I have no experience with the cancer you described, but I do have experience with other cancers. It's a horrible disease that took many of our love ones and we all wonder if there was something that could have saved them. My conclusion is in most cases there isn't. My husband died of lung cancer after surviving a previous lymphoma and several heart attacks. The lung cancer took him just 10 weeks after diagnosis. It was devastating and I found myself believing since he survived the past he would survive again.

As the reality set in we knew he wouldn't and still I felt it would come, but not today. I'm sorry for your loss and welcome you to the group. I hope you find the comfort of being with others who have gone through this horrible time and understand the pain it brings. Sharon

I do know people who are functioning on one kidney, however they don't have a rare cancer. The fact that your husband had an unexplained rare cancer made it more difficult to treat him.
My husband had AML leukemia, I was his caregiver nurse for almost three years, I could see that even the "Top" doctors were sometimes at a loss how to treat these new forms of cancer. It seemed that everything they tried, was a trial procedure.They were in the dark a lot of the time. So every patient who develops a rare cancer is basically being treated, hoping for the best. There are no stats for them to predict the outcome.
It's natural for you to have these questions. You are questioning if you could have had better treatment. You did the best you could do,

Peace and hugs,
Sandra.

My husband had stage 4 glioblastoma multiforma brain cancer, rare and with a survivorability of 0%. I knew he wouldn't make it and tried to support all the treatments he endured. I take some comfort knowing that with each rare cancer patient the doctors treat, they learn a little more about what works and what doesn't. This may give the next family an extra day, an extra week, an extra month.
I'm so sorry for your loss and I understand your need for answers. Take good care, Lori

My husband had two separate forms of cancer. One got his kidney, bladder, urethra, the second got his prostate. He had it all removed. No further treatment. They gave him 2 months to live, that was 17 years ago. He died 22 months ago. The drs said he wouldn't survive the treatments. And it was quality versus quantity of life. Sandee

My husband had lung cancer and was at two different hospitals. They did a botched surgery which we were later told was not needed. He went from 179 to 112 lbs. I was very angry at these hospitals for a long time. He has been gone almost sixteen months and I am finally at peace that if it was God's will for him to live, he would have.

The horrible cancer. Yes my hubby had lung cancer, TWICE. He survived the odds the 1st time but not without many consequences over the years he was recovering. The 2nd time another form of lung cancer appeared and he did not survive it. There are cancers that have lots of successful treatments but it all has to do with the actual tumor itself.
I know the state of shock it seems to me lasts for quite a while then the grieving. When you get busy and do things it's as though things feel normal and then you walk into an empty home and not see your other half there smiling at you or coming over to give you a hug.
I am very sorry for your loss and can tell you honestly that i know how you feel.
We all hope time will help us heal. Time flys by when your spouse is sick and dying and then time is slow as molasses once they are gone. Please take care.

My husband went from 165 to 59 pounds when he died.

So sorry for your loss. Cancer - oh dreaded cancer. my heart breaks for all of us. My husband was also on dozens of prayer lists. Stage iv cancer initial diagnosis, three months the oncologist told us - but he fought for nine months. also told it was rare.... I miss him every day. Much peace to you...

Paul had stage 4 pancreatic cancer. Diagnosed in December last year, gone by March 25th.

I feel like everyone has met someone or had someone in their lives close to them effected by cancer. There are no words to describe the anger that comes with this disease. I haven't know anyone with that specific form. My Uncle (and Godfather) had lymphoma and lost his battle in July. My fiance lost the fight in September. My Grandfather passed for Leukemia. And I have know many other who did not make it either. Then I have known people who have. My sister has been cured for 20 years from Leukemia.My Mom caught her breast cancer in the very early stages and is expected to have a full recovery and my Aunt is clear or parotid gland cancer which is very rare. So, there is hope. While we may not understand why some people beat it and some can not we can possibly find peace knowing that it doesn't take everyone we love. I am very sorry for your loss.

My 58yr athletic hubby came home w/cough on Monday dx w/pancreatic cancer w/mets on Tuesday ~ dead by Sunday. He played intense VB and stayed after for hot wings/beer the Sunday prior. ..also cut down trees and split wood. No clue ... WTH !

Thy will be done...he was God's not mine

I'm so sorry for your loss. My wife's cancer was a different type but also extremely rare. There were no known treatments beyond palliative radiation. She tried some rounds of experimental targeted chemo knowing that the odds were not in her favor. She spent 10 months at home with me and hospice before God took her. Throughout the 7 years following her diagnosis, she was covered in prayer. In the end, the outcome was no different than we were ever led to believe it would be.

In my experience, God always answers prayers. Not always when and how we'd like. In our loss and grief it's difficult, sometimes impossible, to hear or understand His response. Many times, it's in hindsight that those answers become apparent like her ever positive attitude and her ability to show others how to approach death with peace rather than fear. I agree with marijapomagaj, she always belonged to God, he just shared her with me for a time.
Peace and ((hugs)) to you,
John

Norske1, your messages is hitting my heart as my experience is very similar to yours! Here is my story......

