anyone have collecting duct carcinma kidney cancer

lauramaze

I feel like my husband is the only one in the world with this cancer, if you have any info at all please write back.

he's 28-stage 4 - hes been on several cheemos for 2 years with slow progression. He recently tried sutnet but it failed.

Please if you know anything, let us know...

God Bless
Laura

Samwise

Where There is Life, There is Hope
My apologies for the length of this post.

In September 08 my wife (42 years old) was diagnosed with CDC. It was discovered when she had her transplanted kidney (transplant received in 04) removed due to what was thought to be problems associated with the Polyoma virus. The cancer had spread throughout her body. She immediately began chemo and dialysis. Dialysis was a five hour process, three times per week. Three chemo drugs (Velcade, Gemcitabine, and Docetaxel) had no effect and the last two were very hard on her. Despite a lot of research, we stayed away from herbal therapies so her Oncologist would not have an extra variable to deal with when assessing the effectiveness of the chemo drugs. The alternative therapies we used were prayer, massage, and healing touch massage. She ate and drank whatever she wanted, but stayed with her practice of never drinking alcohol, eating red meat, or smoking.

Very early on in our cancer journey I wrote these guidelines:
- Overall, we will emerge from this test with our beliefs, values, and dignity intact.
- We will become used to the term cancer. I think that avoiding the word's usage is to admit that we have not come to terms with the situation. We have cancer, it does not have us.
- Our experience will not mirror that of anyone else. It is our test and the challenges God will pose will not be the same as any presented to any other family.
- We will have bulletproof minds when it comes to how we handle news, information, and people. Our mental shock absorbers are strong because of our faith. We know that everything God does is in our best interest, no matter how painful or even if we don't understand it.
- We will become closer to each other and to God. With the perspective of time, we will see this as a blessing. Questioning, blaming, and negativity cause rifts.
- We are human and will invariably have moments of weakness. In these moments we will feel angry, scared, and frustrated. We will feel this way, and then we will get over it and press on.
- We welcome the positive support of others. We will politely but firmly usher negativity out of our lives.
- We will run the long race. We expect no quick victories, but welcome these nonetheless. Endurance and patience are our watchwords, but we will surge when necessary.
- Where possible we will retain the initiative, but sudden, unanticipated change will not alter these fundamental thoughts.

In early June 09 she put her care in the hands of the Lord and entered hospice care. The hospice providers were great and perform a terrific service.

My wife's family includes a lot of MDs (none are oncologists) and all had opinions. All, including her father, were extremely pessimistic, and while professing to retaining hope, had basically written her off. Even my wife was preparing to die. I am not a physician, but I do know something about fighting and will. It was related to me that I was in denial because I felt, against all odds, she should keep fighting. I said I'm glad George Washington and the Continental Army didn't give up at Valley Forge and I accept the label of being in denial if it meant rejecting all thoughts of capitulation. My position was that my wife owed it to our children, ages 8 and 10, to fight to the very end with every ounce of her strength. We received tremendous support from family and friends, but what I am most grateful for were the three people (none of them related to her), besides myself, who said, for whatever reason, they thought my wife could get better.

In late July 09, probably to humor me and stop me from badgering her, my wife decided to try the antiangiogenesis drug Sorafenib, as its side effects were supposed to be more mild than chemo. Before she started on Sorafenib she had a CT scan done to establish her baseline. Unfortunately, after just a couple of doses the Sorafenib caused side effects about as bad as those she had experienced with chemo, so she quit taking it.

Miraculously, in early August when we got the results of the CT scan they showed a dramatic reduction in tumor size throughout her body - after having stopped all attempts at curative treatment seven weeks earlier. We thought she had been feeling better due to being off chemo. After continuing with no medical intervention, she had another CT scan in November that showed even more improvement. She got "kicked out" of hospice. Last Saturday she ran/walked over 7 miles. The thinking, aside from the Lord's intervention, is her immune system, long suppressed by anti-rejection drugs from her kidney transplant and the chemo had kicked in.

In retrospect, if it was her immune system, the correct answer then would seem to have been to do nothing and avoid the effects of chemo. This is easy to say in retrospect, but my observation is this is much too decisive an option to have been considered by her medical team, even though there is, as you know, no standard approach that has shown much promise for dealing with CDC.

I read tons of material about CDC and none of it was encouraging, but I knew there were cases where somebody out there, somewhere, had beat it. There is nothing that even approaches how long and how hard I thought about my wife's disease and its effect on our family.

