@A MyMyelomaTeam Member

Hi and Thanks for your details and success. I very much hope that this is your New Normal forever.

My Consulting MM Specialist at Johns Hopkins was so incredibly dismissive of my Story that I've carefully Documented with my Labs and Daily Protocol - Saying "You're just a Case of One - nothing here for us to look into".

I know from here and a few other MM Forums, it's not just me - in fact, at another Forum, someone followed my Posted Protocol. added to his Induction (DarzFaspro + Rd) and is now MRD Neg and on Monitoring Only - no MM Maintenance Meds.

These cases exist and hopefully I can gather enough to get them to pay attention.

All the Best

Mentioned Users

A MyMyelo...

Larry,

Responding to your question.

Diagnosed mid-August 2022; 80% bad plasma, M-Spike 4.2; IGg lambda MM

Treatment: Late August 2022 started Induction with Darazalex FP, Dex, Revlimid, Velcade, Xgeva. Weekly abdominal shots of Dara and Velcade, 40 mg of Dex once per week and nightly Revlimid 10 mg (oncologist started me off with this low dose due to rapid weight loss I had experienced and being so weak). Xgeva once monthly.

My doctor encouraged a SCT but from what I researched and heard I opted not to have one. No harvest of stem cells for future.

I stopped Velcade after 7 or 8 months due to digestive side effects (extreme bloating) and start of peripheral neuropathy. Stopped Xgeva after 4 months because of reading of possible jaw destruction.

ColonSEQ blood test revealed MRD negativity (10 -6) reached in March 2023 but labs still showed M-Spike of .2. Reached 0 M-Spike in July 2023 and BMB in Sep 2023 showed no diagnostic evidence of MM.

Oncologist put me on Revlimid maintenance of 10 mg until June 2024 when I developed a bad rash. He wanted to use Dara once monthly as an alternative maintenance (he believes in maintenance meds for life). After discussing with him the clinical trials of drug free monitoring with blood tests he agreed to no maintenance meds. So I’ve been MRD negative (officially) for about one year and off meds for only 4 months.

My eating motto is to Eat Food, Not too Much, Mostly plants, a quote from Michael Pollen’s book, In Defense of Food. I’ve also read Dr Brandy’s book as well as Dr William Li’s book, Eat to Beat Disease. I eat a variety of plants each week (40 different plants) to maintain a healthy microbiome. I eat seafood (mainly wild salmon) and grass fed beef sometimes.

I take a variety of supplements (several, but not all recommended by Dr Brandy). I’ve been exercising regularly to regain strength and working on getting more quality sleep each night (a major factor in maintaining a good bone marrow micro environment from what I’ve researched).

Relapse is so common. Working to do my part to prevent it.

@A MyMyelomaTeam Member
No - not exactly.

Nov 2021 - DarzFP+RVd for 3 months Induction. Then reduced amounts of the same for 4 months as Maintenance. At 7 months, June 2022 - the blood sample clonoSEQ said I was MRD Negative and I stopped All MM Meds.

My requested 1 year Follow-up PET/CT found the dormant bone lesion which became active around June of 2023.

So no MM Meds for 15 months.
Sept 1st, 2023 I started Revlimid & Dex (with 2 DarzFP shots - one on week 2 and the second on week 3). I returned to MRD Negative in 6 weeks. Simply the time for my peripheral blood to replace to New.

My Sept 2023 weekly Labs proved the Bone Lesion was dead and gone in under 2 weeks and the matching X-rays and PET/CT showed the Bone had completely healed by Sept 19.

I've remained on No MM Meds for a year now as of Nov 2024.
I just had my 4th blood sample clonoSEQ that since Oct 2023 has remained MRD Negative at 10 -6 (no cancer per million cells tested). Additionally, my Labs are great and even my IgG is slowly improving back towards low Normal (I was IgA but DarzFP+RVd caused all my Igs to be greatly reduced).

