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Sutent cycle

TerriNick
Posts: 43
Joined: Mar 2013

Nick is on a 4 week on, 2 week off cycle on Sutent. But some people seem to be on a 2 week on, 1 week off cycle. And others, like Nano, are doing 4 weeks on and 1 week off - what an amazing man!

Is there any reason for this? And is there any medical difference between these different cycles? Is the 4/2 cycle more effective or what? We are a little confused and would like to understand better.

 

Are there people out there on 4/2 or 2/1 cycles and how do you find these cycles? Which do you think is best and do you find the side effects any different on the different cycles?

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

There are even, apparently, some on continuous administration but that seems to fly in the face of current thinking. 

Neil is tolerating his 4 on 1 off with no nasty s-e's perhaps as a result of his very judicious use of diet and supplements.

The latest findings are that 2 on 1 off is much superior to 4 on 2 off, leading to better results because the side-effects don't get a chance to build up to an unpleasant level before the break, which therefore also doesn't need to be so long.   Greater tolerability (and hence better quality of life) leads to higher compliance, easier toleration of higher dose level and consequent better therapeutic outcome.

The interesting line of enquiry now is 'pulsing' - the opposite of continuous administration of a fixed dose.   With this approach, much higher levels are given than the "maximum" present dose (50 mg/day) then a complete break, followed by another high dose.  This seems to wrong-foot the cancer and make it more difficult for it to develop resistance.  The optimal regimen for a given TKI is probably yet to be established.

 

NanoSecond's picture
NanoSecond
Posts: 623
Joined: Oct 2012

Hi Terri,

You are very kind to say that but my favorable response to Sutent is only due to my diet and the supplements I take. Regardless, as Tex points out, there are lots of different regimes being pursued out there.  Here are a couple of articles that may help make these choices more effective:

"Continuous Sunitinib Dosing Regimen Is Not Recommended in RCC":

http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid+Tumors&d_id=148&i=April+2011&i_id=720&a_id=16928

"Biweekly sunitinib regimen reduces toxicity and retains efficacy in metastatic renal cell carcinoma: A single-center experience with 31 patients":

http://www.ncbi.nlm.nih.gov/pubmed/23113655

I was unable to find any references regarding the "pulsing" therapy (at higher than recommended dosages) that Tex mentioned.  Perhaps he can provide some more details on that approach.  I do recall that someone once posted that he was taking 65mg/day - but he was part of a clinical trial.

I think the bottom line is to find a regimen that allows the maximum recommended dosage (50mg/day) with minimal side effects.  So that would argue for starting out on a 4/2 cycle and then moving to 3/1 or 2/2 if the side effects become too much to handle.

Darron
Posts: 250
Joined: Jun 2013

I am on 4/2, just starting 4th cycle. my side effects have varied every cycle and had the least impact on the third cycle. My Dr said it is not uncommon to "Get over the hump" and start handling it better. Side effectsave been:

stomache- diarrhea on and off. I eat mostly veggies and fruit with fish or chicken for dinner. Dairy seemed to bug me last cycle. Biggest thing is not to eat too much or allow myself to be too hungry. many small meals vs. one big one. If I eat too much or wait too long to eat, I get a bit of reflux.

hand foot syndrome - mild door me, but I have used udder cream several times per day. I have small amounts of cracking on my hands and fingers, the pads on my feet get sore, but I have bee. Able to walk 9 holes of god on weekends, so not severe as far as I can tell.

nose- it seems like my mucus coats the inside of my nose and makes it rigid. I coat it with aquaphor in the am and PM she. Bothersome. It loosens the coating and allows it to the blown out. I must be careful though, I have had low platelette count and have to watch for nose bleeds.

Skin- very see dative to sunburn. Texture of skin is rough toward the end of my cycles.

It usually takes 2 days for me to start feeling normal when the cycle is done. I should also note I am on trial with nivolumab, some of the side effects may be due to the combination. I don't think I have the ability to alter the dosing.

teas wedge recommended a cream for hand foot in the adrenal post recently. I have not tried it yet. 

Hang in there, hope next cycle is better and Nick gets over the hump.

