My Medical Story

I was diagnosed with MGUS (monoclonal gammopathy of undetermined significance) about 5 or 6 years ago after a spike in m-component was identified by my primary care doctor during some testing for MS because of dizziness, weakness, pain, and numb areas. At that time I had no protein in my urine and also had a clean bone survey. As a result of the MGUS, I've been monitored with blood work every 6 months. My neurologist told me that the referral to an oncologist seemed "unnecessary". HA! Glad my primary care doctor didn't listen to people like that. At one point in the 6 years, my blood work returned to normal and the MGUS wasn't picked up at all on standard blood work. As a precaution, my oncologist decided to use a more sensitive blood test before releasing me. That test still picked up abnormalities and she also did a bone marrow biopsy... so I kept seeing my oncologist. Thank God for that. Not too many months later I ended up in the hospital with heart failure, and my oncologist was really suspicious and on the hunt for amyloid. My cardiologist talked to her and said that I didn't have amyloid based on the echo. My cardiologist told me that "You don't want Amyloid, we don't have a treatment for that." My oncologist had my GI doctor do biopsies and one showed amyloid, but too few cells to determine which kind of Amyloidosis. This last year I also developed the enlarged tongue, frothy urine. I had carpal tunnel, and numb areas in my feet and arm. The positive biopsy and Amyloid diagnosis was this last December (12-26-07). I am 51 years old.

My oncologist referred me to the City of Hope, Bone Marrow Transplant Center, in the Banner Good Sam Hospital in Phoenix for a 2nd opinion and follow up tests. My insurance wouldn't cover the Mayo fully but would cover the City of Hope fully. I saw one of 4 doctors who work as a team, Dr. Clarence Sarkodee-Adoo. They did the 24 hour urine collection and blood work. They confirmed the diagnosis. After consultation with the 12 other doctors at City of Hope in California they recommended the Melphalan and Prednisone, since they felt that the Stem Cell Transplant (Stem Cell Transplant) was too risky. My regular oncologist has done lots of SCT also, but never with a cardiac amyloidosis patient. We decided to take the recommendations of City of Hope after reviewing their report.

The doctors believe I have Cardiac, Kidney, GI, and nerve Amyloid. The kidneys are doing well so far but I am having problems with heart failure that I have to manage. The GI has given me problems with constipation that I am managing ok with the help of medicine from my oncologist. I've lost about 20 pounds in the last 6 months but my weight seems to be stabilizing. I think I have absorption problems that were made even worse by the lack of appetite from heart failure. Now that the heart failure is managed I have a better appetite.... sometimes quite astonishing as I will tell you below.

I started my first round of chemo Feb. 25th. By day three I was pretty sick with nausea although, thankfully, no vomiting. My mouth became tender and sensitive. My oncologist provided "magic mouthwash" and also pills for nausea that were helpful. It is now a week later and I am feeling no nausea at all and have some limited energy. I understand that the effects will build up in me over time so I might be sicker with the next rounds (or maybe not?).

I am also drinking green tea. I plan on eatting lots of fresh pineapple, also suspected of helping to rid the body of amyloid. I also read recently about tumeric root removing amyloids. I was nibbling on turmeric root for awhile but it is way too intense and expensive and makes you orange. Our local herb store has a tincture of turmeric root that I will try. I will try any foods. I have been vegetarian for much of my life, but find I am craving poultry... INTENSE craving for chicken and turkey. My oncologist says that sometimes your body craves what it needs and to go with it. The other day I felt like a King, ripping into a roasted chicken and throwing the skin to the dog. My dog thinks this new craving is a wonderful thing. It must have been quite the sight. We ate half a chicken! Go figure. I also take vitamins, Fish Oil, and CoQ10.


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Links:
Please consult your doctor before making changes to your diet or trying any complementary therapies. Foods and herbs may interact with medications you are already taking and it is important for your doctor to have all the information he/she needs to best address your condition.

Green Tea and Werner Hunstein’s experience
Bromelain in Pineapples from Univ. of Maryland
University of Maryland’s Amyloidosis and Complementary Medicine page