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Changing from votrient to sutent

saintmont
Posts: 63
Joined: Feb 2013

Hi, I have had a bad month. I had 3 weeks of vomitting and Diarreha. I ended up in Emergency with an electrolye imbalance and AF was put fluids. My blood test in ED were fine except for electrolyces. Had blood test a week later (fasting) them my liver function went sky high. Had my 3 Monthly CT scan on the 11/6 and votrient had stopped working after 15 months a new tumour in lungs to go with the other 9 and para aortic lynth node enlargement not sure if cancerous. So my onc has decided to go on to Sutent. So I am after advice about sutent like when to take it, with food or on empty stomach etc and what nasties to look out for. 

Regards Saintmont

Bellweather
Posts: 100
Joined: Jun 2013

I have been on sutent for about 8 and half months after 1 wk of hdil2.  I take my 50mg tablet around 8pm , 1wk on, 1wk off, just ate one a minute ago.  I have had somevshrinkage of lung mets and tolerate the meds with some of the listed side effects.  Get yor doctor to give you a px for diarrhea before you start, I have diphenoxylate atrop 2.5mg, use it for my 1wk on, works great. You will need utter cream for hands and feet, sensitive tooth paste, etc, their are good recommendations on line for the sideceffects and meds.  Dont let all this info scare you, I have been able to work full time with plenty of travel, played golf last weekend and shot 83, and I am going to callaway gardens this week for a family reunion while on my week of meds, I haveca ttime for thursday.  I have some cramps and other discomforts.  Lost taste for awile but have it back, hair turning silver on arms, eye brows etc, some slight shortness of breath and pretty sensitive to the sun, I use spf 50 and play golf and water sports often in the deep south.

I hope this helps, let me know if you have any specific questions I may be able to help with and keep fighting! 

saintmont
Posts: 63
Joined: Feb 2013

Hi, Thanks for the information. I work Full-time and play golf had 89 last saturday.

Regards Saintmont 

Bellweather
Posts: 100
Joined: Jun 2013

Golf is a great outlet to relieve stress.  Keep in touch and we can trade sutent tolerance methods.  I also have a px for prilosec for acid reflux as thee sutent is tough on the stomach.  

saintmont
Posts: 63
Joined: Feb 2013

Hi, At the momment My Onc is still trying to work out why my liver function is out of balance. This week I have had a ECG,Echo and US of my liver. I am hoping to start sutent in the first week of July.

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

I was on it from Feb-Oct 2013 and since April 2014

 

  1. shot 71 two weeks ago, walking (33 on the back side)
  2. Udder cream for hands and feet, change to dry socks at the turn
  3. sunscreen is a must
  4. prilosec for acidic stomach. I am 4 weeks on two off
  5. odd taste for all food but gets better inoff weeks 
  6. Grey eyebrows (pull one, they actually are banded dark and grey)
  7. odd mucus I'm my nose, just irritating
  8. get some wet wipes, my behind gets tender if my stomach acts up

other than those things, life goes on as normal.

I am in a trial for Sutent  with Nivolumab, see personal info for details

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Hi Saintmont,

I have not been on Sutent so I can't help you there, but I was on Votrient for 5 weeks before my liver enzymes shot up.  That is not uncommon with Votrient.  It took 5 weeks for mine to return to normal range so you probably just need to be patient a few more weeks for them to come down.

Kahy

saintmont
Posts: 63
Joined: Feb 2013

Hi, thank you for your advice. Still waiting to start sutent I see my ONC this thursday so hope I will have a clearer picture of when starting sutent.

Regards saintmont

saintmont
Posts: 63
Joined: Feb 2013

Hi, do take sutent with other tablets say BP tablets or do you take it at a seperate time I just need to know the best way of taking the tablet. I am starting to take sutent next tuesday

Regards saintmont

cubsfan9
Posts: 66
Joined: Oct 2013

Good Morning!

When it comes to Sutent...or any or the other drugs...one size does not fit all!  Everyone has different side effects, ways of dealing with them, etc.  So, I can only share our experience.  From what I read on these discussion boards, his SE's have been pretty minimal and we have found them quite manageable.

My husband, also a golfer!, started on 50 mg in Jan 2013.  He became very ill, partly due to the drug and partly due to a virus.  His dosage was tinkered with and he has been on 37.5 mg for 12 rounds--4 wks on/2 wks off.  Fortunately his sister, who is a pharmacist, encouraged us to order 12.5 mg capsules so that it would be easier to adjust the dosage if necessary! 

He has had excellent response with considerable shrinkage to the large tumor on his pancreas during the first 6-9 months and stability since then.  His worst side effects have been fatigue and diarrhea.  He is unable to take the standard over-the-counter anti-diah meds as they upset his stomach.  He has found that Metamucil wafers help him more than anything else.  Fatigue is managed however you can...pace yourself, nap as needed.  Mouth sores and taste issues are also present, but tolerable.  As others  mentioned, it is tough on the stomach.  He manages night time indigestion/reflux/whatever by not eating in the evening, avoiding spicy or acidic foods during his 'on' weeks, and taking a couple Pepcid Complete tablets at bedtime.

He has always taken his Sutent along with his BP meds in the morning with breakfast.  I don't know of any information that indicates you should not take them together.

Praying you are able to tolerate and have good results using Sutent!                                ~Sharon

saintmont
Posts: 63
Joined: Feb 2013

Hi, Thank you for the advice it will be very helpful I am starting sutent tuesday.

Regards saintmont

saintmont
Posts: 63
Joined: Feb 2013

Hi, started sutent everything going fine at the momment. Saw cardio team last week they want to shock my heart to get it out of AF they will dicuss with my ONC before they do anything.

Regards saintmont

saintmont
Posts: 63
Joined: Feb 2013

Hi All, I am just about to start my 2nd lot of sutent. The first month went well no adverse effects . I know it sounds strange but I actually felt like a normal person again. The only side effect I had it will sound funny when I did go to the toilet it felt like I had eaten a hot curry the night before ( the old burning ring of fire).

On a sad note my mother -in -law passed away on 26/7/14 she had her kidney out in 2010, but it was'nt RCC with was the problem the primary was lung cancer which came later.

My golf is ordinary at the moment I only play once a week as it is winter down in Tasmania and Mount Wellington has snow on it.

Regards saintmont

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Nice that you're tolerating the sutent. I hope it does a good job for you.

Todd

saintmont
Posts: 63
Joined: Feb 2013

Just a catch up on how I,m going.Saw my Onc yesterday for result. I had my first scan since being on sutent. Scan were pretty good bigger tumours shrank a little a couple little tumour grew slightly and no new tumours. Overall I thought that was pretty good for a 6 month period. I am still handling sutent quite well still have issues with sore feet by the second week but I will take that over diarrehea any day. My bloods are find I still working full time and playing golf and exercising.

Regards saintmont

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

That's the way to move on and live saintmont. Only thing missing is pizza and beer.

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