Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Sutent Side Effects

2»

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    TerriNick said:

    thanks

    Thanks Nano. Much appreciated. Is it normal for someone to go 2-3 cycles and then experience a new side effect? We had really hoped that we had found out what all the side effects were by now. and were so grateful that he hadn't experienced any problems with his hands or feet. It has come as a real shock that he had Hand/Foot Syndrome this month especially as he is a dance teacher and lead guitarist so needs his hands and feet to be in good condition.

    Any suggestions for how to keep this at bay please?

    Terri

    Side Effects

    Hi Terri,

    Yes, I have seen numerous posts from others taking Sutent wherein they mention that each cycle has brought them different side effects - or the intensity of the side effects they had experienced changed (for better or worse).

    As for Hand-Foot Sydrome I will pass along a link to a rather novel therapy.  It was first posted on the new Smart Patients website. I have no idea if it works or not:

    http://xelodasideeffects.blogspot.com/2009/02/keeping-it-simple.html

    I, for one, would be very interested to know how this works if you do try it.

    If it does not I can also point you to another rather off the wall therapy that is actually a US patent application. The theory behind it makes perfect sense.  Here goes:

    United States Patent Application #20120258970:

    "Compositions and Methods for the Treatment of Drug-Induced Hand-Foot Syndrome"

    "Abstract: The present invention provides methods of treating, ameliorating or preventing hand-foot syndrome in a subject in need thereof comprising administering to the subject a therapeutically effective amount of a phosphodiesterase inhibitor."

    http://www.freepatentsonline.com/y2012/0258970.html

    The basic idea is to apply sildenafil* topically.

     

    *Sildenafil is better known by its trade name, Viagra.

  • NanoSecond
    NanoSecond Member Posts: 653

    Sutent Side Effects

    Nano I am looking for a recent post which I believe you mention taking glucosamine to regain taste while on sutent or you once took.  Am I correct?  My husband's biggest complaint at the moment is not being able to taste anything.

    L-Glutamine

    You are correct.  Towards the end of my very first cycle on Sutent (50mg/day) I lost all sense of taste.  It was suggested to me by the folks at the Block Center for Integrative Cancer Treatment that I try taking L-Glutamine.  Within 2 or 3 days after starting on it my taste returned.  I then had a 2-week break off.  On my next cycel of Sutent I never lost my taste - so I never needed to take any more L-Glutamine.  And now, after 7 more cycles on Sutent, I still have not lost my taste.

    This supplement can also help to alleviate any metallic food taste as well as mouth sores, nausea, and diarrhea, etc.

     

    L-Glutamine is the most common amino acid found in our bloodstream. It assists in the process of turning excess hydrogen and nitrogen into ammonia in the kidneys. The body must do this for all the proteins that are consumed from either animal or plant sources.

     

    "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.

     

    But beware of using it for a very long and sustained period.  This is because after glucose, L-Glutamine is the next nutrient that many tumors may feed on. Be that as it may, the body can always obtain its L-Glutamine by the degradation of skeletal muscle. So trying to limit or eliminate it is not going to work to be a limiting factor to tumor growth. Taking a little more of it short term is similarly not a problem.

     

    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.

  • Mboyle5340
    Mboyle5340 Member Posts: 1

    Hand Foot Sydrome

    You are most welcome. I am happy to share what I have discovered. But I keep researching so do check back with me every month or so as I add new ideas.

    It makes me very sad to hear that your onc is not more helpful.  I really want to encourage you to keep trying to be fully open with all your doctors. They do need to know exactly what supplements you have decided to take - in case they prescribe other medications that might be interfered with.  So you should feel free to share my document with them if necessary. 

    My oncologist frequently thanks me for all the research I have been doing - as he does not have the time to do it himself.  He is open to new ideas - especially when he sees that they can work.  He has recently modified his own diet (and he does not have cancer).  We always review everything that I am doing and taking.  We work together as a team - but he is ultimately in charge.

    Meanwhile the pain you are describing is well known.  It is called HFS - Hand Foot Syndrome.  Here is a novel way to deal with it:

    http://xelodasideeffects.blogspot.com/2009/02/keeping-it-simple.html

    The above link comes from a discussion at the website "Smart Patients".  I highly encourage you to sign up there. You will find a tremendous wealth of information available.  Not just on RCC but on all other kinds of cancer.  It is a brand new site (Full disclosure: Tex and I have been helping to beta test it for the past few weeks).

    To sign up, just go here:  http://www.smartpatients.com and ask for an invitation.

    Best wishes,

     

    -N

    Can you send me the PDF you

    Can you send me the PDF you spoke about? Curious to review before going to my mediCal oncologist.

    [email protected]

  • NanoSecond
    NanoSecond Member Posts: 653

    Can you send me the PDF you

    Can you send me the PDF you spoke about? Curious to review before going to my mediCal oncologist.

