Nexavar?

Victor05
Victor05 Member Posts: 4
edited March 2014 in Kidney Cancer #1
Has anyone tried the new FDA Approved Nexavar?
«1

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    Hello,

    You may want to do a search of the Cancer Survivors Network. You can do this by entering Nexavar in the search bar at the top of this page. If you find someone you would like to contact you can do this through the internal CSN email system.

    Take care and be well,

    Dana
    CSN Dana
  • cbeyer
    cbeyer Member Posts: 1
    just started only had two days
  • kiddo
    kiddo Member Posts: 1
    Yes!! My mother started it Mid Oct '05 in a study being done at MD Anderson. In the first 8 weeks 3 nodeuls were gone and all but one of the others had shrunk so small they can no longer be measured. She is still on it and just went for her 12 week check.
    There are side effects but she says they it is worth it for the results she is having.
  • urkabsd
    urkabsd Member Posts: 37
    go to the website http://cancerguide.org/kofaq/ for complete info on nexavar
  • LizSzabo
    LizSzabo Member Posts: 3
    kiddo said:

    Yes!! My mother started it Mid Oct '05 in a study being done at MD Anderson. In the first 8 weeks 3 nodeuls were gone and all but one of the others had shrunk so small they can no longer be measured. She is still on it and just went for her 12 week check.
    There are side effects but she says they it is worth it for the results she is having.

    Hi Kiddo,
    I write about cancer for USA TODAY, and I'd like to talk to patients who have tried Nexavar and other new kidney cancer drugs. Do you think your mom might like to give me a call? I write about a lot of research, and I enjoy talking to patients to try to put a human face on this disease. Thanks so much for your time.
    Liz Szabo
    USA TODAY
    1-800-372-3410
  • LizSzabo
    LizSzabo Member Posts: 3
    cbeyer said:

    just started only had two days

    Hi there. My name is Liz Szabo, and I write about cancer for USA TODAY. (You can read my past stories online.) I'd like to write about Nexavar and other new drugs and was wondering if you could give me a call. I'd like to hear how it's working. Thanks for your time and best of luck.
    Liz Szabo
    USA TODAY
    1-800-872-3410
  • adriaranguren
    adriaranguren Member Posts: 10
    kiddo said:

    Yes!! My mother started it Mid Oct '05 in a study being done at MD Anderson. In the first 8 weeks 3 nodeuls were gone and all but one of the others had shrunk so small they can no longer be measured. She is still on it and just went for her 12 week check.
    There are side effects but she says they it is worth it for the results she is having.

    I am glad to hear that your mom is doing so good. My dad will start taking Nexavar next week,are the side effects really bad? How was your mom`s check up last time?
  • dlecb8
    dlecb8 Member Posts: 4

    I am glad to hear that your mom is doing so good. My dad will start taking Nexavar next week,are the side effects really bad? How was your mom`s check up last time?

    Hi! I started taking Nexavar about three months ago, but after starting the drug I developed blisters on my feet, rash, and cracking of my hands. Also, I developed some mouth sores. I have since reduced my intake to 1 pill a day. It is a nasty little pill but it does a good job of stoping the growth of cancer cells.
  • adriaranguren
    adriaranguren Member Posts: 10
    kiddo said:

    Yes!! My mother started it Mid Oct '05 in a study being done at MD Anderson. In the first 8 weeks 3 nodeuls were gone and all but one of the others had shrunk so small they can no longer be measured. She is still on it and just went for her 12 week check.
    There are side effects but she says they it is worth it for the results she is having.