My husband - 31 years old beginning of 2014 was suffering with sever back pain - thought it was a pulled muscle. 2 May after a biopsy discovered CANCER!! Scans picked up masses in his lymph nodes all the way down his back one of them on his lower back was 12cmx8cm (MASSIVE) started with an Oncologist, they could not find the "mother" was a mixture of carcinoma/lymphoma - the doctors did not even really know what to call it. My husband braved his first round of Chemo in hospital after that the next few month we went to 5 of 6 of a chemo for unknown primary. In the middle of the chemo the doctor advised us it was working as he was not in so much pain any more not having to take his morphine as much and could do a little more each day than before the debilitating pain. In Sep he started becoming very yellow, rushed him to the doctor as the pain was back and worse. 18 Sep rushed him back into hospital - 20 Sep was his brothers wedding which we could not go to as he was not well enough. Cancer spread to his liver & he had jaundice. 23 Sep had a small procedure (gastroscopy & colonoscopy) that afternoon his heart stopped they had to use the machine to revive him - the medicine they gave him was too strong for him. The next week doctors told me there was nothing more they could do for him his body was failing - renal, kidney etc. list went on and on.

Monday 6 October left him that night he was still awake in pain but ok - every night I left we pinkie promised we would see each other in the morning. Tuesday got to the Hospital he was in a coma and on 25ml/h morphine he woke up twice - once to say "ill be okay" to his brother and the other when I whispered to him "I love you" he woke up and said "I love you too" that was the last thing my husband said to me.

3pm - 7 October 2014 - my beautiful, strong, brave husband left me. I will never know where this cancer came from, I feel every day was there something else I could have done. Why him?? So much pain I had to watch him go through, watching him died, living each day without the love of my life and soul mate. He too was on hundreds of prayer lists but to no avail.

The only peace I have is the last few months we held onto each other, we cried, fought, were scared and loved till it hurt. 31 October his Grandfather passed away (stroke & age) 2 amazing men in the same month......

Those many questions WHY a 31 year old strong, decent, hard working, loved man. WHY my man??

I am here to talk Norske1....

Dear Kate~ Only 31 ... God hold you ! My husband was buried on October 7th... it is the Feastday of the Holy Rosary. Praying the rosary (even when I don't feel a thing) has brought me much comfort and daily peace as I stand under the cross with Mary FIAT ... in your case you are on the cross (and many others here) whose loves were so young that they never had a full life. Redemptive suffering has been my consolation ... offering up all the pain/suffering for souls/family etc. Gives it all a purpose and it is not wasted. The PIETA ~ Mary as Sorrowful Mother (and also Widow) understands. Go to her... if you can. Meanwhile gratitude for all blessings received helps also. Have been on this journey for three years... takes a long...looong time... even when suffering WELL

EWTN radio/internet is a godsend as well....esp Mother Angelica and Johnette Benkovic ~who lost her son/MVA and husband/brain cancer. Helps me...hope it helps even just one of you :)
http://www.womenofgrace.com/en-us/default.aspx

My 59 year old husband died of renal cell cancer (clear cell) on February 14, 2014. I know the drugs you are speaking about, the Votrient and the Affintor. Both of those drugs are only used to extend life and do not take away the cancer just slow it down. My husband had his kidney out in Philadelphia at Jefferson, then went on a clinical trial with Sorafinib and still progressed. We then for some reason met someone whose father was being treated for clear cell renal cancer at John Hopkins and told us that his dad was clear of the cancer now. So of course we asked our onocologist in Phila. about this new drug and he knew the doctor at John Hopkins and off we went to Maryland and he got on this phase 2 clinical trial of Nivolimab/Votrient. Had to be taken off the votrient after just a short time but remained on the newer drug Nivolimab and got 80 percent reduction of lesions, but after 14 months on the newer not FDA approved drug Nivolimab he progressed with break out lesions Had stereotactic radiation and then went on affintor which only at it's best extends life 2.5 months I had read. He still progressed just slower and lived another 7 months then it over took him.

Bottom line is there is not much you can do for kidney cancer once it metastasizes. Newer ANTIPD 1 drugs are in clinical trials still and are even being used on melanoma patients with success but are not yet FDA approved.

I have done a lot of research and have gone through this for the past 6 years and is the very reason why I am writing to you. Nothing else could have been done you went to the best places and the advice you were given was correct. Not sure he would have qualified for clinical trials due to it being non clear cell renal cell. The clinical trials are now closer to becoming FDA approved drugs but are still a few years out.

I feel my husband gave his body to science to test these drugs to maybe help others with kidney cancer and who knows maybe someday there will be something that can cure it or atleast help extend life more.

I am hoping this helps you know you did all you could! I do not look back, and yes it was hard but he is smiling in heaven right now talking to your husband about this ugly disease that they do not have anymore! Hugs Debbie