Bonnie, I have off all maintenance drugs since December 2022 when my ClonoSeq showed zero MRD. Still have serum and urine testing every quarter which have shown zero M spike. My diagnosis back in 2017 was stage 2A. I did 5 rounds of RVD and then the SCT in April of 2018. I have been very blessed and thankful. I wish the same results to everyone with this disease.

I read the Linked Article from the New England Journal of Medicine.
https://www.nejm.org/doi/full/10.1056/NEJMoa220...

I'm not making an effort to express an opinion - I read everything and I simply point out the info we're typically never told. Quoted Content below ( "..." ) is from the Linked Article.

Here's what Everyone is Told:
"...median progression-free survival was 46.2 months and 67.5 months..."
But this is only for those that had the Worst Response.

The Determination Trial does have a Longer Time to First Relapse - But this is Only Based on the Worst Case Responses.

Outdated Testing Method:
"Sequencing was performed at a sensitivity level of 10−5, indicating detection of 1 malignant plasma cell within 100,000 bone marrow cells. In patients in whom minimal residual disease was not detected, 5-year progression-free survival after the evaluation for minimal residual disease was 59.2% in the RVD-alone group and 53.5% in the transplantation group"

They're basing the above on an Outdated Testing method of 10 -5 (no cancer per 100,000 cells tested) verse the much Deeper Remission of today's Testing Methods of 10 -6 (no cancer per million cells tested).

Even so, for those at 10 -5 (100,000 cells), their 5 year Survival was Better at 59.2% (No SCT) vs 53.5% (SCT).

Outdated Treatment Basis:
New Treatment Drugs today are easily getting people to Complete Response or Better and to 10 -6, But people are still being Quoted to get a SCT based on the "...46.2 months and 67.5 months..." being No SCT vs SCT, based on RVd Treatment.

Now as of July 2024, DarzalexFasPro + RVd is Standard of Care for First Line Treatment. For many, It's producing very quick and very deep Complete Remission, measured to 10 -6 (no cancer per million cells tested).

Below is Content is from the Determination Trial that Dana-Farber started in 2010.
When I search for the word " Overall " - that Article has 15 references.

Here's a few with a Brief Summary and the Details from the Reference.

1) No overall survival benefit was observed.
2) No overall survival benefit from SCT - follow-up of more than 7 years
3) Safety - Adverse events - No SCT (78.2%) vs (94.2%) SCT
4) No overall survival advantage of RVD plus ASCT over RVD alone
5) Higher Secondary Cancers with SCT of 3.5% vs 1.6% without SCT
6) In the absence of a demonstrated overall survival benefit...

Referenced Details are in Part 2:

End Part 1:

Part 2:

1)"Conclusions
Among adults with multiple myeloma, RVD plus ASCT was associated with longer progression-free survival than RVD alone. No overall survival benefit was observed. (Funded by the National Heart, Lung, and Blood Institute and others; DETERMINATION ClinicalTrials.gov number, NCT01208662.)"

2)"In that trial, in which patients had multiple effective treatment options at relapse and in which many received ASCT after RVD alone, no overall survival benefit of RVD plus ASCT was evident after a median follow-up of more than 7 years."

3)"Safety
The most common treatment-related adverse events that occurred during the entire trial treatment period are summarized in Table S2. Treatment-related events of grade 3 or higher occurred in 279 patients (78.2%) in the RVD-alone group and 344 patients (94.2%) in the transplantation group; 60.5% and 89.9%, respectively, reported treatment-related hematologic adverse events of grade 3 or higher"

4)"However, despite a median follow-up of more than 6 years in our trial, approximately one quarter of the patients had died, and given the lengthy median overall survival among patients in this population in general, we did not observe an overall survival advantage of RVD plus ASCT over RVD alone."