    Hi! I hope your mom is doing okay,can you please tell me if she is still taking nexavar, are the nodules-tumors gone? My dad is still taking it and having a really hard time with the side effects.Hope to hear from you soon,thank you!
  • neily60
    neily60 Member Posts: 2

    Hi! I hope your mom is doing okay,can you please tell me if she is still taking nexavar, are the nodules-tumors gone? My dad is still taking it and having a really hard time with the side effects.Hope to hear from you soon,thank you!

    hi,
    i just started nexavar-what side effects does your dad have. i am on my 3rd day and feeling pressure in my chest. did his tumors react positively to it. how long has he been taking it?
    neil in nyc
  • adriaranguren
    adriaranguren Member Posts: 10
    neily60 said:

    hi,
    i just started nexavar-what side effects does your dad have. i am on my 3rd day and feeling pressure in my chest. did his tumors react positively to it. how long has he been taking it?
    neil in nyc

    Hi! Well my dad has been taking nexavar for almost three months. The first two weeks he did not feel any changes,after this time he got a rash all over his body and had to stop for one month. Then he got the hand/foot syndrome which has affceted him a lot,to the point of not being able to walk because of the blisters in his feet.At the end of october he has to get his MRI to check it the tumors had shrank,which we all hope will happen.Hope you are feeling okay,please let me know if there is any news/updates on the medicine or anything else on this subject.Take care
  • dlecb8
    dlecb8 Member Posts: 4

    Hi! Well my dad has been taking nexavar for almost three months. The first two weeks he did not feel any changes,after this time he got a rash all over his body and had to stop for one month. Then he got the hand/foot syndrome which has affceted him a lot,to the point of not being able to walk because of the blisters in his feet.At the end of october he has to get his MRI to check it the tumors had shrank,which we all hope will happen.Hope you are feeling okay,please let me know if there is any news/updates on the medicine or anything else on this subject.Take care

    I have been taking Nexavar for close to six monts. So far my CT-Scans have showed some shrinkage. I am down to taking one-pill a day. This seems to be what my body can tolerate. Even then my feet still have some problems with blisters. This is a small price to pay for the gift of life. My doctor told me when patients show no signs of side effects, they tend not to respond well to the drug. Also, it is the nature of nexavar that along with killing cancer cells it will also attack good cells on the feet and hands
  • adriaranguren
    adriaranguren Member Posts: 10
    dlecb8 said:

    I have been taking Nexavar for close to six monts. So far my CT-Scans have showed some shrinkage. I am down to taking one-pill a day. This seems to be what my body can tolerate. Even then my feet still have some problems with blisters. This is a small price to pay for the gift of life. My doctor told me when patients show no signs of side effects, they tend not to respond well to the drug. Also, it is the nature of nexavar that along with killing cancer cells it will also attack good cells on the feet and hands

    My dad has also been taking nexavar for about the same time as you. Of course during this time, he had to stop at times because the side effects were very strong. His Scans have also shown some shrinkage but as you, he decided to reduce the dosage 50%.He said that taking the full dosage didn't let him enjoy life.I am not very happy with his decision,but I guess we have to respect it.He will get his new CT Scan next week,hope results are good.Do you have any advice?Let's hope this dosage keeps shrinking everything, for both!
  • borbs
    borbs Member Posts: 1
    neily60 said:

    hi,
    i just started nexavar-what side effects does your dad have. i am on my 3rd day and feeling pressure in my chest. did his tumors react positively to it. how long has he been taking it?
    neil in nyc

    My DH just started Nexavar this week...200mg twice a day. He's really suffering from severe pressure in his lower abdomen. It seems to be excrutiatingly painful. He's not sure if he's going to continue the drug. Neily60 mentions pressure in his chest. How long did this continue?

