[Jonah]

Re: Ketogenic diet and multiple myeloma

by Jonah on Mon Aug 18, 2014 6:37 pm

Here's a relevant article on the ketogenic diet written by a someone in the Integrative Medicine group at Sloan Kettering.

Donald Garrity, "The Ketogenic Diet in Cancer Control," The ASCO Post, March 15, 2014

The article, which is not very long, summarizes research that has been done related to the ketogenic diet and myeloma. It is, in many places, relatively positive about the existing research, although it regularly notes that the findings are rather preliminary.

However, the article also closes with these statements,

Patients may decide to pursue the ketogenic diet on their own, assuming that, since it is “only” a diet, it can do little harm. However, patients undergoing chemotherapy may be at risk for malnourishment due to the side effects associated with their treatment.16 Introducing a restrictive diet may be potentially harmful.

Patients who are tolerating cancer treatment well or who are on a break from treatment may also be at risk for harmful effects from a ketogenic diet. The concern here is that the longer-term effects of a high-fat, very-low-carbohydrate diet that maintains a state of ketosis are unknown.

Given the absence of solid data on the merits and potential negative consequences, patients should pursue this diet only via participation in a clinical trial.

I'm not sure I would agree that with the suggestion that the diet should only be carried out as part of a clinical trial. It does seem to make sense, though, to do it with careful supervision of a doctor, which is what Cathy seems to be doing.

[Jonah]

Re: Ketogenic diet and multiple myeloma

by Jonah on Mon Aug 18, 2014 6:41 pm

Cassy66 wrote: "I am a bit confused about the test you have for kappa free light chains. My free light chains were 15.53 before chemo and they were 2.52 after the fourth cycle, from a normal range of 0.33 to 1.94. Could this be another type of test?"

The numbers you are talking about are almost certainly the kappa / lambda free light chain (FLC) ratio, which is the ratio of your kappa and lambda FLC levels.

What Cathy has been posting about are her kappa FLC levels.

[Cassy66]

Re: Ketogenic diet and multiple myeloma

by Cassy66 on Tue Aug 19, 2014 7:13 am

Thank you Jonah for answering so quickly!

I am still learning about the cancer markers, but my last results from July 18 are

kappa free light chains 2.52 mg/dL
lambda free light chains 0.10 mg/dL
kappa / lambda ratio 25.20.

I should have new results today. I read it is important to pay attention to the kappa number because if the lambda is very, low the ratio will be high. I have the IgG kappa myeloma.

As per the same date my IgG was 2802 and my spike 2.02.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Wed Aug 20, 2014 2:54 pm

Hi Cassy and Jonah.

I bet doctors do not want to raise expectations that might set someone up for disappointment. My doctor did not even mention diet it until I asked him about it, and since then he has cautioned me that there is no proof that this is effective - I am only sharing MY personal experience here because it "works" for me. I am making no guarantees and I would hate to have someone suffer malnutrition or be set up for disappointment.

multiple myeloma is a tough road without any additional disappointments. But, if a body with cancer "acts" like a diabetic person (which some of the studies seem to indicate), then it makes sense that a diabetic diet helps.

I will be completely honest about my results - when they start going up, I will write it. Who knows, maybe the cancer cells will rebound more than they would have. I am simply sharing my experience.

I looked at the links Kim sent - I am pretty moderate in all the areas they recommend. I only drink 1-2 cups of coffee per day, have one alcoholic drink once in a while, have a little artificial sweetener - and I also have a bicarbonate of soda pill I take every day to keep my blood from becoming too acidic. So, I don't think I will restrict my diet more than it is - the trick is that I have to plan on living with this for the rest of my life, and if I feel deprived it will be harder.

Cassy, as for the kappa free light chain numbers - I noticed that my cancer center has used 2 different labs. One lab says the normal range is 0.33 - 1.94. If you follow that, my numbers were 94 at highest, then down after BMT, then gradually up to 6.54 and now down to 1.487.

The other lab says the normal range is 3.30-19.40. If you follow that way of measuring (just move the decimal over), my numbers would have started at 940, moved up to 65 and now are down to 14.87. So, I am not sure about which is right but it is clearly moving a decimal.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Mon Aug 25, 2014 8:54 pm

Just back from my oncologist. We agreed that I will take 5 mg Revlimid once a week as long as I stay in such a good remission. When my kappa free light chains (FLCs) go up, I will increase my Revlimid.

My kappa free light chains were in normal range for the 2nd month:

Kappa free light chains - (normal 3.30-19.40) mine = 12.23
Lambda free light chains (normal 5.71-26.30) mine = 12.98
Kappa / lambda ratio (normal 0.26-1.65) mine = .94

My WBC came up to 3.36
My ANC is about 1350
both of those are better than they were

My kidneys are still doing well:
Creatinine is 1.403093
Cr Clearance = 43.78

So, I am going to keep with my diabetic diet and taking Revlimid 1 x per week. My next appointment is in 6 weeks (Oct 6).

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Wed Sep 17, 2014 6:08 pm

Blood test September 16, 2014 for my appointment with nephrologist September 23, 2014. This blood test will not have my cancer markers (kappa free light chains).

