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Sutent Side Effects

TerriNick
TerriNick Member Posts: 43

Hi guys

Sorry to trouble you but Nick is finding that he feels really queazy and sick first thing in the morning. Because he has been told to have a 2 hour no eating window before taking the tablet and a 1 hour window afterwards, he takes the Sutent at 8am in the morning and then waits an hour or so to have breakfast. But during that hour or so he is in and out of the toilet with a dodgy stomach and feeling quite nauseous. Does anyone else have this problem? And if so, have you found any solutions to it please?

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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Sutent

    Terri, I think Neil's your man on this question, so I'll just note that some people find it a help to take meds for diarrhoea, for instance, before their meal and this improves the situation more than waiting for an onslaught - may be the same for the nausea too?

  • TerriNick
    TerriNick Member Posts: 43

    Sutent

    Terri, I think Neil's your man on this question, so I'll just note that some people find it a help to take meds for diarrhoea, for instance, before their meal and this improves the situation more than waiting for an onslaught - may be the same for the nausea too?

    help

    thanks Texas. Neil is away this week isn't he? At a conference or something. Hopefully he will see this post when he returns and can give me some advice.

    Nick was actually vomiting yesterday morning after taking his Sutent, but he was taking the Felodipine tablet at the same time of day and we wondered if it could be having adverse effects taking both at the same time. He has today taken the sutent at 8.15 but left it until 10.30 to take the BP meds. And he has also tried taking Losartan today instead of Felodipine as he was getting a metallic taste and thought it might be from Felodipine. We are only on month 3 of the sutent so it is still a complete learning curve for us and we are just taking it one day at a time and also one side effect at a time :)  But at least with the lung met shrinking Nick has time to learn and find ways to deal with/mitigate the effects until a cure or better solution turns up (fingers crossed on that)

  • NanoSecond
    NanoSecond Member Posts: 653
    TerriNick said:

    help

    thanks Texas. Neil is away this week isn't he? At a conference or something. Hopefully he will see this post when he returns and can give me some advice.

    Nick was actually vomiting yesterday morning after taking his Sutent, but he was taking the Felodipine tablet at the same time of day and we wondered if it could be having adverse effects taking both at the same time. He has today taken the sutent at 8.15 but left it until 10.30 to take the BP meds. And he has also tried taking Losartan today instead of Felodipine as he was getting a metallic taste and thought it might be from Felodipine. We are only on month 3 of the sutent so it is still a complete learning curve for us and we are just taking it one day at a time and also one side effect at a time :)  But at least with the lung met shrinking Nick has time to learn and find ways to deal with/mitigate the effects until a cure or better solution turns up (fingers crossed on that)

    Help on the way...

    Hi Terrie,

    Yes, I am still away in fact.  I am attending the AACR (American Association for Cancer Research) Annual Convention here in Washington DC.  I am learning all sorts of amazing things.  I have been locked in sessions that literally begin at 7am (one day it was 6:45am) and run through to 6:30pm.  And I have had very limited email access during this time.

    However, I saw this and had to respond.  First off, I will give you my usual advice now (following) but I have learned a bunch of new things here that are leading me to formulate an even better approach. Unfortunately it is going to take a lot more research on my part before I write about what that is.  In the meantime, I hope this helps but stay tuned for more (perhaps better) ideas to come:

    MAJOR CAVEAT:  Discuss this with your oncologist before proceeding with this or any other supplements.  Always!

    This is from my "guide":

    This supplement is only to be taken to reduce certain unwelcome gastrointestinal side effects - if or when they might appear - but not otherwise or regularly.  This is a supplement that I was advised to take when I lost all sense of taste about three weeks into my first cycle on Sutent (at 50mg/day). This supplement also helps to alleviate any metallic food taste as well as mouth sores, nausea, and diarrhea, etc.

     

     The supplement is L-Glutamine.  It is the most common amino acid found in our bloodstream.

     

     "It is well-known for its digestive and gastrointestinal support.  It plays a key role in the metabolism, structure, and functioning of the GI tract, including the liver and the pancreas. It helps the intestines maintain permeability during periods of physiological stress such as starvation, physical trauma, and surgery." – Block Center for Integrative Cancer Treatment.

