Surviving Rcc

Hello,

 I was first diagnosed with RCC in Sept of 2001. In Dec, a lemon sized tumor was removed laproscopically (the best) along with my left kidney at Dana Farber in Boston. In March, 2002 I entered a clinical trial involving IL2 and Bay 50, a mixture not as severe as IL2 alone but challenging, nonetheless. I could only handle three courses over three months.

The mets in my lungs, present from day one of the diagnosis, had slightly dereased or stayed the same size for the next 4 years.

After a CT in 2006, my doc decided to have a PET scan done to determine if these remaining nodules were scars or cancer. PET scans don't seen to indicate RCC very well. I was clean. They then discovered a previously undected 2.0cm mass in the tail of my pancreas. I underwent an endoscopy to biopsy this mass ( believe it or not, praying it was RCC) and it was.

I started on SUTENT in Jan. 2007 and am now on. I think, my 6th course. I started at the 50mg level, had all the side effects, told the Doc and we lowered it to 25mg. I handled that easily and have gone up to 37.5 mg for this course. It's effectiveness seem to be based on the dose, so those of you who are on it take what you can stand but don't be afraid to tell the doc to lower it.I believe it will still do the job!

Bottom line #1: All nodules decreased by 20% to 50%. The pancreas nodule, difficult to measure, appears to be dying.

Bottom line #2: More than half of all people who are diagnosed with cancer, die of another cause.

Bottom line #3: Do not treat doctors as Gods. One surgeon told me that laproscopic surgery takes too long! I was home in three days from the hospital, after I found another surgeon.

Bottom line # 4: Be your own advocate or get one who isn't afraid to ask the tough questions. Second, third and fourth opinions, for sure. Be an informed consumer of the medical services you are going to receive.

There is an ultimate power who will determine when "your ticket is punched" but there's nothing that says we can't do our best to make sure it's not too soon.

We are all in this together and my prayers are with you all. Keep on keeping on!

LDH

 

On 8/4/2007 Lloyd wrote:

Hello,

 I was first diagnosed with RCC in Sept of 2001. In Dec, a lemon sized tumor was removed laproscopically (the best) along with my left kidney at Dana Farber in Boston. In March, 2002 I entered a clinical trial involving IL2 and Bay 50, a mixture not as severe as IL2 alone but challenging, nonetheless. I could only handle three courses over three months.

The mets in my lungs, present from day one of the diagnosis, had slightly dereased or stayed the same size for the next 4 years.

After a CT in 2006, my doc decided to have a PET scan done to determine if these remaining nodules were scars or cancer. PET scans don't seen to indicate RCC very well. I was clean. They then discovered a previously undected 2.0cm mass in the tail of my pancreas. I underwent an endoscopy to biopsy this mass ( believe it or not, praying it was RCC) and it was.

I started on SUTENT in Jan. 2007 and am now on. I think, my 6th course. I started at the 50mg level, had all the side effects, told the Doc and we lowered it to 25mg. I handled that easily and have gone up to 37.5 mg for this course. It's effectiveness seem to be based on the dose, so those of you who are on it take what you can stand but don't be afraid to tell the doc to lower it.I believe it will still do the job!

Bottom line #1: All nodules decreased by 20% to 50%. The pancreas nodule, difficult to measure, appears to be dying.

Bottom line #2: More than half of all people who are diagnosed with cancer, die of another cause.

Bottom line #3: Do not treat doctors as Gods. One surgeon told me that laproscopic surgery takes too long! I was home in three days from the hospital, after I found another surgeon.

Bottom line # 4: Be your own advocate or get one who isn't afraid to ask the tough questions. Second, third and fourth opinions, for sure. Be an informed consumer of the medical services you are going to receive.

There is an ultimate power who will determine when "your ticket is punched" but there's nothing that says we can't do our best to make sure it's not too soon.

We are all in this together and my prayers are with you all. Keep on keeping on!

LDH

LDH,

Thank you for sharing your experience with us.  I visit this site everyday to see what more I can learn about SUTENT.  My husband was diagnosed in May of 2003 and had his left kidney removed.  He had a c-scan 2 months after the surgery and all was clear.  The doctor decided to get another c-scan in May of 2007 (first one since August of 2003) and found that the cancer had returned and was metistatic.  It had spread to the lungs, many lymth nodes, and behind the chest wall.  He also has tumors filling the cavity where his left kidney was removed.  He had a large tumor on his right kidney and several in the middle.  My point of telling this is to give others a perfect example of what you had said about not thinking doctors are GODS.  If only I had known about sites like this one in the past.  If only I had done my homework and research other options.  If only...  Well I am researching and educating myself as much as I can and looking at all options this time around.  My husband is also on SUTENT and about to begin his 3rd cycle.  He too has suffered from many side effects and we are finding that the doctors (which are highly educated and wonderful) are not as familiar with SUTENT as we would like.  That's why we are going to MOFFIT cancer center for further evaluation.  He cannot continue the 50 mg of sutent much longer but he wants to finish the first 3 months and get a new c-scan to see if it is doing anything for him.  Thank you for trying to get the message out to others.  If only I would have received your message in 2003.  Who knows where we may be at this time.