 

MG1957
Posts: 8
Joined: May 2013

My husband is on Sutent 50mg 4/2 and just finished cycle 2. We are keeping our fingers crossed about cycle 3...we will be on vacation during his 3rd week.  He has had very minimal side effects, much improved during 2nd cycle from first. However I wonder if he wasn't still recovering from the nephrectomy during his 1st cycle.  

hand/foot syndrome - I have been putting bag balm on his feet after every shower since before he began Sutent.  I don't know if it can prevent any problems, but figured it sure can't hurt.  

appetite - his appetite has returned.  

mouth/taste/sores - I used to have frequent, numerous canker sores. I always attributed to citrus and stress.  But in looking for relief I was doing some surfing on the internet and learned a few years ago about SLS (the same ingredient that causes sudsing in laundry detergent, shampoo, etc.)  Most toothpastes contain it, but Sensodyne does not.  I switched and can't even remember the last time I had a canker sore (and have certainly been stressed these last few months!)  Anyway, I also had my husband switch to Sensodyne before beginning Sutent.  He flosses daily and rinses with Colgate Peroxyl rinse.  Excellent dental hygiene is important while on the Zometa anyway. So far only a bit of an issue with his tongue; says it feels like he ate something too hot, but not a huge problem.  He also dealt with a slight metallic taste during the 2nd round.  We read somewhere using plastic utensils can help, so we are...and it has nothing to do with me wanting to avoid doing dishes! Smile

dry mouth - suffered with dry mouth first round, but rarely 2nd round.  We discovered he prefers Oasis over Biotene for dry mouth, largely because it tastes better.  I carry a portable spray of Oasis in my purse in case it is a problem during the day, but he has never needed it.

fatigue - even his daily fatigue diminished this 2nd round.  He takes his Sutent about 10 p.m.  We read early on that doing so has you dealing with many side effects as you sleep.  We have no idea if that is true, but the schedule seems to be working for him.  He is less energetic in the morning than afternoon and evening.  He takes an early afternoon nap for 45 min to an hour and a half and wakes up really refreshed.  I will say that we noticed a big difference when he would doze in his recliner, as opposed to actually going in to bed to take a nap. We both think the nap is a more restful sleep. 

I don't know if any of these tips will help anyone, but much of the symptom alleviation seems to be trial and error.  

What I am most interested in seeing during this break is whether his wheeze and cough returns toward the end of his 2 week break from Sutent.  That wheeze and cough were the only symptoms he had that prompted further investigation before he was diagnosed with RCC.  It led to the chest X-ray and discovery of the nodules in both lungs.  Last time toward the end of his break, he had his first Zometa infusion.  Within 24 hours he was admitted to the hospital with pneumonia...the wheeze and cough had returned for first time since kidney removal.  I wondered then if the nodules had regrown to some extent.  Had we not just had a scan showing a 50% reduction, I would have been really concerned.  I also wondered if it was a possible reaction to his first round of Zometa.  Everytime the doctors were making their rounds, they were discussing whether it was actually pneumonia or the Zometa and we really never got a straight answer.  Has had his second round of Zometa with no problems.  If the wheezing and coughing returns toward the end of his Sutent break, I will be inclined to believe the cause is Sutent flares.  The info on Sutent flares that NanoSecond directed me to was very interesting.

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

Nano will have some useful comments to make about the zoledronic acid.  It's certainly very important to keep a close eye on the breathing issues.

You seem to be handling the side-effects well.  However, he would doubtless be better off on a 2/1  schedule.  I can't see any justification at all for starting on a 4/2 schedule.  The better accommodation of toxicity leads to better compliance and thus greater capacity for staying on the higher dosage. 

People seem to overlook the fact that you are getting just the same amount on 2/1 as on 4/2  but, overall, because of the lower toxicity, patients are more likely to actually get a larger total dosage over an extended period, which is why the therapeutic outcomes on 2/1 are better than on 4/2, as demonstrated in the Japanese paper Nano cited. 

I can't imagine why anyone would still opt for a posology that leads to suffering more side-effects and getting a poorer therapeutic outcome at the same time - a double whammy against the old 4/2 regimen.

NanoSecond's picture
NanoSecond
Posts: 623
Joined: Oct 2012

Hi Michelle,

I heartily endorse Tex's suggestion about changing to a 2/1 cycle for your husband.  His reasoning makes a lot of sense (as it usually does).  It should, at the very least, deal with any potential Sutent flare while still maintaining his full dosage.

