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Alcohol and multiple myeloma treatment

by Castaway on Wed Sep 17, 2014 12:17 pm

Well, I read an older post here on the Beacon about alcohol and multiple myeloma treatments.

When I was first diagnosed in January 2014, I decided that I would not consume any alcohol during my treatments. My reasoning was that I wanted to see what my treatments were going to accomplish without any alcohol or supplemental vitamins possibly getting in the way. That way, I would have a base for my treatments.

My wife and I would usually have a glass of wine. My drink of choice before my diagnosis was a Captain and Coke. My wife works at a local hospital in emergency admitting (she sees everything ). It's very high stress for her, so I guess the glass of wine takes the edge off. She still has her glass of wine after getting home, but I have my large container of water.

We recently went to a small town near us for the day, and we went to a western-type restaurant. Well, I had a killer linguica sandwich with some home made beans and salsa. Sooo good. We both had two glasses of wine, also very good. Since January, I might have had a total of 4 or 5 beers and maybe three or four glasses of wine.

Alcohol by itself doesn't taste the same since I started treatment. With food it really was a treat. It's nice to sit down at a meal and just talk and enjoy a glass of wine, but mostly our company together. But I feel kind of bad for drinking any alcohol at all.

My concern is the mix of alcohol and treatments in general. I only have a glass of wine when I am in my week off from Revlimid, if at all. My treatments now have changed from Revlimid to Velcade.

My oncologist says an occasional alcoholic beverage is ok but none would be better. Just curious how others feel about this.

Castaway

Castaway
Name: George
Who do you know with myeloma?: just myself
When were you/they diagnosed?: 1/24/14
Age at diagnosis: 62

Re: Alcohol and multiple myeloma treatment

by coop223 on Wed Sep 17, 2014 1:09 pm

Before I used to have a Jack n Coke. Labs stayed good. Decided to stop them a month ago. Last week went and saw my doctor. Kappa free light chain went up to 80 and calcium was higher. Kappa free light chain had been around 32 during my afternoon cocktail time for the prior year. Go figure, might go back to my afternoon drink if my labs in two weeks are still high.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57

Re: Alcohol and multiple myeloma treatment

by NStewart on Wed Sep 17, 2014 1:26 pm

I don't drink very often, but almost always have a glass of wine or a cocktail when I go out to dinner. Once in a while, I'll have a little more, but it is very rare. I haven't paid any attention to whether I should be consuming alcohol, or not, since diagnosis. I never did drink much anyway.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Alcohol and multiple myeloma treatment

by Blackbird on Wed Sep 17, 2014 2:31 pm

I gave it up during my induction period and up through about day 60 after my SCT. Since then, I have a couple of beers per week, and maybe a Captain and Coke. My oncologist doesn't seem to be overly concerned with imbibing on occasion. Just like everything else (except, of course, tobacco), drinking alcohol in moderation does have some positive aspects to it.

Blackbird
Name: Rick Crow
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb, 2013
Age at diagnosis: 53

Re: Alcohol and multiple myeloma treatment

by Castaway on Wed Sep 17, 2014 2:45 pm

Nancy,

Thanks for your input. Your first comment that "I don't drink very often" brought back some memories of my jokester father-in-law who passed away a few years back. One of his comments used to be "I don't drink that often, only when I'm by myself or with someone."

I guess I shouldn't worry about a glass of wine or cocktail occasionally. I bought a bottle of Pinot Grigio about a month ago. I had one glass and used a vacuum / cork to seal it. I forgot it was in the fridge. My daughter, son-in-law, and the grand kids are coming up for the weekend. I might just have some of that wine.

Coop,

Thanks for your your response. I hope your numbers get back down. You never know what reacts to the drugs we are all taking. It seems like each person has a different response to treatments or side effects. Maybe you have something there with the JD&C.

One other thing, do your labs always show your kappa free light chains? I am not up to par on reading my labs all the way, but I don't see any reports for that on mine. The only thing that I see is an IgA / kappa test that shows A/G ratio of 1.5. I have to do my blood draws at our local hospital, and they use more than one lab. It seems like the readings and references / ranges are different at times.

Best of luck on your next labs,
Castaway

Castaway
Name: George
Who do you know with myeloma?: just myself
When were you/they diagnosed?: 1/24/14
Age at diagnosis: 62

Re: Alcohol and multiple myeloma treatment

by coop223 on Wed Sep 17, 2014 3:58 pm

My labs always have kappa and lamba free light chains and the free light chain ratio. Ann requires it on my tests.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57

Re: Alcohol and multiple myeloma treatment

by Mike F on Wed Sep 17, 2014 6:35 pm

I am someone who greatly enjoys a glass of wine or a cocktail in the evening, and for the most part I have not stopped that since getting diagnosed. I've had my daily drink throughout the process with no ill effects on me or the treatment results. I did quit shortly before I went through stem cell mobilization and did not have anything to drink until about a week after I got out of the hospital after my stem cell transplant. (I figured I didn't miss anything. The hospital food was not very good, so lord knows what kind of wine they'd have served!) None of my doctors have had any issues with this.

Mike F
Name: Mike F
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 18, 2012
Age at diagnosis: 53

Re: Alcohol and multiple myeloma treatment

by Tom in MI on Thu Sep 18, 2014 3:12 pm

I had my ASCT at Karmanos in 2007.

All patients were given a large, loose-leaf binder that explained everything about the transplant process. It stated in the manual that moderate alcohol consumption was okay post transplant.

For men, moderate consumption was defined as two beers, two cocktails, or two glasses of wine daily.

Hope this helps.

Tom in MI
Name: Tom in MI
Who do you know with myeloma?: Self
When were you/they diagnosed?: 2007
Age at diagnosis: 58

Re: Alcohol and multiple myeloma treatment

by antelope1225 on Thu Sep 18, 2014 5:46 pm

Hi George.

You wrote: "I have to do my blood draws at our local hospital, and they use more than one lab. It seems like the readings and references / ranges are different at times."

My oncologist changed labs.The old lab had this as normal:

Kappa free light chains 0.33-1.94 mg/dL
Lambda free light chains 0.57-2.64
Kappa/lambda FLC ratio 0.26-1.65


New lab has

Kappa free light chains 3.30-19.40 mg/dL
Lambda free light chains 5.71-26.30
Kappa/lambda FLC ratio 0.26-1.65


So the kappa/lambda FLC ratios are same, but the kappa and lambda FLC levels are measured with range one decimal different.

antelope1225
Name: Cathy1225
Who do you know with myeloma?: Myself
When were you/they diagnosed?: May 25 2012
Age at diagnosis: 55

Re: Alcohol and multiple myeloma treatment

by TerryH on Thu Sep 18, 2014 6:37 pm

Cathy,

I think if you look closely at the reference ranges from your new lab, you'll probably find that the units they use for their reference ranges are not "mg/dL", but "mg/L". If that's not what is listed, then it is what should be listed.

A deciliter (dL) is one tenth of a liter. So there will be a factor of 10 difference, or one decimal point, in reference ranges quoted using mg/L and mg/dL. The reference ranges for mg/L will have numbers that are 10 times larger than the ranges that use mg/dL.

This issues also comes up when you see people from different countries quoting their M-spike levels. In the U.S., it's common to quote M-spike levels in g/dL. In most other countries, the M-spike (paraprotein, myeloma protein, etc.) often is reported using in g/L as the units.

That means that M-spikes from other countries look really, really big at first to someone from the U.S., until you make a mental adjustment to divide the numbers by 10 to get the U.S. equivalents.

TerryH

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