    [email protected]

    PDF File

    It is on its way to you.

  • dbeattysr
    dbeattysr Member Posts: 1

    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?

    Diarrhea with Sutent

    I take so many meds right now with my Sutent and heart contition etc. that I didn't want to add another for diarrhea. I have found that the best thing for diarrhea, while on Sutent is Metamicil. I know that sounds counter to what Metamucil is usally used for but it works very well for me, eliminating one more drug that I have to take. An older doctor recommened this for me long before I had cancer.

    I have been on Sutent for 15 months and have been using Metamicl for probably 14 of those months. Haven't taken diarrhe medicine since then.

  • NanoSecond
    NanoSecond Member Posts: 653
    dbeattysr said:

    Diarrhea with Sutent

    I take so many meds right now with my Sutent and heart contition etc. that I didn't want to add another for diarrhea. I have found that the best thing for diarrhea, while on Sutent is Metamicil. I know that sounds counter to what Metamucil is usally used for but it works very well for me, eliminating one more drug that I have to take. An older doctor recommened this for me long before I had cancer.

    I have been on Sutent for 15 months and have been using Metamicl for probably 14 of those months. Haven't taken diarrhe medicine since then.

    Fiber

    Actually this makes infinitely good sense.

    Metamucil is made of Psyllium - which is a soluable fiber supplement.  Most people do not get enough fiber in their diet to begin with.  One of the many things it does is help your intestines absorb water.

    Adequate fiber is important for three reasons.  First, it slows the rate of absorption of carbohydrates in the intestine.  A slower rate of absorption gives intestinal bacteria a chance to get to it first and break it down.  Second, fiber increases the speed of transportation of intestinal contents to the ileum, the final section of the small intestine.  This in turn raises the level of the satiety hormone that tells the brain that the meal is over.  So the feeling of satiety occurs sooner. Finally, fiber inhibits the absorption of free fatty acids until reaching the colon where they are divided into tiny fragments called “short-chain fatty acids”. These molecules suppress insulin instead of stimulating its release and that prevents issues with insulin resistance in the body.

     

    It is also for these reasons that the consumption of whole fruit (but not fruit juice), even though it may contain fructose, is not a big problem.  The fiber packaged within the fruit mitigates the metabolic issues created by consuming fructose alone and without adequate fiber.

  • Mikeyswife
    Mikeyswife Member Posts: 31
    First Cycle Down

    Mike is now in the first week of his first Sutent break.  It appears that all side effects are quickly subsiding.  By the end of the last week of Sutent he was on six times the amount of blood pressure medicine than he was when he started, he had a pretty good rash going on, and still was have pain and weakness in his left arm and shoulder.  He had about three day that were almost unbearable, but other than that I thought he did very well (easy for me to say!)

    This is the first weekend since his diagnosis where life has seemed almost normal.  We took a day trip to the drag races and car show that we go to every year, he went to a bachelor party for a couple of hours with a friend, spent several hours with the grand kids and mowed our two and a half acres all at one time - on a tractor of course!

    Hoping and praying the next round will be easier and at the end of it that the scans will show it is working.  Thanks for all the support.  You all have been wonderful!

  • TerriNick
    TerriNick Member Posts: 43

    Side Effects

    Hi Terri,

    Yes, I have seen numerous posts from others taking Sutent wherein they mention that each cycle has brought them different side effects - or the intensity of the side effects they had experienced changed (for better or worse).

    As for Hand-Foot Sydrome I will pass along a link to a rather novel therapy.  It was first posted on the new Smart Patients website. I have no idea if it works or not:

    http://xelodasideeffects.blogspot.com/2009/02/keeping-it-simple.html

    I, for one, would be very interested to know how this works if you do try it.

    If it does not I can also point you to another rather off the wall therapy that is actually a US patent application. The theory behind it makes perfect sense.  Here goes:

    United States Patent Application #20120258970:

    "Compositions and Methods for the Treatment of Drug-Induced Hand-Foot Syndrome"

    "Abstract: The present invention provides methods of treating, ameliorating or preventing hand-foot syndrome in a subject in need thereof comprising administering to the subject a therapeutically effective amount of a phosphodiesterase inhibitor."

    http://www.freepatentsonline.com/y2012/0258970.html

    The basic idea is to apply sildenafil* topically.

     

    *Sildenafil is better known by its trade name, Viagra.

    update

    Hi Nano

    We mentioned sildenafil to Nicks Oncologist who just shrugged it off. It seems that if we mention something it is not considered relevant. We did mention that Nick was having a few twinges with the collarbone met and the Onc said that he could have an infusion of something for that (I took that to mean Xgeva although I didn't like to ask this time) I will ask more at the next appointment about that. His GP also had not heard of Sildenafil cream and could not find it on his computer so said he could not prescribe it. He has been given some other cream to try and they said Nick could see their skin specialist if he had problems again. We are just hoping that the Hand Foot Syndrome was a one-off and that it won't return.

