Papillary Renal Cell Carcinoma Type 2 Metastases

Tbuck1971
Tbuck1971 Member Posts: 50
in Kidney Cancer #1

All,

 

I wanted to give you an update on my advancing cancer diagnosis, to inquire about possible benefits of any medication suggestions, clinical trials etc.  In addition it is my hope that others in my similar condition read about my story and learn how to fight with their own battle against our evil nemesis. 

 

10-20-14: UNC Chapel Hill Cancer Center

My cancer pRCC Type 2 has spread to my liver where I have multiple "new" lesions since my last CT scan in June of 2014.  The new lesions are 7.2cm x 4.5cm in the 5th segment right lobe, 5.1cm x 4.5cm in segment 4B right lobe, 2.1cm x 1.8cm in segment 2 and 4.4cm x 1.7cm subscapular implant abuts right lobe.

I have new masses in the Right Renal Fossa 6.3cm X 3.6cm, 2.9cm x 2.8cm and other smaller less.

Lymph Nodes Mets:

Multiple Retrocrural and retrocaval lymph nodes  largest being 2.1cm x 1.8cm, Para-Aortic Lymph Node 1.8cm, left Para Midline Mesenteric 1.6cm and left abdominal Mesenteric Implant 2.2cm x 2.1cm.

 

Since there are no surgical remedies at this point a "whole body" approach to medical management has been advised.  It has been advised that I visit (currently set for appointment on October 30 at 7:30 am) with the Dana Farber Cancer Institute in Boston, MA.  I have met with these folks prior and my Doctor is Toni Choueiri a leading RCC specialist and the chair of lead Oncologist on the clinical trial.  I have no current info on the trial, but expect a call shortly from the clinical group at Dana Farber to discuss and outline the study. 

I have read that some success has been found with Enverolimus after failure of Sunitinib and Sorafenib.

 

Any suggestions about the following would be much, much, very, very appreciated.

 

1. does anyone with pRCC have any experience with any of my mets?

2.  Can anyone advise on possible drugs that I should prepare for or investigate for pRCC?

3.  Any idea on suggestions of clinical trials, etc?

4.  please feel free to give any thoughts you may have or reach out to me directly with a message of what you would suggest, etc.

 

I am here to fight, I am praying daily, I am so very thankful for every day and look to soldier through this fight I have in front of me.

 

Thanks again for being super in all phases of humanity!

 

Thx


Tom B.

Comments

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #2
    pRcc-- I forget which type

    Hi T-Buck!
    I have pRCC, not the hereditary type-- the spontaneous type, and I keep forgetting if that is type 1 or 2.  After a nephrectomy, IVC thrombectomey, lymph resection, and later, removal of a lung met, I now have multiple mets to both lungs, some affected lymph nodes, and some mets in the abdominal wall.  There is something that was once described as a hamartoma in the liver and they are now calling it a met. 

    I have had IL2, Votrient, a clinical trial that's only a number(got kicked out for growth), and some other targeted therapies.... I wish I could give more detail on the meds, but I am so tired of all of this that I just move on when it's time to move on, and forget about the past.

    Right now I am doing two drugs off-trial-- Gemcitabine and Sutent.  For the FIRST TIME, I have seen reduction in metastatic burden.  I should add that I am doing a natural treatment along side this, I am vegetarian, I eat no sugar, no processed foods, no processed oils, and I have a medical marijuana license.  Despite what seems like a poor prognosis, I am doing GREAT. I am energetic, I work everyday, I play golf.... going skiing in February. I don't let scan results stop me from doing anything.

  • NanoSecond
    NanoSecond Member Posts: 653
    #3
    c-MET

    Hi Tom.  Refer here:

    http://jco.ascopubs.org/content/31/2/181

    [Note that the study above lead author was Dr. Choueiri.  You are in good hands.]

    http://www.ncbi.nlm.nih.gov/pubmed/12050491

    Cabozantinib is another c-MET inhibitor.