     

     

    After glucose, L-Glutamine is the next nutrient that some tumors “may” primarily feed on. Be that as it may, the body can readily obtain its L-Glutamine by the degradation of skeletal muscle or from adipose (fat) cells. So attempting to eliminate it is not going to be a limiting factor to tumor growth. Therefore, taking it short term is not a problem.  This was confirmed for me today in one of the AACR sessions I attended.

     

     

    It turns out that L-Glutamine is present mostly (in nature) in animal proteins and in not plant proteins (except in small amounts in wheat and spinach).  When eating meat it acts as a natural "buffering agent" during digestion. It assists in the process of turning excess hydrogen and nitrogen into ammonia in the kidneys. The body must do this for all proteins consumed (be they from animal or plant).  So anyone that is following a strict vegetarian or vegan diet is quite likely to be deficient in this amino acid.

     

     

    Dosage: 20-30 grams daily in liquid (2-3 scoops mixed in a very small amount of water twice a day). One scoop = 4.1 grams.

     

  • TerriNick
    TerriNick Member Posts: 43

    Help on the way...

    Hi Terrie,

    Yes, I am still away in fact.  I am attending the AACR (American Association for Cancer Research) Annual Convention here in Washington DC.  I am learning all sorts of amazing things.  I have been locked in sessions that literally begin at 7am (one day it was 6:45am) and run through to 6:30pm.  And I have had very limited email access during this time.

    However, I saw this and had to respond.  First off, I will give you my usual advice now (following) but I have learned a bunch of new things here that are leading me to formulate an even better approach. Unfortunately it is going to take a lot more research on my part before I write about what that is.  In the meantime, I hope this helps but stay tuned for more (perhaps better) ideas to come:

    MAJOR CAVEAT:  Discuss this with your oncologist before proceeding with this or any other supplements.  Always!

    This is from my "guide":

    This supplement is only to be taken to reduce certain unwelcome gastrointestinal side effects - if or when they might appear - but not otherwise or regularly.  This is a supplement that I was advised to take when I lost all sense of taste about three weeks into my first cycle on Sutent (at 50mg/day). This supplement also helps to alleviate any metallic food taste as well as mouth sores, nausea, and diarrhea, etc.

     

     The supplement is L-Glutamine.  It is the most common amino acid found in our bloodstream.

     

     "It is well-known for its digestive and gastrointestinal support.  It plays a key role in the metabolism, structure, and functioning of the GI tract, including the liver and the pancreas. It helps the intestines maintain permeability during periods of physiological stress such as starvation, physical trauma, and surgery." – Block Center for Integrative Cancer Treatment.

     

     

    After glucose, L-Glutamine is the next nutrient that some tumors “may” primarily feed on. Be that as it may, the body can readily obtain its L-Glutamine by the degradation of skeletal muscle or from adipose (fat) cells. So attempting to eliminate it is not going to be a limiting factor to tumor growth. Therefore, taking it short term is not a problem.  This was confirmed for me today in one of the AACR sessions I attended.

     

     

    It turns out that L-Glutamine is present mostly (in nature) in animal proteins and in not plant proteins (except in small amounts in wheat and spinach).  When eating meat it acts as a natural "buffering agent" during digestion. It assists in the process of turning excess hydrogen and nitrogen into ammonia in the kidneys. The body must do this for all proteins consumed (be they from animal or plant).  So anyone that is following a strict vegetarian or vegan diet is quite likely to be deficient in this amino acid.

     

     

    Dosage: 20-30 grams daily in liquid (2-3 scoops mixed in a very small amount of water twice a day). One scoop = 4.1 grams.

     

    help

    Thanks Neil. Much appreciated I will talk to his oncologist and I am looking forward to hearing more about all that you are learning when you've done what you need to do. Sounds exciting and promising.

  • TerriNick
    TerriNick Member Posts: 43

    Help on the way...

    Hi Terrie,

    Yes, I am still away in fact.  I am attending the AACR (American Association for Cancer Research) Annual Convention here in Washington DC.  I am learning all sorts of amazing things.  I have been locked in sessions that literally begin at 7am (one day it was 6:45am) and run through to 6:30pm.  And I have had very limited email access during this time.

