Translocation Renal Cell Carcinoma XP11.2

XavierS1984 said:

I too have Translocation Renal Cell Carcinoma

Hello, my name is Xavier and I live in Phoenix, Arizona.  I am a 33 year old male and I was diagnosed 2 years ago with Stage IV Translocation Renal Cell Carcinoma.  My oncologist has told me that only 50 people in the United States have this disease, so I know exactly how you feel winning this stupid lottery.  I have and continue to google the disease every month or so and more often as my scans come up every 3 months.  I know how it is to find limited information and the scholarly articles are Greek to me.  They initially couldn't figure out what this was, and I was ultimately referrred to the Mayo Clinic out here in Phoenix (the only good luck I have had since finding this.  They are Great there.).  I had a 2cm tumor on my kidney and an 8cm tumor extending from there that completely encased my aorta.  After the tumor resection and partial nephrectomy it was determined through pathology that is was Translocation.  A year later I had recurrence with another 2 cm tumor on the spot of my previous surgery.  I elected to have my left kidney completely removed this time.  This was three months ago as I write this and I have my first scans since then coming up this week.  I was told that if they continue to find more disease that they can continue to cut stuff out.  If it turns out to be inoperable they are going to enroll me in a PINCR trial of the drug Pazopanib.  They said they have had good results with this drug, however, just like everything else with this disease, there is just not a lot of data yet.

Please know, that it does feel lonely, but there are others out there living with this, even though they are extremely tough to find given the rarity.  You are the second I have come across in my internet searches.  There is another man I recently found that is a Fire Fighter in Asheville, NC and I requested to follow his group on facebook, but I have not received a response, I will include the link below.  I wish you nothing but the best, and I think we are both ahead of this disease.  If I find any new developments I will post to this thread.  Thank you for being brave and reaching out to the community.

 

http://www.foxcarolina.com/story/37053992/fundraiser-held-for-asheville-firefighter-fighting-uphill-cancer-battle

 

I‘m new to this, so bare with me. My 30 y/o loved one was just diagnosed with this type of cancer (stage 4 if they staged it)  January 25th. I don’t thing they stage tRCC with metastasis and She has mets in both lungs. The tumor in her kidney is 11cm, so they have to do an open radical nephrectomy. She has surgery in 2 days at MD Anderson. I have no idea how it feels to be in your shoes, or hers. All I know is that I am terrified, and, like you said, you’re not alone. I actually live in Tucson, so I’m not far from you. I have experience in the medical field, but nothing in nephrology or oncology. I have reached out to some of my friends who are doctors, including the doctor who discovered Xp 11.2 tRCC. 

So, while I am certainly not a patient, I wanted to be a part of this forum. I hope it is ok to be here, and I would be happy to visit with you to review what I’ve learned if you’d like. That goes for anyone here with advanced tRC. I cant do anything to change her diagnosis so I’ve poured myself into research... guess it’s my way of coping?

how do I give my email or phone number on a one on one basis? 

Thanks for reading all of this. 

kidneystoneblessing said:

Good to hear!!

Wishing you the best outcome!  We will beat this!  Next scan for me is march 16th.  Will let you all know my results.  

My scan March 16th came back clear.   No evidence of disease.   next Scans in mid June!  Closing in on a year with many more to go!

I am another member of this very small group. It's nice to know I'm not alone in dealing with this disease, but truly I wish none of us had it

At 47, I was diagnosed with tRCC in February 2017 after being extremely sick with what turned out to be a kidney infection. In the course of diagnosing the infection, they discovered a 5 cm tumor on my right kidney. A few weeks later, I had a nephrectomy. They thought I would be fine because it was caught early and the margins were clear. Unfortunately, my six month scan revealed the cancer had spread into my lymph nodes at the edge of the nephrectomy bed. I had a second surgery to remove the lymph nodes (RPLND) and right adrenal gland. A scan several weeks later, showed that the cancer had spread to my chest -- thoracic inlet, lymph nodes and lungs. Unable to get ahead of it surgically, we are now fighting it systemically.

I have been on the targeted drug therapy (aka inhibitor), cabozantinib for 3 1/2 months. My last scan (February) showed that the drug is having an impact -- no new spots, nor had the existing spots grown. I have another scan in mid-April.

 Xavier, pazopanib must be similiar to cabozantinib; My hair has turned white as a result of the drug too. I've had many other side effects, but most have been manageable...albeit, not much fun. 

Best wishes to everyone.

Hi - my husband sadly is also in this club. RCC xpii translocation in 2008 and recurrence 2016 with mets to liver, spleen, intestine  and now since december, spine. He is said to be..stage IV. It is heartening to read about others in the same boat. It is devastating to watch someone you love going through this and i look anywhere I can for information and support.

He was on pazopanib and responding so well to it, but since the spine mets was put on cabo... last ct this week shows liver met is increasing in size - he sees the oncologoist on tuesday for next step...

Awesome news!  Thanks for sharing AND good luck with your half marathon.  

Stub

Hi all!  An update.  After nearly 1 year since resection of a 4cm tumor in left kidney (incidental finding) and about 14 months since diagnosis, latest scans were NED!  So on to the next year and to start running the SF half marathon!  Love this site and supporting hearing other stories.  To all, stay positive, live life, and love the family and friends.  next scans October 2018!  Wanted share under this thread since translocation rcc is extremely rare (1 and 10 million). 

Welcome back, ambava!  This post has popped up with new members a few times since you last checked in, which made me think of you.  I'll be sending you good thoughts on Friday.

Stub