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Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.

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Post-Thrombotic Syndrome, Multiple Myeloma Side Effect

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“Known collectively as post-thrombotic syndrome or post-phlebitic syndrome, symptoms can be painful and debilitating…”

Correction- post-thrombotic syndrome (PTS) is really a side effect of a multiple myeloma side effect called a deep-vein thrombosis aka a blood clot.

I’ve lived with post-thrombotic syndrome  since 1999. I think my story is pretty similar to many people reading this post. A multiple myeloma diagnosis led to induction chemotherapy. Chemotherapy led to two different deep-vein thromboses. The first DVT resolved completely but the second resolved only mostly. 

And it is the “mostly” part that can lead to post-thrombotic syndrome. It did for me. As explained in the articles linked below, my PTS symptoms have come and gone over the years since my DVT first occured in 1998.

The reason for this blog post is to explain the evidence-based but non-conventional therapies that I have learned to manage my PTS. I haven’t cured it, the PTS has not resolved completely, I manage it…

Further, my oncologist, Nathan Berger, M.D. and I talked about treating my blood clot but Dr. Berger never talked to me about post-thrombotic syndrome, much less about therapies to manage it.

My point is that aggressive conventional cancer therapies have led to a number of long-term and late stage adverse events that Dr. Berger never said anything about. I believe that conventional oncology just doesn’t study or understand much about the long-term and late stage side effects caused by high-dose chemotherapy and radiation.

And now I am trying my best to manage these long-term and late stage side effects.

My go-to therapy to manage my post-thrombotic syndrome over the years has been frequent, moderate exercise- from swimming to 30-45 minutes on an elliptical at LifeTime Fitness in Beachwood, Ohio.

When I was living with active blood clots the only therapy that would actually reduce swelling in my calves and ankles was lying in bed for several hours or swimming. I can’t swim anymore so I have taken up exercising on an elliptical every morning. Nothing too strenuous if I want to workout every day. But I do something every day.

Supplementation- from

  • nattokinase to
  • omega-3 fatty acids to
  • curcumin.

There are a number of nutritional supplements that thin a person’s blood. Taking one or more of these blood thinning supplements can be challenging especially if you are also taking a blood thinner such as plavix. I don’t recommend doubling up on blood thinners. Talk to your doctor.

The last article linked and excerpted below talks about both supplements and foods that can thin the blood and/or dissolve blood clots.

Have you had a blood clot aka DVT? Do you think you have post-thombotic syndrome? Scroll down the page, post a question or comment and I will reply to you ASAP.

Thank you,

David Emerson

  • Multiple Myeloma Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


When Deep Vein Thrombosis Causes Long-Term Damage

“Blood clots can wreak havoc on your veins, leading to symptoms that can last for years.

Pulmonary embolism, a blood clot in your lungs, isn’t the only serious complication that can result from a blood clot deep in your veins. Although many people with deep vein thrombosis (DVT) recover completely, up to 40 percent continue to experience symptoms in their arms or legs for years after their initial diagnosis.

Known collectively as post-thrombotic syndrome or post-phlebitic syndrome, symptoms can be painful and debilitating, according to the National Blood Clot Alliance

Complicating matters, clots that do not heal completely can block blood flow from the veins back to the heart, says Jae Sung Cho, MD, division director of vascular surgery and endovascular therapy at Loyola University Medical Center in Maywood, Ill. “The residual blood clot impedes blood flow, and the valve function may be impaired…

Post-thrombotic syndrome symptoms include:

  • Pain or aching
  • Leg or arm swelling
  • Heaviness
  • Cramping
  • Redness
  • Skin discoloration or dark pigmentation
  • Bluish fingers or toes
  • Dry skin or eczema
  • Varicose veins

Severe post-thrombotic syndrome can lead to sores or ulcers, which can be chronic and tough to treat. These sores affect 5 to 10 percent of people with the condition.

Post-thrombotic syndrome is a lifelong condition. Symptoms may come and go over time. They also might not develop right away.

Though it’s generally believed that the condition develops 5 to 10 years after DVT, a clinical review of post-thrombotic syndrome, published in the Journal of Thrombosis and Haemostasis in 2013, suggests that symptoms may plateau one to two years later. The researchers note that a third of those who develop severe post-thrombotic syndrome have symptoms that continue to worsen six years after their initial DVT diagnosis….”

POST-THROMBOTIC SYNDROME

Venous Stress Disorder
“An In-Depth Guide for Patients and Health Care Providers

Medical terms used:

  • Post-thrombotic syndrome (PTS)
  • Postphlebitic syndrome (PPS)
  • Venous stasis syndrome (VSS)
  • Chronic venous insufficiency (CVI)

Patient terms used:

  • Venous stress disorder
  • Chronic venous limb disorder

SYMPTOMS AND FINDINGS OF POST-THROMBOTIC SYNDROME

While some people who have had a DVT recover completely, others may be left with some symptoms in legs or arms: leg or arm swelling, pain, aching, heaviness, and cramping are some of the symptoms.

SYMPTOMS
    • chronic extremity swelling
    • chronic (or waxing and waning) pain
    • unspecific discomfort of the extremity
    • diffuse aching
    • heaviness, tiredness and cramping of extremity
    • dark skin pigmentation (=post-thrombotic pigmentation)
    • bluish discoloration of toes/fingers, foot/hand or diffusely of leg/arm
    • skin dryness
    • eczema
    • hardening of the skin
    • formation of varicose veins
    • skin ulcer (stasis ulcer)
    • “atrophie blanche” or “white atrophy (description in text)
    • “dermatoliposclerosis” (description in text)
FINDINGS IN PATIENTS WITH POST-THROMBOTIC SYNDROME – WHO DEVELOPS IT?

An estimated 330,000 people in the United States have the post-thrombotic syndrome.”

The Treatment of Post-Thrombotic Syndrome

“Post-thrombotic syndrome (PTS) arises in 20–50% of patients who have sustained a deep vein thrombosis and markedly impairs their quality of life…

Conclusion- All conservative options should be exhausted as the first line of treatment. If PTS symptoms persist and markedly impair the patient’s quality of life, the possible indication for surgery should be considered. As PTS hardly ever leads to death or limb loss, its treatment should be as uninvasive as possible. Endovascular recanalization is an attractive option in this respect. A conclusive evaluation of the role of endovascular procedures in PTS must await randomized trials of this form of treatment and of the optimal stent configuration.

Blood-thinning foods, drinks, and supplements

“Natural blood thinners are substances that reduce the blood’s ability to form clots. Blood clotting is a necessary process, but sometimes the blood can clot too much, leading to complications that can be potentially dangerous.

People who have certain medical conditions, such as congenital heart defects, may require blood-thinning medications to reduce their risk of heart attack or stroke.

It is essential to speak with a doctor before trying these remedies, as they may not work as well as medication and may interfere with some prescription drugs.

Some foods and other substances that may act as natural blood thinners and help reduce the risk of clots include the following list:”

 

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