    On the blood pressure side he is taking Losartan 25mg twice daily - the Oncologist and Cardiologist wanted him to increase it to 50mg twice a day and if that didn't work to add in Indapamide but we decided that doing that would increase the likelihood of side effects from it so we just asked his GP for a prescription for Indapamide 1.25mg which he starts today with the Losartan 25mg twice daily. Hopefully that will work and bring his BP down to normal levels.

    Thanks again for all your help and advice. Oh and we got the fiber stuff and that seems to be working. And taking the Sutent at midnight also seems to be a better way for him - less stomach issues in the morning which is good news.

  • NanoSecond
    NanoSecond Member Posts: 653
    TerriNick said:

    update

    Hi Nano

    We mentioned sildenafil to Nicks Oncologist who just shrugged it off. It seems that if we mention something it is not considered relevant. We did mention that Nick was having a few twinges with the collarbone met and the Onc said that he could have an infusion of something for that (I took that to mean Xgeva although I didn't like to ask this time) I will ask more at the next appointment about that. His GP also had not heard of Sildenafil cream and could not find it on his computer so said he could not prescribe it. He has been given some other cream to try and they said Nick could see their skin specialist if he had problems again. We are just hoping that the Hand Foot Syndrome was a one-off and that it won't return.

    On the blood pressure side he is taking Losartan 25mg twice daily - the Oncologist and Cardiologist wanted him to increase it to 50mg twice a day and if that didn't work to add in Indapamide but we decided that doing that would increase the likelihood of side effects from it so we just asked his GP for a prescription for Indapamide 1.25mg which he starts today with the Losartan 25mg twice daily. Hopefully that will work and bring his BP down to normal levels.

    Thanks again for all your help and advice. Oh and we got the fiber stuff and that seems to be working. And taking the Sutent at midnight also seems to be a better way for him - less stomach issues in the morning which is good news.

    Your update

    Hi Terri,

    I am not very surprised about your oncologist not knowing about the sildenafil.  Remember, that one is pretty far "out of the box".  I only know about it through the patent filing.  A patent filing is not a patent - it may or may not ever receive that status. Regardless, I have no idea if it will even work.  But the theory is sound - HFS may be due to lack of Nitric Oxide in epithelial cells and sildenafil applied topically might redress that. 

    Have you looked into the other technique based on using Henna?

    I am concerned about all the various others drugs that Nick has been prescribed.  Has anyone of his doctors thoroughly researched how they might interact?

    If you send me a list of what else he taking besides Losartan and Indapamide I can do a search to see what is out there.

    For example, did anyone explain to you that Losartan is both a substrate and an inhibitor of the CYP3A4 enzyme? That means it may act to increase the concentration of TKI's like Sutent or Votrient.  Anything that inhibits (decreases) the activity of this enzyme (such as grapefruit, grapefruit juice, Seville oranges) can increase the concentration of a TKI staying in the blood stream.  Beware.

    Similarly, Indapamide is a substrate for CYP3A4. That means it could work to deplete the overall amount of CYP3A4 available to metabolize other drugs.

    I realize this may seem rather complicated.  But these are key issues that your oncologist and other doctors should also be addressing.  Make sure all your doctors know about ALL the drugs (and supplements) that Nick might be taking.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    L-Glutamine

    You are correct.  Towards the end of my very first cycle on Sutent (50mg/day) I lost all sense of taste.  It was suggested to me by the folks at the Block Center for Integrative Cancer Treatment that I try taking L-Glutamine.  Within 2 or 3 days after starting on it my taste returned.  I then had a 2-week break off.  On my next cycel of Sutent I never lost my taste - so I never needed to take any more L-Glutamine.  And now, after 7 more cycles on Sutent, I still have not lost my taste.

    This supplement can also help to alleviate any metallic food taste as well as mouth sores, nausea, and diarrhea, etc.

     

    L-Glutamine is the most common amino acid found in our bloodstream. It assists in the process of turning excess hydrogen and nitrogen into ammonia in the kidneys. The body must do this for all the proteins that are consumed from either animal or plant sources.

     

    "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.

     

    But beware of using it for a very long and sustained period.  This is because after glucose, L-Glutamine is the next nutrient that many tumors may feed on. Be that as it may, the body can always obtain its L-Glutamine by the degradation of skeletal muscle. So trying to limit or eliminate it is not going to work to be a limiting factor to tumor growth. Taking a little more of it short term is similarly not a problem.

     

    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.

    L-glutamine

    I forgot that I'd meant to point out that mountcarmel referred to glucosamine, not glutamine and they are, of course, very different chemicals and unconnected (without going into amine building blocks and so on).  She was probably thinking of glucosamine sulphate as a supplement (used in treating, e.g. osteoarthritis) and its function in the body is entirely distinct from the many functions of L-glutamine. 

