As I patiently wait for our October 22nd appointment with my husbands oncologist, I have a question. My husband enjoys a drink at night, most of the time a vodka and tonic, usually just one and sometimes a smaller second one. My husband is not an alcoholic by any means. He just enjoys a drink on our deck watching the river go by in the later afternoon.
Now, understand, my husband has no aches and pains and the only prescription drugs he takes are for high blood pressure, and that is under total control.
So what is your opinion?
I am sure after we get the diagnosis and the plan it will change, but since he is not under any medication yet for the myeloma, well, what do you guys think?
Forums
Re: Questions about alcohol
My husband was the same way. During the first week of his treatment he had 2 beers and that was it. He found that the treatment had changed the taste of it. Told me it tasted as though he was drinking soapy water. I didn't mind though because his doctor had advised him against partaking in alcoholic beverages lol.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Questions about alcohol
Mildred,
What exactly is your question? Do you want to know if it's okay for your husband to drink alcohol before he gets his diagnosis?
What exactly is your question? Do you want to know if it's okay for your husband to drink alcohol before he gets his diagnosis?
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Lady in Red
Re: Questions about alcohol
Mildred,
The topic of alcohol and multiple myeloma was addressed in two previous Beacon forum threads:
"Alcohol and multiple myeloma treatment," discussion started Sep 17, 2014.
"Red wine, alcohol, and multiple myeloma," discussion started Nov 15, 2013.
We hope you find some useful information in the above threads.
The topic of alcohol and multiple myeloma was addressed in two previous Beacon forum threads:
"Alcohol and multiple myeloma treatment," discussion started Sep 17, 2014.
"Red wine, alcohol, and multiple myeloma," discussion started Nov 15, 2013.
We hope you find some useful information in the above threads.
Re: Questions about alcohol
When I was going through my induction therapy in 2011, I did not drink any alcohol. It did not seem like a good idea to me. The treatments also affected my appetite and changed the taste of food or made it completely tasteless. The few times I took a sip of somebody else’s drink it did not taste good.
While talking about future treatment options including a second stem cell transplant and clinical trials during my latest follow-up visit with the doctor who did my stem cell transplant, he made a point of making sure I took good care of my kidneys.
I told him my kidneys had recovered with 100% function, but he told me that I was making bad assumption. Just because I have a lab test showing normal kidney function that does not mean my kidneys are not damaged.
I believe he said your kidney can be nearly 2/3 destroyed and still show normal function on a lab test. Even normal healthy people lose a little bit of their kidney to permanent damage every day. He said that if my kidney function was poor, then he would not be able to do a second transplant, and that any sign of bad kidney function could likely preclude me from clinical trials.
Apparently the drug companies do not want pre-existing kidney damage to be associated with their drug as side effect, so they screen out anyone who has any signs of abnormal kidney function and even a prior history of kidney problems.
So my take away from all of this is that a lot of the drugs prescribed to myeloma patients are hard on the kidneys, which filter them out of the blood. This is the reason that Velcade is administered slowly by IV, same with the biphosphophate drugs. And then there is melphalan given during a SCT.
All this adds up to some permanent kidney damage even though my labs show normal function. Probably not a good idea to add alcohol to these drugs during these treatments. And who knows just how much more kidney damage I can take before my labs start showing adverse effects?
Another important reason: control sugar intake and keep blood sugar in the normal range to avoid diabetes. I now understand why my SCT doctor routinely runs blood sugar labs. Something to think about when making a decision to drink alcohol or not.
While talking about future treatment options including a second stem cell transplant and clinical trials during my latest follow-up visit with the doctor who did my stem cell transplant, he made a point of making sure I took good care of my kidneys.
I told him my kidneys had recovered with 100% function, but he told me that I was making bad assumption. Just because I have a lab test showing normal kidney function that does not mean my kidneys are not damaged.
I believe he said your kidney can be nearly 2/3 destroyed and still show normal function on a lab test. Even normal healthy people lose a little bit of their kidney to permanent damage every day. He said that if my kidney function was poor, then he would not be able to do a second transplant, and that any sign of bad kidney function could likely preclude me from clinical trials.
Apparently the drug companies do not want pre-existing kidney damage to be associated with their drug as side effect, so they screen out anyone who has any signs of abnormal kidney function and even a prior history of kidney problems.
So my take away from all of this is that a lot of the drugs prescribed to myeloma patients are hard on the kidneys, which filter them out of the blood. This is the reason that Velcade is administered slowly by IV, same with the biphosphophate drugs. And then there is melphalan given during a SCT.
All this adds up to some permanent kidney damage even though my labs show normal function. Probably not a good idea to add alcohol to these drugs during these treatments. And who knows just how much more kidney damage I can take before my labs start showing adverse effects?
Another important reason: control sugar intake and keep blood sugar in the normal range to avoid diabetes. I now understand why my SCT doctor routinely runs blood sugar labs. Something to think about when making a decision to drink alcohol or not.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Questions about alcohol
Hi Eric.
I have been hoping you are doing well. You had mentioned a month or more ago that your doctor was moving you up to 25 mg Revlimid to try to get back into remission. Has that helped?
