I was reading an article today from the Myeloma Beacon about supplements and how they might help or hinder treatment for a condition like amyloidosis:
It seems that supplementation is very tricky when you have amyloidosis. Are your doctors counseling you about supplements? Which supplements seem to be helping you?
Green Tea seems to be one of the things that is discussed at many of our support group meetings. There is actually an ongoing clinical trial in Italy for EGCG. The aim of the study is to assess whether treatment with EGCG increases the rate of cardiac response in patients with AL amyloidosis who completed chemotherapy. http://www.clinicaltrials.gov/ct2/show/NCT01511263?term=egcg+and+amyloidosis&rank=1
BUT, one of the drawbacks to EGCG is that you cannot take, or drink it while taking Velcade. The supplement can counteract or reduce the effectiveness of the Velcade. Grapefruit is another thing that you must avoid when taking most chemo drugs. It is always best to confer with your doctor or pharmacist before adding any type of supplement, herbal remedy or vitamin. Curcumin is also talked about widely, but again, ask your doctor first. While MM and AL sometimes go hand in hand, the AL is what causes the most problems because of the organ involvement and edema issues. Kidney problems can also add to the mix and one must be careful not to put a strain on an organ that is already compromised. The best mantra is to always check with your doctor first!!
Excellent advice, ga_peach. Thanks!
I noticed that the University of Maryland Medical Center website has some dietary and supplement guidelines that might make a useful starting point when talking to doctors about diet and nutrition:
Does current research indicate that limiting or even eliminating meat consumption may be helpful to those with amyloidosis, ga_peach?
I have been told by several Amyloid specialists that patients do not need to limit or eliminate meat from their diets! However, those that have compromised kidney function may need to limit their daily protein intake. I was given the ballpark number of 40 grams daily by a Mayo oncologist but each patient should also check with their nephrologist. Protein is essential for maintaining muscle mass and strength, so if the patients can tolerate eating meat, they should try to eat lean meats when possible. We actually discussed the use of supplements with a Mayo nephrologist at our support group meeting yesterday and because this disease can effect each patient differently, it I always best that they talk with their doctors and a nutritionist at the hospital before taking anything! As you can read in that article, many of those supplements cause thinning of the blood. Since amyloid patients already have an increased risk of bleeding, extreme caution should be used. Granted those patients that are taking imids as their chemo will need to be on some type of anti coagulation to help prevent blood clots but there again, that is closely watched by their doctors. According to yesterdays discussion, a well balanced diet that is low in sodium is the way to go. Some patients also need to monitor their potassium intake so certain fruits must be avoided.
I looked at the references that were used for this article and out of 24 cited, only 5 are from 2010 and later. Some are 13 years old!!! Treatments have changed drastically since most of these were written and most of the novel agents that are now used to treat amyloid patients have contraindications for many of the items listed. Perhaps I need to write to the U of M and ask them to update this article to reflect real time treatments. I will be in Maryland in two weeks for our support group meeting there and we may discuss this topic with the Mayo doctor that will be our guest speaker.
Thanks for clarifying the information, ga_peach -- it just goes to show that even medical groups may not have correct information on their sites. I'm glad I asked, so I could learn from your response. Yes, please do write U Maryland and tell them it's time to update. I have done the same for several avm sites that are out of date.
was wondering about protein and eating meat..I basically was told not too each very much meat due to amyloidosis in my kidneys but had heard also from other sources it was ok...In my case due to how amyloidosis has affected my sense of taste most meat and fish turn me off so problem solved. ga_peach if I am not mistaken you would know me as amyredbaron on another amyloid support site I just joined...small world
Welcome to this group too Mike. I am on two other groups as well! When the kidneys are involved it is true that you need to cut back some on the protein, but not completely because you need it to help maintain muscle mass. Keep in mind that meat is not the only source of protein....beans, tofu, eggs are some other choices along with protein drinks such as Premier Protein, Ensure, etc. If your potassium levels are high you would need to read the labels of the drinks to make sure you didn't overload yourself. I know some amy patients that have survived on ice cream while they could not tolerate more solid foods. You do what you have to until your system has a chance to recover from the chemo (if that was the cause of the loss of appetite).
good advice again ty but do have a strange digestive system...Ensure is like dynamite in my colon to put it politely..know it is great for many people....Dietician does help me with other sources of protein..turnups, sweet potatoes, eggs, whey powders..As for potassium, my levels are low so am on pills along with magnesium. Sure do read labels. Loss of appetite was due to chemo mostly but some is from amyloidosis, number of duodenal ulcers..(easy to become nauseous ) As for when I could not eat solid foods to speak of, puddings, soups, applesauce etc. kept me going for quite some time. Daughter is a vegetarian so she helps with some ideas too...Anyway thanks again..mike