Kidney Cancer

[andyc]

I would like to know others experiences with Torisel Chemotherapy My mom just started treatment and the side effects have been fatigue, and some nausea. She now needs a weekly shot to boost her red blood count. I wonder if anyone else has information from their experiences. She had her left kidney removed in 1999 and the other kidney had a slow growing tumor that started growing again last year. They tried Nexivar but it wasn't effective.

[gibsonk]

I was told that immunotherapy not chemo was more effective. Get second opinion from a specialist!

[andyc]

Just to clarify...moms oncologist is highly rated. I'm not questioning her tratment; just would like others experiences with Torisel.

[oldmom]

Hi, I'm on Torisel right now, The side effects of this particular chemo is not bad at all. I am a new mother of a 5 1/2 month old son. It took me 38 years to conceive and carry a child full term. I found out a month after the birth, that RCC had returned and matastasized to my liver. I had my left kidney and adrenal gland removed 11/05. (that was the MOST PAINFUL thing I've ever been thru in my life.)

I've been on Torisel since the first of NOV. 2007. I had multiple tumors covering my liver the largest being 11 cm. My latest CT scan shows that the center of the cancer tissues is dead, and the tumors have begun to shrink. The largest now being 10.3 cm. I am going to do 5 more weeks of Torisel and then another scan.

The first 13 rounds of chemo they gave me staroids, this gave me hot flashes and my face got real red, my new doctor says that was a mistake, they shouldn't have gave me that, and now i take benadryl, tylanol, and a pill for nausia before each treatment. The day of chemo I sleep all day. My feet are dry and cracked. In the beginning of NOV, I had some mouth sores. But now there really isn't hardly any effects. I still have all my hair. Except for always being so tired, I can pretty much do anything I want. If you didn't know I had cancer, you couldn't tell it.

Don't be afraid of this drug. I believe it's part of a miracle we've been praying for. Thank you God and the doctors who didn't give up on looking for better treatments for us.

I'd love to hear how others are doing on this drug after 20 or so weeks.

There is also another option, they talked about doing with me if I hadn't gotten the results I've gotten. Only special hospitals with trained staff can do it, but they put you in the hospital for a week, it's a highly toxic theropy, but it could work. I talked to a lady that had it done 15 years ago, she's 85 and going strong. Her RCC has never returned.

Good luck to you and your mother. I wish you both the very best.

[oldmom]

Hi, The last post dated April 21st. from oldmom is not from her but her friend. She just passed it alomng to you...

But now this is from me (oldmom).
I am 74 years old and have Kidney Cancer also.. My oncologist started me out on Sutent. But the side effects were not satisfactory to me.. So after a two week break, he startyed me on Torisel..
It is ad ministered by IV in my arm. So far the side effects have been minimal. My gums have
blisters on them. But I use a Mouth wash (from CVS) called Biotene, which is a big help.
I have some small nodules (lumps on the back of my head. Can't see them because my hair covers them. Other then being annoying, it is OK.
I go for my third treatment this Thursday (April 24th)
I will let you know how it goes.
Good luck to your mom, and keep the faith..... oldmom

[andyc]

Thank you for forwarding the post. I'm curious what the drug used on the 85 year old was. My mom had 8 treatments then her blood level dropped,and she started running a temperature so the doctor gave her a week off. She really wanted to continue so she is now on her third time after the break. She is losing weight and her blood level dropped again. Tomorrow her appt will be a scan reading from the 10th of April. I'm hoping her kidney is behaving and she can take another break from Torisel. She would say she's pretty good and really doesn't mind the side effects. Her side effects are being cold, tired and not hungry. Other than that she has not had any sores. Again thank you for your news and I hope you continue treatments with ease!

[oldmom]

This past Thursday, I just had my 5th Torisel treatment.
Last time they had to stick me 4 times before they found a vein. So next Thursday the 15th. I am having a port put in and then I am going for my Chemo treatment right after it is installed. All the side effects that I did have are gone. The blisters in the mouth, I used Colgates Orabase for Canker and mouth sores. (CVS) and Benadryl for the blisters and itching on my feet.
Another side effect that has turned up, I have not read about, but wonder if anyone else has experienced it. I have nodules turning up on my scalp.
They feel like small bumps all over. Good thing I still have my hair, which covers the bumps. (I just hope they don't spread to my face, or I might end up on the Science Fiction Channel as one of those bumpy face monsters.
Has anyone had this side effect, or can it be something worse?
I did have a C Scan taken this morning of my abdomen/ pelvis/ chest and head. But will not know the results for a few days yet.
It is a Stage 4 Kidney Cancer that I have.
That's it for now, and I hope all you mothers out there have a wonderful Mother's Day. And know that all that are connected to this Cancer Compass forum as a patient or care giver for a loved one with this
insidious disease, you are all in my prayers. God Bless You..oldmom (74 yrs)

[andyc]

Hi oldmom,
Interesting about the nodules. Mom did not get those...and she was one we thought got every side effect there was just due to her luck! She was taken off the Torisel though as her kidney slightly grew. Her bood level dropped again and she needed a shot given to boost her blood and a transfusion with two units of blood. The low blood level zaps her energy and she is fighting being tired daily. Her routine consists of getting up between 5:30 and 6:00 just because she always has but now takes a nap. She also is in stage 4 as she has a spot on her lung and in her adrenal gland. She remains in good spirits though as the cancer has taken so long to progress so we are positive it will stay at a slow pace...hopefully. We did meet with a kidney doctor to discuss dialysis and wondered if anyone has tried that route. She says its not for her and wants to just do the best she can without anymore treatment. I get to wonder what is in store... but also realize there isn't a firm asnwer to what is in store. Live each day to the best we can... I'm very thankful to be able to talk to her and cherish the time we have. Thank you for checking in I hope you get responses that are helpful regarding the nodules. Happy Mother's Day! andyc