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carmgllgs's picture
carmgllgs
Posts: 4
Joined: Jan 2013

Hi everyone, 

 

I, like many others, have also looked at these discussion boards before finally becoming a part of this exclusive club as some of you say.. lol. My dad is having a laparoscopic radical nephrectomy.  They diagnosed him in September 2011, with RCC Stage 4 with nodules/mets? to his lungs.  He started on Votrient late September and December scans showed a small reduction to his tumor and nodules/mets in lungs were alot smaller (according to oncologist).  He is now scheduled for his surgery tomorrow, and we are praying that this will help him beat this monster.  I am a bit worried that with one kidney left, what if a tumor eventually grows there.. I'm trying to stay positive thought and hope and pray for the best.   

You have all kindly shared your stories, and I wanted to share mine.  THank you. 

KJones1969
Posts: 158
Joined: Mar 2012

I will share a little of my husband's background at the bottom of this post. Stay as positive as you can and I am a very positive person but this has been a rough year for me as well. My husband has one kidney and does well with that. Keep your faith and I find solitude in prayer. My husband has been in and out of the hospital lately so I decided not to work for awhile to see how he is. There are lots of people on here who will give you encouraging words. Read about Alice, Tex or Fox just to name a few.

2-18-12 Diagnosed with Stage IV RCC that had Mes to his lungs (1 spot on the left lung and 4 on the right lung)

3-15-12 Left radical nephroectomy

5-5-12 Votrient 800mg

8-3-12 Scans showed a reduction in size of the lung nodules and nothing new anywhere else.

10-19-12 Scans showed Votrient stopped working and righ lung nodules had increased in size

10-25-12 Started Afinitor and boy that was a bad ride for him with side effects.

1-11-12 While in the hospital scans showed 2 of his right lung nodules had doubled in size sinze 10-19.

1-19-12 Started Inlyta as a third line of therapy

A lot of people have much luck on Votrient and Afinitor so keep the faith in that.

carmgllgs's picture
carmgllgs
Posts: 4
Joined: Jan 2013

Thank you KJones1969.  Yes, I have faith that Votrient will help him.  Praying helps the family a lot too.  It must be really hard for you right now, I hope everything goes well and will pray that your husband responds well with his new treatment.  

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Carm, good luck to your father. I didn't catch how old he is but I'm 60 and have had absolutely no problem with only one kidney. Don't worry about it. He is going to be followed closely from now on by his doctors.

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Carm, good luck to your father. I didn't catch how old he is but I'm 60 and have had absolutely no problem with only one kidney. Don't worry about it. He is going to be followed closely from now on by his doctors.

carmgllgs's picture
carmgllgs
Posts: 4
Joined: Jan 2013

THank you for sharing Foxhd

he turned 63 this past December.  He has been going to the gym almost daily, gaining weight (he doesn't want to gain anymore ^_^), and changed his diet.  No real side effects from Votrient (his hair turned grey, but that's about it).    

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

I'm sorry your dad has joined this exclusive CLUB. It's not easy hearing of a loved one's RCC diagnosis; I heard it for the first time on October 14, 2011, when my husband (one putt) was diagnosed with Grade 4/Stage 4 RCC with lung nodules. But never forget this CSN board is full of survivors. The advancements keep coming and we keep fighting just waiting for that magic bullet that will wipe out this terrible disease. In the meantime, we have to be thankful  for all the progress being made and stay positive. We can't let it  rob of us today with What Ifs. Remember this quote from Ben Franklin, "Do not anticipate trouble or worry about what may never happen. Keep in the sunlight.”  Your dad needs sunlight; give it to him.

Btw, I was at a fund raiser recently to boost the number of kidney organ donors. The volunteers for the event  were wearing "share your spare" t-shirts. Just a reminder we only need one kidney.  Many, many people live long healthy lives with just one. So when you start worrying too much, think of it in that light. Keep the faith. Prayers with you and your dad tomorrow. Keep us posted

carmgllgs's picture
carmgllgs
Posts: 4
Joined: Jan 2013

Thank you Alice124 and yes, emotional support helps a ton, I think.  After my dad's scans in December, he even told me that he was feeling miserable in September and October, but that our support kept him going.  I still remember how his eyes looked when he hugged me on my birthdat, Oct 6.  Now I see a more positive, faithful, and happy person who is able to laugh and smile once again.  

Aside from his medical treatment, we have also done a variety of alternative treatments (guanabana or graviola tea).  

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