5) "With longer-term use of lenalidomide in the DETERMINATION trial, the 5-year cumulative incidence of second primary hematologic cancers was 1.6% with RVD alone, as compared with 3.5% with RVD plus ASCT"

6) "In the absence of a demonstrated overall survival benefit, however, and in the context of considerations regarding real-world factors such as treatment burden, acute and long-term toxic effects, patient preference, and quality of life, these findings may be taken into account when making treatment decisions."

I just asked ChatGPT-Pro for some info.
Conclusions from the Data Below:

1) Overall Survival Rate of 85% is the Same for No SCT vs SCT.

2) 81% experienced a Relapse within 15 years of getting a SCT.

3) For those that got a SCT:
Short-Term Survivors: Patients with an OS of less than 5 years.
Long-Term Survivors: Patients with an OS of 10 years or more.

Short-Term Survival Group:
1-Year Post-Transplant: 9% experienced relapse.
3-Year Post-Transplant: 63% experienced relapse.
5-Year Post-Transplant: 82% experienced relapse.

Long-Term Survival Group:
1-Year Post-Transplant: 2% experienced relapse.
3-Year Post-Transplant: 20% experienced relapse.
5-Year Post-Transplant: 40% experienced relapse.

+++
Autologous stem cell transplantation (ASCT) has been a cornerstone in the treatment of multiple myeloma (MM), particularly for patients eligible for high-dose chemotherapy. However, with advancements in therapeutic options, the necessity of ASCT has been re-evaluated.

Progression-Free Survival (PFS):

Patients undergoing early ASCT exhibited a median PFS of 68 months (approximately 5.7 years).
Those who deferred ASCT had a median PFS of 48 months (approximately 4 years).

Overall Survival (OS):

Both cohorts demonstrated an OS rate of approximately 85% over a median follow-up of 76 months (approximately 6.3 years).

These findings suggest that while early ASCT may prolong the period without disease progression, it does not necessarily confer a significant OS advantage when compared to non-transplant approaches.
DANA-FARBER CANCER INSTITUTE

Considerations:

Patient Eligibility: ASCT is typically reserved for patients who can tolerate high-dose chemotherapy, often excluding those with significant comorbidities or advanced age.

Advancements in Therapy: The development of novel agents, such as immunomodulatory drugs and proteasome inhibitors, has enhanced the efficacy of non-transplant regimens, offering comparable survival outcomes.

Quality of Life: Non-transplant strategies may present fewer immediate risks and a different side effect profile, influencing patient quality of life and treatment preferences.

In conclusion, while ASCT remains a valuable treatment modality for MM, its impact on OS compared to non-transplant approaches appears similar in the context of modern therapeutic regimens. Treatment decisions should be individualized, considering patient health status, preferences, and specific disease characteristics.
+++

Autologous Stem Cell Transplantation (ASCT):

Multiple Myeloma (MM): A long-term study with a median follow-up of 13 years reported a 15-year progression-free survival (PFS) rate of 19%, indicating that approximately 81% of patients experienced disease progression or relapse within 15 years post-transplant.
ASH PUBLICATIONS
+++

Hi @A MyMyelomaTeam Member - Do you know if Canada does RAS Genetic Screening of the NRAS and KRAS Genes?

In the US, they do run a FISH Test to look for High Risk Factors - I had t4;14 that caused them to use Velcade which I couldn't tolerate but I accepted in 2021, not realizing what I was dealing with then.

I know for sure the US does not do the NRAS/KRAS testing. It would make such a difference to help people get the SCT, knowing that it would be successful.

Carl Oden, at the MM Naturopath FB site went through two failed SCTs only to finally have his RAS Genes tested when he went for his Car-T. Though he's had years of troubles, he's very glad to be MRD Negative, now due to his Car-T. That said, he's greatly concerned of having a Future Relapse, so he Researches and Posts his Findings that an are excellent collection of data about the Pathways that MM depends on and the Foods, Meds, and Supplements that may help Block Them and possibly prevent a Future Release.

I do plenty of Research and Post my Findings - Carl's Research is even beyond things I've run into. At that FB Forum, plenty will copy these Posts for future reading. There's some from there that I've re-Posted here.

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