Just starting treatment

I've had a rough summer and fall. Discovered tumors in Brain, colo-rectal area and lung. Had surgery to remove them. Brain and lung turned out to be metastatic rcc. My right kidney was removed 4 1/2 years ago. The colo-rectal mass turned out to be an abscess. Thought I was out of the woods but recent CAT scan found a met in my liver. Dr. decided to put me on Sutent.
I have hundreds of questions but would like some assurance that this stuff actually works. Also, med should be taken the same time each day. Any suggestions on a good Time?

On one message board it seemed like every one was named John- at least three! Would it help to change my name???

Wish me luck.

 

On 10/3/2008 OJohn wrote:

I've had a rough summer and fall. Discovered tumors in Brain, colo-rectal area and lung. Had surgery to remove them. Brain and lung turned out to be metastatic rcc. My right kidney was removed 4 1/2 years ago. The colo-rectal mass turned out to be an abscess. Thought I was out of the woods but recent CAT scan found a met in my liver. Dr. decided to put me on Sutent.
I have hundreds of questions but would like some assurance that this stuff actually works. Also, med should be taken the same time each day. Any suggestions on a good Time?

On one message board it seemed like every one was named John- at least three! Would it help to change my name???

Wish me luck.

I do wish you good luck.  I have metastic breast cancer all in my bones and stomach.  I don't know about this sutent but I do know about the fear and the will to leave.  Just hang in there.  Take care.  Sable

 

On 10/3/2008 sable wrote:

 

On 10/3/2008 OJohn wrote:

I've had a rough summer and fall. Discovered tumors in Brain, colo-rectal area and lung. Had surgery to remove them. Brain and lung turned out to be metastatic rcc. My right kidney was removed 4 1/2 years ago. The colo-rectal mass turned out to be an abscess. Thought I was out of the woods but recent CAT scan found a met in my liver. Dr. decided to put me on Sutent.
I have hundreds of questions but would like some assurance that this stuff actually works. Also, med should be taken the same time each day. Any suggestions on a good Time?

On one message board it seemed like every one was named John- at least three! Would it help to change my name???

Wish me luck.

I do wish you good luck.  I have metastic breast cancer all in my bones and stomach.  I don't know about this sutent but I do know about the fear and the will to leave.  Just hang in there.  Take care.  Sable  Opps mispelled live.  Hang in there. 

 

More than luck, I pray that you will be in God's hands.

My wife had her kidney out due to RCC in Jan., 2005. The surgeon thought there were "clean margins" & after several CT scans following surgery, we felt we were safe.  On the 3d anniversery CT, mets in both lungs & the kidney were found.  She went on Sutent on leap year day, this year.  After two rounds, the CT showed shrinkage in all leasions.  She continues on the 28/14 day regimine, but the dosage has been reduced to 37.5 mg/day.  It works, for some better/longer than others.

Prayer works for everyone.

saintgooch, aka larry

Hi  - my husband was DX mRCC, with lung mets and (later!) brain mets.

After his rad neph, he's been put on Sutent, which he takes at about 6 pm daily, though if you get bad immediate symptoms some folk take it last thing at night, so they sleep through them!. Four weeks on, two weeks off - standard cycle, 50mg dose (the strongest - they tend to put you on the strongest unless the sides are unbearable!)

The Sutent will, I hope, tackle the lung mets (multiple!)(as in, loads and loads). We were told it has a 75% chance of either holding the mets stable, with no growth, or actually reducing them (it's about 50:50 for either). Some folk are still going from the trial, and have been kept alive on Sutent for nearly five years, but that is not everyone of course. After Sutent there are still other drugs to move on to, and I have also read that sometimes they may think to put you back on to Sutent as it may get a second wind!!

Around three cycles of Sutent should be long enough to see whether it's impacting on the mets (we were told).

What is happenign about your brain mets? The docs don't yet know if Sutent gets through to the brain, as brain met patients were excluded from the trials, but there is now one running at Sloan Kettering though it won't report till 2010. I found a couple of case studies to indicate it MIGHT be tackling brain mets.

Otherwise, your options are neurosurgery, if the mets are in an operable position, or radiation. Radiation is either targetted (stereotactic), with various 'trade names' such as Gamma knife. We are hoping for this option ourselves. Success can be good. The other form of radiation is wholebrain radiation, which is when there are tiny mets scattered that are hard to target with the gamma knife. BUT, WBR carries more of a risk of mental impairment, suc has memory loss (gamma knife can cause it too, depending on where the mets are in the brain, but it's only confined to impairment of what the particular lobe function was, eg, visual, etc). We are hoping to avoid WBR, and hope that gamma knife is all we need.

All the very best to you, and I don't think we have an OJohn here so guess you are OK!!

Take care, Julie. 

 

Wishing you the best of all, John.  My husband had his kidney removed in Feb.  then in July they found renal cell in his lungs. In August in his brain where he had 15 radiation treatments and possibly more tumors. This was from a guy that was always healthy.

Now he just had ct scans of his chest abdomen, and pelvis. Then want to start Sutant.  He is so weak now and just was released from the hospital and put into a rehab facility to gain some strength.

This is such a dreadful disease but finding this website tells me that many people have very positive effects from many of the drugs.  Hopefully you will be another positive message for me to see.

God Bless!

Kim

Thanks for your good thoughts and best of luck to you. Ojohn

Kim all the very best with your husband on Sutent, and I hope he soon picks up strength, and some renewed optimism.

Best wishes, Julie

My story - -

My mother (Stage IV RCC with mets to lymphs and lungs) was diagnosed with cancer "of an unknown origin" on April 11, 2008.

After numerous tests and biopsies, a tumor was finally discovered on her kidney, but by then it had metastisized to her lungs and lymph nodes.  She began SUTENT 50 mg/day at the end of July and today will be starting her third cycle.  After having a CT scan 2 weeks ago, the tumors have shown no sign of growth (from the time it was discovered that she had cancer to the time she began treatment her tumors grew 30%)

Her "sides" have included nausea, vomiting, some minor skin discoloration, 'taste' changes, weight loss, fatigue, chills, acid reflux, bone pain and constipation.

She too, wondered if there was a "best" time of day to take the drug in order to lessen her side effects.  She tried in the morning, before bed and for this cycle has decided on taking it mid-afternoon.  From my observation, there doesn't seem to be any particular good time of day to take it... but do take it at the same time everyday.  Also, something I would recommend (that my mom is NOT doing right now) is changing your diet.  You may find that your diet will change out of necessity since your taste buds will change and your mouth may become sensitive to certain foods.  But try shakes, fruits or things with a lighter texture (i.e. yogurt, jello, etc.)  Also, as your energy allows, try going for a walk for a few minutes a day, it may help some of your side effects if you're able to keep your energy level up.

I will definitely keep you in my prayers, and please keep us all posted of your progression.

 Regards,

eringate

Dear Eringate, Thanks for the reply. I picked 6 PM as my medicine time. Seems to work OK. Completing my 2nd week tonight. My sides so far are limited to sore mouth and fatigue. Carbonated drinks burn my tongue and throat. I found small bites go down easier. My diet has changed mainly because my favorites, Mexican, Italian and Chinese are too spicy and painful. My buddy is a dentist and he wrote me a scrip for viscous lidocaine. I can gargle about a half tsp and it numbs my mouth and throat for about 10 minutes. Of course, can't taste, but food doesn't hurt being chewed or going down. Don't have my next scan scheduled. Regards, Ojohn