom wear a mask. I’m careful of where I go and try to avoid large congested crowds.