Hi Everyone,
I'm curious if anyone takes supplements and if so, which ones? Do you feel they've helped? Also, when do you take them? As I've read you shouldn't take them while on chemo.
Thanks,
Kim
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: Do you take supplements and, if so, which ones?
Regarding potential conflicts, you may want to read this article carefully, esp the notes at the end:
"Vitamin C Inhibits Anti-Myeloma Activity Of Velcade," The Myeloma Beacon, Nov 18, 2009
There are also studies that show that some supplements like curcumin can potentially increase the efficacy of drugs like Velcade.
There are several folks on this forum that simply avoid any potentially conflicting supplements on the days of (or the day before, of and after) chemo treatment.
So, basically, you are out in the wild, wild west without a lot of clear direction here. I can therefore see why your doc might suggest playing it safe and eliminating supplements during chemo treatment.
If you really believe in supplements, you may want to further investigate the above strategy of just eliminating their use around the day of chemo treatment.
"Vitamin C Inhibits Anti-Myeloma Activity Of Velcade," The Myeloma Beacon, Nov 18, 2009
There are also studies that show that some supplements like curcumin can potentially increase the efficacy of drugs like Velcade.
There are several folks on this forum that simply avoid any potentially conflicting supplements on the days of (or the day before, of and after) chemo treatment.
So, basically, you are out in the wild, wild west without a lot of clear direction here. I can therefore see why your doc might suggest playing it safe and eliminating supplements during chemo treatment.
If you really believe in supplements, you may want to further investigate the above strategy of just eliminating their use around the day of chemo treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do you take supplements and, if so, which ones?
Kim-
I do take a few supplements that were prescribed by my primary doctor and by my oncologist. I used to take more, but have stopped them since starting treatment.
I'm on Revlimid 15 mg, dex 20 mg and Zometa infusion every 6 weeks. I take curcumin 2 grams per day, vitamin D3 2000 mg per day, calcium 500 mg per day, magnesium 250 mg per day, and a multivitamin.
The calcium and vitamin D3 are recommended because of the Zometa infusions and the D3 recommended also by my primary because my levels were so low last year. The curcumin was recommended by my oncologist. The magnesium I think has been instrumental in decreasing the debilitating cramps that I was getting at night.
Both my primary and my oncologist are aware of what I am taking and haven't objected. In addition to the above, I'm on a blood pressure medication and acyclovir 1600 mg per day for shingles that have left me with an eye problem from an outbreak on my face 3 years ago.
Nancy in Phila
I do take a few supplements that were prescribed by my primary doctor and by my oncologist. I used to take more, but have stopped them since starting treatment.
I'm on Revlimid 15 mg, dex 20 mg and Zometa infusion every 6 weeks. I take curcumin 2 grams per day, vitamin D3 2000 mg per day, calcium 500 mg per day, magnesium 250 mg per day, and a multivitamin.
The calcium and vitamin D3 are recommended because of the Zometa infusions and the D3 recommended also by my primary because my levels were so low last year. The curcumin was recommended by my oncologist. The magnesium I think has been instrumental in decreasing the debilitating cramps that I was getting at night.
Both my primary and my oncologist are aware of what I am taking and haven't objected. In addition to the above, I'm on a blood pressure medication and acyclovir 1600 mg per day for shingles that have left me with an eye problem from an outbreak on my face 3 years ago.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Do you take supplements and, if so, which ones?
Multibilly & Nancy,
Thank you both so much for your helpful replies!
In speaking to his oncologist yesterday, my loved one was told he could consider taking a multi-vitamin, curcumin and zinc (no more than 50 mg). This is music to my ears! I am very pro supplement.
Nancy, I've read the benefits of circumin for cancer and am very pleased it is being recommended by my loved one's oncologist. I can also understand why calcium & D3 would be recommended as myeloma attacks the bones and my loved one receives Aredia infusions.
Multibilly, you are right about being out in the wild, wild west without a lot of clear direction ... but ... as I always say, there are ways around everything. It just takes a little research.
Thanks again,
Kim
Thank you both so much for your helpful replies!
In speaking to his oncologist yesterday, my loved one was told he could consider taking a multi-vitamin, curcumin and zinc (no more than 50 mg). This is music to my ears! I am very pro supplement.
Nancy, I've read the benefits of circumin for cancer and am very pleased it is being recommended by my loved one's oncologist. I can also understand why calcium & D3 would be recommended as myeloma attacks the bones and my loved one receives Aredia infusions.
Multibilly, you are right about being out in the wild, wild west without a lot of clear direction ... but ... as I always say, there are ways around everything. It just takes a little research.
