Wife age 23, stage 4 kidney cancer

Hi Everyone, I was just hoping to vent our story and hoping to get some supportive words. My wife, (Charli), was diagnosed with stage 4 clear cell renal cell carcinoma in December 2011. With a 9 cm mass in her kidney, 7 cm mass in the adrenal gland, mets to the lungs, lymph nodes up to her neck, and on her lower spine( which is slowly breaking her spine). Our oncologist is completely awesome and we are very happy to have him. We started out on the max dosage of torisel in December. Scans in February showed that it wasn't shrinking and slowly growing. We then tried to combine torisel and sutent.....this sent her to the hospital for two weeks due to the side effects. After that we backed off the torisel and are currently doing the max dose of sutent. According to the latest scans, things are starting to shrink. Which is amazing news. I was just wondering how many stage 4 survivors are on here, and if anyone our age has been through this? We also started a website to keep everyone up to date. Www.prayforcharli.com Please take a look around Thanks everyone, Derek

I do not know about kidney cancer but I was diagnosed with oesophageal cancer when I was 32 (stage 2 or 3) and I am a 5 year survivor now and have a 1 year old and 2 year old.  I found it tough finding people under 40 who were survivors.

Hi Derek, don't give up, it sould like she could be a candidate for IL-2.  I was dx 1/2008.  Had kidney removed, mets to lungs & brain...did the IL-2 in 2009 and finished in Feb 2010.  IL-2 doesn't pass the bain barrier : ( If you would like more information, please let me know..I was told that IL-2 works on bone mets as well?

Feel very Blessed

Hang in there and keep the faith.  I was diagnosed with stage 3 RCC  in March 2009 and had my left kidney, tissue, and lymph nodes removed.  Will pray for your wife, you, and your family.

God Bless.

I am so sorry your wife is going through these bad times.  Cancer has no respect for age, gender or nationality!  Welcome to the Forum, you will find some really nice people here who offer some good advise; we are all in this together!

Read the post on the Kidney forum:

14 Kidney Cancer Survivor new CT results show enlarged lymph nodes in lung and stomach

I found these posts very inspirational!

I hope you and your wife will keep a positive outlook on life,  stay strong and have hope and faith for brighter days ahead.

Prayers and blessings,

B

Derek,

What does the oncologist say about surgery having the kidney and adrenal gland remove? How bad are the lungs, how many spots and where are they?

Make sure she keeps getting her heart tested before and after sutent. There are pills to help correct the heart if it gets damaged by the chemo.

My dad passed away from Kidney Cancer on April 18th, of this year. He had it for 18 months. He had the agressive kind in his lungs. Regular chemo worked on his for awhile but the drugs never stopped the lungs. You really need to know what type of kidney cancer it is. I say get that Kidney out and adrenal gland. Radiate the spine, and then treat the lungs with the chemo. The lungs are sooooo important but if they are responding to the chemo that's a good sign. If they are only in one spot they can be removed too.

Do you go to a good hospital? Do you see a kidney cancer specialist or just an oncologist?

Hi Derek - I, too, have been diagnosed as stage 4 kid. cancer which had metastisized to my pancreas.  Feb. 2/12 I had a "whipple procedure" and my left cancerous kidney removed.  I am coping with extreme tiredness, diet problems but thankfully have not had to have chemo or radiation.  But here is the kicker - my oncologist has said quite difinitevely that the cancer will come back after my surgeons had said they were giving me a cure.  You are very fortunate you have a good oncologist - I let my oncologist "get into my head" and am just waiting for it to strike again.  I absolutely detest him for giving me no hope.

I am very sorry about your wife as she is so young.  It must be horrible for both of you.  My biggest advice is to "keep hoping", and try to believe the diagnosis but not the prognosis as doctors don't know everything.

I am due for a gastroscopy next week as they have discovered polyps in my stomach and I thought I was done with hospitals & drs. for awhile but not my luck.  (Anyone who has had a whipple procedure & polyps please respond to hopeful123)

I have a few very good friends who are there for me (I am alone) but not so with some of my family which is hurtful. 

I will pray for your wife and I would much appreciate it if you would pray that my oncologist is wrong.

Hopeful123

Hey, just to answer a few questions, Kidney and adrenal gland could be removed but at this point it is do dangerous and we decided against it. The cancer is so progressive and had spread to close to her brain that if we back of of the max doses of chemo long enough for us to have surgery then we risk it spreading to the brain or other locations. At this point since the Sutent is doing its job there is no reason to risk this right now. As far as the lungs the spots are shrinking as well. The spine was radiated first and foremost to prevent pain and from it doing more damage. And the type of cancer is clear cell renal cell carcinoma. We have a great hospital and an even greater oncologist that is very passionate about this.. We have scan coming up in a couple weeks and I will keep everyone updated.

Hope123, First of all I will def be praying for you, and I feel for you not having anyone, I don't know what my wife would do without me. We have a hard enough time as it is. Secondly, get a new oncologist. If he's not giving you hope, then he is a useless doctor. My wife has mets throughout her entire body, lungs, spine, adrenal gland, liver, and has spread up the lymphnodes all the way to the neck. Our oncologist tells us that we will beat this constantly and even when the first chemo didn't work he said we will try every chemo there is for kidney cancer until something works. Thirdly, MD Anderson in Texas. Our oncologist agreed, if we ever run out options that we go there. We will continue to pray for you, and if you want to stay up to date with us please feel free to go to our website. www.prayforcharli.com

My husband is a survivor, stage 4 8cm tumor on left kidney with local metz, 2 years have passed.  He has no kidney, adrenal gland, distal pancrease and umpteen lymph nodes.....please look into Interluekin 2 (IL2).  Oncologists forget about it and it is not given the way it used to be given.(much gentler now, not as scary as the info states)  Cancer cells shrink.  It can only be given to healthy people, no lung/cardiac issues.  We had to travel for treatment, the closest hospital that administered it was 1.25 hours away.  Please look into it...it is why my husband is still here today.  By the way he was 39 at time of diagnosis.  I am a RN and did alot of research.