    However, I saw this and had to respond.  First off, I will give you my usual advice now (following) but I have learned a bunch of new things here that are leading me to formulate an even better approach. Unfortunately it is going to take a lot more research on my part before I write about what that is.  In the meantime, I hope this helps but stay tuned for more (perhaps better) ideas to come:

    MAJOR CAVEAT:  Discuss this with your oncologist before proceeding with this or any other supplements.  Always!

    This is from my "guide":

    This supplement is only to be taken to reduce certain unwelcome gastrointestinal side effects - if or when they might appear - but not otherwise or regularly.  This is a supplement that I was advised to take when I lost all sense of taste about three weeks into my first cycle on Sutent (at 50mg/day). This supplement also helps to alleviate any metallic food taste as well as mouth sores, nausea, and diarrhea, etc.

     

     The supplement is L-Glutamine.  It is the most common amino acid found in our bloodstream.

     

     "It is well-known for its digestive and gastrointestinal support.  It plays a key role in the metabolism, structure, and functioning of the GI tract, including the liver and the pancreas. It helps the intestines maintain permeability during periods of physiological stress such as starvation, physical trauma, and surgery." – Block Center for Integrative Cancer Treatment.

     

     

    After glucose, L-Glutamine is the next nutrient that some tumors “may” primarily feed on. Be that as it may, the body can readily obtain its L-Glutamine by the degradation of skeletal muscle or from adipose (fat) cells. So attempting to eliminate it is not going to be a limiting factor to tumor growth. Therefore, taking it short term is not a problem.  This was confirmed for me today in one of the AACR sessions I attended.

     

     

    It turns out that L-Glutamine is present mostly (in nature) in animal proteins and in not plant proteins (except in small amounts in wheat and spinach).  When eating meat it acts as a natural "buffering agent" during digestion. It assists in the process of turning excess hydrogen and nitrogen into ammonia in the kidneys. The body must do this for all proteins consumed (be they from animal or plant).  So anyone that is following a strict vegetarian or vegan diet is quite likely to be deficient in this amino acid.

     

     

    Dosage: 20-30 grams daily in liquid (2-3 scoops mixed in a very small amount of water twice a day). One scoop = 4.1 grams.

     

    update

    How is this for weird...

    Nick was on Felodipine and Losartan last month and it didn't help the high blood pressure. From Day 1 this time we had him just on Felodipine 5mg but by day 4 he was throwing up, feeling really tired and had a horrid metallic taste in his mouth and there was a clear red patch on the middle of this tongue where he normal white coating had disappaared. So we changed him to Losartan 25mg since last Tuesday. The metallic taste has disappeared, the coating on his tongue looks normal again, he isn't throwing up either. The main issues are feeling a little nauseous about 5-8 hours after taking the tablet but that goes within an hour; Feeling breathless if he exerts himself (being a dance teacher this is a bit of a problem) and if he drinks even the tiniest bit of alcohol then he feels really dizzy as though he is going to pass out. That is simple to sort out, he just doesn't drink alcohol any more.

    Oh and whilst the Felodipine did not do a thing for the high BP Losartan brought it down into the normal ranges within 36 hours. So much so that we were panicking that the Sunitinib has stopped working and we delayed taking Losartan on Saturday to check if his BP went up without it. It did.

    Strange isn't it, we are never happy. When his BP was high I was praying for it to come down into normal range. When it finally did come into normal range I start panicking that it means the cancer tablets aren't working and want his BP to go up again. How crazt stupid am I?

     

  • NanoSecond
    NanoSecond Member Posts: 653
    TerriNick said:

    update

    How is this for weird...

