CSN Login
Members Online: 11

Sutent Side Effects

TerriNick
Posts: 43
Joined: Mar 2013

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?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 43
Joined: Mar 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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
Posts: 43
Joined: Mar 2013

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
Posts: 43
Joined: Mar 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

dbeattysr
Posts: 1
Joined: May 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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
Posts: 31
Joined: Mar 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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
Posts: 31
Joined: Mar 2013

I would be very interested!

 

Thanks!

Karen

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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:

n.feldman@videopost.com

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

 

-Neil (NanoSecond)

Gfarmerrn
Posts: 1
Joined: May 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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: n.feldman@videopost.com

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

Best wishes,

 

-NanoSecond (Neil)

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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.

vdm13
Posts: 35
Joined: Jul 2012

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
Posts: 58
Joined: Aug 2012

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.

todd121
Posts: 564
Joined: Dec 2012

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

Mikeyswife
Posts: 31
Joined: Mar 2013

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
Posts: 5
Joined: Mar 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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
Posts: 5
Joined: Mar 2013

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.

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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

TerriNick
Posts: 43
Joined: Mar 2013

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 :)

 

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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

TerriNick
Posts: 43
Joined: Mar 2013

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

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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.

TerriNick
Posts: 43
Joined: Mar 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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.

TerriNick
Posts: 43
Joined: Mar 2013

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

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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:  n.feldman@videopost.com

Mboyle5340
Posts: 1
Joined: Mar 2013

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

mboyle7749@sbcglobal.net

NanoSecond's picture
NanoSecond
Posts: 522
Joined: Oct 2012

It is on its way to you.

mountcarmel
Posts: 5
Joined: Mar 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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.

LivingDayByDay
Posts: 1
Joined: Dec 2013

 

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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:

n.feldman@videopost.com

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

Best wishes in this Holiday Season,

 

-Neil (NanoSecond)

mountcarmel
Posts: 5
Joined: Mar 2013

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
NanoSecond
Posts: 522
Joined: Oct 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Smile

TerriNick
Posts: 43
Joined: Mar 2013

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

Mikeyswife
Posts: 31
Joined: Mar 2013

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!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network