Translocation Renal Cell Carcinoma XP11.2

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  • kidneystoneblessing
    kidneystoneblessing Member Posts: 26 Member

    Update

    Hi all, according to my last scans in late January I have had recurrence of the disease around the area where they removed my left kidney.  Several on the lymph nodes and some suspect spots now in my lungs.  I have started the trial drug Pazopanib and so far the side effects are very managable.  I will keep you all posted if this drug works out well for me.  I have read a lot of reviews about this drug and most seem to be good.  I hope I have the same outcome.  I wish you all the best during your journeys and I hope we can all kick this things butt.

    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.  

  • kacw
    kacw Member Posts: 1

    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

     

    Xp 11.2

    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. 

  • XavierS1984
    XavierS1984 Member Posts: 4
    kacw said:

    Xp 11.2

    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. 

    You can find me here

    Hi you can email me at xaviers1984@yahoo.com or I am also on facebook here https://www.facebook.com/xavier.sifuentes

    Feel free to contact me whenever you would like.  I would be happy to provide you with any information I can.  Thanks.

  • kidneystoneblessing
    kidneystoneblessing Member Posts: 26 Member

    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.  

    Latest scan NVED

    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!

  • XavierS1984
    XavierS1984 Member Posts: 4

    Update

    Hi all, according to my last scans in late January I have had recurrence of the disease around the area where they removed my left kidney.  Several on the lymph nodes and some suspect spots now in my lungs.  I have started the trial drug Pazopanib and so far the side effects are very managable.  I will keep you all posted if this drug works out well for me.  I have read a lot of reviews about this drug and most seem to be good.  I hope I have the same outcome.  I wish you all the best during your journeys and I hope we can all kick this things butt.

    Looking better

    Hi everyone, I just had some scans last week and it appears some of my tumors are no longer detectable and the larger ones seem to be shrinking.  This is very exciting news for me, however, I am far from out of the woods.  I still have a long ways to go to be absolutely cancer free, but these last round of scans gives me real hope.  The drug pazopanib is what I am on and it has minimal side effects, the worst being diarhea.  My hair is completely white now and my skin is getting lighter as well.  A small price to pay I imagine to stay alive and be here for my babies.  Good luck to everyone, and I will keep you updated on further developments.

  • tmart
    tmart Member Posts: 1
    Another one

    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.

  • kidneystoneblessing
    kidneystoneblessing Member Posts: 26 Member
    It’s good to see these drugs are working!

    From what I have read system therapies have been tough with this type.  Good to see some stability and even some tumors going away! Positive vibes and continued strength to both of you!  

  • HJS
    HJS Member Posts: 1
    Hi - my husband sadly is also

    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...

  • cbrider
    cbrider Member Posts: 1
    Treatment for Translocation

    What treatments have you used and were they effective?  Anyone tried Optivo/Yervoy combo??

  • stub1969
    stub1969 Member Posts: 985 Member
    Awesome!

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

    Stub

  • kidneystoneblessing
    kidneystoneblessing Member Posts: 26 Member
    stub1969 said:

    Awesome!

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

    Stub

    Thanks!!!

    Ya very excited!  Kidneys are holding up great too!  Maybe even better since surgery lol

  • kidneystoneblessing
    kidneystoneblessing Member Posts: 26 Member
    Update 7/2/2018!

    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). 

  • ambava33
    ambava33 Member Posts: 74 Member
    Long time since I have checked in

    Hi everyone! Wow, didn't think I would login after so long and see so many people added to our fun club! (LOL) I have stayed very low key just for sanity. I needed some normalcy in my life and I got lots of anxiety when I logged in to this site! However, it is now time for my yearly scans on Friday so I must face reality and know that Cancer has happened to me, but I have faith that it wont' break me. I hope all of you are doing well and I will update after Friday when I get my results. I am praying to the high heavens for NED to be my result! 

  • stub1969
    stub1969 Member Posts: 985 Member
    I've been thinking about you.

    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

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    ambava33 said:

    Long time since I have checked in

    Hi everyone! Wow, didn't think I would login after so long and see so many people added to our fun club! (LOL) I have stayed very low key just for sanity. I needed some normalcy in my life and I got lots of anxiety when I logged in to this site! However, it is now time for my yearly scans on Friday so I must face reality and know that Cancer has happened to me, but I have faith that it wont' break me. I hope all of you are doing well and I will update after Friday when I get my results. I am praying to the high heavens for NED to be my result! 

    Hey, Ambava

    Uncle Ned is having dinner at my place, so he will certainly be available to drop by and see you later in the week. 

    All the best - !

  • ambava33
    ambava33 Member Posts: 74 Member
    MIA

    I have thought of you all so often. I thought about loggin in a lot but like I said it was just to much anxiety when I read a bad story. I only want everyone to have good stores. If only life were that easy. Thanks for the good thoughts for Friday Stub and JerzyGrrl I am so happy for you! I sure hope uncle NED feels like visiting me too. 

  • mamabear1972
    mamabear1972 Member Posts: 1
    edited September 2019 #38
    New Diagnosis in 14 yo

    Not sure if this is still an active thread but checking in anyway.  My 14 year old daughter was recently diagnosed with this XP11 translocation RCC.  

    We had been monitoring the mass for about 2 years as it showed as a possible kidney stone and was small.  The last CT showed it had grown to around 3cm.  Her urologist said it had to come out.  He originally was going to take the whole kidney and then decided that because of her age, he wanted to explore other options to preserve as much kidney tissue as possible.  Enter a Urologist who works on adults and specializes in robotics.  They removed the mass, said it was very contained, and were able to salvage about 2/3 of her kidney.  We painfully waited for the path report.  It came back positive for this XP11 translocation RCC and said the margins were clear.  I don't understand much of the information that I find about it since it's mostly medical studies.  Is this a type of cancer that reappears? 

    Coincidentally, did you see that recently an actor/tv host (Cameron Mathieson) just announced that he was diagnosed with RCC?  His surgery is today. 

    We are seeing a pediatric oncologist next week to discuss future treatments, monitoring, etc.  Maybe I'll be able to find out more about this rare cancer. 

    In the meantime, I'm focused on keeping as much normalcy for my daughter as she recovers.  She's tired of "home prison" as she calls it and shockingly can't wait to get back to school.

    I welcome any insight you have and wish you all the very best on your own journeys.