Update On Dave - Torisel

Hi Everyone,

Well, here's the update on Dave that I promised.  He had his CT scan on Monday.  This was the first CT scan he's had since he was diagnosed, and he's been on Torisel for 6 doses now.  This CT scan was compared with the one he had when he was diagnosed to see if the Torisel is working or not.  Dave was diagnosed on June 27, 2008 with stage IV RCC.  Large 10 x 10.5 cm primary tumor on the left kidney, smaller tumor on the right kidney, mets to both adrenal glands, mets to lungs (at least 15 different nodules in each lung), mets to lymph nodes.  Pretty horrible diagnosis, huh?  The oncologist said the usual treatment is to remove the bad kidney, but Dave was deemed inoperable due to the extent of the metastasis and his weakened condition.  He started Torisel the first week of July.

Well....great news!!  The scan showed that ALL of the tumors have reduced in size at least 20 to 30%.  ALL OF THEM!!  That's the best news we could ever have imagined.  The plan now is to keep doing what we're doing, stay on Torisel, and repeat another CT scan in a couple of months.  If the next CT scan shows more improvement, he might be able to have the kidney removed. 

The doctor did tell us that Torisel usually works well in the beginning, but the challenge is to keep it going.  We are aware that things can change at any moment, but for now we're very happy about this good news.  We know it is only the prayer and faith in God that has done this.  God uses Torisel and other treatments to do His work.  We want to thank everyone who has prayed for Dave, and we are praying for all of you, too!

Thank you, and keep up the prayers.  They're working!

Nancy

That is very good news.  It sounds like Torisel is going to be good drug for your husband.  What kind of side effects has he  had?  Could or would your Dr. think about IL2 for your husband?

Keeping good thoughts,

Jenna

On 8/28/2008 Twiddles wrote:

Hi Everyone,

Well, here's the update on Dave that I promised.  He had his CT scan on Monday.  This was the first CT scan he's had since he was diagnosed, and he's been on Torisel for 6 doses now.  This CT scan was compared with the one he had when he was diagnosed to see if the Torisel is working or not.  Dave was diagnosed on June 27, 2008 with stage IV RCC.  Large 10 x 10.5 cm primary tumor on the left kidney, smaller tumor on the right kidney, mets to both adrenal glands, mets to lungs (at least 15 different nodules in each lung), mets to lymph nodes.  Pretty horrible diagnosis, huh?  The oncologist said the usual treatment is to remove the bad kidney, but Dave was deemed inoperable due to the extent of the metastasis and his weakened condition.  He started Torisel the first week of July.

Well....great news!!  The scan showed that ALL of the tumors have reduced in size at least 20 to 30%.  ALL OF THEM!!  That's the best news we could ever have imagined.  The plan now is to keep doing what we're doing, stay on Torisel, and repeat another CT scan in a couple of months.  If the next CT scan shows more improvement, he might be able to have the kidney removed. 

The doctor did tell us that Torisel usually works well in the beginning, but the challenge is to keep it going.  We are aware that things can change at any moment, but for now we're very happy about this good news.  We know it is only the prayer and faith in God that has done this.  God uses Torisel and other treatments to do His work.  We want to thank everyone who has prayed for Dave, and we are praying for all of you, too!

Thank you, and keep up the prayers.  They're working!

Nancy

Nancy-

First off, Congratulations on the fantastic news about Dave's tumors!  My dad was dx with RCC May 2005 - at the time it was only contained to his Kidney and he had it removed.  We had 3 good yrs with him being cancer free until it returned to his lung.  He had surgery this May 08 and had his right lower lobe removed, again thought we were somewhat in the clear.  Unfortunately after his first 3 month scan we found out it returned to his lung and also spread to his liver.  We have 4 tumors in the lung and 5 on the liver.  We just found this news out on Friday and he is starting the drug Sutent today. 

Question for you, were you given any options for the drugs that they recommended Dave to be on?  Or did they just tell you that Torisol would be the most effective?  Also is Dave's oncologist a specialized oncologist in RCC? 

I want to make sure that we are looking at all options here though I firmly believe that positive thinking and attitude and lots of prayers also is what will get us all through this.

Ami 

Dear Twiddles,

Great news for Dave! Very happy Torisel has been so successful for him! How have the side effects been for him?

I just had my 12th dose of it on Wednesday at the Swedish Cancer Institute in Seattle. Side effects were really bad for me while I was on the 25 mg dose. So many sores in my mouth I ended up not being able to eat and lost about 15 lbs or so in a few weeks. Dr took me off for a few weeks to allow them to subside which they did. They he put me on 15 mg and that worked well with minimal side effects. After a few weeks he increased it to 20 mg. My first set of scans are scheduled for the 17th of Sept. I hope I have as good of results as Dave did.

I was diagnosed in May 06 and after having my left kidney and adrenal gland removed along with part of my colon I spent 2 1/2 months in the hospital. The drs at that hospital had no clue when it came to treatment for KCC. There only solution was to cut it out.

The onlcolgist I have now at Swedish started me on Sutent which I stayed on for 72 weeks before it stopped working. Then we tried Avastin which ended up not working for me at all. Now I have been on Torisel for about 3 months.  

Again, glad to hear he is doing so well on the medicine. God bless all caregivers!

Terry

Terry

Hi Jenna, Ami, John, and Terry,

Thanks for all your kind words and good wishes for Dave.  We are so excited about the CT scan results on Torisel.  We are just hoping and praying it continues to work as well as it has been working so far. 

To answer your questions, yes, Dave has had some pretty nasty side effects.  The worst has been the mouth sores.  They are really bad at times, and he sometimes goes up to 2 weeks able to eat only the healthy shakes I make for him or Malt-O-Meal and other liquid things.  But Dave wouldn't let the doctor reduce his dosage of Torisel.  He is willing to suffer through the side effects if the Torisel is doing its job on the cancer, and so far it seems to be working well.  The other side effects Dave has are rashes and some peeling on the skin of his hands and feet, and his fingernails and toenails seem loose. 

Our oncologist is not an RCC specialist, but he is very reputable and uses cutting-edge technology.  We've been very happy with him.  He chose Torisel because Dave's condition was so weakened, and his cancer is so advanced, he thought it would be the most effective and have the fewest side effects.  He considered Sutent and Nexavar, but I think the side effects are even worse on those.  Dave was so debilitated when he was diagnosed that the doctor didn't think he would live another 3 months.  Now, after 7 doses of Torisel, Dave is so much better it's like night and day.  He's a lot stronger than before the Torisel.  He still has days where he's very tired and weak, but in general he is much stronger now than he was 2 months ago.

Thank you all for your encouraging words.  We are keeping all of you in our thoughts and prayers, too..  Terry, I hope you have a good report on September 17,  We got a good report, and I have a feeling you will, too.  Be sure to let us know how you're doing.

Twiddles

Thats great, All the Best !! May God Bless.

                   Anthony