[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Sat Aug 16, 2014 11:56 am

Hi Cassy!

I have always wanted to go to Spain, it looks like such a beautiful country. My daughters did a foreign exchange when they were in high school - one went to Germany and one went to Austria, and I am still "pen pals" with the mother of the girl from Austria. You seem to speak and write English perfectly to me.

I have a ketone blood monitor but the strips are very expensive - they are $5 each! So, I only do it a few times per week and the rest of the time I use the ketostix urine test. They seem to work just as well except they don't give an exact number - just "trace" - which in me is about 0.5 and that is my most common reading with the blood ketone monitor, too. The blood ketone monitor is a "Precision Xtra" by Abbott.

I was diagnosed just after my 55th birthday and I am now 57, so we are close to the same age.

Since my kappa free light chains were in the normal range for the first time, and my doctor had taken me off Revlimid as I was fighting the kidney infection, I decided to take another month off the Revlimid and see what my blood test shows at the end of this month.

Like you, Cassy, I only take exactly what my 3 doctors (oncology, nephrology, infectious disease) have all 3 approved. I take:

400 mg Acyclovir (antiviral) twice daily - morning and evening (from Oncologist)
650 mg sodium bicarbonate (my kidney doctor has me on those because my blood has a tendency to get too acidic. I used to take 1/4 tsp baking soda dissolved in water to get the same dose)
Omega 3 (360 EPA, 240 DHA)

During the day I take 2 probiotics (Culturelle and Align or similar product from Sam's Club or Walgreens.) because I had C-diff for 6 months.(Infectious disease doctor approved these)

At dinner I take:

Cranberry concentrate (which has 700 mg cranberry) (My kidney doctor approved these).
Iron (325 mg) ferrous sulfate once a day (from kidney doctor)
Mag 64 D.R once a day - this is magnesium like Slo Mag (from kidney doctor)

Vitamin D 50,000 IU once a week - (from kidney doctor). I wonder if 20 min per day in the sun would do the same thing?

I will have to look up curcumin, sounds interesting, but like you, I do not take anything - not even a vitamin or herbal tea - without checking with my doctors first.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Sat Aug 16, 2014 12:10 pm

Hi Alex.

I respect your caution about getting off the track on alternate treatments for myeloma for your Mom.

I don't think it would be well received if you told her to stop eating all carbs - I think that is a very personal decision and not everyone is willing to do it.

Nice that you are interested in multiple myeloma for your mother's sake.

Only reason I have argued back pretty strongly against you on this is because of my own results. When I was diagnosed my kappa free light chains were at 940 and even after the bone marrow transplant they were creeping up and were up to 65 or so. Now they are 14 and in the normal range! You can't argue with success and it is just from changing my diet.

That is worth the sacrifice of sweets and carbs for me.

[TerryH]

Re: Ketogenic diet and multiple myeloma

by TerryH on Sat Aug 16, 2014 12:13 pm

Cathy,

Thanks for the updates.

Are you taking Revlimid right now and, if so, when did you start taking it, and what has been the dose that you're taking?

[Jerseygyrl]

Re: Ketogenic diet and multiple myeloma

by Jerseygyrl on Mon Aug 18, 2014 8:30 am

Diets, especially ketogenic diets, are a controversial subject. That being said, as long as there are 2 people on this earth, they aren't always going to agree.

I've spent the last 10 years and 4 months on a ketogenic diet. I don't eat grains. No bread, pasta, rice, potatoes. Most people don't understand this nor do they agree with it. Bottom line is, it has worked for me. I've read several articles about folks with multiple myeloma and it seems to work well for them as well. Its difficult for people to wrap their brain around a diet that eliminates all grains ... even the so-called "healthy" ones. We've been so brainwashed that grains are healthy and that fats are bad.

The enemy is and continues to be inflammation. What causes inflammation? A poor diet. Packaged, processed and prepared foods, fast food all laden with sugar, harmful oils, food additives and a lot more. Sugar is highly addictive and highly inflammatory. Does this mean you should eliminate sugar entirely? No, but you should try to limit consumption and when you want something sweet, reach for a piece of fruit instead.