    Any info is appreciated.
  • neily60
    neily60 Member Posts: 2

    My dad has also been taking nexavar for about the same time as you. Of course during this time, he had to stop at times because the side effects were very strong. His Scans have also shown some shrinkage but as you, he decided to reduce the dosage 50%.He said that taking the full dosage didn't let him enjoy life.I am not very happy with his decision,but I guess we have to respect it.He will get his new CT Scan next week,hope results are good.Do you have any advice?Let's hope this dosage keeps shrinking everything, for both!

    once wrote you about pains when i first took nexavar.by the way i have thyroid cancer with mets to the lungs. it seems i developed pancreatitis but after a 3 week rest i went back on and have benn fine at a 75% dose for the last 13 weeks. the good news is my tg went from 1422 to 1078. the cat showed no decrease in size but will go soon for another.
    neil in nyc
  • lucy120
    lucy120 Member Posts: 5
    neily60 said:

    once wrote you about pains when i first took nexavar.by the way i have thyroid cancer with mets to the lungs. it seems i developed pancreatitis but after a 3 week rest i went back on and have benn fine at a 75% dose for the last 13 weeks. the good news is my tg went from 1422 to 1078. the cat showed no decrease in size but will go soon for another.
    neil in nyc

    Are you still taking Nexavar? I starte 3 weeks ago and had the dose reduced to 50% after a week and a half. I am experiencing a painful and very itchy scalp. Also my hair is thinning, not sure if it will all fall out. Do the rash and other side effects go away over time or just lessen?
  • gdpawel
    gdpawel Member Posts: 523
    urkabsd said:

    go to the website http://cancerguide.org/kofaq/ for complete info on nexavar

    Antitumor and Antimicrovascular Effects of Nexavar
    http://cancerfocus.org/forum/showthread.php?t=3141
  • relda
    relda Member Posts: 4
    Nexavar
    Hello - I was on Nexavar for about 5 months. At first, my RCC lessened, but with the most recent PET and MRI, it spread to my neck and abdomen. I've just started a new drug, Votrient. There were side effects with Nexavar - hand/foot cracks, blisters - numbness in the fingers, diarrhea, hair thinning, etc - ALL WORTH IT -- not easy, but tolerable...Best of luck to you...Nexavar is worth it (I hope Votrient works)!
  • Lizbelil
    Lizbelil Member Posts: 1
    cbeyer said:

    just started only had two days

    inquiry.
    Hi, My name is Liz and I am the community manager of I Had Cancer. One of our users had a question about nexavar and I thought perhaps you can answer it for him since I can not. If you choose to answer, just follow this link: http://ihadcancer.com/discussions/pat/1099.
  • ejneary
    ejneary Member Posts: 64
    Nexavar (Sorafenib)
    After completing surgery to remove an 8cm tumor from my right kidney, I entered a clinical trial for two drugs post nephrectomy, Sorafenib (Sutent) and Nexavar (Sorafenib). It was a double blind study which means that I had no idea which drug I was on. The trial lasted 54 weeks. During that time, I suffered from the following side effects:

    1. Hand-Foot syndrome (Sever soreness and calluses on my feet and my hands were very sensitive to heat).
    2. Reduced sense of taste (Most food tasted terrible).
    3. Severe Diarrhea (had to be controlled with daily doses of Lomotil AND opium Tincture and I was still going between 5 and 12 times a day)
    4. Exhaustion (Just wrung out all day)
    5. Headaches (Dull low grade headache)
    6. No libedo
    7. Hair Loss (everywhere from my neck down, unfortunately, doesn't stop the nose hair)
    8. Weight loss (Associated with low appetite and loss of taste, diarrhea)
    9. Sever dry skin
    10. splinter hemorrhages in my finger nails
    11. Abdominal cramps

    This went on for a long 54 weeks and I nearly dropped off of the program three times but decided to press on due to insistence of my oncologist. Once I completed the 54 week trial, I had a CT scan which showed major disease progression to both of my lungs and to my liver. I was scheduled for High Dose IL-2 which is not possible if I had been on Sutent. The study was un-blinded and it turns out that I was on Nexavar and not Sutent. I then went on for the first round of IL-2. I have been getting scans every 5-8 weeks now with mixed results. I am not currently being treated by the medical community but have moved on to a program of Prayer, meditation and guided imagery based on Gerald White's book "Three Months to Life". I highly recommend it!!!

    John