Hi all; I have stage 4 RCC, it was in my left kidney and was huge, with mets to both lungs,3 in my left and 1 in my right.This is after beating for over 3 years, prostate cancer, whice seems to be gone.I am now on Nexavar (Sorafenib)for the last 6 weeks, with a 10 day stoppage because of side effects (skin problems)(iching of the scalp)(reddness to my face)(swelling to the inside of my ears and ear aches)(and pain and soreness all over),some of whice I have again, but not as bad a before, but some new ones,like sore feet and hands have popped up this time, no one seems to know whats next, I will find out next week if all of this has done some good. MTAJ57 at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----
Mel,
There is a support group specfic to kidney cancer--see http://cancerguide.org/kofaq/ to join. Members of that list can tell you of other options.
Hi Mel,
My Mother is pretty much in the same boat as you are. Two years
ago she had her kidney removed because of cancer and the
doctors said it was all gone. But a year ago the RCC had spread to
her skull, she underwent some radiation and cyber knife but
because of the area that the cancer was in (her head) they couldn't
administer to much. She has been on Sorafenib for about 3
months now and she also will be having scans and MRI's next
week to see the results. Please write back and let my know how
things are going for you.
Best of luck to you and may God bless.
P.s. - please e-mail me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----
Hi
My wife has just commenced Sorafenib 13th Oct 06. Similar to you, your message was posted Jan 06, how did it go for you?
From Mel MTAJ57,Some one asked how am Iam doing after almost 10 months on Nexavar, I am being called stable,with no new mets, the Doc's thinks Sutent may be working better for Stage 4's like me, so after I see them again the 2nd of Dec,I think I will heed this advise and switch over, right now I feel lucky to be alive after a year since surgery, and (knock on wood) still feel pretty darn good most of the time,mentally "well" thats another thing,staying ahead of the stress with having stage 4 RCC is certainly a large challange, and not knowing how long you have or if you have a future is very hard to face,at least for me,people always ask me, how are you feeling?,and my standard answer is (well I'am still here)
II am new to this...but after reading the side effects you listed...it just felt good to see some one has survived the same awful smptoms that I am now experiencing.
I began Nexavar.....about 6 days ago...but landed in the hospital after only 5 doses ....due to really high blood pressure.
I came home yesterday....5 days there and my bp is doing better after some adjustment to my meds.
But my face if bright red....my scalp itches like crazy,the inside of my ears are swollen...and the rash is moving to my upper chest area.
If you remember.....did these symptoms last for your whole treatment...of did the subside a bit?
I am also diabetic and wonder what effect this
will have on things....also...do you know if Nexavar will affect the creatin level of the remaining kidney?
Thanks so much.
sewingnana
Problems after only 6 days,sorry to hear about that, maybe this will help.Almost 10 months on,but with a half dose for most of the time,it seems to be still effective,I have another CAT in a few days. The docs were grim when I was first dianosed,the surgeons were only removing my L kidney to give me more time and clean out the cancer moving towards my heart,in other words, I had only a few months to live,that was a year ago this month,but here I am still making solo road trips far from home,with any luck I will be going back to Alaska fishing this spring for my usual month or more.I ain't the tough old bird I once was,things take me 3 days to do that I used to do in 1,but I am maintaining my wieght,eating well and generally doing OK,and take a nap every day helps me feel better,plus once or twice a week,I take a long hot bath with salts,I just survived a bad bout of the flu for 2 weeks,which would have killed me if I hadn't been doing this well,so Sorafenib has certainly made my life better.The worst side effects went away with the 1/2 dose,my feet still get a bit tender and my hair went from totally strait to totally curly,but its still there and everyone who knows that I am sick, think I look great,not sickly at all.I may go on Sutent next month because it is a better shot at a cure as I understand it,at least my oncol docs think so.So we will see.All in all stay on the drug if at all possible,maybe try a smaller dose like me,as I had the same problems as your having at first,just remember we are fighting one of the worst cancers to cure,so you have to use everthing possible to save yourself,good luck!!!
Thanks for respondingn to my emaill......it feels good to talk with someone on the same meds and to maybe benefit from their experiences.
I am on the half dose, 2 pills in the AM..and my face is red as a beat.... it feels like poison ivy( so sore and itchy)..and I have been putting on the hydrocotisone creme for it. I see my oncologist on Tues...and so will see what he says about this.
Did your rash ever get better on it's own at all?
I have to carefully monitor my blood pressure also.....as that may still be precarious.
Are there any others out there....who are taking Nexavar also?
Thanks so much.
sewingnana
Hi again; well the face redness and scalp itching I had pretty much went away with small doses of benadril,I now have none, so I think it may just stop with the lower dose,or you just get used to it,one or the other.I have a cat the 29th of Nov and see my Docs again on the 6th of Dec,I aways get depressed before these,because I am always afraid I'll be worse then last time...Plus my friends and family start thinking I'am cured because I do not look sick.But I never did in the first place.Even after surgery within the first day I was out of bed and hauling my I.V cart around outside the VA hospital,for a smoke,my surgeon started looking for me out there, after he spotted me through my room window the first time,before he went to my room to examine me, he thought that was great(of course not the smokeing part),he said most of his patients never got out of bed for 4-5 days,he sad Mel if anyone can beat this its you,I hope he's right...Mel
Thanks for your reply........
When did you have your kidney surgery? Mine was this past April...and 6 mos later they found a small tumor back in the renal bed. Confirmed cancer and now I am on the Nexavar.
My doc...told me to stop the treatment for 1 week to clear my face and scalp,....it sure itches and driving me buggy!!!
I was a smoker too...but quit cold turkey about 6 yrs ago after finding out I had breast cancer.
which is considered to be gone now. Hope you have quit now? I don't miss it at all and really wished I had quit years ago. I feel it was a waste of health and money, for all those years.
I hope you get really great reports on your next scan. Good luck with that!!
By the way.....I am not sure I know how to use those archieves......are there instructions on how to use them?
Thanks again.
sewing nana