    Nick was on Felodipine and Losartan last month and it didn't help the high blood pressure. From Day 1 this time we had him just on Felodipine 5mg but by day 4 he was throwing up, feeling really tired and had a horrid metallic taste in his mouth and there was a clear red patch on the middle of this tongue where he normal white coating had disappaared. So we changed him to Losartan 25mg since last Tuesday. The metallic taste has disappeared, the coating on his tongue looks normal again, he isn't throwing up either. The main issues are feeling a little nauseous about 5-8 hours after taking the tablet but that goes within an hour; Feeling breathless if he exerts himself (being a dance teacher this is a bit of a problem) and if he drinks even the tiniest bit of alcohol then he feels really dizzy as though he is going to pass out. That is simple to sort out, he just doesn't drink alcohol any more.

    Oh and whilst the Felodipine did not do a thing for the high BP Losartan brought it down into the normal ranges within 36 hours. So much so that we were panicking that the Sunitinib has stopped working and we delayed taking Losartan on Saturday to check if his BP went up without it. It did.

    Strange isn't it, we are never happy. When his BP was high I was praying for it to come down into normal range. When it finally did come into normal range I start panicking that it means the cancer tablets aren't working and want his BP to go up again. How crazt stupid am I?

     

    Drug Interactions

    Hi Terri,

    Both Losartan and Felodipine are inhibitors of the enzyme known as Cytochrome P450 3A4 (CYP3A4).  In addition, Losartan is a substrate of CYP3A4 as well.

    Sutent is also a substrate (that is, a chemical that is acted on by an enzyme) for Cytochrome P450 3A4 (CYP3A4). Other drugs or foods that are substrates for CYP3A4 (such as Losartan) may compete with Sutent for the amount of CYP3A4 enzyme that is available. If this substance uses up a lot of the CYP3A4 enzyme available then Sutent may not get metabolized properly. Instead Sutent may remain in the blood stream at an abnormally high level. This could possibly lead to some severe side effects.

     

    In addition, any supplements (or other medications or foods) that increase (or “induce) the activity of this enzyme (such as St. John's Wort) will decrease the concentration of Sutent getting into the bloodstream.  The increased activity of CYP3A4 will cause Sutent to be metabolized too quickly, resulting in less of it being available to fight angiogenesis (blood vessel creation). In contrast, anything that decreases (“inhibits”) the activity of this enzyme (such as grapefruit, grapefruit juice, or green tea) will increase the concentration of Sutent staying in the bloodstream.  That result could become dangerous.

     

    Some other CYP3A4 inhibitors and inducers to consider can be found here:

     

    http://www.gistsupport.org/treatments-for-gist/sutent/sunitinib-sutent-basics-for-gist.php#6

  • NanoSecond
    NanoSecond Member Posts: 653
    TerriNick said:

    update

    How is this for weird...

    Nick was on Felodipine and Losartan last month and it didn't help the high blood pressure. From Day 1 this time we had him just on Felodipine 5mg but by day 4 he was throwing up, feeling really tired and had a horrid metallic taste in his mouth and there was a clear red patch on the middle of this tongue where he normal white coating had disappaared. So we changed him to Losartan 25mg since last Tuesday. The metallic taste has disappeared, the coating on his tongue looks normal again, he isn't throwing up either. The main issues are feeling a little nauseous about 5-8 hours after taking the tablet but that goes within an hour; Feeling breathless if he exerts himself (being a dance teacher this is a bit of a problem) and if he drinks even the tiniest bit of alcohol then he feels really dizzy as though he is going to pass out. That is simple to sort out, he just doesn't drink alcohol any more.

    Oh and whilst the Felodipine did not do a thing for the high BP Losartan brought it down into the normal ranges within 36 hours. So much so that we were panicking that the Sunitinib has stopped working and we delayed taking Losartan on Saturday to check if his BP went up without it. It did.

    Strange isn't it, we are never happy. When his BP was high I was praying for it to come down into normal range. When it finally did come into normal range I start panicking that it means the cancer tablets aren't working and want his BP to go up again. How crazt stupid am I?

     

    One other warning

    Forgot to add - there is a warning about Losartan interacting negatively with Potassium (found in high concentrations in bananas, for example).

    It can lead to an increased risk of hyperkalemia.

    From Wiki: http://en.wikipedia.org/wiki/Hyperkalemia 

    Extreme hyperkalemia is a medical emergency due to the risk of potentially fatal abnormal heart rhythms (arrhythmia).

