Starting Sutent

Hi All,

My mom had been detected Sarcomatoid Renal Cell Carcinoma on 29th Dec 2008. She had undergone Left side Radical Nephrectomy on 1st Jan 2009.

We got her MRI's, CT Scan, Bone Scan and etc which were disease free. But when we got her CT Scan done again on 27th Apr 2009 the tumor has come up again at few places.

The doctor has advised Sutent 50mg.

I will be starting the dose for my mom from tomorrow (29th Apr 2009).

Looking for advise for the first cycle.

Speedy Recovery to all.

Thanks & Regards,
Nina

Hello:

My experience with Sutent's side effects involved terrible GERD, bloating, fatigue, mouth sores, and acne on my face.

I learned to stay away from certain foods, such as dairy, spicey stuff, fried stuff. Someone I recall advised taking Sutent before bed, but for me, taking it early morning worked better since it was easier dealing with the GERD standing up then laying down when I went to sleep.

Also, I learned to eat dinner much earlier to reduce the GERD during sleep. Protonix prescribed by my doctor helped. I drank plenty of water which helped me.

Biotene mouth rinse and ambisol helped the mouth sores. Make sure you brush your teeth good to avoid a gum infection.

For the acne, Stridex pads helped.

Krys

Hi Kyrs, Thanks for your advise. I am sure these tips will really help me. Its her first day today .. I am hoping that everything just goes fine for her. . You take care of yourself. Regards, Nina

On 4/28/2009 Ike4y wrote:

Hello:

My experience with Sutent's side effects involved terrible GERD, bloating, fatigue, mouth sores, and acne on my face.

I learned to stay away from certain foods, such as dairy, spicey stuff, fried stuff. Someone I recall advised taking Sutent before bed, but for me, taking it early morning worked better since it was easier dealing with the GERD standing up then laying down when I went to sleep.

Also, I learned to eat dinner much earlier to reduce the GERD during sleep. Protonix prescribed by my doctor helped. I drank plenty of water which helped me.

Biotene mouth rinse and ambisol helped the mouth sores. Make sure you brush your teeth good to avoid a gum infection.

For the acne, Stridex pads helped.

Krys

 

On 4/28/2009 MNina wrote:

Hi All,

My mom had been detected Sarcomatoid Renal Cell Carcinoma on 29th Dec 2008. She had undergone Left side Radical Nephrectomy on 1st Jan 2009.

We got her MRI's, CT Scan, Bone Scan and etc which were disease free. But when we got her CT Scan done again on 27th Apr 2009 the tumor has come up again at few places.

The doctor has advised Sutent 50mg.

I will be starting the dose for my mom from tomorrow (29th Apr 2009).

Looking for advise for the first cycle.

Speedy Recovery to all.

Thanks & Regards,
Nina

Hi Nina,

I am coming to the end of round three on sutent, 50 mg.  The doctor did not expect me to get through the first round at the 50 mg. so I'm really pleased.

The first round I basically didn't have any side effects.  2nd round my blood pressure would start to elevate 3rd & 4th week so I'm on a blood pressure pill for 3 weeks in the cycle.  Water retention into the 4th week so I have a pill for that.  Acid reflex is also a problem.  Mouth a little tender but no sores.  Finger tips a little tender so I use lots of cream so they don't dry out.

I had a CT scan done after 2 rounds & my tumour is shrinking by a 3rd so we are very pleased.

I'm still working, walking, enjoying life as I have been before this.  They may be a day where I'm a bit tired so I slow down.

Best of luck to your mom & stay positive

Joanne

My husband, Big John, has been on Sutent almost two years and has all the side effects previously mentioned.  The good thing is that the tumors that were discovered in his lungs after he had his kidney removed in early 2006 have virtually disappeared, showing signs of improvement from his first CT scan following Sutent.

He takes his medication two days on and one day off, after having started with the four weeks on/two weeks off cycle.  Though he never gets a true "break" from the Sutent, the side effects diminished considerably with the new regime. 

Keeping positive, staying as active as posible, watching diet along with the medication have worked well for him.  I'm just looking forward to the day that the oncologist tells him he can go off completely.  In the meantime, we are in the keys--fishing, playing golf, and getting the time to do things we have put off for years.

Keep the faith and know that there are those here on the message board that will help in any way possible.   Dianna B

Hi,

 

I am now exploring this same drug as of today 5-1-09. I had a reoccourance and just had my lower left lobe of my lung removed. I heard this drug is really my only option at this time. Let me know the cost of this as I heard it is very expensive. The doctor is trying to get me approved for a discount. I have Blue Cross Blue Sheild of MA, but they are known for not allowing this drug. Last I was told the drug is $1500 but people I have talked to it was said this works.

 

Please keep me updated,

 

Mike

Hi Nina, The only thing you can do is take it one day at a time . Everyone has thier own reaction to the med , what one person gets for side effects is different for the next . My husband has been on sutent for almost 5 rounds now and thank GOD he only gets tired from the med that is why most take it at nite. Stay possitive and supportive This is a nasty monster our loved ones have to fight so its important that they don't feel they are alone in the battle.        my thoughts and PRAYERS to your MOM         

Hi, Thanks a lot for your advice and good wishes. Yes i agree its such a monster our loved ones and we have to fight. So much wish I had a magic wand and take away all the pain of her. Its her 4th day of the med. She is doing ok with little complaints. Hope her body accepts the med. Wishing you all the strength and your husband a speedy recovery. God is with all of us. Take care and keep in touch.

Hi Mike, I am from India I am paying Rs. 55,000 for 7 tabs. For my mom also they mentioned this tab is one of the nearest options available. Hoping it works. Why don't you try at MD Anderson (Houston, USA). My mom is being treated by Dr. Tannir. I believe the tab over there is available free of cost. Why don't you speak to them and find out. Wishing you a speedy recovery. Take care and keep in touch.