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Myelodysplastic Syndromes-Non-Toxic Therapies

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Myelodysplastic syndromes (MDS) are a group of clonal disturbances with defective cellular differentiation.

Myelodysplastic Syndrome (MDS) is the most common bone marrow failure condition in the United States– it is referred to as pre-leukemia.

As a long-term survivor a multiple myeloma, another blood cancer, I have learned several things. First of all, conventional oncology often doesn’t spend much time and money research “pre-cancer.” And MDS is a form of pre-leukemia. Further, I’ve learned that pre-cancer may not require toxic chemotherapy regimens.

Just to be clear, I am not saying that it is bad that conventional oncology doesn’t spend much time on pre-cancers. I am saying this simply to caution patients and their caregivers. Do not be surprised when your oncologist tells you not to worry about your MDS diagnosis.

Lastly, I know that managing the toxicity of your therapy is critical. I believe that quality-of-life is just as important as quantity-of-life. The average MDS patient is 70 years old. This is not a group that handles toxicity very well.

The articles and studies linked below indicate that there are less toxic or non-toxic therapies for MDS.

I am both a cancer survivor and cancer coach. For more information on managing your MDS or any other question or comment scroll down the page and leave me a comment or question. I’ll reply ASAP.

Thank you,

David Emerson

  • Cancer Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

CURCUMIN AND COQ10

“I have seen research for using both curcumin and CoQ10 in MDS. Since apoptosis is a large part of counts dropping particularly in the early stages of MDS, and these substances seem to increase apoptosis, I wondered if it was only to be used later. Although the research I read seemed to indicate it was for any stage. I did try them though and within just a couple weeks my hemoglobin and white counts dropped to their lowest ever for me…”

Cleveland Clinic study shows promise for less toxic treatment for blood disorder

“MDS is the most common bone marrow failure condition in the United States; each year, between 12,000 to 15,000 people are diagnosed with the condition. Robin Roberts, an anchor with ABC’s Good Morning America, developed MDS after undergoing treatment for breast cancer. Roberts had a successful bone marrow transplant in 2012…

The patients received doses of the drug that was 75 to 90 percent lower than what is typically given to people as part of treatment for MDS.

What the researchers found: In 44 percent of patients in the trial, the disease was well controlled. Of that group, 20 percent remained on the drug for more than three years.”

Clinical response of myelodysplastic syndromes patients to treatment with coenzyme Q10

“Naturally occurring compounds that are not toxic may provide a means to treat patients in the initial stages of the disease. We conducted a pilot study to test the efficacy of coenzyme Q10 (coQ10) in MDS patients with low to intermediate-2 risk disease. A variety of responses were observed in 7 of 29 patients including two trilineage and two cytogenetic responses…”

Vitamin D treatment in myelodysplastic syndromes.

“Myelodysplastic syndromes (MDS) are a group of clonal disturbances with defective cellular differentiation. Vitamin D3 (VD) analogs can act on the differentiation and maturity of different cell lines…All the patients were in a low to intermediate risk group…

Treatment with vitamin D3 metabolites could induce a long-standing response of the hematological disturbance in some low-intermediate risk MDS patients without inducing hypercalcemia.”

The Most BioAvailable Curcumin Formulas

“Based on a review of these studies, it is evident that better bioavailability of formulated curcumin (CU) products is mostly attributed to improved solubility, stability, and possibly low first-pass metabolism”

A search of the Pubmed database for the word curcumin yields 601 studies spaning health topics from multiple myeloma and colorectal cancer, to chemotherapies that synergizes with CU, to Alzheimer’s Disease, arthritis and more. Based on years of reading studies and personal accounts, I think it is safe to say that CU supplementation is safe and relatively inexpensive.

I have read about myeloma patients taking daily doses of CU from 400 milligrams to 8 grams (1000 milligrams = 1 gram). By almost any measure, CU is a safe, inexpensive wonder drug.

The only challenge is that CU is famously difficult to absorb in the body. In other words, a person has to mix curcumin with some sort of fat (coconut oil, chocolate, etc.) or take a brand of curcumin capsule that is already formulated to be more “bioavailable” in order to derive the full benefit of CU.