I am still doing ketogenic diet. If I eat too many carbs, it makes my ketones drop below 0.5. If my blood ketones drop below 0.5, I can tell because I crave carbs. I do not crave sweets or carbs if my ketones are 0.5 or above. I need to order more ketone strips because I am almost out of them.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Thu Sep 18, 2014 7:22 pm

Important update on Artificial Sweeteners:

"Certain gut bacteria may induce metabolic changes following exposure to artificial sweeteners," Science Daily, September 17, 2014

Excerpt:

Artificial sweeteners -- promoted as aids to weight loss and diabetes prevention -- could actually hasten the development of glucose intolerance and metabolic disease, and they do so in a surprising way: by changing the composition and function of the gut microbiota -- the substantial population of bacteria residing in our intestines.

These findings, the results of experiments in mice and humans, were published September 17 in Nature.

Dr. Eran Elinav of the Weizmann Institute of Science's Department of Immunology, who led this research together with Prof. Eran Segal of the Department of Computer Science and Applied Mathematics, says that the widespread use of artificial sweeteners in drinks and food, among other things, may be contributing to the obesity and diabetes epidemic that is sweeping much of the world.

Here is a study that appears to provide evidence that artificial sweeteners, at least the most-common ones, are not safe!

The scientists gave mice water laced with the three most commonly used artificial sweet­eners, in amounts equivalent to those permitted by the U.S. Food and Drug Admin­istra­tion (FDA). These mice developed glucose intolerance, as compared to mice that drank water, or even sugar water. Repeating the experiment with different types of mice and different doses of the artificial sweeteners produced the same results -- these substances were somehow inducing glucose intolerance.

They wanted to understand how that happened. It seems to be the bacteria in the gut are changed by consuming artificial sweeteners.

First, they treated the mice with antibiotics that killed off a lot of bacteria in the gut. The glucose intolerance disappeared.

Then, they took some of the mice who had eaten artificial sweeteners and transferred the bacteria from their gut into mice that had not consumed the artificial sweeteners. The glucose intolerance was transferred!

If anyone is new to this thread, I am eating a ketogenic diet in addition to taking a little Revlimid and with my doctor overseeing this. It has brought my kappa free light chains down. My kappa FLC had been creeping up after SCT and were up to 65. Every month since March they have come down and have been in normal range 2 months (15 or so).

I had noticed I couldn't eat things like Atkins bars or they would bump my blood glucose up the next day. Yesterday I had a diet Dr Pepper (I don't usually have) and it messed with my ketones. So, I am back to using small amounts of agave and avoiding artificial sweeteners.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Wed Oct 01, 2014 7:37 pm

Hi Myeloma Beacon. I am keeping everyone posted about my experiment with a ketogenic diet.

I had a blood test on September 16th and had an appointment on September 23. However, the lab had contaminated my blood work and didn't tell me in time to have the testing redone . So I saw my nephrologist with no labs and redid his tests at the same time I had my blood work for my oncologist, which was last Monday, September 29.

Terry H had asked about my exact lab results. I found all my original lab reports so this is accurate. All KFLC numbers are mg/L.

My BUN, creatinine and eGFR were out of normal and getting worse from March 2010 until I was diagnosed May 2012.

May 2012 I had a biopsy of my kidney and was diagnosed with light chain deposition disease and multiple myeloma. My kappa free light chains were 950 mg/L. After the summer of Velcade, thalidomide, and dex, they were down to 35 on October 8, 2012. Oncologist took me off all chemo to get stronger for my auto SCT and my kappa FLCs bounced up to 408 by October 16, 2012.

I had the SCT in November 2012 and my kappa FLCs were down to 0.3 (below normal) on January 21, 2013. They gradually went up and were 24 on March 4, 2013, and then 62.9 by August 20, 2013. I started taking probiotics at that time and my kappa FLCs came down to 27.8 mg/L by Dec 2, 2013.

I started to cut out carbohydrates and test my blood glucose April, 5, 2014. April 28, 2014 my kappa FLCs were down to 25.4. After reading online articles about a ketogenic diet and cancer, I started measuring my ketones May 27, 2014 with a blood ketone meter at night and started eating some coconut oil every day. Goal is to keep ketones at or above 0.5. I only had my ketones below 0.5 seven days before my July blood test and never below 0.1.

July 21, 2014 my kappa FLCs were down to 14.87 mg/L (normal).

I kept ketones above 0.5 all except two days before August 18th.

August 18, 2014 my kappa FLCs were down to 12.23 mg/L (normal).

I kept my ketones above 0.5 all except seven days between August 18th and my blood test September 29th.

I will post what my blood work is on Monday.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Wed Oct 01, 2014 7:47 pm

One more thing Terry H asked about was what my dosage of Revlimid was during the last couple of years.

1. After SCT, in February 2013, I was put on 5 mg Revlimid every other day continuous cycle. My kidney are damaged, so that would be the equivalent of a higher dose of Revlimid for someone with healthy kidneys.

June 2013 my Revlimid was increased to 10 mg every other day.

October 2013, I took no Revlimid because I needed my immunizations and had been sick continually since being put on 10 mg every other day.

November, 2013 after immunizations I went back to 10 mg every other day. Sick constantly again, so went down to 5 mg every other day in December. Stayed on that until my kidney infection in June. I took no Revlimid in June and then when my kappa free light chains were normal in July, I asked if I could just take one 5 mg Revlimid per week. My oncologist said yes, that would be fine, as long as my numbers remain in the normal range. So, I will take one 5 mg Revlimid tonight and not another until next week.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Mon Oct 06, 2014 7:29 pm

October 6 - Got results of blood tests.

Kappa free light chains 16.21 mg/L
Lambda free light chains 15.58 mg/L
Kappa/lambda ratio 1.04

WBC 3.82

This is the third month in a row the kappa FLC number is in the normal range.