Thank You For All The Information

I just found this message board this morning and I want to say thank you to everyone who has posted info on their RCC and their use of Sutent.  In about 30 minutes, I am headed to the oncoclogist's office with my mother-in-law to find out if the spots in her lung are a new primary cancer or mastastized RCC.  Sutent is what her dr will put her on if it is the mas RCC - which is what we are thinking and what we are prepared for.  I read the literature the dr gave us 2 days ago on Sutent but your posts have been more enlightening.  I know I will visit this message board many times from now on, looking for info, encouragement and hope.  The messages I have read this morning have given all of that and more. 

 

On 4/25/2008 beverlyw wrote:

I just found this message board this morning and I want to say thank you to everyone who has posted info on their RCC and their use of Sutent.  In about 30 minutes, I am headed to the oncoclogist's office with my mother-in-law to find out if the spots in her lung are a new primary cancer or mastastized RCC.  Sutent is what her dr will put her on if it is the mas RCC - which is what we are thinking and what we are prepared for.  I read the literature the dr gave us 2 days ago on Sutent but your posts have been more enlightening.  I know I will visit this message board many times from now on, looking for info, encouragement and hope.  The messages I have read this morning have given all of that and more. 

           Hi! Beverly, We are glad you found us too.This is a great place to learn,share,give and receive from someone who knows where you are.I pray your mom n law gets good results from Sutent. Yesterday I began my fourth round and so far it has kept my nodules stable.My journey began in 97 when I was DX with kidney cancer. The left kidney was totally submerged in the tumor and no longer able to function. It was removed with no complications nor was chemo or radiation needed. All I did was keep my check-ups & scans regularly. Then in 07 it returned, I was referred to MD Anderson in Houston where I underwent 14 treatments of IL2 without success. although it seemed to have stopped any growth. Now Sutent is my first line treatment plan. If or when this fails there will be another one to take it's place.Keep your thoughts positive, always positive and take one day at atime. Fight for your mom n law and your family we will be here if you need us and you can possibly be here for us too.  Take Care    John

John,

Thank you for your reply to my post.  I am just getting home from the Medical Center.  Her dr confirmed what we suspected - mats RCC.  She'll start on Sutent by the end of next week, hopefully.  She's to start with 37.5 mg/ day for 4 weeks, then 2 weeks off (is this what y'all call a round?), then repeat, with a CT in 3 months to see how her lung spots are responding (the largest is 1 cm, at this point)   It's been 2 years since she went to the ER at St Luke's with really odd neurological symptoms that led to the discovery of the tumor on her kidney (it was bigger than the kindey!); the tumor ruptured just prior to surgery.  I think we've been lucky it hasn't matastized before now.  Up to this point we really haven't talked with others going through this; I think we thought she had dodged a bullet, since the surgery went well and follow up CTs didn't show anything.  Now something I read this morning on another post is going to become my mantra; I'll repeat it as often as necessary to her and my husband and my kids - she's going to live with cancer, not die from cancer. 

So now, I've got a few days to play catch up, find out all I can about how I can help her, tricks and hints from people who have been through this on how to cope with side effects, and how to keep her spirits up through the bad times, and Lord only knows what else.  I think, maybe, either it hasn't all sunk in yet or, just knowing there's support available from people like you and the others on this board is giving me the strength I need to feel I can do this with her and for her. 

Dear BeverlyW,

Check with your mother-in-law's oncologist about setting up a MUGA Scan soon. It is used to measure the effectiveness of the heart. One of the side effects of Sutent is that it can cause damage to the heart. The MUGA Scan will set up a baseline for the heart and with a second scan latter on in the treatment the oncologish can measure weather there is any damage to your mother-in-law's heart caused by the Sutent. I was on Sutent 50 mg for 12 cycles before it stopped working in February. I just took my 3rd dose of Avastin. A lot of different, no side effects so far. It is given by IV every 3 weeks. Good luck!

 

Terry

 

On 4/26/2008 Terryjoe wrote:

Dear BeverlyW,

Check with your mother-in-law's oncologist about setting up a MUGA Scan soon. It is used to measure the effectiveness of the heart. One of the side effects of Sutent is that it can cause damage to the heart. The MUGA Scan will set up a baseline for the heart and with a second scan latter on in the treatment the oncologish can measure weather there is any damage to your mother-in-law's heart caused by the Sutent. I was on Sutent 50 mg for 12 cycles before it stopped working in February. I just took my 3rd dose of Avastin. A lot of different, no side effects so far. It is given by IV every 3 weeks. Good luck!

 

Terry

Terry,

Thank you for that info.  I've got to call the dr's office this morning anyway, so I will add that to my list of questions.  I am so grateful to all the people willing to share this kind of information.  While I am still researching and learning, I don't feel like I have to re-invent the wheel!  :-)

I am learning more about Sutent; I know a little about Nexavaar; now I see Avastin, so I guess I need to learn about that.  From perusing some of this message board (Lord knows I haven't read all of it yet!), I gather that both Nexavar and Sutent are first line drugs for RCC.  Is Avastin, as well?  Her dr hasn't mentioned this one. 

He is adamant that he will not put her back on Nexavar because it sent her BP through the roof and landed her in the ER with an uncontrolled nose bleed.  She had only been on it for about 10 days at that time.  He pulled her off of it and continued with radiation only.  This was about 1 1/2 years ago, right after the discovery of the tumor and her surgery.

I have also seen several people say the Sutent stopped working for them, just like you mentioned.  How does it stop working?  Why does it stop working? I assume any tumors are continuing to grow and that is discovered through CTs.  But why?  Does the cancer become immune to the chemo, just like some infections become immune to anitbiotics?  Do "they" (you know, the nebulous "they" that always seems to know something or be the expert on something) know?  Is there any kind of known time frame that it stops working? 

I know, lots of questions......  I'm just letting the questions flow from my mind and out through my fingers as they occur.  My post is getting long, so I'll pause for now.

Beverly

I spoke with my mom about Sutent (since we will find out if it has quit working for my dad) and she said that everyone is different... some people can continue on it for a long time, but sometimes 9 - 12 months is about the longest it will work. I don't know if the body becomes immune to it or what.  My dad has been on it since July 07 and it shrunk some of his tumors, a few disappeared even!  The rest have been stable.  Then, five weeks ago, at his last checkup... they saw a shadow on the right upper lung... don't know what it is yet.  They have him coming back next week to see if it is still there or what.  They had him go ahead with this round, he just finished it Monday.  Really, he has been very lucky with it so far... first round or two were really hard on his mouth and stomach.  They gave him Prilosec for that and he takes Rolaids... he says really does better when he doesn't overeat which causes the stomach acid to churn up.  Fatigue was his 2nd worst complaint.  It started in the 3rd week and was terrible by the 4th week.  Amazingly, they gave him ridilin for that... yes, the stuff they give hyper kids, works as a booster for adults that aren't hyper... he perked right up by the 2nd day.  They said that Sutent may have taken us as far as it can, but if that is the case, there will be another plan of action. He has stage 4 RCC with mets to the bones and now possibly a met to the lungs. May 11th is his anniversary date - 1 year... we are celebrating by relaying for life on the 16th of May at my daughters college.  We are ecstatic that he is doing so well, because his first oncologists told him he would not be here in 12-18 months... I think he is planning on proving them wrong... the oncologists he has now, say he could be here a very long time or he may go in a car wreck tomorrow... no one knows... just LIVE LIFE and take great joy in the things that mean the most! Best of luck to you and your family... you are in our thoughts and prayers!