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Sutent 2 weeks on 1 week off

sierra28
Posts: 70
Joined: May 2014

Hi, I haven't been on this site since I started my chemo in April.  Was on 50 mg Sutent and had problems with my thyroid.  Put me down to 25 mgs of Sutent and still  have problems with my thyroid. I am of thyroids meds but they can't seem to get it adjusted  My nubers go back and forth from 1 to 25.  It was suggested that I do my Sutent 2 weeks on and 1 week off.  I was wondering if anyone has ever done this schedule with any success.

Kathy

Dutch1's picture
Dutch1
Posts: 146
Joined: Mar 2014

Kathy;

I was on Sutent for about a year.  I started out at the usual dosage, but I couldn't handle it either.  I ended up on a "2 week on, 1 week off" cycle, too.  After being on Sutent for the year, one new, small spot showed up.  When that happened, we changed drugs.  So, Sutent was a pretty good drug for me (even at the reduced dosage) for about a year before we decided to switch.  I understand that getting a year out of a drug is pretty good.  Would the new spot have showed up if I had been on a stronger dose?  That's hard to say.  You ask for success stories.  Well, my story is sort of successful. 

I have a thyroid problem also.  My readings don't jump around, though.  It's been easier to regulate.  Exactly when the thyroid problems started, I can't tell you for sure.  It could have easily been about the time I was on Sutent.  No link has been talked about with my doctors.

The drugs we take are very powerful and affect different people in different ways.  I've been told that determining the right dose for a person is a trial and error process.  That how I've come to understand chemotherpy.

I hope this helps and I wish you well.

Dutch

sierra28
Posts: 70
Joined: May 2014

Hi Dutch,

Very encouraging.  I am having a CAT scan Wed. and start back on my new cycle Thurs. I wish us both good luck with our scans. Thanks

Kathy

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Mines been up and down since I've started treatment whatever I've been given. I now take 300mcg L-Thyroxine 3 days a week, 225 4 days a week. All to be taken 20 minutes before any other drugs or food.

Are they taking the Mickey?

sierra28
Posts: 70
Joined: May 2014

Footstomper.

Thanks for the reply. Wow,I am only taking between 75 mg and 12.5.  Just had blood work done today and see dr. Wed.  Stat back on my 25mg Sutent Thurs.  Hope they have my thyroid under control now.

Kathy

Kangaroorex
Posts: 45
Joined: Jul 2016

I just started Sutent after discovering that Gilbert's syndrom and Prozabonib don't play well together.  I was offered either schedule and told by my doctor that he has patients on both with about equal success. 

I am currently on my second week of my first dose and really hoping that this will hold for a while.  The side effects are limited so some tiredness and some sore muscles.  First blood check showed no abnormalities.  Best of luck with your treatment!

sierra28
Posts: 70
Joined: May 2014

Kangaroorex,

I was on 50mg 4on and 2 off when I started my chemo in March.  The  biggest side effect I had was my thyroid going haywire and having a rapid heartbeat. With the thyroid my cavles of my legs would get so tired I could only walk about 25 feet and I would have to sop.  It got so bad that I would have to use a wheelchair to shop and go to drs. office. I don't think all drs. check thyroid levels as a rule, but I told him I wanted it done and then they found out that it was not even working and started me on meds. Good luck with your treatments.

Kathy

Kangaroorex
Posts: 45
Joined: Jul 2016

I can still walk fine, though every once in a while i really just want to sleep the day away, staying awake is hard!  but I have only had 2 days like that since i started and that may be partially to weird reactions from other meds keeping me awake all hours. :)

My doc is planning a liver panel because of the weird reaction i had to Prozapanib (SP?) as well as a thyroid panel.  Overall though the Sutent has not left me feeling worse for wear.

part of my problems is I am still recovering from some of the lingering side effects of the immunotherapy I was on.  It worked well for 2 years but it gave me a case of acute arthritis in my knees and shoulders.  apparently with the PDL1 drugs, if you have a family history of autoimmune disease the drug will trigger the symptoms.  Fortunately, they seem to go away when you stop the drug. (you try telling your PCP that you have a temporary case of arthritis - the look you get is priceless!)

Airie
Posts: 45
Joined: Mar 2016

I have been on Sutent since March. Scans in June showed reduction in lung met from 1.2cm to .7 so it's working! Oncologist at UCLA just changed me to 2/1 cycle 37.5 which I start Thursday. Will keep you updated on new regiment. Doing this to hopefully reduce SE. Hoping .25 relieves some of yours!

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Long may it continue!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

WTG Airie, and all!

sierra28
Posts: 70
Joined: May 2014

I spoke to soon.  Scan shows new tumors and a few have enlarged.  They will start me on Inlyta 5 mgs. twice a day next week.  I am worried about new chemo.This is my first time havibng to change my meds.  Don't know what to expect with this new treatment.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Both quite effective. I made the transition with no problems, side effects reduced temporarily. I was on it effectively until quality of life issues called for another change.

Good luck

Kangaroorex
Posts: 45
Joined: Jul 2016

Has anyone else gotten side effects that come and go?  I had been on Sutent for 2 weeks on Thursday and everything was going fine.  Then out of nowhere i started feeling constipated and bloated and from there the various effects including fast heart rate, nausea, heartburn, runs, muscle fatigue, soreness, and temperature ran for 4 days.  and then come this morning, its all gone again.  If someone else in the family was ill I would put it down to a bad reaction to a flu but this was isolated and pretty rough

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Tell your Dr. He can give you drugs to mitigate the worst of the side effects. I found sutent effective against the tumours but the side effects came and went with increasing severity and regularity. I confess to finding them more than a little trying.

