Chicken or the egg?
After a severe bout with e-coli sepsis which required hospitalization, I was diagnosed with multiple myeloma in September 2010 with a confirmation from a bone marrow biopsy in November 2010. Went through the novel protocol (dex, Revlimid, Velcade), although I stopped the Velcade after the first round because I couldn't handle the neuropathy. Remission by March 1, 2011; M-spike 0. But at that point I was fed up with chemo and wasn't sure I would survive another round. The dexamethasone alone made my type 2 diabetes all but uncontrollable and gave me very weird highs.
I began taking an alternative non-toxic metabolic cell cleanser with high ant-inflammatory properties. My oncologist was willing to test me every three months to monitor my progress. My M-spike began creeping back up. Out of the CRAB list I had anemia and very, very minor kidney issues. No bone lesions in spite of breaking my hip through falling and having back problems after the leg healed 5/8" shorter which threw my back muscles out (a heel lift went a long way to relieving the pain). The point is I had more scans none of which showed lytic lesions. Thus far I haven't experienced any bone pain.
January 2014, I saw the doctor who was prescribing my bio-identical thyroid. He requested a serum ferritin level along with other blood work. He pointed out that my levels were at least twice what they should be and suggested I look into hemochromatosis.
That sent me down the rabbit hole to a genetic blood test for hemochromatosis. The result came back as "only" a carrier. (My mother also tested as a carrier for the same gene --hemochromatosis is passed on genetically for the most part -- she appears to be asymptomatic. My dad, dead of melanoma, and only sibling, dead of cervical cancer, are gone and can't be tested). The iron websites recommend carriers not ignore the possibility of disease. There are quite a few more esoteric gene mutations that are still being studied and are not looked for on standard hemochromatosis genetic tests.
One day a couple months ago on a whim I googled 'Multiple Myeloma and Iron'. Here's what I found:
VanderWall et al., "Iron in Multiple Myeloma," Critical Reviews in Oncogenesis, 2013
The gist of this 2013 research article is that it is beginning to look like one of the effects of hepcidin going wackadoodle (yeah, yeah, serious medical term) may cause the onset of multiple myeloma. (Hepcidin working properly also keeps the e-coli in your gut in check, there is always some present). Hepcidin is a peptide hormone produced in the liver-if you have read any of the more intense medical books about multiple myeloma it is what used to be called LEAP 1 & 2. Hepcidin was identified and named in 2000.
The article discusses the problem of ACD (anemia of chronic disease). The traditional approach to iron overload is phlebotomy through either regular blood donation or prescription blood draws. With ACD these blood draws are not possible as they lower hemoglobin too far for safety in those who are anemic.
So is multiple myeloma an iron disorder that leads to yet another cancer or is it a cancer that can be ameliorated or even (have mercy) cured by lowering serum ferritin levels until hepcidin starts behaving normally again (with or without chemotherapy)?
Chicken or the egg?
There is a great deal of information about iron metabolism at irondisorders.org and hemochromatosis.org.
Things I was surprised to find out about iron:
- It feeds cancer as effectively as sugar maybe better
- Too much circulating in your blood (serum ferritin) acts as a rusting agent in your body
- It creeps up on women after menopause (menses effectively gets rid of excess iron regularly with the blood loss)
- The body, in an attempt to avoid damage, stores excess iron in many places resulting in a high incidence of arthritis, hypothyroidism and diabetes (too much iron in the pancreas interferes with the uptake of insulin), irregular heart beats, a variety of liver diseases, many other problems and may be the hidden issue in dementia and Alzheimer's (iron lodges in the brain generally as well as in the pituitary)
- The iron folks recommended serum ferritin levels lower than the high end of normal (for women 25-75%) [some lab levels for normal top out at 150, some top out at 300]
- You can be anemic and have high serum ferritin levels
- The iron that accumulates in the body is primarily heme iron found in meats (red/beef, fowl, pork, fish-salmon being surprisingly high in iron, shell fish; while iron that comes from plants is used in metabolism but isn't stored
- Iron is a nutrient and necessary for life, but too much is not good for you
- Some of our processed food is iron-fortified (more label reading)
I stopped taking the iron supplement immediately and began looking for another way to lower my serum ferritin. The first supplement I found was lactoferrin. Then I read the books published by the folks at irondisorders.org. There is a book for patients and one for doctors (woefully out-of-date). There is also a cookbook with suggestions for lower heme-iron eating and combining heme food with food that binds iron (milk and eggs are two). The iron folks being strictly medical establishment do not discuss / recommend any of the supplements I am talking about. The 2013 medical research article above does discuss the researchers' efforts with curcumin as an iron-binding chelating agent to escort excess iron out of the body.
I last saw my hem/onc near the end of April 2014. My M-spike has held steady at 2.2 for a year. The serum ferritin level on my iron panel was down to 140 (still not under normal). She asked me what I needed her for! She considers me stable for now and suggested she see me in another six months rather than the 3 month intervals we had been at.
The following bind iron out of the body through the intestines ( I found some have been discussed on this forum but not for their iron binding qualities):
quinine (tonic water, but check that the quinine is real)
lactoferrin
curcumin (a formula that doesn't break down in the stomach)
green tea extract
berberine
There are probably more. The dosages are variable. I feel I am wandering in no man's land. My current plan is to start getting iron panels every 30 or 60 days through my naturopath to monitor my hemoglobin and serum ferritin to see what progress I am making. Being my own guinea pig. I would be just as happy to deal with an allopath but I can't find any that impress me as the least bit knowledgeable. Even though my naturopath isn't especially expert on hemochromatosis he is willing to explore and work with me as opposed to some of my other physicians who have been downright condescending and rude about this, mostly I believe to hide their own ignorance.
One of the groups who also have problems with iron overload who can't reduce it with blood draws is the people who have beta-thalassemia. The disease is treated with blood transfusions but with each transfusion comes more serum ferritin. The thalassemia population is much larger than those of us with multiple myeloma. There is much research looking for a way to counteract the iron overload for the thalassemia folk. There are iron chelation drugs being used in Europe that are not in common use in the USA. These chelators as well as those in use in the USA, of course, still have other side effects. Let's hope the thalassemia research helps multiple myeloma patients as well.
Heparin stripped of its anti-coagulant properties is high on the list of possible ways to suppress or regulate hepcidin. Heparin has such a long history of safe use and few side-effects that it looks like a great candidate if the developers can make enough $$ from it (it is out of patent now). And yes that was a small snark about big P. One of the encouraging things coming out of the thalassemia studies is that there is evidence that iron that has already accumulated in organs may be not be permanent. Heart studies are showing that iron accumulation in the heart can be reversed. The detection of iron in the heart requires special scanners-somewhat experimental. Iron may be one of the culprits responsible for A-fib. Too much or too little iron (hemochromatosis includes both) masquerades as many other diseases.
One catch-22 aspect of hemochromatosis is that the disease falls under so many different medical specialties -- gastroenterology where it affects the liver, hematology, endocrinology. The current lack of knowledge from one specialty to another and in general practice is appalling, especially considering that the iron folks say that 1 in 250 people have hemochromatosis. One Japanese article speculated that iron is going to be the up and coming health concern of the immediate future/next 10 years.
Here's another fun catch-22. Iron panels used to be the norm until one of Lab Corp's subsidiaries decided to charge for them even when they weren't requested. As a result of the scandal in 2009 iron panels were taken off the standard CBC you would normally received from your PCP. Making hemochromatosis, a very common disorder, even more difficult to catch and diagnose. (Although this may sound like conspiracy, I got it from the iron folks.)
Hemochromatosis may not be only collateral damage it may turn out to be the point of origin.
