Progress Report - Sutent Patients Take Note

vdm13
vdm13 Member Posts: 47
edited April 2013 in Kidney Cancer #1

Hi, all. Vin here with another update. First, a recap: Male, 43 years old. Diagnosed in April 2012 with advanced metastatic RCC (Stage 4/Grade 4). Primary tumor of 8cm in left kidney with mets in lungs (innumerable!), left adrenal, right kidney, right adrenal, and along the spine at T4. Radical nephrectomy on 5/25/2012 included left kidney, adrenal gland, 14 lymph nodes and a slice of my spleen. Started Sutent around 6 weeks later at 50mg 4 weeks on, 2 off. Just finished my 8th cycle and had my latest scan yesterday. Here are the results:

Lungs: "No suspicious lung nodule. Previously visable lung metastases are no longer seen" (NO LONGER SEEN! How about THAT!)

Spleen: "Uremarkable"

Left Kidney: "No local recurrence"

Right Kidney: "Stable scarring in the right renal midpoint at site of metastatic disease" (Note that prior scan indicated mets were "no longer seen")

Bones/Soft Tissue: "Paraspinal nodule at T4 is stable" (Note that my doc said it is now a "flat thing" that lost its depth, thus shrunk)

Impression: "Since 12/10/12 . . . No new evidence of metastatic disease"

Oncologist's word for it: "FANTASTIC!"

My advice? Fight the fight, trust in Sutent, deal with the side effects, and believe in survival. Also, look into and use Gerald White's MAARS program.

Statistically 50% of people with my diagnosis would have been dead for 2 months already. My doc (at Memorial Sloane Kettering) is talking about YEARS to go with promising treatments in the pipeline with a 3 to 5 year horizon for potential CURES. He extended the period between scans to 4 - 6 MONTHS.

BELIEVE!!!

Love to you all!!!

Vin

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    #2
    Progress

    That is a terrific report, Vin. Congratulations!

    Are you also taking either Xgeva or Zometa for those bone mets?

    Keep up the great progress,

     

    -N

  • I am alive
    I am alive Member Posts: 315
    #3
    FANTASTIC!!!!

     

    Vin,

      Your story gives us all hope and courage! Keep it coming and congratulations! I assume you have clear cell, is that right? Who is your doc at Memorial Sloan Kettering? I go there too. My breath caught as I read that one of those MSKCC docs thinks there might be a 3 to 5 year horizon for potential cures. OMG!!!!! WE will all have to just hang in there. Enjoy your Spring!

  • Djinnie
    Djinnie Member Posts: 945 Member
    #4
    Progress Report

    Hi Vin,

    Your Oncologist was right there is only one word for it. You must feel like you can breath at last. Congratulations on such great results.

    All the best to you

     

    Djinnie

  • vdm13
    vdm13 Member Posts: 47
    #5
    NanoSecond said:

    Progress

    That is a terrific report, Vin. Congratulations!

    Are you also taking either Xgeva or Zometa for those bone mets?

    Keep up the great progress,

     

    -N

    Progress Reply

    No, Neil. Just the Sutent. Spinal met is adjacent to the spine, not in the bone. At least that is my understanding.

     

    :)

  • vdm13
    vdm13 Member Posts: 47
    #6
    I am alive said:

    FANTASTIC!!!!

     

    Vin,

      Your story gives us all hope and courage! Keep it coming and congratulations! I assume you have clear cell, is that right? Who is your doc at Memorial Sloan Kettering? I go there too. My breath caught as I read that one of those MSKCC docs thinks there might be a 3 to 5 year horizon for potential cures. OMG!!!!! WE will all have to just hang in there. Enjoy your Spring!

    FANTASTIC Reply

    Hi, IAA. My Oncologist is Jonathan Rosenberg. He thinks the cure - or at least the next breakthrough for treatment - will come from the immunotherapy front. You are 100% correct - All we have to do is make it long enough to be cured, be that 8 weeks, 8 months or 8 years. Or more. I choose to live.

  • alice124
    alice124 Member Posts: 896 Member
    #7
    Djinnie said:

    Progress Report

    Hi Vin,

    Your Oncologist was right there is only one word for it. You must feel like you can breath at last. Congratulations on such great results.

    All the best to you

     

    Djinnie

    Way to go Vin!

    See you're walking, talking, posting proof that Kidney cancer is no longer the death sentence it was once thought to be. I am so happy for you.

    But--be honest--don't you get a little pissed when they use the word "unremarkable" to describe parts of your body?