The study linked and exerpted below reviews different formulations of CU. The study itself lists the three most bioavailable formulation/brand of CU and I’ve added an excerpt from a further review from Consumerlab.com that lists four additional bioavailable brands of CU.

Recommended Reading:

Curcumin

“CU is a bright yellow chemical produced by some plants. It is the principal curcuminoid of turmeric (Curcuma longa), a member of the ginger family, Zingiberaceae. It is sold as an herbal supplement, cosmetics ingredient, food flavoring, and food coloring.[1]“

Bioavailable curcumin formulations: A review of pharmacokinetic studies in healthy volunteers.

“Curcumin is a widely studied natural compound which has shown tremendous in vitro therapeutic potential. Despite that, the clinical efficacy of the native CU is weak due to its low bioavailability and high metabolism in the gastrointestinal tract. During the last decade, researchers have come up with different formulations with a focus on improving the bioavailability of curcumin. As a result, a significant number of bioavailable curcumin-based formulations were introduced with the varying range of enhanced bioavailability.

The purpose of this review is to collate the published clinical studies of CU products with improved bioavailability over conventional (unformulated) CU. Based on the literature search, 11 curcumin formulations with available human bioavailability and pharmacokinetics data were included in this review. Further, the data on clinical study design, analytical method, pharmacokinetic parameters and other relevant details of each formulation were extracted.

Based on a review of these studies, it is evident that better bioavailability of formulated curcumin products is mostly attributed to improved solubility, stability, and possibly low first-pass metabolism. The review hopes to provide a quick reference guide for anyone looking information on these bioavailable curcumin formulations.

Based on the published reports,

exhibited over 100-fold higher bioavailability relative to reference unformulated CU. Suggested mechanisms accounting for improved bioavailability of the formulations and details on the bioanalysis methods are also discussed.”

According to Consumerlab.com:

“Novasol has the highest bioavailability (185 x compared to unforumulated CU), followed by Curcuwin (136 x), Longvida (100 x), Meriva (48 x), BCM-95 (27 x), Curcumin C3 Complex + Bioperene (20 x), and then Theracumin (16 x).”

Leave a Comment:

18 comments
Jay Apuzzo says 3 years ago

My original question was does marijuana smoking cause MDS ?

Reply
    David Emerson says 3 years ago

    I have no idea Jay-

    David Emerson

    Reply
Alderina Dill says 4 years ago

Can you tell me the most up-to-date information about natural treatment of MDS? A friend has changes from ITP into MDS recently.

Reply
    David Emerson says 4 years ago

    Hi Alderina-

    As you know, MDS is a pre-leukemia so the research on proven therapies is limited. However I will link those studies that may offer you ideas-

    Let me know if you have any questions- David Emerson

    Vitamin K2

    Vitamin D3

    CoQ10-

    curcumin-

    Reply
Christina Jones says 5 years ago

My Daddy has Myelodysplastic syndrome associated with isolated del(5q) chromosome abnormality: A low red blood cell count and a specific DNA mutation with CAA dementia.

Reply
    David Emerson says 5 years ago

    Hi Christina,

    I am sorry to read of your father’s MS diagnosis. Do you have a question?

    David Emerson

    Reply
Kristine says 6 years ago

David Emerson could you please email me? The past week has been a whirlwind and my sister was admitted today for treatment. Her diagnosis is AMML. We can use the support and inspiration. Thank you.
Kristine

Reply
    David Emerson says 6 years ago

    Hi Kristine-

    Just confirming that you recieved my earlier email sent directly to you. Let me know.

    thanks

    David Emerson

    Reply
Merrinell says 6 years ago

David~ I am diagnosed with smoldering multiple myeloma. I have NOT received any treatment so far, but can send you all my info from bone marrow biopsy/MRI and blood tests if you can use it!

What would you suggest I take? What brands. You can call me at 503-381-6936 ANYTIME! I am at a crossroad of what to do and truly appreciate your advice! Thank you very much.

Reply
    David Emerson says 6 years ago

    Hi Merrinell,

    I am sorry to read of your SMM diagnosis. Yes, please email your blood tests to david.peoplebeatingcancer@gmail.com. I will know more about your situation once I look over your blood work.