    There's no contra-indication to taking both but the one that's more important in this context is L-glutamine, assuming that one's diet is deficient in supplying an adequate amount (a real risk on, e.g. a vegan diet).

  • NanoSecond
    NanoSecond Member Posts: 653

    L-glutamine

    I forgot that I'd meant to point out that mountcarmel referred to glucosamine, not glutamine and they are, of course, very different chemicals and unconnected (without going into amine building blocks and so on).  She was probably thinking of glucosamine sulphate as a supplement (used in treating, e.g. osteoarthritis) and its function in the body is entirely distinct from the many functions of L-glutamine. 

    There's no contra-indication to taking both but the one that's more important in this context is L-glutamine, assuming that one's diet is deficient in supplying an adequate amount (a real risk on, e.g. a vegan diet).

    Thanks

    Thanks, Tex.  Clearly I did not read Mountcarmel's post closely.  As soon as there was a mention of gastrointestinal issues (and a question about my previous posts dealing with it) I simply commenced to discuss L-Glutamine and never caught the original reference to Glucosamine.

    Glucosamine, of course, will have no effect on these issues.  And, just as an aside, there is plenty of debate as to whether it has much effect on treating joint pain and/or osteroarthritis.

    Were you a librarian in a previous birth?  You always so easilty catch my typos, grammatical errors, and now my lack of reading skills...  ;)

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Thanks

    Thanks, Tex.  Clearly I did not read Mountcarmel's post closely.  As soon as there was a mention of gastrointestinal issues (and a question about my previous posts dealing with it) I simply commenced to discuss L-Glutamine and never caught the original reference to Glucosamine.

    Glucosamine, of course, will have no effect on these issues.  And, just as an aside, there is plenty of debate as to whether it has much effect on treating joint pain and/or osteroarthritis.

    Were you a librarian in a previous birth?  You always so easilty catch my typos, grammatical errors, and now my lack of reading skills...  ;)

     

    Thanks

    Smile

  • 1714A
    1714A Member Posts: 2
    Sutent

    Hi  Nick,  I have taken Sutent for neuroendocrine cancer for 13 months; 37.5 mg. per day, 3 pills.  I take 3 pills for five weeks and one pill for one week in a six week cycle.  I am female, 5'7" and 140 lbs. My Oncologist is a Research M.D. from UCLA and uses Sutent for many patients.  He told me it does not matter whether you take it with or without food. So I always take it with food.  Only grapefruit juice and green tea are forbidden.  The Sutent has contained the cancer in my lymph nodes and is shrinking and killing the metastatic sites in my bone and liver, those lesions are healing. So the food does not seem to bother the Sutent at all and it would help your stomach.  Thank you for the advice on the Metamucil for diarrhea, it has really helped more than the Immodium.  I take the Sutent first with food and at least an hour later I take the Metamucil. The Metamucil does not interfere with the Sutent, you can tell by looking at my feet  and my white hair that the Sutent is absorbing quite well.  Gatorade May also help, the G2 Gatorade doesn't have all the sugar and it replenishes your electrolytes as well as helping your dehydration. Sorry about your nausea.  Thank you for your research NanoSecond, so kind of you to pass on your knowledge to us.  J

  • NanoSecond
    NanoSecond Member Posts: 653
    1714A said:

    Sutent

    Hi  Nick,  I have taken Sutent for neuroendocrine cancer for 13 months; 37.5 mg. per day, 3 pills.  I take 3 pills for five weeks and one pill for one week in a six week cycle.  I am female, 5'7" and 140 lbs. My Oncologist is a Research M.D. from UCLA and uses Sutent for many patients.  He told me it does not matter whether you take it with or without food. So I always take it with food.  Only grapefruit juice and green tea are forbidden.  The Sutent has contained the cancer in my lymph nodes and is shrinking and killing the metastatic sites in my bone and liver, those lesions are healing. So the food does not seem to bother the Sutent at all and it would help your stomach.  Thank you for the advice on the Metamucil for diarrhea, it has really helped more than the Immodium.  I take the Sutent first with food and at least an hour later I take the Metamucil. The Metamucil does not interfere with the Sutent, you can tell by looking at my feet  and my white hair that the Sutent is absorbing quite well.  Gatorade May also help, the G2 Gatorade doesn't have all the sugar and it replenishes your electrolytes as well as helping your dehydration. Sorry about your nausea.  Thank you for your research NanoSecond, so kind of you to pass on your knowledge to us.  J

    Gatorade G2

    Hi J,

    Many thanks for your kind words.  However I must take strong exception to your suggestion about consuming Gatorade G2 (or any other version for that matter).