As far as Zometa inducing pneumonia or other breathing issues - I can not find anyone who has reported this as a side effect.  That is not to say it is not possible - just extremely rare.

But you reported on SP that his Creatinine level has fluctuated as high as 2.0 and is now 1.6.  That is a good argument to look into switching to Xgeva (if he can).  Xgeva does not stress the kidney in any manner.  And so that would be one less thing to be concerned about.

I am very pleased that you have jumped in and are now contributing to the discussions on SP - as well as here, of course.

Best wishes,

 

-N

MG1957
Posts: 8
Joined: May 2013

NanoSecond and Tex - 

Is it within my husband's right as a patient to request a 2/1 schedule?  It was our understanding from the Oncologist that he had to try Zometa first and if that didn't work, they would try Xgeva.  Both insurance and VA have the same "rule."  Can we reasonably argue the Creatinine level as a basis to switch to Xgeva. I fought hard this afternoon in not accepting our insurance provider's claims that there were no Oncologists specializing in RCC in our network within a 100 miles of Columbus, Cincinnati or Cleveland, OH, nor within a 100 miles of Indianapolis.  The next person I talked to clearly had better search skills.  I gave her the two names I had researched in the area and one of them IS in our network.  Hopefully, with RCC being his specialty, it will give us some leverage with the VA to work with us.  The Oncologist there has said he absolutely will work with an outside Oncologist as long as he is in agreement with the proposed treatment of the outside Oncologist.  Since the VA Oncologist said it was ridiculous to believe tumors grow back within a two week time period (laughing as he responded), I have lost confidence. (And no, I didn't pull out the document on Sutent Flare that was in my folder...I chickened out!)

NanoSecond's picture
NanoSecond
Posts: 623
Joined: Oct 2012

Not sure what to say about dealing with the VA and all their "rules"...  Is there no room at all even for a second opinion?

Sutent flare is a real phenomenon - but it does not imply that a tumor "will grow back" in just 2 weeks.  It only means that angiogenesis (the formation of new blood vessels that feed the tumor) is active once again (i.e. Sutent is no longer working to stop blood vessel formation - so the tumor is no longer being starved for nutrients).  Most RCC tumors usually grow extremely slowly but flare implies a rapid onset of angiogenesis. But once the next Sutent cycle begins it will work to cut off those new blood vessels and the flare will cease.

The only way to convince a closed minded oncologist of the facts is first to show them to him.  So I hope next time you will share that paper with him.  Maybe then he will learn something useful.

Regardless, right now I would concentrate on meeting with that new oncologist who is an RCC specialist.  Perhaps he will be able to suggest the best way to maneuver around the obstinate VA onc.

I so sorry you are having to deal with this.  mRCC is bad enough. But medical incompetence is inexcusable.

However, from a therapeutic standpoint either Zometa or Xgeva will give benefit.  Xgeva is just more convenient and less stressful on the kidney.  But if the insurance company just won't budge don't be too concerned. Zometa will work perfectly fine.

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

Being based in Scotland, I am no authority on the VA 'rules', Michelle.  However, I can't see how they could possibly resist such a request.  It involves no change in the amount of drug taken, creates no problems for anyone else but markedly improves the quality of life for the patient as well as giving better therapeutic results. 

You can see on SP a Conversation today in which a guy who has been stable on Sutent for more than 6 years has benefited by tweaking his dose level and schedule and most recently has managed to stay on a higher dose by moving to a 2/1 schedule.

MG1957
Posts: 8
Joined: May 2013

Thanks everyone for your comments and suggestions.  We are pretty excited about the Sutent 2/1 possibility.  It makes perfect sense to both of us.  We are waiting for the referral to the RCC Oncologist.  My guess is we will see the VA Oncologist before we get in to see the RCC Oncologist. I am handing the paper on Sutent Flares over when we see him; better yet, I will have Bob hand it over!  

I get a little lost roaming around here, but I saw somewhere (either here on SP, a poster talking about the size of mets to the femur.  That is my point exactly...we are pretty sure it is mets based on the full body scans and the reports, but no clue as to how extensive or specific size of lesions or tumors in any given area.  How can we know if the bones mets is improving or not if there is no baseline?  

