I Have A High Risk Condition Called T14-16. Here Is My Fish Analysis Below. Based On This Info, Does This Sound Serious?
FISH analyses with probes localizing to the loci listed above were performed on a CD138 magnetically-enriched sample. The results were positive for a variant IGH/MAF dual fusion signal pattern in a low percentage (14.5%) of the nuclei examined, indicating a low-level t(14;16) positive sample. This is consistent with the splitting of the IGH break-apart probe. Additionally, the results were positive for low-level gains of 1p and 1q, low-level losses of 13q14.2 and 13q34 and loss of 14q. The⦠read more
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Treatment is a double whammy. Many of the MM Meds will permanently damage our Ig levels, leaving them very low and with minimum means of responding to illness. It's for this reason that many get IgG-IVs to provide some level of response to fight infections. Unfortunately, this boost to the IgG is only temporary, requiring on-going treatments, especially when a person continues with Maintenance Meds that continue to beat-down our Ig Immune Levels.
The second point of failure to our Immune System is the continuation of MM Meds for Maintenance. All mAb Meds, like DarzFasPro continuously kill-off our Natural Killer Cells (NKCs) and, according to a Case Study I've Posted a link to, DarzFasPro will stop killing MM Cells after a few months because what might remain stops exhibiting CD38, which is what mAb Meds, like DarzFasPro are engineered to Kill. Unfortunately, NKCs always exhibit CD38 and are constantly being killed-off.
The two Case Studies I've Link to indicate that when MM Meds are stopped, especially CD38 Killers, like DarzFasPro, our NKCs will recover and our MM cells will become sensitive to being killed by DarzFasPro again - this can take about a year or longer.
You can easily track your health and the condition of your MM's activity. First, there's the normal Labs that look at your MSpike, Kappa/Lambda & Ratio, CBCs, Kidneys, Liver, etc.
When the above are doing well, there's a simple blood test from clonoSEQ, that can tell you if you're in Complete Remission, Negative at 10 -6 (no cancer per million cells tested). The Masters Trial - Case Study - from Dr. Costa - defines Negative at 10 -6, as a very deep and durable Complete Remission, even when people have 1 or even 2 high risk factors. Though his Study had people getting SCTs, it's the destination of getting to 10 -6 that was the goal. So when people get to 10 -6, without a SCT, it's still the Same Very Deep and Durable Remission, without the harm to the Marrow's microbiome, without losing their Life Time of gained immunities and without the need to regain a person's immune system, via their childhood shots again.
With a Doc or Onc printed Work Order:
Quest Diagnostics - Covered by Medicare
Natural Killer Cells - Quest Code 37088 - CPT Code 86357 (NKCs)
Omega 3 / 6 Ratio - Quest Code 91001 - CPT Code 82542
Track your NKCells and work on a Plant Based or at least a Mediterranean Style Diet and Key Supplements to help you boost their levels.
The lower your NKCs are below 10%, the higher your risk of not being able to fend off nasty pathogens.
Again, wonderful to hear about your investigations. We all can now so much better understand what is going on and pick what we are able to include in our journey. God bless, you are staying negative MRD and can at least take a vacation from treatments. Until since is able to get the cure. So glad that you keeping us updated. Wishing you and your family the best. Have a wonderful weekend and please keep us included in your journey. ππΉ
Hi Robin - That's great that you reached Remission. That's the most important starting point. As Donna commented, she did not respond to treatment - in her case, with high risk factors, the SCT makes plenty of sense.
When I was Diag at 90%, IgA Kappa, and one high risk of t4;14, there was plenty of info that said this was aggressive and far more difficult to treat. In 2021, my Consulting Onc at John Hopkins said to get DarzFasPro with my Induction - saying it was game changer, resulting in a faster and deeper remission. He was right.
Now, in June 2023, DarzFasPro is the Standard of Care for first line treatment. My JH Onc also said, that when I achieved MRD Neg, a new BMB would probably no longer show my t4;14. Sure enough - 15 months after stopping treatment, even though my dormant Bone Lesion had become very active, my Marrow stayed inactive and my Marrow showed No bad plasma and No t4;14.
In a month, I'm 3 years with No MM Activity in my Marrow, after my DarzFasPro+RVd resolved my MM is 6 weeks.
During the past 3 years, I've read dozens of Stories on this Forum. There's been plenty of people that have experienced serious and permanent side-effects from their SCT. In addition, many have had quick relapses where the SCT either failed in months or within a year. The SCT is a very involved process. Afterwards, you'll spend the next two years getting your childhood shots again.
There's some important Case Studies that I found that gave me the confidence to simply say in 2022, as regards the SCT - Not Now. During these past 2-1/2 years, I've learnt enough to now say - Not Ever.
One of the things my JH Consulting Onc said to me in 2022, after I decided no SCT then, he said "Nothing will happen to me in 3 months that they can't easily fix".
We have two components to our Immune System, those learnt through exposure to a pathogen. This is why vaccines contain deadly pathogens that have been reduced in their potency. It allows us to experience it, easily recover and then it becomes part of our Immune Response, via our IgA, IgG, IgM, IgD, or IgE Antibodies. Additionally, through our life, we contact viruses and bacteria that, once we recover, they're added to our Immune Response system.
When you get a SCT, your entire immune system is destroyed and All Life Time of gained Antibodies are destroyed.
There's a second and far more powerful component to our Immune System. It's our Natural Killer Cells (NKC). I've recently started to Post info about NKCs that explains their function and capabilities.
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Hi Robin. I also have high risk genetics. P53/17p deletion. I also have 11:14 translocation. I followed the recommendations of my oncologist and my myeloma specialist. I did not have a good response to induction. So transplant was the best option for me. I'm glad you harvested your cells. You and your doctors should decide the best options for you.
I did respond to chemo very well and went into remission in late June . I am also worried about the stem cell infections. I wish they had told me more clearly the refractory tendency of stem cell and instead recommend car t.
I Was Just Informed That I Have A T14-16 Mutation And That Puts Me At High Risk. This Sounds Very Scary - Does Anyone Know More About It?
Fish Results: Indication For Study, Cytogenetics Monoclonal Gammopathy Of Unknown Significance FINAL
Stem Cell Transplant