    Exactly how much has the nutritional composition changed with Gatorade G2? An 8 ounce serving of G2 has 25 calories, 0 fat calories, 0 grams of fat, 110mg of sodium, 30mg of potassium, 7 grams of carbohydrates, 7 grams of sugar, 0 grams of protein and NO FIBER. An 8 ounce serving of regular Gatorade has 50 calories, 0 fat calories, 0 grams of fat, 110mg of sodium, 30mg of potassium, 14 grams of carbohydrates, 14 grams of sugar, 0 grams of protein and NO FIBER. So G2 has about half the calories and sugar(s) of the original Gatorade.

    If you read my guide to nutrition I explain in detail why a lack of fiber, combined with excess sugar(s), should be avoided at all costs for those suffering from any cancer.  It is a shame that many oncologists don't seem to understand (or perhaps the correct term is care) about how tumor cell metabolism differs from normal cell metabolism.  This is true for virtually each and every version of cancer out there.  It is certainly absolutely true for all versions of RCC.

    If you are worried about replenishing electrolytes, use Pedialyte.  It does have some glucose - but it is a very small amount that helps its other vital nutrients get easily digested.

    For simple hydration - please stick to water. Preferably not from a plastic bottle.  But I digress.

  • GSRon
    GSRon Member Posts: 1,303

    Gatorade G2

    Hi J,

    Many thanks for your kind words.  However I must take strong exception to your suggestion about consuming Gatorade G2 (or any other version for that matter).

    Exactly how much has the nutritional composition changed with Gatorade G2? An 8 ounce serving of G2 has 25 calories, 0 fat calories, 0 grams of fat, 110mg of sodium, 30mg of potassium, 7 grams of carbohydrates, 7 grams of sugar, 0 grams of protein and NO FIBER. An 8 ounce serving of regular Gatorade has 50 calories, 0 fat calories, 0 grams of fat, 110mg of sodium, 30mg of potassium, 14 grams of carbohydrates, 14 grams of sugar, 0 grams of protein and NO FIBER. So G2 has about half the calories and sugar(s) of the original Gatorade.

    If you read my guide to nutrition I explain in detail why a lack of fiber, combined with excess sugar(s), should be avoided at all costs for those suffering from any cancer.  It is a shame that many oncologists don't seem to understand (or perhaps the correct term is care) about how tumor cell metabolism differs from normal cell metabolism.  This is true for virtually each and every version of cancer out there.  It is certainly absolutely true for all versions of RCC.

    If you are worried about replenishing electrolytes, use Pedialyte.  It does have some glucose - but it is a very small amount that helps its other vital nutrients get easily digested.

    For simple hydration - please stick to water. Preferably not from a plastic bottle.  But I digress.

    N.S.

    Hey nano.. .are you familiar with a Dr Max Gerson..?  I was "whispered" his name the other day...

    Be Well..

    Ron

  • NanoSecond
    NanoSecond Member Posts: 653
    GSRon said:

    N.S.

    Hey nano.. .are you familiar with a Dr Max Gerson..?  I was "whispered" his name the other day...

    Be Well..

    Ron

    Gerson

    Hi Ron.  Yes, I am familiar with him and his therapy.  Sorry, I don't buy it.  However, there are many aspects of his diet that he got right - but for the wrong reasons.

  • TerriNick
    TerriNick Member Posts: 43

    Your update

    Hi Terri,

    I am not very surprised about your oncologist not knowing about the sildenafil.  Remember, that one is pretty far "out of the box".  I only know about it through the patent filing.  A patent filing is not a patent - it may or may not ever receive that status. Regardless, I have no idea if it will even work.  But the theory is sound - HFS may be due to lack of Nitric Oxide in epithelial cells and sildenafil applied topically might redress that. 

    Have you looked into the other technique based on using Henna?

    I am concerned about all the various others drugs that Nick has been prescribed.  Has anyone of his doctors thoroughly researched how they might interact?

    If you send me a list of what else he taking besides Losartan and Indapamide I can do a search to see what is out there.

    For example, did anyone explain to you that Losartan is both a substrate and an inhibitor of the CYP3A4 enzyme? That means it may act to increase the concentration of TKI's like Sutent or Votrient.  Anything that inhibits (decreases) the activity of this enzyme (such as grapefruit, grapefruit juice, Seville oranges) can increase the concentration of a TKI staying in the blood stream.  Beware.

    Similarly, Indapamide is a substrate for CYP3A4. That means it could work to deplete the overall amount of CYP3A4 available to metabolize other drugs.

    I realize this may seem rather complicated.  But these are key issues that your oncologist and other doctors should also be addressing.  Make sure all your doctors know about ALL the drugs (and supplements) that Nick might be taking.

    drugs

    Hi Nano

    Sorry I haven't been online. We had a public holiday over here and I took the weekend off for once in my life and didn't work or check anything online.

    Re medications Nick has tried Amlodipine and Felodipine and Ramipril without success and with loads of side effects. He is now on Losartan 25mg twice daily and Indapamide 1.5mg once or twice daily. These are still not managing his BP very well at those doses and I think that the cardiologist (who Nick is seeing today on his own) will probably increase the doses. Apart from those, Zantac and Sutent obviously he is not taking any other drugs except for the complementary ones.

