Renal Cell Carcinoma (Kidney Cancer) Support Group

Renal cell carcinoma, also known by a gurnistical tumor, is the most common form of kidney cancer arising from the renal tubule. It is the most common type of kidney cancer in adults. Initial therapy is with surgery. It is notoriously resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy.

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A little bummed!!

Hey Guys, I am struggling a bit this morning because even though my ct scans were considered stable my oncologist at Seattle Cancer Alliance told me today that he was hoping for all or most of the nodules to be gone if IL2 had worked. He also recommemded I start Sutent which I really do not want to do but he did say that since there has been little growth I could wait and scan in 3 or 6 months! I am not sure what to do as I am scared of the side effects of sutent. Any advice?

Replies

Angelpuss
Angelpuss

Paula, I am so sorry that you have to deal with this decision. I know, from reading here, that Sutent can have severe side effects and you have already been through IL2. At least, the Oncologist has given you a choice. I'm sure you will get some help from people whose partners are on Sutent.
I just want to let you know I'm thinking of you and I know that your decision will be whatever you feel is best for you.
Love and hugs, my friend.
Angel
deleted_user
deleted_user

Paula, sorry that I have no advice for you about sutent. Someone should post information about their experiance. I know I would not like to start sutent either but would only because the growths are small and not give them any chance at all to grow, no matter how slow they grow. It's a tough decision so I hope someone who has dealt with it can help you. Will keep you in my prayers.

Jean
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deleted_user

Paula, I am sorry your oncologist is suggesting going on Sutent. I have a little personal experience to offer, but I have also read a lot of threads on this site where some people have less severe after effects than others, and one person had been on Sutent for several years without problems. My experience was not good, but my circumstances were different, too. My oncologis put me on Sutent, Zometa and radiation treatment within 2 weeks of being discharged from the hospital. I had a nephrectomy and L2 vertebrae replacement. I reacted very poorly taking Sutent, first at the max. 50 mg and even at the reduced 37.5 mg dosage. I had nausea, vomitting, loss of appetite and taste, high blood pressure, increased pain, and perpetual stomach ache. I had no liver problems, however. So, my opinion of Sutent is not favorable, and if I had to make that decision today, I would opt to wait for another scan, which is what I did when I got a new oncologist - one that was willing to work with me and participate in the decision-making for my care. I'll keep you in my prayers!
Mike
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deleted_user

Thanks Mike for sharing! I have decided to wait to see what happened after my next scan in August and I am leaning towards using Volient instead of sutent becasue of a friend who has had great success with it. I will keep you informed. How are you doing now?
deleted_user
deleted_user

MD Anderson doctor suggested Votrient as treatment for me. I had R/kidney removed in 1997. and then got the RCC in L/kidney last year. It is a different type of cancer this time. So I am on Votrient since last October, had CT's after 3 mos. some shrinkage, and blood tests every month, no damage to liver, etc. Not anemic either. Side effects are minimal. I did get a blockage first of May, Urologist put in a stent, which will be there for 3 mos. Then a decision to put in another, or not. The local Oncologist suggested Sutent because it was "cheaper", but being retired either treatment was out of my range without help, so I insisted to go with Votrient, and have not been sorry. GSK makes Votrient and has a program to help people get their meds. They have been wonderful. I was also afraid of Sutent, I had read so much about the side effects, nothing bad like that with Votrient. All body hair, eyebrows, lashes, etc. all went white, my silver gray hair at roots is white, a good deal of diarrhea, but can be controled with Imodium, which I don't use too often. Since the stent, some pain, but not that bad, all in all I feel blest that I have had the opportunity to use Votrient and tell everyone to at least speak to their Oncologists about it. It is one of the later offerings to treat RCC. Compared to a lot of people on different types of treatment, I think Votrient is top of the list for not having really bad sideeffects. I take 800 mg. (4 200 mg. pills a day on empty stomach) and things are going well so far. I just hope it continues to work, so I don't have to try another type of treatment.
Rosa
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deleted_user

Thank you Rosa for sharing your experience! The DR and I have decided to wait till Augusts scan before starting treatment since I am stable but I have mentioned the desire to use Voltrient I will keep you informed!!
deleted_user
deleted_user

Paula, I thought Rosa's sharing about Votrient was interesting and good, particularly for me. You asked how I am doing and I had only been off of the Sutent for 2 months+ when the last scan showed new growth in my hip area and in one rib. So, My oncologist ave me 3 options and I chose Votrient. So far, I've had similar nausea issues that I had with the Sutent. I am stronger now compared to then, and able to handle it a little better, but nausea is still the main side effect. I've lost a little weight, and my blood pressure is up, also. I am taking the 800 mg once a day dosage. Thanks for asking!
Mike
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deleted_user

I too have been on votrient 800 mg for the past 6 months & it is working well for me so far... it is the only treatment i have had so far...from what i've read the side effects from votrient seem to not be as bad....good luck & stay strong : )
deleted_user
deleted_user