Thanks again,
Kim
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: Do you take supplements and, if so, which ones?
Hi Kim.
I try to inform myself as much as possible about supplements and I know that some are contraindicated with Velcade, which I am taking now: Vitamin C and antioxidants containing hydroxyl (-OH) groups, as Multibilly points out, plus quercetin, and green tea. My primary doctor, not my oncologist, has mentioned that flavones are also suspect.
My oncologist’s nurse and her pharmacist cut back what I was taking and they reduced it to just 6000 of vitamin D , fish oils, probiotics and B complex and B12. They told me to take alpha lipoic acid in case of neuropathies, but I am still investigating it. I was taking monolaurin, a fatty acid from coconut that I credit with keeping me from catching even a cold for 18 months after I was diagnosed, but they decided I should not take it. I am not too sure they even know what it is.
When I asked the nurse if I could have licorice tea, she asked me what was licorice. They are so concerned about my stomach with the dexamethasone that they put me on ranitidine (Zantac) 150 mg twice a day, every day. They have no clue about how good licorice is for the stomach lining (the deglycyrrhizinated one). The ranitidine gives me nausea and I am only taking it the days I have to take the dex and only one pill in the morning. Without stomach acid you can absorb many things, so I really hate this pill. Plus the list of side effects is horrible.
They have forbidden curcumin. Their rational was that it potentiates Velcade, therefore its side effects are also augmented. I found no evidence of it, but for now, grinding my teeth with frustration, I am not taking anything they have not approved of.
I am allergic to milk products and I had problems with calcium supplements; I have tried them all -- calcium gluconate, carbonate, lactate, ororate, MCHC, etc. Now I try to eat a lot of broccoli, green salads, cabbage. I make an infusion tea with stinging nettles, horsetail, and oat straw every day. These herbs are supposed to have a lot of calcium. I was told do away with the infusion also "because it was difficult to measure"
They had me on acyclovir [Zovirax] for preventing shingles. After ten days of severe headaches, I am on Valtrex, which makes me very sleepy. And both have a nasty list of side effects. They did not tell me to avoid chocolate and nuts, which have a high L-arginine content, and L-arginine may be used by the virus to replicate. Or that eating loads of vegetables and fruits is also very beneficial. Just pump her with pills and hope she does not morph into a toad.
I did make an appointment with an integrative medicine oncologist that also works at Sloan Kettering, like my regular one. She is an expert on herbs and vitamin D. So we shall see.
I try to inform myself as much as possible about supplements and I know that some are contraindicated with Velcade, which I am taking now: Vitamin C and antioxidants containing hydroxyl (-OH) groups, as Multibilly points out, plus quercetin, and green tea. My primary doctor, not my oncologist, has mentioned that flavones are also suspect.
My oncologist’s nurse and her pharmacist cut back what I was taking and they reduced it to just 6000 of vitamin D , fish oils, probiotics and B complex and B12. They told me to take alpha lipoic acid in case of neuropathies, but I am still investigating it. I was taking monolaurin, a fatty acid from coconut that I credit with keeping me from catching even a cold for 18 months after I was diagnosed, but they decided I should not take it. I am not too sure they even know what it is.
When I asked the nurse if I could have licorice tea, she asked me what was licorice. They are so concerned about my stomach with the dexamethasone that they put me on ranitidine (Zantac) 150 mg twice a day, every day. They have no clue about how good licorice is for the stomach lining (the deglycyrrhizinated one). The ranitidine gives me nausea and I am only taking it the days I have to take the dex and only one pill in the morning. Without stomach acid you can absorb many things, so I really hate this pill. Plus the list of side effects is horrible.
They have forbidden curcumin. Their rational was that it potentiates Velcade, therefore its side effects are also augmented. I found no evidence of it, but for now, grinding my teeth with frustration, I am not taking anything they have not approved of.
I am allergic to milk products and I had problems with calcium supplements; I have tried them all -- calcium gluconate, carbonate, lactate, ororate, MCHC, etc. Now I try to eat a lot of broccoli, green salads, cabbage. I make an infusion tea with stinging nettles, horsetail, and oat straw every day. These herbs are supposed to have a lot of calcium. I was told do away with the infusion also "because it was difficult to measure"
They had me on acyclovir [Zovirax] for preventing shingles. After ten days of severe headaches, I am on Valtrex, which makes me very sleepy. And both have a nasty list of side effects. They did not tell me to avoid chocolate and nuts, which have a high L-arginine content, and L-arginine may be used by the virus to replicate. Or that eating loads of vegetables and fruits is also very beneficial. Just pump her with pills and hope she does not morph into a toad.