    Did you want a list of the comp meds I have him taking?

    Terri

  • TerriNick
    TerriNick Member Posts: 43

    L-Glutamine

    You are correct.  Towards the end of my very first cycle on Sutent (50mg/day) I lost all sense of taste.  It was suggested to me by the folks at the Block Center for Integrative Cancer Treatment that I try taking L-Glutamine.  Within 2 or 3 days after starting on it my taste returned.  I then had a 2-week break off.  On my next cycel of Sutent I never lost my taste - so I never needed to take any more L-Glutamine.  And now, after 7 more cycles on Sutent, I still have not lost my taste.

    This supplement can also help to alleviate any metallic food taste as well as mouth sores, nausea, and diarrhea, etc.

     

    L-Glutamine is the most common amino acid found in our bloodstream. It assists in the process of turning excess hydrogen and nitrogen into ammonia in the kidneys. The body must do this for all the proteins that are consumed from either animal or plant sources.

     

    "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.

     

    But beware of using it for a very long and sustained period.  This is because after glucose, L-Glutamine is the next nutrient that many tumors may feed on. Be that as it may, the body can always obtain its L-Glutamine by the degradation of skeletal muscle. So trying to limit or eliminate it is not going to work to be a limiting factor to tumor growth. Taking a little more of it short term is similarly not a problem.

     

    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.

    glutamine

    Hi Nano

    How long is 'sustained use'? Nick is getting taste problems every month and is finding it really miserable. About 10 days into the four week cycle his taste is going off. I have a Glutamine powder and I am not sure how much to give him dose-wise or how often each day or for how many days before I stop it. Can you advise please?

    Terri

  • NanoSecond
    NanoSecond Member Posts: 653
    TerriNick said:

    drugs

    Hi Nano

    Sorry I haven't been online. We had a public holiday over here and I took the weekend off for once in my life and didn't work or check anything online.

    Re medications Nick has tried Amlodipine and Felodipine and Ramipril without success and with loads of side effects. He is now on Losartan 25mg twice daily and Indapamide 1.5mg once or twice daily. These are still not managing his BP very well at those doses and I think that the cardiologist (who Nick is seeing today on his own) will probably increase the doses. Apart from those, Zantac and Sutent obviously he is not taking any other drugs except for the complementary ones.

    Did you want a list of the comp meds I have him taking?

    Terri

    List

    Yes Terri.  I would like to see all the med's he is taking.  To save bandwidth, why don't you send the list to me directly?

    I think you have my email address.  But, if not, its:  [email protected]

  • Gfarmerrn
    Gfarmerrn Member Posts: 1

    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

    Sutent

    Hi: 

    I am a nurse and I find this very encouraging and interested in what 

    paper u have written about Sutent my old boss has beeI on Sutent for ten months now and his  dosage was lowered and now his lung mass has doubled in size I would like to know what your thoughts are?

     

    thanks 

  • NanoSecond
    NanoSecond Member Posts: 653
    Gfarmerrn said:

    Sutent

    Hi: 

    I am a nurse and I find this very encouraging and interested in what 

    paper u have written about Sutent my old boss has beeI on Sutent for ten months now and his  dosage was lowered and now his lung mass has doubled in size I would like to know what your thoughts are?

     

    thanks 

    My paper

    I am happy to share with anyone my guide to the science and rationale behind what I have called a "proper diet" and "appropriate" supplements for those sufferering from RCC.  It also explains some of the theory behind approaching cancer as a "metabolic" disease.

    However, it is a .pdf file (over 57 pages long).  So please email me at: [email protected]

    So I can send it as an attachment to an email to you.

    Best wishes,

     

    -NanoSecond (Neil)

  • NanoSecond
    NanoSecond Member Posts: 653
    Gfarmerrn said:

    Sutent

    Hi: 

    I am a nurse and I find this very encouraging and interested in what 

    paper u have written about Sutent my old boss has beeI on Sutent for ten months now and his  dosage was lowered and now his lung mass has doubled in size I would like to know what your thoughts are?

     

    thanks 

    In answer to your question

    I just realized I did not offer an answer to your question.  The average period of effectiveness for Sutent seems to be about 1 years.  So if your old boss has been on it for 10 months he may be seeing the effects of the tumor developing resistance to it.  This is perfectly normal and to be expected as some point for all the various anti-angiogenic drugs.  It means it may be time for him to switch to a different targeted therapy.  Definitely something to be discussed with his oncologist.

    You did not say what his inital dosage was - and then what it was lowered to.  But I assume it must have been lowered due to one or more adverse side effects.  Certainly it is also possible that lowering his dosage may have allowed the lung mass to grow.  It is hard to say without more information.

