• HansG
  • New Member
  • Offline
  • Registered: Sun, 22 Jan 2006
  • Posts: 13

Topic: Experiences with Sorafenib?

Hi,

My name is Hans.  I am 33 years old and was diagnosed with stage 4 CC on 12/12/05.  My primary tumor is in the right lobe of my liver (quite large ~ 6cm x 8cm) with periodontal (sp?) metastasis in my abdomanal wall.  My wife and I were able to consult oncologists at Stanford, UCSF and Swedish (in Seattle) regarding treatment options and decided to enroll in the Phase II trial for Sorafenib via Swedish here in Seattle.

I started treatment 12/28 (oral pills 2x per day) and after two weeks had to stop due to liver enzyme levels...after 5 days we were cleared to restart on a lower dosage.  Wondering if anyone else has experience with Sorafenib (aka Nexavar as marketed by Bayer for renal cancer).  I've had a lot of aches and pains (pretty intense pain with the restart of treatment) and believe these are attributible to the drug buildup.  Would love to trade notes if anyone else has info to share.

Thanks!  -Hans

PS - Thanks for developing this website....it is such a great resource!!!

  • Registered: Fri, 06 Jan 2006
  • Posts: 258

Re: Experiences with Sorafenib?

Hans,

Can you give us more information about your treatment?  What did UCSF have to say?  Did you see Dr. Venook there?  What did Stanford have to say?  What is "Swedish"? 

Exactly what regimen do they have you on?  Just Soraphenib? 

Stacie

  • HansG
  • New Member
  • Offline
  • Registered: Sun, 22 Jan 2006
  • Posts: 13

Re: Experiences with Sorafenib?

Hi Stacie,

First consultation was at Stanford with Dr. Fisher.  He proposed starting with 3 cycles of Xeloda (which they said is the oral pill form of FU5) and Carboplatin.  His attitude was very much - let's see if we can get this to respond / hold steady and then see what comes available in the next 6 months that might be more promising treatments.

We then were able to arrange a quick 2nd opinion at UCSF with Dr. Ko (we were told that Dr. Ko and Dr. Bergland were the main CC folks at UCSF -- but I've heard others suggest that Dr. Vernook is the liver specialist...so not sure why he wasn't suggested to us).  Dr. Ko proposed Xeloda + Gemcitabine (sp?).  He was a really nice guy and seemed optimistic about finding ways to live with this for a long time as a chronic disease. 

Finally we came to Seattle to Swedish Cancer Institute where we were able to meet with Dr. Gold.  He said that they just opened the Bay 43-9006 clinical trial for enrollment (Swedish's review board had just confirmed their participation the week before) and that since I hadn't started any previous chemo treatments, I was eligible to enroll in the trial. 

The protocol calls for 800 mg of Sorafenib per day (2 pills in the AM, 2 in the PM) but since my liver enzymes were elevated at our test in week 2, they pulled me off and then reduced the dose.  So far I think the side effects are tolerable -- mostly just some dry scalp / itchy for me and body aches.  I think the aches will get better (at least they did during week 2 when I first started on the drug).  My main "pain" cause at this point is the large primary tumor in my liver (which is the subject of my other post regarding embolization).  I'm hoping to talk with Dr. Gold about the options for pallative treatments so I can be more comfortable while we wait to see if the Sorafenib is working (we'll do our next CT at end of Feb).

  • From: Ouray, Colorado
  • Registered: Thu, 23 Feb 2006
  • Posts: 85

Re: Experiences with Sorafenib?

Dear Hans-

I am new to this website.  I am hoping to start the sorafenib trial on March 16th.  I have to travel to Dodge City, Kansas which is about nine hours from where I live which is Ouray, Colorado in the southwest part of the state.

I had my liver resected on November 30th.  They found cancer in one of nine lymph nodes sampled, so the doctors told me it could come back.  At my last set of scans, I had 3 or 4 new little tumors in my liver.   My oncologist didn't put me on chemo after surgery.  I think he knew the cancer could come back quickly and wanted me to be able to get into a clinical trial.

Are you back on the medication and how is it going?  I'll let you know more after I get started.

-Caroline Stoufer

  • HansG
  • New Member
  • Offline
  • Registered: Sun, 22 Jan 2006
  • Posts: 13

Re: Experiences with Sorafenib?

Hi Caroline,

After comlpeting 8 weeks on the Sorafenib trial we unfortunately found that my tumors had grown and subsequently have dropped out of the trial.  We are now 1 week into standard treatment with Gemzar + Xeloda.  So for my body, it seems that Sorafenib as a sole agent was not a great solution and hopefully for your body you will find more encouraging results.

If you start the trial, please feel free to email me to exchange notes about what you are feeling, etc and I can let you know if I had similar feelings, etc.  Note that in my case we had to adjust the dosage down because it was too strong initially for my body to handle (overtaxed some of the liver enzymes, etc).

Good luck!!!!

-Hans

  • From: Ouray, Colorado
  • Registered: Thu, 23 Feb 2006
  • Posts: 85

Re: Experiences with Sorafenib?

Hans-

Thank you for your reply.  Good luck with your other treatment.  I'll be anxious to hear how it goes as I may be doing that if the sorafenib doesn't work.

