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Sutent Side Effects

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Comments

  • NanoSecond
    NanoSecond Member Posts: 653

    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.

    Drug Interactions

    Hmmm.  Who are "they" who gave you that advice about Tylenol vs. Ibuprofen?

    Acetaminophen:

    http://www.drugs.com/disease-interactions/acetaminophen,tylenol.html#Liver_Disease

    Ibuprofen:

    http://www.drugs.com/disease-interactions/ibuprofen.html#Renal_Toxicities

  • todd121
    todd121 Member Posts: 1,448
    Eliezer2 said:

    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.

    Nausea

    For nausea, my doctor gave me a prescription for Zofran. It's a dissolvable tablet that goes right to work. He said it's very safe and they have many different delivery methods. It probably has less side effects than the over-the-counter stuff. The anti-motion sickness stuff I've bought in the past has had side effects like dry mouth or dizziness among others. I've noticed no side effects with Zofran.

    Todd

  • TerriNick
    TerriNick Member Posts: 43

    Drug Interactions

    Hmmm.  Who are "they" who gave you that advice about Tylenol vs. Ibuprofen?

    Acetaminophen:

    http://www.drugs.com/disease-interactions/acetaminophen,tylenol.html#Liver_Disease

    Ibuprofen:

    http://www.drugs.com/disease-interactions/ibuprofen.html#Renal_Toxicities

    continuing

    We have been giving Nick quite a few of the complementary treatments that Nano suggested in his PDF and I have to say that they have really helped a lot. We have not told his Oncology Consultant about them simply because the look on her face after his first Cycle when we told her that he was taking Vitamin B for the mouth sores said it all. She is very competent and we have complete faith in her as a doctor but neither she nor any of her staff or colleauges consider such complementary treatments worthwhile. 

    I find it amazing that someone who is willing to take responsibility for his own wellbeing is frowned upon and the impressoin that we got was that we should leave it up to the medical doctors because they know what they are doing. It seems that silence is the best thing we can do.

    However one side effect he has experienced this month is sores on the soles of his feet near his toes. This is a problem as he is a dance teacher (ballroom and latin) and so really needs to be on his feet. It didn't happen in Cycle 1 or 2, just Cycle 3. I was wondering if anyone had any suggestions for how to speed up his recovery or help with the pain of walking please?

    By the way Nano, I just wanted to say a huge thank you for taking the time to research and write that document. You rock man :)

     

  • mountcarmel
    mountcarmel Member Posts: 5
    sutent side effects

    sorry I was wrong, yes, tylenol is what the onc doc said to take and not ibuproben, but for the side effects he is experiencing at this time, sore hip and knee joints, the doc said ibuproben would help eleviate some of the pain but my husband should not take it often, which he hasn't and it did help.  He had new labs today and his liver enzymes came down from his last labs.  Thanks for looking out for us with your advice.

  • NanoSecond
    NanoSecond Member Posts: 653
    TerriNick said:

    continuing

    We have been giving Nick quite a few of the complementary treatments that Nano suggested in his PDF and I have to say that they have really helped a lot. We have not told his Oncology Consultant about them simply because the look on her face after his first Cycle when we told her that he was taking Vitamin B for the mouth sores said it all. She is very competent and we have complete faith in her as a doctor but neither she nor any of her staff or colleauges consider such complementary treatments worthwhile. 

    I find it amazing that someone who is willing to take responsibility for his own wellbeing is frowned upon and the impressoin that we got was that we should leave it up to the medical doctors because they know what they are doing. It seems that silence is the best thing we can do.

    However one side effect he has experienced this month is sores on the soles of his feet near his toes. This is a problem as he is a dance teacher (ballroom and latin) and so really needs to be on his feet. It didn't happen in Cycle 1 or 2, just Cycle 3. I was wondering if anyone had any suggestions for how to speed up his recovery or help with the pain of walking please?

    By the way Nano, I just wanted to say a huge thank you for taking the time to research and write that document. You rock man :)

     

    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

  • NanoSecond
    NanoSecond Member Posts: 653

    sutent side effects

    sorry I was wrong, yes, tylenol is what the onc doc said to take and not ibuproben, but for the side effects he is experiencing at this time, sore hip and knee joints, the doc said ibuproben would help eleviate some of the pain but my husband should not take it often, which he hasn't and it did help.  He had new labs today and his liver enzymes came down from his last labs.  Thanks for looking out for us with your advice.

    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."

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    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."

    Slightly outside

    As I was reading your earlier post Neil, I was downing my regular turmeric along with a couple of glasses of red wine, paracetamol and ibuprofen!

    Incidentally, I've been beta testing Smart Patients for about seven months.

    My Onc is happy with me taking ibuprofen when I deem it necessary so long as it's not routinely.  When pain is a bit worse, I find better relief from it (an anti-inflammatory, of course, so better suited to cancer but for the kidney health contra).  I'm still trying to reduce my paracetamol intake when I can and only use ibuprofen once in a while when I would otherwise not be able to sleep for the pain.

  • NanoSecond
    NanoSecond Member Posts: 653

    Slightly outside

    As I was reading your earlier post Neil, I was downing my regular turmeric along with a couple of glasses of red wine, paracetamol and ibuprofen!

    Incidentally, I've been beta testing Smart Patients for about seven months.

    My Onc is happy with me taking ibuprofen when I deem it necessary so long as it's not routinely.  When pain is a bit worse, I find better relief from it (an anti-inflammatory, of course, so better suited to cancer but for the kidney health contra).  I'm still trying to reduce my paracetamol intake when I can and only use ibuprofen once in a while when I would otherwise not be able to sleep for the pain.

    With you outside the box

    Trevor - I have to admit that I have hit the ibuprofen bottle a few times myself.  When I experienced "Sutent flare" back around Christmas nothing worked to relieve my pain except ibuprofen. Paracetamol was not effective.

    I fully agree that there is very little risk if you use either one of these drugs intermittently.  However, I still would be careful taking them with any alcohol.

    All my "rules" are made to be broken - as necessary - of course.

  • TerriNick
    TerriNick Member Posts: 43

    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

    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

  • mountcarmel
    mountcarmel Member Posts: 5
    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.

  • 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).