Kangaroorex
Posts: 45
Joined: Jul 2016

Thanks Footstomper.  Good to know it wasnt just random illness, not so good that I can expect that again. :)

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Invest in some flushable moist towelettes. They make a difference! I love them so much I should get a commision!

Airie
Posts: 45
Joined: Mar 2016

Kangaroorex-

Please know I can empathize with all your SE. I had my radical nephrectomy 1/28/16. After all testing found mets in my lungs. I started 50mg Sutent 4/2 schedule. The SE became to difficult switched to 37.5 2/1 cycle after May scan showed 40% decrease in tumors. SE are more tolerable with 2/1 schedule. My side effects vary month to month. As Footstomper said Huggies gentle care wipes can be your new friend. Get Udderdly Smooth lotion. Apply to your hands feet couple times a day to prevent hand/foot breakdown. Immodium works well for diarrhea. I use Tums chewables in a m for heartburn. Drink lots water. I've also had muscle cramps. Staying with daughter in Calif who has in ground pool. I walk in it and helps cramping. Dr can prescribe Zofran as needed for nausea. Please keep your Dr updated on all side effects. Ive had great results with Sutent. Hope you have positive results also!

Cherie

Kangaroorex
Posts: 45
Joined: Jul 2016

Thanks to both of you.  my doctor changed me to a 2/1 schedule with the view point of it will be easier on my liver and give it more rests.  2 months of votrient gave me a 20% decrease then we moved to Sutent so we could see anything from stability to further decrease.  the wet wipes are definitely a friend although i seem to fall to the other end of the spectrum with constipation issues.  Heartburn has been a recent issue and annoying but controlled thru rantitide or tums or just reisiting eating for 3 hours before bedtime.  i had muscle cramps with Votrient but not yet with sutent. 

moderate term, my doctor is looking at getting into one of the HIF studies which sounds like it has all sorts of promise as a looooong term maintenance drug.  According to the little i could find and what I got from my doctor, it is supposed to shut down the gene failure causing the cancer, resulting in the tumor becoming a normal body cell:  it lives, it reproduces but it doesnt multiply.  it also has apparently almost non-existent side effects as long as you are a full grown adult.  This may be where i am headed in the future.

Thanks again for the info and support.

Roo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Good luck to you Roo. There's some great treatments coming on line, hope you get a good un

Nimie
Posts: 1
Joined: Nov 2016

Hi, I had radical nephrectomy and I am on Sutent after finding mets in lungs and liver.  My doctor has recommended 2/1 cycle.  I am going to start on my second session this week.  I had some side effects.  I have been asked to come back after 3 months for a check up.  I live in India and the medical process is not the same as in US. Is the 3 month period normal to wait for the next check up? Reading the posts it seems the case with some of you.  Do we have to wait for 3 months of Sutent treatment to do another CT scan to check on the growths? thank you for any information.

Dutch1's picture
Dutch1
Posts: 146
Joined: Mar 2014

Nimie;

For me, scans have been on 3-month intervals.  Whether that's just my oncologist's usual approach or if there are some definite reasons for not going sooner, I don't know.  I am very comfortable with that, even when new mets show up.

I wish you well.

Dutch

highwaydave66's picture
highwaydave66
Posts: 2
Joined: Feb 2019

Hi Im Dave I just joined today.Long story short on my situation.Back in early Nov i went to Med Express to check on if i had pnemonia, cause at the time  i was dealing with a cold and i was having shortness of breath. They ended up finding a mass on my kidney, sent me to hospital to get a CT scan.   They confrmed the mass on my kidneys and saw polups in my lungs, A few days later i have stage 4 Renal  cancer. My question is about this Sutent tat i am on. im one day away from starting my new cycleof pills but this past week has been hell.Breathing has been terrible, i walk 10 feet i lose my breath, my feet are swollen, big time sleep deprived vause when i lay down  i cant get comfortable or i lose my breath laying dow. This new cycyle starting tomorrow will be my 3rd  so ive gone thru theweel pff plan 3 times.. Isthis something i just gotta accept , that the week off from pills is  gonna be a walk thru hell for a solid week, cause right now im hating this bigtime Thank You

eug91's picture
eug91
Posts: 112
Joined: Jan 2019

While I don't have experience with Sutent, have you talked to your doctor about what you're dealing with? If the side effects are becoming hell, there are things that can be done - such as reducing the dosage or modifying the schedule. But don't do these things without discussing with your doctor first. 

Welcome to the board. Sorry you had to join us, but this is a great group. A tip - consider filling out your About Me page with your details.

Also, if you haven't already, consider joining the SmartPatients board - many Sutent users there who could share their firsthand experience. 

highwaydave66's picture
highwaydave66
Posts: 2
Joined: Feb 2019

ty for responding, i will definitly fill out the about me page and check out that smart patients board

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

I just finished up my second round of Sutent...I'm on a 4 week on two week off schedule.  The side effects have been tolerable for me.  There is the lack of taste that starts in week 2 and continues through my first week off.  By the end of the first week off, I feel pretty good.  Just have to start again though.  The second week off and the first week back on have been the easist for me.  My first round, I caught a bad cold which wrecked me.  The second round, I got a bad virus which landed me in the hospital for a bag and a half of fluids.  Have to be careful with my hands and feet.  Have another set of scans on Monday 3/4 so we'll see if these first two rounds were effective...if so, I'll start my third round on the 6th.  Good luck all.  

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