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CDC-Collecting Duct Carcinoma - HLRCC

259Ghost
Posts: 1
Joined: Oct 2011

I have a 26-year-old son that was diagnosed with CDC this past April. Looking back at some of the symptoms my son has had, chances are very good that he had this cancer in January of this year. Is been on chemotherapy for almost 5 months given to them every Friday three different types of chemo. He has had radiation therapy every day Monday through Friday few breaks in between. Finally two weeks ago, his right kidney was removed on sending his kidney to pathology it was determined that the kidney was the origin of the cancer. However he has cancer in 19 other spots in his body. My son is dying. He has been given seven months to 17 months to live I should like to turn those 17 months into 17 years plus. My son has a beautiful wife, and three children, two girls and one boy. My son is also in the United States military, he is an E-5 in the United States Coast Guard. He loves his job, he loves his country, he loves his family. If there is anyone out there that can offer me some insight some silver bullet that I can kill this cancer with that I can fight it with, please talk to me.

~Rick~

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Dear Rick,

There are no words to ease your pain and fear but I do know exactly what you are going through. Three and a half years before I was diagnosed with RCC my youngest son was diagnosed with Hodgkin's Lymphoma, he was 26 and his wife was pregnant with their fourth child. As bad as it is to hear that you have cancer it is infinitely worse when it is one of your kids, I went completely numb and was unable to speak. When we learned that my son's cancer was very treatable the tears literally squirted from my eyes. We all pray for the day when a magic bullet wipes this disease from the face of the earth, until then know that you are not fighting alone. Add my thoughts and prayers to those that support you.

Gary

ams123
Posts: 71
Joined: Aug 2011

I'm sorry I don't have any silver bullet or even knowledge of this type of cancer, but I wanted to express my sorrow about your son's illness. It doesn't seem fair, he is so young, with young children, and he fights for our country. I have two children and it would be devastating to hear that they are sick. I would much rather be sick than either of them.

All I can say is that this is a very supportive group, and you can come here to vent, to cry, to just have shoulders to lean on. I think that is all I can offer you, and I know it's not much.

Linda

cath123
Posts: 1
Joined: Dec 2011

Hi- My dad has been fighting this cancer since april. If you send me your email, I can email you more of his treatment plan etc. Thanks.

BG
Posts: 85
Joined: Jun 2011

Hello Rick, I am very sorry to hear about your son. I highly recomend you search support,
listserv.acor.org/archives/kidney-onc.html, post your information, and see if you can get some options. There are several individuals who have been fighting this disease for many years, so do not trust the statistics. You will need to subscribe to the website.

There are many knowledgable individuals here, who can also provide support, and guidance. However, it is best if you reach out to both support groups. The acor site has individuals who have experience with the different therapies beyond surgery, and can provide critical information.

Some travel for the appropraite treatments, or work with a world renound RCC expert for guidence, who works with your oncologist to provide the best therapy.

My prayers are with you and your family. God bless,

BG

GrahamL
Posts: 3
Joined: Jul 2010

I have only just seen this post and hope that your son is surviving against the odds
The specific genetic condition called Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) is associated with some Papillary 2 and Collecting Duct RCC. This is caused by mutations in the Fumarate Hydratase (FH) Gene. More information can be found on the web site for the HLRCC Family Alliance www.hlrccinfo.org .
We have also written a Handbook which can be downloaded.
The NIH is the leading centre for treating this condition.
Best wishes
Graham Lovitt HLRCC Family Alliance Vice Chair

aldiyana
Posts: 16
Joined: Aug 2012

hi...i see this is a very late post but i hope that you will see and answer...

firstly im very sorry to hear that your son has this terrible cancer!...

but i know every bit of emotion that your going through...my husband who is 27 has also been diagnozed with this cancer...im 24 and we have 2 little girls (2 and half) and a baby (9 months)...

his left kidney along with the cancer was taken out about 2 months ago but they said that it had metasized to his lungs...his only symptom was a dry persitant cough...and mild tempretures

the tumor was discoverd in march of this year and taken out in july...but he has been coughing since december 2011...the doctor prescribed him VOTRIENT and he is also takeing IMMUNCO ACCH...which is suppose to help boost the immune system and help against fighting the cancer. we are still waiting to start the drug VOTRIENT...

i pray every second of the day for my husband...and i suggest you do that aswell and fight for him...everything u hear that can help you should try, nothing can make it worse i say...i think that their ages makes a whole lot of diffrence with this cancer as they are a lot stronger in fighting against it...and there are so many drugs today that im sure will help...has he been put on anything???

a good and postive adittued is also needed...just keep saying to yourselves that he will get through this he will fight it...and fight fight fight...and pray pray pray!!!

also try this alternative medicine that i heard of...take 1 KG of honey and grind 1 kg of apricot SEEDS...mix it all together and get him to take 1 tablespoon in the morninG before food and at night 1 tablespoon...i hope this helps!!!

please let me know how he is doing???

take care...

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Rick, How sad to hear bad news like " You've only got "X" months to live. If it helps, let me tell you that I was also given only several months to live back in October 2011. By January, I had little doubt that they were right. But I qualified for a clinical trial of MDX-1106. This has been a literal life saver. I am in amazing recovery and have a long life ahead of me now. So the message is that your son must stay vigilant and seek out options. I had not heard of this drug or trial, nor did 2 previous oncologists that I saw ever mention it's existence. Keep the faith my friend. Fox.

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