May 2024 showed my Natural Killer Cells at 17%.
My Aug 31, 2023 BMB (at the peak of my Bone Lesion activity) showed No Marrow Abnormalities with less than 0.1% bad plasma and 11% Natural Killer Cells. So my Plant Based Diet, Supplements and Exercise produced around a 50% increase in my Natural Killer Cells in about 9 months.

What cancer?
They say MM is incurable - they can't find a trace of it in me.
With my Diet & Exercise, the likelihood of me ever having another MM Event is extremely low. I'm more likely to get hit by a car or lightening on the golf course.

IF I ever relapse, I'll take a brief Revlimid & Dex with Full Weekly MM Labs and stop immediately based on my Labs, which is likely to be around 6 weeks.

The Really Very Sad part of this is:
My Analysis of my Labs in 2021, shows that at 6 weeks (late Dec 2021) I had already returned to Normal and No MSpike (I started at 5.2 MSpike, 5915 IgA and a 208 K/L Ratio) but they failed to recognize the False MSpike that DarzFP had created in just 4 weeks time. Saying I had a MSpike, they said I had to continue with MM Meds.

That morning in my house (around March 2024) when I figured this out by reviewing my 2021/2022, I was screaming and cursing - my wife came out and said - What's Wrong. I explained - I never had to endure so much MM Meds that have caused me so much permanent Neuropathy.

In 2021/2022, It took me pressing the issue of a potential False MSpike that at
6-1/2 months that they got me the #123218 IFE, Darz-Specific Lab test that showed I had No MSpike while the very same Labs - SPEP said I had a 0.1 MSpike.

In 2021, I had never heard of MM and had no idea about the Labs that I've taught myself through all of this. Back then my early research indicated there was a DarzFP False MSpike Test but I didn't know the Labs # of 123218.

End part 1:

Mentioned Users

A MyMyelo...

There's one on this Forum (but only one) that has collected without the Chemo-like Med that stimulates the extra production of Stem Cells. He was successful.

I've read an Article from Dr Berenson - he believes that the Stem Cell Collection process may cause damage to the Bone Marrow's Microbiome. The Chemical involved causes the Marrow to pump-out a significant amount of Stem Cells in a very short period of time.

For myself, I did Not Collect my Stem Cells. Since I have no intention of ever getting a SCT, I have no interest in Collecting. When I was being treated, they said - Collect Now since it's harder as time goes on. That assumes someone stays on Maintenance Meds indefinitely and continues to have their Immune System under constant assault.

I'm not taking any MM Meds and now as time is passing, even my IgG level is recovering. All of the rest of my Labs (CBCs, CMPs, K/L & Ratio, Infection Markers, etc) have all returned to Normal.

Turns out that DarzFasPro is especially hard on all the Ig Antibody components of the Immune System.

I recently watched about 1/2 of a HealthTree PodCast - 2024 Mid-Year Myeloma Review with Paul Richardson, MD, Dana Farber Cancer Institute. He's the one that designed and ran the Determination Trial. In this PodCast, he mentioned that they've learnt that DarzFasPro causes more respiratory infections vs their New Treatment Ideas of isatuximab - saying:

"...Now this is early data and it's predominantly preclinical, but it's intriguing. And of course, isatuximab doesn't rely on complement mediated killing as its major thing because that's why you can more safely give it to people with COPD and asthma and so on because it doesn't actually activate the complement cascade to the same extent that Dara does, though that complemented mediated killing was absolutely vital if you didn't have it..."

In the first year, after my Induction (3 months) and Maintenance (4 months), I had 3 cases of Bronchitis - never had previously. By that time, I had been off All MM Meds for months. It take a long time for these MM Meds to clear our System and even much longer for our Body to Heal. In this past year, I can tell that my Plant Based Diet and Supplements has helped me Heal much faster and better than in the first year after stopping MM Meds in June 2022.

DarzFasPro was very helpful in my Recovery and fortunately, I only had it for a limited period of a 7 months in total but it really takes a heavy toll on our Immune System.

I was on a clinical trial for 8 years T Dana Farber. The drs really study your labs while in a trial. I never noticed any issues like you have had. We need to be our own advocate