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    One other warning

    Forgot to add - there is a warning about Losartan interacting negatively with Potassium (found in high concentrations in bananas, for example).

    It can lead to an increased risk of hyperkalemia.

    From Wiki: http://en.wikipedia.org/wiki/Hyperkalemia 

    Extreme hyperkalemia is a medical emergency due to the risk of potentially fatal abnormal heart rhythms (arrhythmia).

    Furthermore

    In addition to Neil's information, it's worth noting that getting BP meds right is  largely by trial and error.  Not only do we vary enormously from one person to another but also there are quite a number of different classes of blood pressure meds, each witrh a different mechanism of action, and many brand choices within each class.

    For the majority of patients the optimal control is achieved by using two or three meds simultaneously, but at lowish doses of each - this is generally better than high dosage of a single drug.

  • Mikeyswife
    Mikeyswife Member Posts: 31
    Confused

    I am now so confused.  My husband will begin Sutent tomorrow evening.  I was told by his oncology NP that he could take it with or without food.  Is this not correct?  I know my grandson's chemo for Acute Lymphoblastic Leukemia is definitely to be taken at night without food for maximum effectiveness.  I know how important this can be and don't want to do something that will in any way make the Sutent less effective.

    Karen

  • NanoSecond
    NanoSecond Member Posts: 653

    Confused

    I am now so confused.  My husband will begin Sutent tomorrow evening.  I was told by his oncology NP that he could take it with or without food.  Is this not correct?  I know my grandson's chemo for Acute Lymphoblastic Leukemia is definitely to be taken at night without food for maximum effectiveness.  I know how important this can be and don't want to do something that will in any way make the Sutent less effective.

    Karen

    Confused

    Karen,

    "Officially" you can take Sutent with or without food and at any time of the day. My personal routine is to take it about 2 hours prior to dinner - usually with a slight snack such as some raw nuts or humus on Pita bread.But at all other times I take it with no food at all.

    Food, herbs, and other medications that increase the activity of the CYP 3A4 enzyme, such as St. John's Wort (the only example generally cited), can decrease the concentration of Sutent in the blood.

    I take several dietary supplements and have investigated each one as to its potential interaction with Sutent. I have also changed my diet - this too was based on some extensive research. One of the results is that I have been taking Sutent at 50mg/day (4wks on / 1 wk off) for over 7 months now with no significant side effects yet.

    I am happy to share an explanantion of the science and rationale behind what I have been doing with anyone who is interested.

     

    -N

  • Mikeyswife
    Mikeyswife Member Posts: 31

    Confused

    Karen,

    "Officially" you can take Sutent with or without food and at any time of the day. My personal routine is to take it about 2 hours prior to dinner - usually with a slight snack such as some raw nuts or humus on Pita bread.But at all other times I take it with no food at all.

    Food, herbs, and other medications that increase the activity of the CYP 3A4 enzyme, such as St. John's Wort (the only example generally cited), can decrease the concentration of Sutent in the blood.

    I take several dietary supplements and have investigated each one as to its potential interaction with Sutent. I have also changed my diet - this too was based on some extensive research. One of the results is that I have been taking Sutent at 50mg/day (4wks on / 1 wk off) for over 7 months now with no significant side effects yet.

    I am happy to share an explanantion of the science and rationale behind what I have been doing with anyone who is interested.

     

    -N

    I would be very

    I would be very interested!

     

    Thanks!

    Karen

  • NanoSecond
    NanoSecond Member Posts: 653

    I would be very

    I would be very interested!

     

    Thanks!

    Karen

    Guide to Diet and Supplements

    Hi Karen,

    I need to send it to you directly via email.  It is a .pdf document now over 65 pages long.  So please send me an email at:

    [email protected]

    and I will be happy to send it back to you.