    Some patients have maintained a high dosage of Sutent by adopting an altered dosing cycle.  For example, by going 2 wks on / 2 wks off or 3 wks on  / 1 wk off; etc.  Again, a discussion with his oncologist is called for.

  • LivingDayByDay
    LivingDayByDay Member Posts: 1

    Slightly outside the box approach to pain relief

    If you are interested, one of the best "natural" anti-inflammatory agents available is the spice curcumin - found in Turmeric:

    Curcumin has multiple benefits leading with it being highly anti-inflammatory. In animal studies it was shown to protect the lining of the artery walls from damage caused by homocysteine.

     

    Curcumin (chemical name = Diferuloylmethane) is the yellow compound found in the spice turmeric. Curcumin has been shown to suppress tumor promotion and proliferation, inflammatory signaling, and angiogenesis (the development of new blood vessels). The anti-inflammatory activity of curcumin is, in part, due to its ability to inhibit enzymes that are necessary for the synthesis of lipid mediators of inflammation. In particular, curcumin inhibits cyclooxygenase-2 (COX-2: this is the same enzyme that is inhibited by the NSAID drug Celebrex®) and lipoxygenase. In studies on the effects of curcumin using human cells in culture it has been shown that the compound blocks the release of inducible nitric oxide synthase (iNOS) and COX-2 from airway epithelial cells, prevents COX-2 expression in mammary epithelial cells, inhibits cytiokine secretion from macrophages, and blocks the release of cytokines and ROS from arterial cells.

     

    More here: http://www.ncbi.nlm.nih.gov/pubmed/17569207

     

    Here is a study showing that COX-2 inhibitors may make VEGF inhibitors (specifically Sutent) work longer: "COX-2 inhibition enhances the activity of Sunitinib in human renal cell carcinoma xenografts": http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3566808/

     

    "Conclusion: COX-2 inhibition can extend the effectiveness of VEGFR inhibition. This effect is dependent on the timing of therapy. Clinical trials combining Su and COX-2 inhibitors should be considered as a means delaying time to progression on sunitinib in patients with metastatic cRCC."

    Further discussion about curcumin

     

    Hello NanoSecond, 

     

     

     

     

    Thanks for your link about the COX-2 and curcumin, its very interesting. Anyhow I have been on sutent 2 week on 1 week off now for just over a year now. Its still working because last CT scan 2 weeks go showed continued shrinkage of one tumour in my lung and the other tumour in my lung is now completely undetectable. Anyhow my main question is about curcumin, I am now taking regular doses of it each day (just started with BCM-95 high absorption formula).  My concern is I am reading on some web sites on the internet that curcumin inhibits CYP3A4. I am wondering if you know or  have come across any research that indicates how much it might inhibit CYP3A4 ?. In other words if I am taking curcumin at the same time I’m taking Sutent could the combination of taking both at the same time or even hours apart be increasing the blood levels of Sutent to a dangerous level; similar to the effects grapefruit juice does ?.

     

     

     

     

    Thanks

     

     

  • NanoSecond
    NanoSecond Member Posts: 653

    Further discussion about curcumin

     

    Hello NanoSecond, 

     

     

     

     

    Thanks for your link about the COX-2 and curcumin, its very interesting. Anyhow I have been on sutent 2 week on 1 week off now for just over a year now. Its still working because last CT scan 2 weeks go showed continued shrinkage of one tumour in my lung and the other tumour in my lung is now completely undetectable. Anyhow my main question is about curcumin, I am now taking regular doses of it each day (just started with BCM-95 high absorption formula).  My concern is I am reading on some web sites on the internet that curcumin inhibits CYP3A4. I am wondering if you know or  have come across any research that indicates how much it might inhibit CYP3A4 ?. In other words if I am taking curcumin at the same time I’m taking Sutent could the combination of taking both at the same time or even hours apart be increasing the blood levels of Sutent to a dangerous level; similar to the effects grapefruit juice does ?.

     

     

     

     

    Thanks

     

     

    Curcumin / Turmeric

    Yes, I am quite familiar with the research.

    However, there has been no effect found in any humans - only in animal studies.  These studies show that it tends to inhibit the CYP3A4 enzyme which would tend to increase the Sutent concentration.  It also tends to inhibit p-glycoprotein, which would also tend to increase the Sutent concentration in the blood serum.  So, in theory, it could make Sutent more toxic.

    I have been taking Turmeric (parent to Curcumin) while on Sutent at 50mg/day for over one year now.  Based on my experience (purely anecdoctal) I have not found this to be a problem at all.  I have not suffered any significant side effects while taking Sutent at this maximum dosage for 14 months - but recent scans indicate that Sutent is now failing me so I will be moving on to Inlyta (Axitinib) in one or two weeks.

    I have done extensive research on what should be the optimum diet (and appropriate) supplements for anyone fighting cancer based on the latest findings regarding normal and abnormal cell metabolism.  As such I have prepared a document that explains the science and rationale behind what I have been doing for the past year.  If you would like a copy just send me an email at:

    [email protected]

    and I will respond with it attached. It is presently a 66-page .pdf file.

