Toricel Chemotherapy

My mother was diagnosed sept 11 2003 and had her left kidney removed.  Her surgeon told her since it was encapsulated that they got it all and there was nothing to worry about.   Well here we are 4 years later and she has had lung tumors removed, 3 brain tumors and now liver and spine.  Her oncologist said that the chemo will be done but will not give her a long life expectancy.  Is there anyone, please knows of someone on this treatment that is defying the odds?

well, my mom was given 6 months and its been a year!!

and she's doing really well with brain tumor shrinkage while on sutent....so she has beaten the odds already.

Have you tried sutent?

 

Dally

Thank you for your uplifting message, that is great that your mom is doing better.  She tried sutent but her brain tumor bled before it really started working so her oncologist is afraid to try it again.  

this is just a suggestion, but maybe you can get a second opinion with an oncologist that specialises in neurology or is a neurosurgeon.

i'm no doctor but its always so helpful to get another opinion.

 

Dear daughter,

I was diagnosed a year later than your mother. My oncologist did not remove my kidney because the cancer had spread to the lung. He offered me lots hope and told me they were making great strides in the treatment of RCC and got me on a drug called Nexavar that was awaiting FDA approval. It has been approved along with sutent 6 months after nexavar, and torisel approx one year later. There are also drugs in phase 2 clinical trials that look promising. They also are trying Avaston which was approved for another type of cancer, but has shown promise with kidney cancer.

I was on nexavar for 18 months, and my cancer did not grow, but the side effects got to me. So, yesterday I started torisel, and so far I haven't had any negative reaction. We will do a scan in a couple of weeks to see how it is working against the cancer. I get an Infusion once a week.

My point is, in Sept of 2003, the doctor had hope to offer your mother. Is he an oncologist? I am not a medical professional, but I would seek a 2nd opinion, from on oncologist who has experience treating people with kidney cancer. I also don't believe in being overly opptomistic, and none of these drugs are a cure, but I would not give up on your mother just yet. Your doctor may be right about your mother's life expectancy and honesty is good. But just as an aside, I was diagnosed with HIV 20 years ago, and the only drug available was AZT. My doctor could have justifiably said get your affairs in order, but he pulled up on his computer a whole list of drugs they were pursuing to fight AIDS. I began AZT therapy.  As one drug failed,  they came up with a new drug and then another. Today, I take a drug combo or coctail, as they call it, and I'm doing great. Too bad I got kidney cancer, but I'm not giving up yet, and I don't think you or your mother should either.

Richard 

 On 8/25/2007 runningragged wrote:

My mother was diagnosed sept 11 2003 and had her left kidney removed.  Her surgeon told her since it was encapsulated that they got it all and there was nothing to worry about.   Well here we are 4 years later and she has had lung tumors removed, 3 brain tumors and now liver and spine.  Her oncologist said that the chemo will be done but will not give her a long life expectancy.  Is there anyone, please knows of someone on this treatment that is defying the odds?

 

Thank you for your message Richard.  I am sorry for all you have been through also.  I don't want to give up but it seems there are nothing but new growths and new problems for her.  I am hoping this toricel works for her to shrink her tumors.  the only issue is that all these meds can cause bleeding so it's very scary.

I haven't written on the board for a while but read your story and thought I would send a quick reply.  My husband is a 9 year survivor of RCC.  Diagnosed in 1998 - kidney remove.  All clear till 2002 when it metastatized to the lung, peritoneal area and vena cave.  He was given 6 to 9 months then and here we are 5 1/2 years later.  He has been on other drugs but today is on sutent.  Day 14 cycle 7.  Never give up hope.  Mazzy

In 1993 my then 70 year old mother was diagnosed with Renal Cell cancer it was removed along with her right kidney (or what was left of the kidney).

Fast forward to 2004 when she had a mass on her thyroid..RCC again, this was surgically removed and she checked out other wise.

In early 2006 she was found to have RCC on her pancreas and started on Nexavar that worked for about 8 months or so, but the cancer started growing again.  Se was switched to Sutent and that worked for a while, but not ver well as the tumors were growing again although slowly.  

She has now been on Torisel for almost two months and is feeling much better than she did on Nexevar or Sutent.  We will be going to the doctor next week and after that he will be sending her for a scan, so we should find out if the Torisel is really working or how well, but at least she isn't sick from the treatments like the other two.

Mom is now 84 years old, and seems to be in better health than many of her friends, we know that she has cancer, but cancer doesn't have her! 

My husband was diagnosed 2 years ago with RCC. He was on a study and did very well but was was taken off due the the risk of the side effects. While on the study the mass in his kidney shrunk tremendously and some of the tumors in the lungs were gone. The mass in his lymph nodes also shrunk. He did well on this study but we had to travel 4 hours to get the treatment. He was on sutent for 8 months and it shrunk his tumors in the first few months and lately it is not working. Our next step is Toricel. I am  happy to see that the side effects are not as bad as sutent. He was miserable due to the pain in his feet. It is my prayer that toricel will be more effective than sutent. With the advances and research today, we are happy to have many more options today...

Folks,

My family and I are looking for some answers that doctors we have seem to be dancing around with...

My mother 2 years ago was diagnosed with RCC (stage 3) and her left kidney was removed - they said they removed all the cancer.  After that, she did a catscan within 2 months of surgery and was told that she has nodules in bottom of her left lung....but not to worry because that was probably when she had some bad lung infection as a child...since then she has ben dong her CT scans, etc.  And then just a month ago (April 2008), she went for a routing CT scan and they said that the nodules grew in hundreds (40% growth in 6 months) and that there are nodules all over her lungs they can't count. She did a biopsy and was told she has the kidney cancer in her lungs.  It has been 3 weeks now since the biopsy.  Last week, they gave her the port...to start chemotherapy using the drug Toricel.  They will not give me an answer of how much time does she have (maybe because my mom is in the room), but he just said "without Toricel" her survival rate was very low. 

 My mom has been healthy through the past 2 years...when she went for the CT scan last April, she was also fine...She never received any treatment in the last 2 years after the kidney removal.  She just seems to get weaker now that she knows she is sick... I almost wonder if we never found out she was sick or never had the biopsy if she would even feel sick at all.  Toricel treatment start next week on Friday, 5/16.  It's every Friday for about an hour.  Does anyone know anything???  I am debating the quality of life remaining vs. extending 4 months with this treatment (which is waht I read from the fda official website).  Does anyhone know what the life expectancy is of someone with RCC metasteses stage 3 to lungs with and without the toricel treatment?  Please help.  I'm at loss and not sure how to plan this...I have a very uncooperative mom...and I want to be selfish...but I need some direction.  Thanks.