Sutent

JoBubba
JoBubba Member Posts: 8
edited March 2014 in Kidney Cancer #1
Has anyone been on Sutent and how did it work for you? If so, what are your side effects? Where are your mets...bone,lung, etc.? My husband is hoping to start it soon and Sutent was recommended to him over Nexavar. Thank you for your help.

Comments

  • urkabsd
    urkabsd Member Posts: 37
    #2
    hi, i am sorry that you have reason to be looking for this information! we are all in this fight together. there is a site that can really tell you so much about treatment, http://cancerguide.org/kofaq, it is totally dedicated to kidney cancer and treatments, good luck and god speed!
  • Waving
    Waving Member Posts: 43
    #3
    Hi JoBubba,
    You could try the Kidney Cancer Association website at www.curekidneycancer.org , and the webpage www.cancergen.com/kidney for links to other websites for info and support. You could also try this website GIST Support International at www.gistsupport.org where it says on the home page "Pfizer has posted a press release announcing that the FDA has approved Sutent for GIST and for renal cell cancer". You'll probably find some info about sudent and its use on that website (but note that I'm not sure if the website is independent of Pfiser so I don't know if all the info about it on the site is free of commercial influence). You could join their mailing list and ask about sudent there - I think the list is quite active from memory.
  • ger39
    ger39 Member Posts: 6
    #4
    Hi there, my wife has just started Sutent. She has been on treatment for about two weeks, and there are some side affects that affected her. Our Oncologist told us that the drug affects eveyone differently. Some have little side affects while others are really affected. My wife just started to have some side affects. They seeemed to come on suddenly, one day feeling good, the next not so good. She had head aches, fatigue, mucous membrane sensitivity, fever, chills, constipation, and the runs. This occurred for her at about day 10. She felt better yesterday (day 14) and we are hoping the side affects subside a bit. Since we are from Canada we are still on the clinical trial. They start the dosage at the standard treatment and do not decrease the dosage until there are major side affects. Our Oncologist is quite hopeful the drug will shrink her tumors, as he has saw good results. We are fortuante as my wife tumors have progressed very slowly, growing only 1 mm per check up (3 month). She has 2 mets in her lungs and 1 in her back that has not grown for about a year. She has had two surgeries to remove the kidney and lymph nodes and another to remove more lymph nodes in the kidney cavity. She is fairly young so I sure hope this works. Best wishes for you and your husband.
  • ger39
    ger39 Member Posts: 6
    #5
    ger39 said:

    Hi there, my wife has just started Sutent. She has been on treatment for about two weeks, and there are some side affects that affected her. Our Oncologist told us that the drug affects eveyone differently. Some have little side affects while others are really affected. My wife just started to have some side affects. They seeemed to come on suddenly, one day feeling good, the next not so good. She had head aches, fatigue, mucous membrane sensitivity, fever, chills, constipation, and the runs. This occurred for her at about day 10. She felt better yesterday (day 14) and we are hoping the side affects subside a bit. Since we are from Canada we are still on the clinical trial. They start the dosage at the standard treatment and do not decrease the dosage until there are major side affects. Our Oncologist is quite hopeful the drug will shrink her tumors, as he has saw good results. We are fortuante as my wife tumors have progressed very slowly, growing only 1 mm per check up (3 month). She has 2 mets in her lungs and 1 in her back that has not grown for about a year. She has had two surgeries to remove the kidney and lymph nodes and another to remove more lymph nodes in the kidney cavity. She is fairly young so I sure hope this works. Best wishes for you and your husband.

    Just so you know, my wife has just had her first check after the first round of Sutent and we were really suprised to find the the tumors have shrunk. This was determined just off the CAT scan photo's. This is the first positive result for us in 4 years.
  • LSzabo
    LSzabo Member Posts: 2
    #6
    Dear JoBubba,
    My name is Liz Szabo, and I cover cancer for USA TODAY. I'd like to write about Sutent and other new therapies for kidney cancer. Would you or your husband mind talking to me about this drug? It would be great to hear from some real patients. Please give me a ring or email if you might feel comfortable discussing this in our newspaper. Thanks for your time. I wish you the very best in your cancer fight.
    Liz Szabo
    USA TODAY
    703-854-5455 PHONE
    1-800-872-3410 TOLL FREE
    lszabo@usatoday.com
  • LizSzabo
    LizSzabo Member Posts: 3
    #7
    ger39 said:

    Just so you know, my wife has just had her first check after the first round of Sutent and we were really suprised to find the the tumors have shrunk. This was determined just off the CAT scan photo's. This is the first positive result for us in 4 years.

    Hi Ger39.
    My name is Liz Szabo, and I write about cancer for USA TODAY. I'd like to write about Sutent and other new cancer drugs, and I was wondering if you or your wife might feel comfortable giving me a call about Sutent? It's always nice to talk to real people when I write about research. Thanks for your time and best of luck to both of you in your cancer fight.
    Liz Szabo
    Medical Writer
    USA TODAY
    1-800-872-3410
  • karenlw
    karenlw Member Posts: 2
    #8
    My aunt is on Sutent for experimental use for thymoma. She is having short term memory loss, trouble reading etc. She had brain scans to rule out brain mets and there were none. Her onc does not know why she is having these neuro symptoms and they are not listed as Suetent side effects. She is also on many other meds for pain and these issues could be due to other meds. She has a fantastic interdisciplinary medical team who can't figure it out. Thses mamory etc issues began a couple of weeks into Sutent along with expected fatigue nausea which she is used to from other chemos. Has anyone else heard/experienced memory/visual issues with Sutent? I wouldn't want to imply it is associated as it may not be but often as we all know patients know these things first before research has them anazlyzed and documented. It would be very reassuring to us of cousre if we knew it was the Sutent in terms of cause and if it is helping shrink the mets which we will learn next week she will continue but it is very concerning of course.