As a side note, Bob took his last dose of Sutent Sunday evening and already the wheeze is starting up again.  Just more supporting evidence for the 2/1 schedule.   

We really appreciate the feedback, suggestions and opinions.  Again, thank you!

 

TerriNick
Posts: 43
Joined: Mar 2013

Hi Darron - what is udder cream please? Nick gets hand/foot syndrome and as he plays guitar and teaches dance it is causing a few problems. Anything I can try that might help would be useful.

Terri

Darron
Posts: 250
Joined: Jun 2013

I bought it at CVS. it comes in a white 12 oz tub and the lid has black spots like on a cow. It is about 2 inches tall and 3 inches in diameter. It was in the hand and body cream section.

The label reads:

UDDERLY SMOOTH

body cream

Udder Cream

if you can't find it, post on the site a new post for udder help.

i don't know how many cycles Nick has been thru, but this is my 4th. Every cycle seems to have a different side effect that impacts me. Usually the same side effects, but different ones are more sever on each cycle. I have had good luck taking the Sutent at night before I go to bed.

slight hand and foot sensitivity

sensitive tongue- sometimes to texture, sometimes to cold, and sometimes to spicy food

Extreme sun sensitivity 

heartburn- I take tums

my mucus coats the inside of my nose and makes it uncomfortable and rigid

Mostly nagging stuff, living normal for the most part.

 

Please share any good tips.

 

TerriNick
Posts: 43
Joined: Mar 2013

Hi Darron

 

Thanks for the post. We tried Vitamin B Strong Compound for the sensitive tongue as Nick had that problem in his first cycle (just finished cycle 4) The pharmacist recommended Vit B Strong Compound - didn't think it would work, but it did. However would suggest that you check it with your doctor or Onc before taking it as you make have different medical issues than Nick. But thought I would pass the info on to you.

 

We had a good result today. Saw the Onc and found out that he had 5 mets plus the Kidney tumour. The kidney was removed in December and then he was on Sutent in Jan. According to the news today 2 of the mets in the lung are now 'undetectable' and the 3rd has shrunk from 3.2cmx4cm to 1cmx2cm and the 2 bone mets are stable. We are somewhat happy about this as you can  imagine.

How are you getting on with Sutent?

 

 

Darron
Posts: 250
Joined: Jun 2013

Blood showed slight elevation in Creatinine today, so they gave me 2 bags of fluid and put me on strict orders to drinks at least 2 1/2 liters of water per day, and measure it. I find it a bit comical that a drug for Kidney Cancer has side effects of kidney problems.

I was off for 3 days for my tongue to heal. My dentist prescribed NeuteSal to help with dry mouth and sores. It seemed to help, even though the one isolated sore was the only issue I was having. I am a bit unique with Sutent in that I am required to be 4/2 (I think I am required) as part of the trial. I am still 50 mg. I feel like the Sutent is a secondary importance to the Nivolumab. There was no hesitation to stop for a few days for my tongue to heal. Dosage was critical in the first cycle to stay on trial, but the importance now is to stay in the trial and keep the Nivolumab comingI if that means smaller dosee to keep my kidney working, then so be it. The comment was "this is a marathon, not a sprint"

TerriNick
Posts: 43
Joined: Mar 2013

You are so right on that one. If you can keep on Nivolumab then do whatever you need to do. Nick is in a study (Surtime) looking at the Sutent meds and if it's best to have op first then Sutent or the other way around. So I understand about the trial/study regime - you have to keep it to exactly what they want. That's why Nick is on the 4/2 cycle and currently 50mg. But we are keeping our fingers crossed that there might be a trial/study soon with Nivolumab. Good luck with it Darron, we will keep our fingers crossed.

Darron
Posts: 250
Joined: Jun 2013

Terrinick

Same with me - 50mg on the 4/2- trial directions.

i am on day 19 today, feeling like crap ( minor stuff) but pushing thru it!

AprilandChuck's picture
AprilandChuck
Posts: 105
Joined: Feb 2013

Walmart also carries it the drugest told us they move it around sometimes its in lotions sometimes it's in first aid by the bandages and such..huggss

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