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    #4
    Phoenix Rising said:

    pRcc-- I forget which type

    Hi T-Buck!
    I have pRCC, not the hereditary type-- the spontaneous type, and I keep forgetting if that is type 1 or 2.  After a nephrectomy, IVC thrombectomey, lymph resection, and later, removal of a lung met, I now have multiple mets to both lungs, some affected lymph nodes, and some mets in the abdominal wall.  There is something that was once described as a hamartoma in the liver and they are now calling it a met. 

    I have had IL2, Votrient, a clinical trial that's only a number(got kicked out for growth), and some other targeted therapies.... I wish I could give more detail on the meds, but I am so tired of all of this that I just move on when it's time to move on, and forget about the past.

    Right now I am doing two drugs off-trial-- Gemcitabine and Sutent.  For the FIRST TIME, I have seen reduction in metastatic burden.  I should add that I am doing a natural treatment along side this, I am vegetarian, I eat no sugar, no processed foods, no processed oils, and I have a medical marijuana license.  Despite what seems like a poor prognosis, I am doing GREAT. I am energetic, I work everyday, I play golf.... going skiing in February. I don't let scan results stop me from doing anything.

    Thank You!

    Thank You Phoenix Rising!

    I very much appreciate your input and the drugs you suggested.  I am staying active and doing what I can to remain upbeat and living this thing called life!  My family has been great, but they are devistated at the recurrance I have.  I keep telling them we can hug it out and make it better each day by living, loving, crying and just enjoying each day!

    Were you by chance in the clinical trial for AZD6094?  I am looking at that trial in Boston soon. 

    Again, thank you so very much for your input!

     

    God Speed and Bless!


    Tom B.

  • Tbuck1971
    Tbuck1971 Member Posts: 50
    #5
    NanoSecond said:

    c-MET

    Hi Tom.  Refer here:

    http://jco.ascopubs.org/content/31/2/181

    [Note that the study above lead author was Dr. Choueiri.  You are in good hands.]

    http://www.ncbi.nlm.nih.gov/pubmed/12050491

    Cabozantinib is another c-MET inhibitor.

    Thank You

    Thank You Nano Second,

     

    Dr Choueiri seems to be in front of much of the PRCC issues and has had some very good advice for me.  I wish I could have visited him at first when I found out i had this cancer, but I guess better late than never.  I am hopeful to enter a Clinical Trial soon that he is working with.  it is for AZD6094, but I had tests last week and may not make the cut.  They are supposed to let me know by mid week so it is anxiety all over again.  I am taking it one day at a time and staying positive and targeted with my efforts and approach. 

    One day we'll beat this crud and when we do it will be an amazing day of joy!  Thank You again so very much for the information and the links!

     

    Take care and hope you are doing well!

     

    Tom

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #6
    Past trial

    I was in the LY2875358 trial.  It didn't work for me, but GatorBob is doing well with it!

    So, I have had--


    IL2- Failed

    LY2875358- Growth


    Votrient- Stable about 9 months, then growth

    Inlyta-- Nothin'!  Growth.

    Gemcitabine + Sutent- reduction in tumor size and reduced metastatic burden.

    If you live in a legal MMJ state-- don't walk, run and get a license.

     

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #7
    Gemcitabine + Sutent

    I have forgotten to mention this, regarding treatments...

    Initially, I was supposed to get a Gemcitibine infusion once a week for two weeks, and one week off.  I was supposed to take the Sutent  for 14 days, beginning the same day as the Gemcitibine infusion.  So basically, two weeks on, and one week off. Well each time I came back for week 2, my white blood cell count was too low to receive treatment. My white cell count would recover the 3rd week.   So my husband to the oncologist, "Why not give her treatment as her body recovers?  If her body is reovering the third week, give treatment the third week."  The doctor agreed.... I am taking my treatment the way WE want to take it, and it has worked best for me.  Everyone is not the same and should not be treated as such.  I think this is why I have been successful with this treatment so far. I take it the way MY body tolerates it.  Don't be afraid to have these kinds of discussion with your doctors.  They are basically following the instructions "on the box," and they don't always know what's best for YOU.... but your body knows what's best for you.  Listen to it.

Discussion Boards