    Best wishes in this Holiday Season,

     

    -Neil (NanoSecond)

  • mike_gilbert
    mike_gilbert Member Posts: 1

    Gerson

    Hi Ron.  Yes, I am familiar with him and his therapy.  Sorry, I don't buy it.  However, there are many aspects of his diet that he got right - but for the wrong reasons.

    Sutent information

    Hello Nano,

    I just joined the cancer survivors network.  

    3 years ago I was diagnosed with advanced renal carcinoma and they removed my right kidney.  The only other site I had was on the ischium.  I went through radiation treatment and a year of sutent, at which point I went into remission  Fast forward to 3 months ago and it's back.  I again went through radiation treatments and am now again taking Sutent to treat the site.  My PET scan shows it to be the only site and I am again enjoying all the marvelous side effects that brings such variety to my life.

    One that I have not had the pleasure to experience before is pain in the hip joint, which is downright annoying.  The others I have dealt with before (naseua, lack of appetite and general tiredness) and overall I am happy that I am still here

    I noted before that you have created documents about sutent and ways to handle the various side effects that can and often do crop up.  I would be greatly interested in any information you would be willing to share.  

    Thanks in advance and if you need anything else from me please ask

    mike

  • NanoSecond
    NanoSecond Member Posts: 653

    Sutent information

    Hello Nano,

    I just joined the cancer survivors network.  

    3 years ago I was diagnosed with advanced renal carcinoma and they removed my right kidney.  The only other site I had was on the ischium.  I went through radiation treatment and a year of sutent, at which point I went into remission  Fast forward to 3 months ago and it's back.  I again went through radiation treatments and am now again taking Sutent to treat the site.  My PET scan shows it to be the only site and I am again enjoying all the marvelous side effects that brings such variety to my life.

    One that I have not had the pleasure to experience before is pain in the hip joint, which is downright annoying.  The others I have dealt with before (naseua, lack of appetite and general tiredness) and overall I am happy that I am still here

    I noted before that you have created documents about sutent and ways to handle the various side effects that can and often do crop up.  I would be greatly interested in any information you would be willing to share.  

    Thanks in advance and if you need anything else from me please ask

    mike

    Guide to Nutrition

    Hi Mike,

    Yes, my document on proper nutrition does touch on taking Sutent - but it is not its primary focus.  It is an explanation of the science and rationale behind what I call a "proper" diet for cancer sufferers - or those hoping to avoid getting cancer in the first place.

    It is a 60+ page .pdf file (and its free).  If you are interested, just send me an email at:

    [email protected]

    and I will respond with a copy attached.

    Best wishes,

     

    -Neil (Nano)

  • Footstomper
    Footstomper Member Posts: 1,237

    Sutent information

    Hello Nano,

    I just joined the cancer survivors network.  

    3 years ago I was diagnosed with advanced renal carcinoma and they removed my right kidney.  The only other site I had was on the ischium.  I went through radiation treatment and a year of sutent, at which point I went into remission  Fast forward to 3 months ago and it's back.  I again went through radiation treatments and am now again taking Sutent to treat the site.  My PET scan shows it to be the only site and I am again enjoying all the marvelous side effects that brings such variety to my life.

    One that I have not had the pleasure to experience before is pain in the hip joint, which is downright annoying.  The others I have dealt with before (naseua, lack of appetite and general tiredness) and overall I am happy that I am still here

    I noted before that you have created documents about sutent and ways to handle the various side effects that can and often do crop up.  I would be greatly interested in any information you would be willing to share.  

    Thanks in advance and if you need anything else from me please ask

    mike

    Pain in the hip joint?

    A side effect of sutent? Surely not.

    When I had my first MRI the radiologist said that my hip must be hurting because of some bone degeneration. I told her it didnt and she promised me it would. It does! A lot! Are you telling me that this could be another side effect of Sutent?

  • Sonsweet
    Sonsweet Member Posts: 2

    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)

    diet and supplements

    would you please  send me the PDF regarding diet and supplements. My husband was just diagnosed with nonclear cell papillary ca all over the peritoneal surfaces and has just completed his first cycle of sutent . Mouth sores and diarrhea are his biggest complaint

  • Footstomper
    Footstomper Member Posts: 1,237
    edited May 2016 #60
    Sonsweet said:

    diet and supplements

    would you please  send me the PDF regarding diet and supplements. My husband was just diagnosed with nonclear cell papillary ca all over the peritoneal surfaces and has just completed his first cycle of sutent . Mouth sores and diarrhea are his biggest complaint

    Sutent

    I'm afraid Neil is no longer with us. I used to use Sutent, and now wholeheartedly recommend flushable moist wipes. Perhaps someone else has his pdf that they can forward to you.