Sutent Side Effects

mountcarmel said:

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.

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 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

 

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 said:

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."

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.

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

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 said:

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 spoke about? Curious to review before going to my mediCal oncologist.

mboyle7749@sbcglobal.net

Texas_wedge said:

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?

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.

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 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.

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.