CancerCompass message board discussion started by Hunnygirl on 9/20/2007 http://www.cancercompass.com/message-board/message/all,16349,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi!  I am 51 year old female who was diagnosed with metastatic RCC in April.  I have a couple of big tumors in my C1 cervical spine and several others in my pelvic bones and upper arms.  I am on my fourth cycle of Sutent and the side affects aren't as bad for me as they were when I first started but I have had a couple of things happen.  I was hosptilazied with thyrotoxicosis because my thyroid soaked up the dye from all the CT scans I have had but they were able to manage that with medication but my blood pressure is sky high and although they keep upping my bp meds dosage I am still way too high.  I am worried I am going to stroke out before my cancer kills me.  I had lost 70 pounds before I was diagnosed and although I had a hypertension problem for many years it was actually very normal before I got on the sutent.  I recently was given a new blood pressure medication but it doesn't seem to be helping.  I don't know anyone who has this disease and feel very lost.  I just was wondering if anyone else has had any knowledge of this side affect and what happened?   I have been reading these blogs  and feel like I have hope now when I didn't feel I had any before.   I would like stay on the sutent but won't know for sure if it is helping until the middle of Oct when I have my next CT scan.   I feel like I am losing faith in my doctor even though I know he is very good.  Thanks for your help to anyone who responds in advance.  Debbie Hunnygirl Thu, 20 Sep 2007 00:00:00 GMT Hi my name is Robbie, I am a married female age 52.  I was diagnosed with RCC in March.  I have a met to my clavicle.  Had my kidney out in April, started Sutent three weeks later. I go for scans again in Oct.  I too, have had blood pressure issues especially when I was on 50mg,  I had to be put on a lower dose, as I was not able to complete my third cycle.  High blood pressure that would not come down even with two meds and extreme fatigue.  I just finished a round of 37.5mg and it was much better.  I am being treated at Duke. I take 320 mg of Diovan and 5-10 mg of norvasc when on the medication.  When I go off I hardly take anything.  My blood pressure did much better on the lower dose of Sutent.  I have cut the blood pressure in half this cycle.  I live in Greenville SC.  This is such a lonely disease as it is rare.  Please keep in touch and you can correspond with me through my e-mail adress --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--.  Robbie Robbie2 Thu, 20 Sep 2007 00:00:00 GMT Thanks for your kind reply.  Yes it is a very lonely disease and I have not found one single person before to talk with.  My husband treats me like he is angry at me for being sick.  Too many things to worry about.  I have been told they aren't going to remove my kidney.  I go to the University of Michigan Cancer Center and they are good but don't tell me much.  My BP worries me so much that I feel I can't go out and do things because I am afriad I will have a stroke.  I am glad I am able to discuss with my oncologist about lowering my dosage of Sutent.  I take 80 mg of Inderal  and 40 mg of lisinipril for my BP.  But it is 200/100 still at times.  I hope we can e-mail again.  Debbie Hunnygirl Fri, 21 Sep 2007 00:00:00 GMT Hi Debbie, I am a 55 year old married woman who also has metastatic RCC.  I was also diagnosed in April.  I have a tumor hanging on my right kidney.  Kidney is still there and functioning.  The mets are on my hip, leg, spine and upper forearm.  I had just battled with breast cancer last year.  I elected to have both breast removed, did the chemo and radiation and was getting a long just fine.  I was an avid bowler so was even back to doing that, learning to bowl all over again because of having lymph nodes removed from the right arm I learned to bowl with my left arm.  Was getting along just fine and then my hip started hurting.  That is when the RCC was discovered.  I have one more day of the sutent for this, my 4th cycle.  I will have a P.E.T. scan done on Monday but I have to wait until my doctor appt on Friday to get the results.  I know the sutent is the cause of my blood pressure getting high.  I never had any high blood pressure problems before and it seems to be normal during my two week breaks I get between cycles.  Mine never got as high as yours.  My highest would be like 155/125.  I was wondering if you get sore feet or tender hands or a sore mouth?  As if walking isn't hard enough with the hip and leg affected by the cancer, my feet grow like calouses that push on the base of the toes.  Very, very dry skin on the feet.  When I was dealing with the breast cancer there were so many people right in this area that I could compare notes to, talk with, cry with but I have not heard or know of anyone that is battling RCC.  It means so much to have someone that knows exactly what you are going thru, what you are feeling both physically and mentally.  It would be nice if we could keep in touch.  You are in my prayer Debbie.              Casey   Casey1852 Sat, 22 Sep 2007 00:00:00 GMT Hi Casey!Bless your heart dear you have been through so much.  I have had a terrible time with my mouth as well but hopefully it will get better as it did with me.  My dentist gave me this mouthwash and toothpaste that is made for epople with dry mouth and trust me it helped a lot.  I think it is called Biotene and when you use it it doesn't burn and helped the sores in  my mouth.  Does it feel like the inside of your mouth is burned?  I literally had flesh hanging off in spots it was miserable.    All the sore mouth and sore feet and hands are just some of the side affects of this drug.  Also the heart liver and BP problems.   My BP was bad since I was 30 but I had lost 70 pounds and before I got on the stutent it was completely normal and I had my medication dosage cut in half.  I got a nice letter from a lady that siad they cut her dosage of sutent and it helped her BP so I am hoping I can talk to my doctor about doing that for me because they are going to get  a grip on my blood presuure before I take any more sutent.  It is too stressful worrying about a stroke killing me now!I understand completley about what you are going through with this!  it is so rare and there is no one to talk to.  And you dealt with breast cancer too!  I had a sore shoulder and had therapy for a few months and suddenly this shadow shows up on my upper arm when I had an x-ray and then a few weeks later I am told have kidney cancer and not only that, I am in stage 4!  I was completley side swiped!  My family doctor never checked my urine or had my kidneys looked at and I had high blood pressure ofr 20 years.  I trusted them.  I feel like I never had a chance to fight this!  I could have been cured or at least would have had a chance  they had caught it early. But it does no good to dwell on that.  I was a school custodian and loved my job.  I had to quit once they found the tumors in my spine and no one ever comes to see me anymore.  I try so hard to live my life as normal as possible.  I am a Christian and have faith the Lord is taking care of me but it is still very hard.  Well, I am here for you if you ever want need someone to talk to.  I guess we can reach out to one another!    Do you feel as if the sutent is helping you?  I have been told some of my tumors are shrinking but I have developed new bone pain I didn't have before which makes me think that it is growing.  I may be wrong but that is how I feel.  I am amazed how many people have cancer.  I just can't get over it.  I sure never thought it would come into my life.  You are very brave!  I can't even lift a jug of milk and am certainly unable to do any sports.  My sister has a home in the Florida Keys right on the ocean and when I go down there I feel at peace.  Without her I don't know what I would do she is my own personal make a wish foundation!  Take care dear!  Debbie Waite Hunnygirl Sun, 23 Sep 2007 00:00:00 GMT