     

    -Neil (NanoSecond)

  • vdm13
    vdm13 Member Posts: 47
    My 2 Cents

    I just finished Cycle 8 on Sutent. I find that by taking it before bed I sleep through the worst of it. Also know that Sutent effects different people different ways, so find the right combination of side effect management that works for you. For skin, I rely on Eucerin. I don't have mouth sores but my nurse at MSKCC suggested salt water rinses and impeccable oral hygeine. For nausea, I don't think I'm allowed to comment on my preferred treatment as it is not yet legal in New York, but I got a wink and a nod from my oncologist. Be careful with supplements, as Neil says, as the various enzymes can affect Sutent's efficacy, so check with you doctor. But I do take a multivitamin and fiber to help with the loose stool (which is putting REALLY kindly), but I take them and all other med in the morning and Sutent by itself at night. Stay the course and fight the fight. I wish you all the best.

    Vin

  • Eliezer2
    Eliezer2 Member Posts: 85
    Take in evening with anti-nausea pill

    You can get anti-nausea pills over the counter - the same stuff they give people who throw up on airplanes.

     

    If you take before bed you will sleep thru the worst of it all.

  • Mikeyswife
    Mikeyswife Member Posts: 31
    Extreme Muscle and Bone Pain

    Mike is on his third week of Sutent.  Things were going well until yesterday.  He is experiencing extreme pain.  Vicodin is not helping a lot and he is not able to sleep.  It seems that his pain is focused on areas where he has arthritis - neck and shoulder.  He is not able to take Percocet.  His blood pressure is also on the rise.  His onc just doubled his blood pressure medicine for the second time so hopefully this will get under control quickly.  Although, hopefully the blood pressure rise in both systolic and diastolic is showing the Sutent to be working!  Has anyone had pain as a side effect and have any ideas to help control the pain?

    Thanks,

    Karen

  • mountcarmel
    mountcarmel Member Posts: 5
    Sutent Side Effects

    Hello,

    My husband is in the end of his second cycle on Sutent and is also experiencing joint pains (knees, hips) nothing in the upper extremities.  Doc said he could take ibuproben but only when necessary and not continuously.  they are also going to check his labs for rhum. arthritis and may be able to treat with steriods.  I will let you know what they tell us after our next meeting. 

  • NanoSecond
    NanoSecond Member Posts: 653

    Sutent Side Effects

    Hello,

    My husband is in the end of his second cycle on Sutent and is also experiencing joint pains (knees, hips) nothing in the upper extremities.  Doc said he could take ibuproben but only when necessary and not continuously.  they are also going to check his labs for rhum. arthritis and may be able to treat with steriods.  I will let you know what they tell us after our next meeting. 

    Ibuprofen?

    It would be far better for him to use acetaminophen (also known as paracetamol or Tylenol, etc.) for pain relief.  Ibuprofen is metabolized in the kidney; Acetaminophen is metabolized in the liver.  Of course you should never take it with alcohol.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Sutent Side Effects

    Hello,

    My husband is in the end of his second cycle on Sutent and is also experiencing joint pains (knees, hips) nothing in the upper extremities.  Doc said he could take ibuproben but only when necessary and not continuously.  they are also going to check his labs for rhum. arthritis and may be able to treat with steriods.  I will let you know what they tell us after our next meeting. 

    Joint pains

    If using corticosteroids, please be very careful.  Even high doses are OK, just so long as it's for a short period. Long-term use of steroids is fraught with dangers, even at low doses.  (Just about to have an occasional ibuprofen myself.)  Hoping the forthcoming meeting is encouraging.

  • NanoSecond
    NanoSecond Member Posts: 653

    Sutent Side Effects

    Hello,

    My husband is in the end of his second cycle on Sutent and is also experiencing joint pains (knees, hips) nothing in the upper extremities.  Doc said he could take ibuproben but only when necessary and not continuously.  they are also going to check his labs for rhum. arthritis and may be able to treat with steriods.  I will let you know what they tell us after our next meeting. 

    More on Ibuprofen

    I forgot to add - if he is going to take Ibuprofen make sure he always, alway drinks lots of water with it.  The adverse effects from it occur when one is dehydrated.

  • mountcarmel
    mountcarmel Member Posts: 5
    sutent side effects

    They told my husband not to take tylenol and I thought it was because of the kidneys, but no too sure.  But they said ibuprofen was ok so long as it is only once and awhile.  Thanks for the info on the steroids.  He may have to come off drug a little early due to elevated liver enzymes.