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father's stage 4 RCC

Posts: 2
Joined: Feb 2014

I will try to post again for help as we still need help to feel positive. I need something that my dad can read to feel like he is not alone in this fight. Some facts on his cancer.

In december 2013 during a CT scan of his colon for an unrelated problem they found the mass on his kidney. After meeting with the surgeon, two days later they took the entire kidney. Everything seemed to be contained. It is a GRADE 4 and STAGE 4 because a month later they found a few small spots in his lungs. He was on the sutent for one cycle but his liver enzymes went through the roof. They had him off of it for 3 weeks as his enzymes normalized and we got a second opinion at sloan and kettering of NYC in the process. They made it seem like there was nothing they could do for him and just to get back on the sutent. He is back on the sutent at 37.5 dose. We have radically changed our diets in the whole family, and have been using the useful information given by a great member. We are going to hopefully get another ct scan in the next few weeks. Does grade 4 make this cancer even less of a survival rate? I understand that RCC Is hard to treat, but all the information I get online has a very low survival rate with the stage 4. Has anyone else been a grade 4? We are so anxious about waiting for the CT scan, we just PRAY we see shrinkage or something. 



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Posts: 31
Joined: Mar 2013


Sorry about your dad's diagnosis.  My husband age 53 has a stage 4 grade 4 clear cell RCC with 30% sarcomatoid.  He just passed one year survivorship on January 23rd.  When I read the statistics last year I thought he would be gone by summer. Instead summer came and went and we actually just kept on living last summer and he walked his daughter down the aisle in late October.  He was put on Sutent and it worked from April - December.  He is now on a clinical trial using Dalantercept and Axitinib at the Cleveland Clinic.  We will know if it is working when he has his scans on Feb. 17th results on the 19th.  He has tumors on both lungs and one in his pelvic bone.  He is going to have stereotactic radio surgery (SRS) tomorrow to alleviate the pain in his hip and hopefully it will also destroy the tumor. There are many lines of therapy to try before giving up and many new ones on the horizon.  Do your best to keep his spirits up. Iit is a hard job but someone has to do it!  I wish your dad and family the best. 



Posts: 2
Joined: Feb 2014

your husbands cancer is eerily similar to my dads. minus the pelvis mets. is his disease stable now a year later? has it progressed at all? i cant wait for my dads scan

Posts: 308
Joined: Apr 2013

First of all, I am sorry to hear that you have to go through this.

As for the treatment options, its important that you get hold of an experienced RCC oncologist. Since your dad is attending Sloan Kettering I would assume thats already in place, but just in case if its not, ask for one, asap.

The treatment options are various when it comes to metastatic RCC. Since your father has been put in kinase inhibitor treatment, I assume the other options were deemed not usable in your fathers case (immuno therapy and/or surgical resection of the lung mets).

I you have not gotten any specific information as to why the two latter arent an option, ask for it! Especially since those two options are the only path to longtime durable response (i.e."cure"). And on top of that, mets to the lungs tends to be a bit better responsive to immunotherapy in general.

Survival statistics should be taken with a grain of salt, especially when it comes to advanced disease. The statistics you see online are outdated in the sense that when it comes to advanced disease, the options in terms of life-prolonging treatments have drastically improved the last 10 years, and the bulk of statistics builds on data older than that, or data where the effect of that improvement isnt showing yet. 

Stage 4 grade 4 is in all honesty a diagnosis that holds a poor prognosis but dont give up all hope yet. Scrutinize your oncologist about the above treatment options.




Posts: 2
Joined: Feb 2014

My dad is a very similar story, while routinely checking a hernia surgery, found tumor on kidney. This was 12/12. Surgery and 3 medications later, we are seeing so much progression we are nervous what to do next. He has done sutent, afinitor, and most recently votrient. The votrient I beleive did the least for him, as the progression is pretty severe after CT scan this week. He is going to take a drug "holiday" to feel stronger and then see what his options are. Hang in there, what we were told was a 9 month time frame has turned into over 2 years - so we have been blessed!

Posts: 85
Joined: Aug 2012

I am in the club.  Been stage 4 for 3 years.  Going strong, or at least semi-strong (I am a bit weak).  I work and lightly exercise.  I am 63.   You do not say what you mean by enzymes.  What changed?  Did you mean blood fats?  If so, it is better to stay on Sutent and fix the blood chemistry with other pills than to go off Sutent.  I presume same if enzymes means something else.  There is life after stage 4.   The Sutent has a mess of unpleasant side effects but they can be controlled and neutralized and he can lead a normal life for a long time and maybe indefinitely.  He will complain about the side effects (it is part of the standard recreation for Sutent users) and will be weak and tire.   If diets are not enough to fix the enzyme problem, zap it with meds if necessary. 

Do not google the survival rates for RCC.  They are based largely on pre-Sutent days and are scary and misleading.

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