Connect with others who understand.

Sign up Log in
Resources
About MyMyelomaTeam
Powered By
Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone Else Had This Type Of Experience?

A MyMyelomaTeam Member asked a question 💭
Ellicott City, MD

😀Had two friends from El Salvador separately share a health drink they make and use to improve gut health. I started making/drinking it daily and my last two months of bloodwork show no M-Spike. Since my Stage 2 MM Diagnosis in 2017, I have never had a zero M-Spike. Drink contains Carrots, Garlic, Lemons, Turmeric, Celery, Whole Cloves, Whole Cinnamon, Guava Leaves and water. I'm searching for answers why I am suddenly testing with zero M Spike. I've questioned my Oncologist who is ordering… read more

August 31 (edited)
•
View reactions
A MyMyelomaTeam Member

Keep me Posted

September 4
A MyMyelomaTeam Member

@A MyMyelomaTeam Member - I believe you mentioned you’re taking DarzFasPro, I assume for at least 8 weeks or more, and that you only have a 0.1 MSpike. What type of MM do you have - IgG or IgA. It’s extremely likely your MSpike is False and can be proven with the #123218 test.

Insist on the #123218 test. If I remember right, you work with Virginia Cancer Specialists in Fairfax, Va - possibly with Catherine Passero, RN.

The reason it’s so important to know is because as long as you have a MSpike, they’ll insist on a full load of Treatment Meds and if you request a clonoSEQ blood sample MRD test, they’re likely to refuse on the basis that you have a MSpike.

If they won’t assist, please reach out to Dr Rajendra Hematology/Oncology in Landsdowne, Va. He will definitely provide these to tests. He gets me the blood sample clonoSEQ quarterly and the #123218 IFE test when needed. Currently I have no need for the #123218 test since I’m not taking any MM Meds.

Additionally, if there’s a new Lab test I want added to my Monthly Labs, I simply make the request about a week before my scheduled Labs and he adds it to my List for that month.

When I wanted my Natural Killer Cells and Omega 3/6 tested I simply asked. Then a month ago, when I wanted my DHEA serum levels tested, I asked and it was done. Next month, I’m interested in getting my Homocysteine, MTHFR, Folate and some related items added. What I do is find their generic CPT Code and the Labcorp or Quest specific CPT codes and supply them with my Request for the Lab tests I want.

My Onc has three paths for testing. His AON Corporate Lab, then Labcorp that they send my samples to directly, and as the last option, if only available at Quest, they give me a Labs Test Work Order with my Onc’s digital signature.

October 2
A MyMyelomaTeam Member

Hi @A MyMyelomaTeam Member & @A MyMyelomaTeam Member - When you take Maintenance Meds like DarzFasPro, be sure to get the Lab Test #123218 - IFE, Dara-Specific. This Lab test can identity and cancel a False MSpike that mAb type of MM Meds, as well as other things like Evsheld shots can produce, in as little as 6 weeks.

This test is a valid concern, regardless of the type of MM - Ig type a person has. There's a mistaken premise that this only applies to people with IgG MM. Their mistake is that the SPEP is a summation of all Ig types. Additionally, if they run a SIEP, Immunofixation, it can report an MSpike in the IgG, even when a person is IgA, IgE, IgD, or IgM but is easily overlooked that the MSpike is now in an IgG band, even though it's not your Ig type of MM.

October 2 (edited)
A MyMyelomaTeam Member

Sorry to hear of the complications you’ve experienced.

Be sure to have Dr Imus get you a blood sample clonoSEQ test. If he says they can’t, press him about it and have him explain why.

If needed, my Onc in Landsdowne would definitely help and there may be others closer to you as well. The clonoSEQ site has a Locate a Provider - search by zip code.

BTW - if your MRD Negative, there’s no need for the Zoledronic, or Xgeva, or similar Injections. Dr Imus can confirm (but it may take some pressing him about it). When there’s no MM activity, our osteo-activity returns to normal bone remodeling.

In addition, the use of things like Pendulum Glucose Control + MegaPre can create Butyrate in the colon, which resets IL-17, allowing you osteo system to perform normally.

Adding the minerals and vitamins I’ve documented in my Story, provides the resources to build healthy bones. My recent Dexascan shows I’ve had a 19% Bone Density Increase in my Lumbar region, returning to Normal, from my previous osteopenia status from two years ago.

September 29 (edited)
A MyMyelomaTeam Member

Part 2:

From Natural Killer Cells Wiki:
"Natural killer cells, also known as NK cells, are a type of cytotoxic lymphocyte critical to the innate immune system. They are a kind of large granular lymphocytes[1][2] (LGL), and belong to the rapidly expanding family of known innate lymphoid cells (ILC) and represent 5–20% of all circulating lymphocytes in humans.[3] The role of NK cells is analogous to that of cytotoxic T cells in the vertebrate adaptive immune response. NK cells provide rapid responses to virus-infected cells, stressed cells, tumor cells, and other intracellular pathogens based on signals from several activating and inhibitory receptors. Most immune cells detect the antigen presented on major histocompatibility complex I (MHC-I) on infected cell surfaces, but NK cells can recognize and kill stressed cells in the absence of antibodies and MHC, allowing for a much faster immune reaction. They were named "natural killers" because of the notion that they do not require activation to kill cells that are missing "self" markers of MHC class I.[4] This role is especially important because harmful cells that are missing MHC I markers cannot be detected and destroyed by other immune cells, such as T lymphocyte cells."

Though these are our most powerful defense but MM Treatment also Kills Them Off. This is why it's so important to get our Blood Levels Tested for Natural Killer Cells and do whatever we can to improve their Levels.

Many of the items in your Health Drink are Known Aids to Improving the abundance of our Natural Killer Cells.

Here's a Video about Natural Killer Cells. Without having to understand the details, it explains how they can act without having to be a Known Pathogen.
https://www.youtube.com/watch?v=iATp8DO3RA8

From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC70...
"Infectious complications may derive from anti-CD38 immunotherapy also targeting CD38-positive immune subpopulations different from tumor plasma cells. In fact, daratumumab treatment was shown to reduce the numbers of NK cells and other CD38-expressing immune cells "

Conclusion:
Treatment of continuous MM Meds leaves us vulnerable to serious infections. Boosting our Natural Killer Cells is our best defense.

Roles of CD38 in the Immune Response to Infection
Roles of CD38 in the Immune Response to Infection
September 28

Related content

View All

I Had My Stem Cell Transplant In May 2024 & Recently In Remission. I Want To Know Any Tips To Staying In Remission.

A MyMyelomaTeam Member asked a question 💭
Charlotte, NC

Has Anyone Been Diagnosed And Treated For CLL, Then Immediately Your MM Explodes?

A MyMyelomaTeam Member asked a question 💭
Atlanta, GA

If I Start Taking Lenalidomide And It's Making Me Constipated Can I Stop Taking Them

A MyMyelomaTeam Member asked a question 💭
Bridgetown Barbados
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in