I did make an appointment with an integrative medicine oncologist that also works at Sloan Kettering, like my regular one. She is an expert on herbs and vitamin D. So we shall see.
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Cassy66 - Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 55
Re: Do you take supplements and, if so, which ones?
I think you have to give your doctors some credit Cassy. They are trying to help you be well. You've acknowledged that you need this treatment. Its going to have side effects. It just happens to have the added benefit of helping thousands of people.
As far as the supplements, I am sure they are just trying to be cautious. I know I want them to be abundantly cautious in my husband's care. But sometimes we do have to admit that we can't google all of it, otherwise we would all be doctors.
As far as the supplements, I am sure they are just trying to be cautious. I know I want them to be abundantly cautious in my husband's care. But sometimes we do have to admit that we can't google all of it, otherwise we would all be doctors.
Re: Do you take supplements and, if so, which ones?
Cassy,
Even though I take a lot of supplements, I'm with Cindylouise on this one.
Supplements are drugs. They do have interactions with other prescription drugs...and the drugs used for myeloma are mighty powerful. One therefore needs to be very careful when considering taking a given supplement with a specific drug... and doctors are in the best position to evaluate these risks.
I don't need to worry as much about this issue since I'm smoldering and not receiving any treatment. But, I would defer to my doctor if he/she was concerned about there being a potential negative interaction between any supplements and the drugs I was taking.
Be careful with D3. I went officially hypercalcemic after starting to take just 3000 IUs of D3/day and there was a period where I thought I was becoming symptomatic because of this. I cut back my D3 intake to 1000IU/day and my calcium level dropped back to normal.
Even though I take a lot of supplements, I'm with Cindylouise on this one.
Supplements are drugs. They do have interactions with other prescription drugs...and the drugs used for myeloma are mighty powerful. One therefore needs to be very careful when considering taking a given supplement with a specific drug... and doctors are in the best position to evaluate these risks.
I don't need to worry as much about this issue since I'm smoldering and not receiving any treatment. But, I would defer to my doctor if he/she was concerned about there being a potential negative interaction between any supplements and the drugs I was taking.
Be careful with D3. I went officially hypercalcemic after starting to take just 3000 IUs of D3/day and there was a period where I thought I was becoming symptomatic because of this. I cut back my D3 intake to 1000IU/day and my calcium level dropped back to normal.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do you take supplements and, if so, which ones?
Hi Cassie, It's good to know that you are already taking specific myeloma treatments, and hopefully the Velcade will start to help with diminishing the myeloma protein very soon. When I took Velcade, I didn't take any supplements, and did not drink green tea or take anything citrus at all! I knew that the cycles of Velcade were limited, and thus could project into the future that I could get back to the anti-oxidant containing items after I was finished the Velcade cycles.
Also, as Multibilly said, you have to be careful with any supplements of calcium, since if the amount of calcium in your blood is measured at above the normal ranges, it could be taken as a symptom of myeloma. (Of course, there is a reason for having a 'normal range' for calcium and one wouldn't want to exceed that anyways). Calcium can be released into the blood stream by destruction of bone.
I think that in normal life no one actually gets their blood tested for the proteins, calcium, red blood cell count and more that we do as myeloma patients, unless they perceive a problem such as extreme tiredness. Usually a once a year general check up is as often as most healthy people do get these checks. I suppose that we know more about the state of our blood than most do, and can adjust accordingly.
Best wishes with your treatments, and I hope that the inconvenience of not being able to take the supplements that you like to take is only temporary.
Also, as Multibilly said, you have to be careful with any supplements of calcium, since if the amount of calcium in your blood is measured at above the normal ranges, it could be taken as a symptom of myeloma. (Of course, there is a reason for having a 'normal range' for calcium and one wouldn't want to exceed that anyways). Calcium can be released into the blood stream by destruction of bone.
I think that in normal life no one actually gets their blood tested for the proteins, calcium, red blood cell count and more that we do as myeloma patients, unless they perceive a problem such as extreme tiredness. Usually a once a year general check up is as often as most healthy people do get these checks. I suppose that we know more about the state of our blood than most do, and can adjust accordingly.
Best wishes with your treatments, and I hope that the inconvenience of not being able to take the supplements that you like to take is only temporary.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Do you take supplements and, if so, which ones?
Thank you CindyLouise, Multibilly and Nancy for your advice and your wishes. I really mean it. I am so impressed by how caring people are in this forum, and how knowledgeable. (Multibilly I have been reading many of your posts and comments all over the forum and I am learning a lot from them).