-Caroline

  • Registered: Fri, 31 Mar 2006
  • Posts: 6

Re: Experiences with Sorafenib?

Hi Hans, Caroline,

I too am new to this site.  Wish I new about it earlier in my Mom's diagnosis.  She too was in the Sorafenib trial, unfortunitely due t a rise in her bilirubin level from 1.8 to 2.8 after a week of treatment, she was dropped from the trial.  She is not taking Xeloda (started today, 3/31/06).  Her first course of treatment was Gemzar (aka Gemcitabine) and it was found that in her case, although she appeared to be feeling better, several of her lesions in fact grew.  Hopefully we have better luck with the Xeloda.  There really are llimited options for the disease due to the toxicity issues surrounding liver disease.

Hans, good luck on your new course of treatment and stay positive.  And Caroline, ,hopefully the positive results from Sorafenib hold true for you.

Dan

  • Registered: Thu, 30 Mar 2006
  • Posts: 1

Re: Experiences with Sorafenib?

My husband has stage IV CC and was diagnosed 4-4-05.  He has been on Gemcidabin and Perifosine which seem to stop the growth for about 5 mo.  Then he started another study with Docetoxel and ARQULE that did not help.  We have seeked out the help of a Shamin, which I think will help, if you can allow yourself to believe it will.  There is a web site, www.canhelp.com, that does research for you and gives you lots of options.  We have also sought out information at MD Anderson in Houston, Texas and Memorial Sloan-Kettering Cancer Center in New York.  We are waiting to hear back.  I do have a friend who had cc that was metastatic from colorectal cancer that received an intrahepatic arterial infusion of chemo at Sloan-Kettering and I believe she is in remission.  That might be a good option for some.  God bless you all.

  • From: Ouray, Colorado
  • Registered: Thu, 23 Feb 2006
  • Posts: 85

Re: Experiences with Sorafenib?

I am off the clinical trial for Sorafenib.  My oncologist called today to tell me the results of the last CT-scan which was this past Tuesday.  My four tumors have doubled in size and I have some new small ones.  The clinical trial only allows for 20% tumor growth, so I was told to quit taking the Sorafenib.

I am frustrated as my last scan was a month before I started the trial med.  Then I was on for 2 weeks, off for two, and then back on at a reduced dosgae for three weeks while taking a steriod which is on the list of medications which interferes with the drug.  They don't take this into account.  They don't let you increase the dosage after you've had the side effects.

So if you ever go on a clinical trial, try to have a CT-scan right before you start the trial.

-Caroline Stoufer

  • Registered: Fri, 31 Mar 2006
  • Posts: 6

Re: Experiences with Sorafenib?

Hi Croline,

just read your post and I certainly understand your frustration.  Have you contacted the Mayo Clinic w/regard to a transplant?.  Check out their website and contact them.  They were very responsive in my case.  I left a phone message and sent an e-mail and they contacted me the next day.  However, in my mothers case she was not deemed eligible but evetyone is different.

ood Luck,

Regards,

dan

11 Reply by jules (edited by jules Sat, 13 May 2006 17:53:37)

  • From: uk
  • Registered: Sun, 08 Jan 2006
  • Posts: 200

Re: Experiences with Sorafenib?

caroline,

i am so sorry that sorafenib has not helped.  i was hoping that it would help you.  are you going to try chemo now?

my dad is now on gemcitabine and carboplatin and seems to be tolerating it well - no nausea, just a bit tired the day after the chemo.  we also have other options - my dad has been offered to take part in a trial at the royal marsden - depending on how successful the chemo is..

You have been so positive and brave throughout this - there are options - we have to keep fighting to exterminate those turds!

jules

  • From: Ouray, Colorado
  • Registered: Thu, 23 Feb 2006
  • Posts: 85

Re: Experiences with Sorafenib?

Dear Dan & Jules-

I asked my oncologist about liver transplant, and he said that I wasn't eligible as my problem seems to be systemic and it wouldn't matter whose liver I had, I'd probably grow new tumors in the new liver.  (Both of my sisters have offered part of their livers, but I think they're going to need them.  One had hepatitis a long time ago, the other is a recovered alcoholic but has been so for so long, her liver is probably in good shape.)

I am looking into chemo and other clinical trials which all involve chemo.  I did notice a trial in England.  I don't know if that's a possibility, but Jules, is your father's oncologist in favor of it?  Wouldn't mind crossing the pond for a trial.  As I've said before, I'd love to visit England.

Good to hear from you both.  Dan, sorry your mother wasn't eligible for the transplant.  My oncologist said there's all kinds of issues with organ rejection, etc.  There is a new trial in Florida for chemo + another drug.  I can't remeber if you are in that part of the country?

Jules, so glad your father's chemo is going well.  I am studying what everyone is doing and how it's working.  I have so much going on this summer that if I do go ahead with chemo, I don't want to be too debilitated.  Guess I don't really have that much choice, but I am scheduled to do the melodrama August 2nd - 4th which is so much fun - I really don't want to miss it.  By the way, my clinical trial oncologist from Denver that I just saw last Monday said she recommended gemcitabine pluse Xeloda or Tarceva.  (I don't know if carboplatin is the same as Xeloda or Tarceva.)  Gemcitabine seems to be the main chemo for cc patients.

Must run, but again, so nice to hear from you both,
Caroline