Good luck to you and keep the great attitude.  God Bless,

Jeff's girl

Before reading your entire entry I was going to suggest a GU oncologist, but I see that your husband is going to go to Moffitt, what a God send that hospital is, Tom is a patient there now as of July 17th.  He sees Dr. Fishman, he's GREAT!!!  Very honest and straight to the point, which is what people with this disease need.  You are definately right about general oncologist not knowing enough about Sutent or RCC for that matter.  Tom is on his 1st cycle of Sutent and is VERY tired (so far that's it for the side effects) he sleeps like 16 hours a day, I was wondering if that was normal?  I was thinking that it was a combo of side effect and depression, but wanted some input on others on Sutent.  Just today he said he felt like he was getting a cold, and a little light headed???????  Do you think I should try to get him out of the house or just let him rest?  Any suggestions are greatly appreciated.

Fight on WARRIORS, Fight on,

Cindy

This is my third cycle with Sutent. My first was 50 mg and on my forth week I ended up in the hospital so my doctor cut my dose down to 37.5 mg which is a little better but I am still very tired and in my third and fourth weeks  I have stomach cramps and diarrhea and my feet have a few blister which is hard to walk.  There is alot of times that I lay and sleep most of the day and the food just taste horrible. I don"t know what to do I just keep hoping that it well get better.  I do wish you and your husband all the best and I do pray for everyone.  god bless   Edie

'I too come here almost everyday and read what you guys are writing. So many brave warriors who keep the faith and fight the good fight.  Hearing the success stories always heartens my soul.  It is important for us to stick together along with our families and friends and beat this dreaded disease.  Sutent along with Nexavar and Torisel are godsends that we did not have just a few years ago.  Plus now we have other options coming up the line.  This year has been a wonderful year in the battle against kidney cancer and gives us new hope.  I have been through the shock of first getting rcc and then having it removed only to see it return again in my lungs.  The surgeons opted to remove one of my lung lobes only to find that it was in the other lung too.  Then I went through the horror of IL2 high dose and that is something that is really tough to make it through.  Unfortunately that too failed and then the Nexavar which was unable to stop the spread.  But now I am on Sutent and for the first time I am feeling that just maybe it might be working.  Currently I am on my second round and feeling all of the side effects you guys are feeling.  Nausea, stomach problems, foot and hand sores so bad I have trouble walking, high blood pressure and just down right fatigue.  But, I believe in the end it will work but even if it does not I will have fought the fight and kept on going.  I am still trying to teach but the Sutent is making this hard but being active helps me.  My point is posting today is to say that we all must keep giving each other hope and helping those of us who are faltering to keep up their faith and never give up.  Many of us are winning the battle and we need to hear more of those stories.  God bless you guys.

Chris in Marion AR

p.s. it is also important for our friends to show how much they care.  When I get those words of kindness from my friends my day always becomes brighter.   

 

cindy,my prayers r with you. please get your husband out of bed. my husband has stage iv rcc with mets to the lungs, abdomen ,and lymph. he has tried IL-2 ,sudent and nexavar.tomarow  he starts torisel.he stayed in bed for 15 hours daily, suffered with depression,and developed a blood clot. after 1 week in the hospital and having a screen put in to stop the clot from traveling and now on blood thinners,now he's hospitalized with pneumonia. they need to be mobile even though they feel lousy it's sooo important  to avoid these complications .my husband is 47 years old and we can't give up hope .

god bless you both.

pat

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Hi All,

You all are inspiring and it's great to talk with people going through it -- patients and their immediate family.

Mom was diagnosed with RCC last month, left radical nephrectomy followed.  M.D. to start her on Sutent within the week, and will try to get her into the TroVax TRIST trial.

Mom's greatest concern was the prospect of the "hand & feet syndrome"  -- blistering.  It sounds pretty rough to me too.  But Doc says that blistering is a sign that the Sutent is having an effect against the cancer.  Anyone else heard that?

So -- how to manage the blisters?   What are you all doing to ease pain or maybe reduce the manifistations.  Are any creams good?  I've thought of soft cotton gloves and soft footies at night in bed to preclude any kind of rubbing.  What do you think?

BP sounds like a serious hazard a lot of you have experienced, too, so she's going to be taking her own BP at home very regularly and will alert doc if it should spike.

Thanks for all advice.  Bless you all for sharing your stories. 

 Greg