You are right that my medical team is trying to help me. But seven years ago, allopathic doctors “trying to help me” misdiagnosed me and they almost killed me, leaving me with a severe distrust. Plus, they did so many cat scans that I am lucky I do not glow in the dark. All for nothing, and it could have been a contributing factor to my myeloma, if not what it has caused it in the first place. So, generally, I will not trust them implicitly again and I do question everything they do.
With this cancer, chemo works not always, not for everyone, and not forever, but it works. I am super careful with supplements and I am not doing anything that they do not know about. Myeloma is not something you knock down with a stick and many antioxidants do interfere with chemotherapy. So less is more for now. Until I see the integrative medicine oncologist at Sloan, I am doing what I am told. Then this doctor will have to talk to my primary oncologist. I will not be making the decisions.
I completely agree with you Nancy; the time to take supplements will come again (hopefully!) but it is not now. I am even refusing the alpha lipoic acid -suggested by my oncologist for the neuropathies - because I read that it may interfere with Velcade. I only trust the fish oils and the vitamin D. Vitamin B12 and probiotics have been recommended by my oncologist also. I do think that the systemic ignorance about nutrition and supplements among allopathic doctors is becoming less and less so. But still a long way to go.
My primary doctor heads a chronic illness clinic out of Stony Brook University and she is a powerhouse of allopathic and alternative medicine knowledge. She was very upset with me for choosing Gonzalez over chemo and now she is also of the mind not to take many supplements. I have great respect for her and she does for me. When this disease hit me I was finishing a PhD and teaching; she knows I know how to do research and that I do not merely google things. But CindyLouise, I confess I do that sometimes also!
About the vitamin D, I have a problem metabolizing it and it is taking me forever to get my levels up. When I was doing the Gonzalez therapy it when down, instead of up, even if I was taking 4000 IU daily. I am weary of it and not happy taking so much, but it is very important to have your levels up when you have got cancer. I am been carefully monitored by my primary doctor with blood tests and of course my oncologist does the hypercalcemia testing.
You are right that my medical team is trying to help me. But seven years ago, allopathic doctors “trying to help me” misdiagnosed me and they almost killed me, leaving me with a severe distrust. Plus, they did so many cat scans that I am lucky I do not glow in the dark. All for nothing, and it could have been a contributing factor to my myeloma, if not what it has caused it in the first place. So, generally, I will not trust them implicitly again and I do question everything they do.
With this cancer, chemo works not always, not for everyone, and not forever, but it works. I am super careful with supplements and I am not doing anything that they do not know about. Myeloma is not something you knock down with a stick and many antioxidants do interfere with chemotherapy. So less is more for now. Until I see the integrative medicine oncologist at Sloan, I am doing what I am told. Then this doctor will have to talk to my primary oncologist. I will not be making the decisions.
I completely agree with you Nancy; the time to take supplements will come again (hopefully!) but it is not now. I am even refusing the alpha lipoic acid -suggested by my oncologist for the neuropathies - because I read that it may interfere with Velcade. I only trust the fish oils and the vitamin D. Vitamin B12 and probiotics have been recommended by my oncologist also. I do think that the systemic ignorance about nutrition and supplements among allopathic doctors is becoming less and less so. But still a long way to go.
My primary doctor heads a chronic illness clinic out of Stony Brook University and she is a powerhouse of allopathic and alternative medicine knowledge. She was very upset with me for choosing Gonzalez over chemo and now she is also of the mind not to take many supplements. I have great respect for her and she does for me. When this disease hit me I was finishing a PhD and teaching; she knows I know how to do research and that I do not merely google things. But CindyLouise, I confess I do that sometimes also!
About the vitamin D, I have a problem metabolizing it and it is taking me forever to get my levels up. When I was doing the Gonzalez therapy it when down, instead of up, even if I was taking 4000 IU daily. I am weary of it and not happy taking so much, but it is very important to have your levels up when you have got cancer. I am been carefully monitored by my primary doctor with blood tests and of course my oncologist does the hypercalcemia testing.
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Cassy66 - Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 55
Re: Do you take supplements and, if so, which ones?
Regarding D3. I started taking D3 in combo with vitamin K2 a few months ago. In spite of getting lots of sunshine, my Vitamin D level used to be low and my calcium level was getting high. Both serum levels now now seem to have evened out nicely. You can find D3/K2 drops, pills and emulsions on the market. I take 1000IU of D3 and 200 uG of K2
You can easily google why some folks think its important to take them together.
You can easily google why some folks think its important to take them together.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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