    Hang in there,

    David Emerson

    Reply
Hannelore gark says 6 years ago

I have MDS high risk, can anybody give me advice for alternative treatment

Reply
    David Emerson says 6 years ago

    Hi Hannelore-

    Please click the link below and read the two studies citing both curcumin and vitamin D. You are “high risk.” But can you tell me what type of MDS you are?

    The types of MDS are as follows:

    Refractory cytopenia with unilineage dysplasia: A low number of one type of blood cell but normal numbers of other two types.
    Refractory anemia with ringed sideroblasts: A low number of red blood cells, which have too much iron.
    Refractory cytopenia with multilineage dysplasia: Two of the three types of blood cells are abnormal.
    Refractory anemia with excess blasts (types 1 and 2): A low numbers of any of the three types of blood cells.
    Myelodysplastic syndrome, unclassified: An uncommon type with low numbers of one type of blood cell, which does not fit criteria for other types and has an unknown prognosis.
    Myelodysplastic syndrome associated with isolated del(5q) chromosome abnormality: A low red blood cell count and a specific DNA mutation, with a good prognosis.

    Let me know- David

    Reply
Bruce Figoten says 6 years ago

My wife was recently diagnosed with MDS(intermediate level). She is currently on a regimen of Procrit on a weekly basis. I am looking into CBD as an added therapy to her regimen. What do you know about the effectiveness of CBD with MDS patients?

Reply
camerina seki says 9 years ago

My father just passed away from a disorder called MDS. I did not have any knowledge of this disease, so I wasn’t able to help my father. It was very painful to see him suffering. I would like to know if there is any help i can provide in case that I come across someone else with this disease, or if there is any knowledge you can provide me to help me understand this disorder. Is this disorder genetic? Can anyone else in my family get this disorder?

Reply
    David Emerson says 9 years ago

    Hi Cameina-

    I am sorry for your loss. In many ways I think that caregiving a cancer patient is more difficult than being a cancer patient…

    I response to your question “if there is any knowledge you can provide me to help me understand this disorder. Is this disorder genetic? Can anyone else in my family get this disorder?” Please read the study linked below.

    My interpretation of this study is that any actual genetic link is rare but that there are people who are “predisposed” to MDS and leukemias.

    The article that you came in on citing non-toxic therapies for MDS such as vitamin D3 and CoQ10 are two nutritional supplements that reduce the risk of many cancers. Vitamin D3 is well researched to reduce the risk of breast cancer. I got my 85 year old mother to start taking vitamin D3 about 10 years ago when she was diagnosed with early stage breast cancer. I take it too as well as CoQ10-

    My point is, Camerina, is that you may be in a sort of cancer sweet spot. Though you don’t have cancer, you have become aware of this awful disease and are in a position to reduce your risk to both MDS as well as many other cancers.

    I will link info about the two brands of vitamin D3 and CoQ10 that I take.
    Vitamin D3
    CoQ10-

    Researchers discover new genetic defect that predisposes people to leukemia, myelodysplasia

    I created PeopleBeatingCancer to educate cancer patients, survivors and caregivers. I ignore cancer prevention because I have always believed that few people work to prevent cancer, they only pay attention AFTER the get cancer. I know I felt this way before my own cancer diagnosis…

    I hope this helps. Please let me know if you have any questions.

    Take it easy,

    David Emerson

    Reply
    Kate says 6 years ago

    I am now 65 and have been diagnosed with MDS in May of this year… They have put me on Revlimid but it is not without side effects so I am now looking for something natural. I must admit after 2.5 months the Revlimid is helping to raise my blood level counts, but the side effects for me are really not pleasant at all plus I am POA for my mother with Alzheimer. The combination is getting to be very unacceptable. The oncologist I saw admitted that Revlimid was only a patch not a cure, and began talking Stem Cell transplant right away, which only is successful 50% of the time plus takes a year to recuperate from. I am now 65 and do not want to give up a year of my life being a helpless invalid. I am searching for something natural that will dismiss the unpleasant side effects. I hope you are doing well with what ever treatment you are on, but just wanted to give you my take on the whole experience I have been through.

    Reply
      David Emerson says 6 years ago

      Hi Kate-

      I will reply to your post via your email now. Thanks. David Emerson

      Reply
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