Dear Paula,

i can understand your delema with the thought of having to go on Sutent fearing the side effects.. My husband is in a low dose of Sutent and has been doingg great without any side effects.. We were told by the Nurse practioner who sees my husband every other month at his Oncology appt's that his 3cm bone met in his lower shoulder (Humerus bone) area there has not been any growth.. My husband is doing so well and has several millimeter size nodules in his lungs.. He hasn't had a catscan for a while and the oncologist feels he is stable and the Sutent is taken care of this.. It is felt the catscans will do more harm but he will be checked soon.. Maybe is you do need to take the Sutent, the lower dose may be a better alternative for you.. Where you only have nodules to right now this may help doing a lower dose.. I never beleived in all the higher doses of all the target therapies, i think the side effects of these high doses cause more harm to a kidney caner patients.. I think where you have been through the hardest treatment of all IL-2 your body needs some rest from this.. You are the only person who knows your body, so if you feel waiting for another catscan in 3 months is the best, then do it.. I know this is a very hard decision to make but you only can make the decision.. All i can tell you in Aug this year my husband will make his 5 year mark, his is a miracle to us, the milermeters have not change much in all this time but with this cancer i know one day they probably will.. I know you are very fearful, you have been through the hardest treatment out there and this alone takes alot of guts and you did it.. So i do understand how you feel about the Sutent, side effects are so hard to go through and just the fact knowing what all of them do to the body, sometimes permanently. . Just ask your doctor about the 25 mg, either he will agree or not, I will tell you my husband is living a full life and still works part time, and has not one side effect other than tiredness..

I hope this will somehow help you, i also think in a 3 months time if your nodules do grow it will be very little maybe i milimeter, possibly 2.. A millimeter is the size of a strand of hair, 10 of them will be a cm and i don't think you will have to worry about that until you get your next catscan.. You are your best advocate for yourself, what you feel is best for you now is the right decision to make..
deleted_user
deleted_user

Dear Paula,

i can understand your delema with the thought of having to go on Sutent fearing the side effects.. My husband is in a low dose of Sutent and has been doingg great without any side effects.. We were told by the Nurse practioner who sees my husband every other month at his Oncology appt's that his 3cm bone met in his lower shoulder (Humerus bone) area there has not been any growth.. My husband is doing so well and has several millimeter size nodules in his lungs.. He hasn't had a catscan for a while and the oncologist feels he is stable and the Sutent is taken care of this.. It is felt the catscans will do more harm but he will be checked soon.. Maybe is you do need to take the Sutent, the lower dose may be a better alternative for you.. Where you only have nodules to right now this may help doing a lower dose.. I never beleived in all the higher doses of all the target therapies, i think the side effects of these high doses cause more harm to a kidney caner patients.. I think where you have been through the hardest treatment of all IL-2 your body needs some rest from this.. You are the only person who knows your body, so if you feel waiting for another catscan in 3 months is the best, then do it.. I know this is a very hard decision to make but you only can make the decision.. All i can tell you in Aug this year my husband will make his 5 year mark, his is a miracle to us, the milermeters have not change much in all this time but with this cancer i know one day they probably will.. I know you are very fearful, you have been through the hardest treatment out there and this alone takes alot of guts and you did it.. So i do understand how you feel about the Sutent, side effects are so hard to go through and just the fact knowing what all of them do to the body, sometimes permanently. . Just ask your doctor about the 25 mg, either he will agree or not, I will tell you my husband is living a full life and still works part time, and has not one side effect other than tiredness..

I hope this will somehow help you, i also think in a 3 months time if your nodules do grow it will be very little maybe i milimeter, possibly 2.. A millimeter is the size of a strand of hair, 10 of them will be a cm and i don't think you will have to worry about that until you get your next catscan.. You are your best advocate for yourself, what you feel is best for you now is the right decision to make..
deleted_user
deleted_user

Thanks to everyone for all your support and advice! I have decided to start votrient dependent on Augusts scan results becasue I really want to enjoy the summer with my 14 year old and build up some strength before the next battle with this evil disease!
deleted_user
deleted_user

I have been on votrient since dec 2011...was first diagnosed with rcc in nov. My lung filled with fluid & I thought I had pneumonia boy was I sadly mistaken. If you have any questions about side effects & whatnot I am always available..I'm surely no expert but I can maybe help a bit...good luck & god bless : ) Donna
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deleted_user

I have been on Votrient for RCC since Oct.2011, after 3 mos. CT showed some shrinkage, the tumor was 8X6X3.5...doctor from MD Anderson recommended Votrient, and I can tell you, the side effects have been minimal. Some diarrhea, feeling tired, hair lost color, leg cramps sometimes, nothing that I can't handle. I recently had to have a stent put in the one remaining kidney, which is uncomfortable, and hope it can be removed in 3 mos., given the alternative (blockage at the kidney) I can handle that too. I had new CT's done on the 5th and go tomorrow to the Oncologist to find out how well the Votrient is doing. I just pray I can stay with it and not have to change to a different treatment.Votrient has been a blessing for me, and as far as they can tell, no metastizing going on. I will report the findings tomorrow when I get back, and let you know how the Votrient is doing for me after almost 9 mos. (my liver is fine, have a blood check once a month.)
deleted_user
deleted_user

Thank you all for the helpful info! I am certain that I want to start with votrient and I appreciate all and any advice!
deleted_user
deleted_user

My Oncologist said all was going well with the Votrient and all tests look good.