Wheat is another offender. One of the worst things you can put into your body is genetically modified wheat. Gluten is another culprit. Gluten is highly inflammatory. Alcohol is on the list as well. It contains a lot of sugar and it also places a burden on your liver. Alcohol should be avoided or used in moderation.

So, what's left to eat you may be asking. Lots! You may be pleasantly surprised.

Like I said in the beginning of this post, as long as there are 2 people on this earth, they aren't always going to agree. I urge people to do their own research.

Cathy, keep up the great work! You're doing awesome!

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Mon Aug 18, 2014 3:38 pm

Hi Terry H.

I am actually NOT taking Revlimid right now - and I had a blood test this morning and will know the results next week and I will post them.

I was prescribed 5 mg every other day (and was taking them) from 3 months after my BMT until the summer. Than it was increased to 10 mg every other day - there were no breaks from it and that is lower than some people take because my kidneys were in such bad shape. But, I was sick all the time.

So, my primary oncologist (I LOVE HIM) asked the doctor in Denver if I could reduce back to 5 mg every other day. The doctor in Denver said you should take as high a dose as you can tolerate. My oncologist here said, "If you are sick all the time, I would argue you are not "tolerating it" very well".

So I went down to 5 mg every other day in about December, I think. I stayed with that until I got this bad kidney infection (no bladder infection) and then my oncologist told me to stop taking the Revlimid until I got over infection because my Absolute Neutrophil Count was too low.

Then I had this amazing blood test where my kappa free light chains were down to 15 and he asked ME what I wanted to do! I said I thought I would wait until the kappa free light chains start to go back up. So, I will be eager to see what the results are.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Mon Aug 18, 2014 3:46 pm

I know some who have written think that all the doctors would be telling their patients about this if it really "worked" like I claim it is for me, but I was driving back from the lab this morning and thinking about it.

1. Multiple myeloma is pretty rare.
2. Light chain deposition disease (LCDD) is a small fraction of those who have multiple myeloma.
3. Because LCDD is so rare, they send my blood off to have kappa free light chains measured - that is why I have to have blood drawn a week before appointment.
4. Those kappa free light chains are VERY precise - I think most people with cancer do not have such a precise reading on their cancer. I am not sure what the "cancer markers" are for other people, but if you have ever looked at a PET scan, it doesn't look like a very precise way to measure your cancer.

So, I am in an unusual situation where my cancer is more precisely measured than most. Maybe ketogenic doesn't work for other people with cancer - I have no idea, but how could I not tell other cancer patients about this?

Kappa free light chains were 940 when diagnosed
I was up to 65 after bone marrow transplant after 1 year of taking Revlimid
I was down to 15 (which is NORMAL) last month after 4 months of eating ketogenic diet!

That is worth telling people about.

[antelope1225]

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Mon Aug 18, 2014 3:49 pm

Hi Jerseygyrl.

Inspiring that you have eaten ketogenic diet for 10 years!

I am eager to look up your links

Thanks.

[Cassy66]

Re: Ketogenic diet and multiple myeloma

by Cassy66 on Mon Aug 18, 2014 4:48 pm

Hi Cathy!

I have been avoiding gluten, wheat and grains since I know I have myeloma. A little bit like the paleo diet. My problem is fruits. I love fruits and eat lots of them. Reading Dr. Bernstein' book I know now they are to be avoided.

Also, in my research for things to eat, I came across a wrap made with coconut meat. As weird as it is, I loved it. It is called "Paleo Wraps".

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?

All the best!

[TerryH]

Re: Ketogenic diet and multiple myeloma

by TerryH on Mon Aug 18, 2014 4:57 pm

Thanks for your reply, Cathy.

I'm still not exactly sure on the timeline, but it seems like you went on the ketogenic diet you've been following in late March of this year, and you were still on Revlimid maintenance at the time. Then you went off of Revlimid maintenance sometime in maybe June, or early July?

It would be great if you could post here sometime your monthly free light chain numbers, with dates, for about a year before you started your diet, and then since you started your diet, and include the dates when you changed things (like changed the dose of your Revlimid, started your diet, stopped the Revlimid, etc.). If you did, I'd even graph the results for you, if you want.

[Cassy66]

Re: Ketogenic diet and multiple myeloma

by Cassy66 on Mon Aug 18, 2014 6:18 pm

Kim,

Those links are really good!! Thank you!