    Thanks in advance for any leads
  • praz2him
    praz2him Member Posts: 12
    #9
    LizSzabo said:

    Hi Ger39.
    My name is Liz Szabo, and I write about cancer for USA TODAY. I'd like to write about Sutent and other new cancer drugs, and I was wondering if you or your wife might feel comfortable giving me a call about Sutent? It's always nice to talk to real people when I write about research. Thanks for your time and best of luck to both of you in your cancer fight.
    Liz Szabo
    Medical Writer
    USA TODAY
    1-800-872-3410

    I AM JUST FINISHING MY FIRST ROUND (30 PILLS) OF SUTENT. iWOULD BE VERY HAPPY TO TALK WITH YOU IF YOU LIKE.I HAVE SOME SMALL SIDE EFFECTS BUT NOTHING SERIOUS.I LEFT YOU A VOICE MAIL MESSAGE.
  • praz2him
    praz2him Member Posts: 12
    #10
    I am on my first go round with Sutent.I take 30 pills each time.I won't know how it has done till I get my next ct-scan.I have lung cancer and one of my tumors has started to grow again so my Oncologist suggested Sutent.I have had hardly any side effects.My nose is a little raw inside.I have skin lightening,it looks like small white dots.But the worst of all is nothing tastes right.It all tastes like plastic.But they say 24 hours after you stop taking the pills all the effects go away.No nausea,no fatigue and no headache's.I take 50mg. a day. The cost of the pills is outrageous. $7000.00 for 30 pills. Glad I have great insurance.Tell your husband to get out and enjoy his life.I've had kidney,lung and brain cancer and I feel great.I am going on a mission trip to Mississippi in june with my church.I may have cancer but cancer doesn't have me.May GOD richly Bless you and your husband.
  • gingee_2
    gingee_2 Member Posts: 2
    #11
    Hi Jo Bubba,
    My dad is on month 3 w/ Sutent for RCC.
    Thus far he has seen shrinkage in met's to his lungs, bones,lymph system & spine. His kidney was removed & the Vena Cava scraped clean almost one year ago now.
    We wish you the best.
  • mdmdmd
    mdmdmd Member Posts: 1
    #12
    karenlw said:

    My aunt is on Sutent for experimental use for thymoma. She is having short term memory loss, trouble reading etc. She had brain scans to rule out brain mets and there were none. Her onc does not know why she is having these neuro symptoms and they are not listed as Suetent side effects. She is also on many other meds for pain and these issues could be due to other meds. She has a fantastic interdisciplinary medical team who can't figure it out. Thses mamory etc issues began a couple of weeks into Sutent along with expected fatigue nausea which she is used to from other chemos. Has anyone else heard/experienced memory/visual issues with Sutent? I wouldn't want to imply it is associated as it may not be but often as we all know patients know these things first before research has them anazlyzed and documented. It would be very reassuring to us of cousre if we knew it was the Sutent in terms of cause and if it is helping shrink the mets which we will learn next week she will continue but it is very concerning of course.

    Thanks in advance for any leads

    I know a lot of time has elapsed since your email- but my husband has had Thymoma for 7years and has never tried Suetent. Currently he is on Altima which is really beating him up. His cancer has met to the lungs and liver. Is the Sutent worth trying?
  • debbiemb20
    debbiemb20 Member Posts: 4
    #13
    gingee_2 said:

    Hi Jo Bubba,
    My dad is on month 3 w/ Sutent for RCC.
    Thus far he has seen shrinkage in met's to his lungs, bones,lymph system & spine. His kidney was removed & the Vena Cava scraped clean almost one year ago now.
    We wish you the best.

    Time has passed...
    I know that time has passed since you posted this, but my mom has just been diagnosed with rcc stage 4. it met into her lungs, liver and bones. Did the sutent work for your dad?
  • williewade
    williewade Member Posts: 1
    #14
    Other resource for info on Sutent
    I am also a member of ACOR Kidney cancer and there is lots of information there about people on Sutent, how they take it, side effects, how long they have been on it. A really good resource. I would recommend you join that list.
  • MuayThaiSister
    MuayThaiSister Member Posts: 5
    #15
    Sutent - Flank Pain
    Hi all! I'm looking for anyone with Sutent experience. My brother just started on the sutent dose escalation trial. The concerning symptom so far has been flank pain near his remaining kidney. I've been looking everywhere to understand how concerned we should be. He's willing to deal with managing the pain as long as the kidney is not being damaged. Is there anyone that has had a similar experience?
    I've been enjoying all of the encouraging, and many times hilarious, status's from the group since joining. Thanks to all that make this forum an incredible resource for us newbies ;)
    Kim
  • MuayThaiSister
    MuayThaiSister Member Posts: 5
    #16
    Sutent - Flank Pain
    Hi all! I'm looking for anyone with Sutent experience. My brother just started on the sutent dose escalation trial. The concerning symptom so far has been flank pain near his remaining kidney. I've been looking everywhere to understand how concerned we should be. He's willing to deal with managing the pain as long as the kidney is not being damaged. Is there anyone that has had a similar experience?
    I've been enjoying all of the encouraging, and many times hilarious, status's from the group since joining. Thanks to all that make this forum an incredible resource for us newbies ;)
    Kim

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