I believe that:
1. Things won't always turn out like you want
2. People can endure a great deal more than they think
3. We owe each other the promise we will fight until we can fight no more
4. Thoughts or talk of capitulation have no place in times of great struggle and a low probability of success is not the same as no probability
5. Positive thinking will not always carry the day, but all is lost once you allow negative thinking
6. My job was to make sure my wife's will to fight showed up for work every day
7. History is the only judge of what the correct actions are

My advice is to keep fighting. The turning point could be right around the corner. Do not "horriblize" every bit of information. There is no logical reason to extrapolate every bit of news to the worst possible end. People, none of whom are nearly as heavily invested as you are, will use the term "hope". They only refer to "hope" as a connection to a remotely possible outcome - sort of like saying, "I hope I win the lottery". For you, "hope" also is linked to actions, options, and expectations. As my 8 year old daughter said, "we knew Mom wouldn't die because she was still living." Where there is life, there is hope.

God will take no one even a single second before it is their time. He is in control and He will provide.

Bethstock

Collecting Duct Renal Cancer
My husband was diagnosed with Collecting Duct Renal Cancer on 7/7/11. On 4/25/11 he had gastric sleeve surgery for weight loss to help correct his underlying health conditions. He was doing great until he started not feeling right. On 7/5/11 we went to his surgeon who thought it was his gall bladder. My husband went the next morning for blood work and an ultra sound. When I got home from work that evening, he was in so much pain that I took him to the ER. They admitted him and the next morning his surgeon came in and told him that he would probably be taking his gall bladder out that afternoon but wanted to do a CT scan first. The results of the scan showed a mass on the right kidney, fluid in the abdomen and spots in the lungs. My husband ended up in the hospital for 2 1/2 weeks and ended up having expoloratory surgery. The gall bladder was dead and gangrenous. The areas in his abdomen that the surgeon saw during the sleeve surgery 2 1/2 months before were now full of cancer. After almost 2 weeks it was determined that it was Collecting Duct Renal Cancer. He has 2 permanent drains in his abdoment to keep whatever is leaking into his abdomen from filling his belly and getting infected. We were referred to Loyola Medical Center. As we already new, my husband was not healthy enough to have any kind of chemo treatment. I have taken a leave of absence to spend what time my husband has left with him.

I haven't found much on line about this extremely rare type of kidney cancer.

You are not alone, there's just not a lot of us.

jstornetta

Bethstock said:

Collecting Duct Renal Cancer
My husband was diagnosed with Collecting Duct Renal Cancer on 7/7/11. On 4/25/11 he had gastric sleeve surgery for weight loss to help correct his underlying health conditions. He was doing great until he started not feeling right. On 7/5/11 we went to his surgeon who thought it was his gall bladder. My husband went the next morning for blood work and an ultra sound. When I got home from work that evening, he was in so much pain that I took him to the ER. They admitted him and the next morning his surgeon came in and told him that he would probably be taking his gall bladder out that afternoon but wanted to do a CT scan first. The results of the scan showed a mass on the right kidney, fluid in the abdomen and spots in the lungs. My husband ended up in the hospital for 2 1/2 weeks and ended up having expoloratory surgery. The gall bladder was dead and gangrenous. The areas in his abdomen that the surgeon saw during the sleeve surgery 2 1/2 months before were now full of cancer. After almost 2 weeks it was determined that it was Collecting Duct Renal Cancer. He has 2 permanent drains in his abdoment to keep whatever is leaking into his abdomen from filling his belly and getting infected. We were referred to Loyola Medical Center. As we already new, my husband was not healthy enough to have any kind of chemo treatment. I have taken a leave of absence to spend what time my husband has left with him.

I haven't found much on line about this extremely rare type of kidney cancer.

You are not alone, there's just not a lot of us.

newly diagnosed with CDC
(You are not alone, there's just not a lot of us) - that line is so true - not finding much information on-line or even from the Centers we have been. My husband was diagnosed with CDC after a 12/28/2011 surgery to remove a kidney and some lymph nodes. He is scheduled for his first chemo treatment next week.

GTaylor

jstornetta said:

newly diagnosed with CDC
(You are not alone, there's just not a lot of us) - that line is so true - not finding much information on-line or even from the Centers we have been. My husband was diagnosed with CDC after a 12/28/2011 surgery to remove a kidney and some lymph nodes. He is scheduled for his first chemo treatment next week.

My brother has just been
My brother has just been diagnosed with the same thing. And has been giving months to live. They have said chemo is not an option. He is only 22 years old.Finding it hard to come to terms with.