I agree with you that some of the drugs are very hard on the kidneys. When I was first diagnosed, my kidney function was about 31% (eGFR). After using Velcade, dex, and thalidomide, my urine turned brown and my kidney function went down to about 20%
. I asked my nephrologist if it was blood in my urine and after a test said I did not have blood in my urine, he thought it was a byproduct of one of the drugs I was taking.
After the stem cell transplant, my kidney function improved to about 33% and now it is up to around 41%.
Mildred, I didn't drink at all for the first year after I was diagnosed (I think my doctors told me not to drink because of the drugs), but I drink some now. I drink about an ounce of gin with sugar free tonic or have a glass of wine. I haven't noticed any problem with any of my blood tests from drinking those.
Cathy
I have been hoping you are doing well. You had mentioned a month or more ago that your doctor was moving you up to 25 mg Revlimid to try to get back into remission. Has that helped?
I agree with you that some of the drugs are very hard on the kidneys. When I was first diagnosed, my kidney function was about 31% (eGFR). After using Velcade, dex, and thalidomide, my urine turned brown and my kidney function went down to about 20%
. I asked my nephrologist if it was blood in my urine and after a test said I did not have blood in my urine, he thought it was a byproduct of one of the drugs I was taking.After the stem cell transplant, my kidney function improved to about 33% and now it is up to around 41%.
Mildred, I didn't drink at all for the first year after I was diagnosed (I think my doctors told me not to drink because of the drugs), but I drink some now. I drink about an ounce of gin with sugar free tonic or have a glass of wine. I haven't noticed any problem with any of my blood tests from drinking those.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Questions about alcohol
Thank you very much for your reply, we are meeting with my husband's oncologist Wednesday with a long list of questions.
God Bless
God Bless
Re: Questions about alcohol
Antelope1225 wrote:
Cathy,
After one cycle of Revlimid and 40 mg dexamethasone once a week, my kappa free light chain level went down to 7 mg/L where the normal range is 3 - 19 mg/L. My previous lab a month earlier was 44 mg/L. So it worked really well.
What I am on now is the same as what is given during induction therapy, so it is a pretty conservative and aggressive approach, maybe more than is necessary. I am on my second cycle this month. I am surprised I made it this far without getting really sick from low WBC. I had problems last year with 15 mg Revlimid and had to stop. The biggest challenge has been 40 mg dexamethasone, with all its challenges which is well discussed on the Beacon.
So far so good though, I am still working 40 hour weeks. The flex time I am allowed is a real help. I worked 12 hours today and will tomorrow as well. This allows me to do short hours or not come in at all later in the week when the crash comes.
Hi Eric.
I have been hoping you are doing well. You had mentioned a month or more ago that your doctor was moving you up to 25 mg Revlimid to try to get back into remission. Has that helped?
Cathy,
After one cycle of Revlimid and 40 mg dexamethasone once a week, my kappa free light chain level went down to 7 mg/L where the normal range is 3 - 19 mg/L. My previous lab a month earlier was 44 mg/L. So it worked really well.
What I am on now is the same as what is given during induction therapy, so it is a pretty conservative and aggressive approach, maybe more than is necessary. I am on my second cycle this month. I am surprised I made it this far without getting really sick from low WBC. I had problems last year with 15 mg Revlimid and had to stop. The biggest challenge has been 40 mg dexamethasone, with all its challenges which is well discussed on the Beacon.
So far so good though, I am still working 40 hour weeks. The flex time I am allowed is a real help. I worked 12 hours today and will tomorrow as well. This allows me to do short hours or not come in at all later in the week when the crash comes.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Questions about alcohol
I am so glad to hear your kappa free light chains are n the normal range, Eric! Thank you for letting me know. My husband and I went hunting and I was not near a computer, but I thought of you often.
40 mg dex - ugh. That would be a huge challenge, especially since you are still trying to work a 40 hour week. When I was using dex, I knew I was not a very safe driver and I would talk to myself - "OK, stay in this lane, slow down or speed up, but don't change lanes" I probably shouldn't have been driving. Glad your work allows flex time.
My infectious disease doctor told me 4 places to avoid when my WBC count was especially low:
1. Schools - because of viruses
2. YMCA or other workout places - because of the staph
3. Hospitals - if you are not a patient
4. Nursing homes.
And he said to wash your hands 10x per day. They also had me get a flu shot even when my WBC count was pretty low - but you might check with your doctor first.
Hope this cycle has as good a results and you can avoid infections.
Hang in there.
C
40 mg dex - ugh. That would be a huge challenge, especially since you are still trying to work a 40 hour week. When I was using dex, I knew I was not a very safe driver and I would talk to myself - "OK, stay in this lane, slow down or speed up, but don't change lanes" I probably shouldn't have been driving. Glad your work allows flex time.
My infectious disease doctor told me 4 places to avoid when my WBC count was especially low:
1. Schools - because of viruses
2. YMCA or other workout places - because of the staph
3. Hospitals - if you are not a patient
4. Nursing homes.
And he said to wash your hands 10x per day. They also had me get a flu shot even when my WBC count was pretty low - but you might check with your doctor first.
Hope this cycle has as good a results and you can avoid infections.
Hang in there.
C
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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