     

  • vdm13
    vdm13 Member Posts: 47
    #8
    alice124 said:

    Way to go Vin!

    See you're walking, talking, posting proof that Kidney cancer is no longer the death sentence it was once thought to be. I am so happy for you.

    But--be honest--don't you get a little pissed when they use the word "unremarkable" to describe parts of your body?

     

    Unremarkable, indeed!

    Alice,

    That phrase particularly bothers me when they reference my pelvic organs as unremarkable!

    Vin

  • Mikeyswife
    Mikeyswife Member Posts: 31
    #9
    Praise God

    When I read your post my first thoughts were OMG, OMG, OMG.  After thinking it over, I think Thank you God, Thank you God, Thank you God would be more appropriate.  I am so glad to hear your good report.  My husband started Sutent last night.  He is Stage 4/Grade 4 also, with three mets to lungs. 

    Thank you for your post.  Those just beginning the fight draw a lot of strength from you!  Fighting for a cure!!

    Karen

  • alice124
    alice124 Member Posts: 896 Member
    #10
    vdm13 said:

    Unremarkable, indeed!

    Alice,

    That phrase particularly bothers me when they reference my pelvic organs as unremarkable!

    Vin

    "unremarkable"

    WinkKnew it!

  • vdm13
    vdm13 Member Posts: 47
    #11
    Mikeyswife said:

    Praise God

    When I read your post my first thoughts were OMG, OMG, OMG.  After thinking it over, I think Thank you God, Thank you God, Thank you God would be more appropriate.  I am so glad to hear your good report.  My husband started Sutent last night.  He is Stage 4/Grade 4 also, with three mets to lungs. 

    Thank you for your post.  Those just beginning the fight draw a lot of strength from you!  Fighting for a cure!!

    Karen

    Stay Positive!!!

    Karen,

    Tell Mikey to stay the course. Any questions on Sutent, feel free to post or send me a message. I don't have all the answers, but I can tell you what I've done.

    I remember this: The first cycle is a bear. The second one is better. The thrid better still. And not better in the sense that the side effects are less, in fact they are probably more, or at least cumulative. BUT, as cycles pass you begin to recognize them and take steps in afvance to combat them. Neil (see post above) has some great data around this and can make recommendations as well. The people on this board are front line warriors, and we're all in it together.

    I can't stress the value of Gerard White's MAARS program (http://cancerwarsmaarsjourney.com/). Buy it for Mikey. Both the book and the CD. Many on this board use it. Gerry was given 3 months to live 20 years ago. Consider that it is scientifically proven that no cancer can win a head to head battle with the human immune system, and believe it!

    I could go on for an hour on this topic, but will trust that you will buy the book and CD.

    Finally, above all else, maintain a positive outlook. Nothing says we have to die from this, and we're all capable of beating it or, with the proper battle plan, lasting long enough to be cured. That's why we're here and supporting each other. It can be done. We can win.

    OK. One more thing. I hope and pray for Mikey that he has the same kind of results that I've been having. It makes you look in the mirror and see a strong person, capable of all things and unbeatable by any disease. He has to get a bit of an attitude and be willing to say F CANCER!!!

    All the best,

    Vin

    PS - Tell Mikey to start using Eucerin Cream, the one in the tub, right away on his hands and feet. It's greasy and sticky, but it works against hand and foot issues so common with Sutent. Morning and night. Bag Balm is another option, but I've had better results with Eucerin. I also mix in some less greasy, more therapuetic creams and lotions from time time, but the core for this side effect is Eucerin cream. Also, make sure he rests when needed. Sutent causes some serious fatigue. Hopefully his employer is as understanding as mine and will allow some flexability. I also suggest building a team of loved ones, friends and family, and tell them what your doing to fight the fight. The socialization keeps me strong and I know who I can turn to when the going gets tough, and that is often the great friends I've made here. I don't come on as often as I should but will try. I hope I can help and provide some inspiration. Godspeed, my friends. You'll beat the **** out of this!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #12
    vdm13 said:

    Stay Positive!!!

    Karen,

    Tell Mikey to stay the course. Any questions on Sutent, feel free to post or send me a message. I don't have all the answers, but I can tell you what I've done.

    I remember this: The first cycle is a bear. The second one is better. The thrid better still. And not better in the sense that the side effects are less, in fact they are probably more, or at least cumulative. BUT, as cycles pass you begin to recognize them and take steps in afvance to combat them. Neil (see post above) has some great data around this and can make recommendations as well. The people on this board are front line warriors, and we're all in it together.

    I can't stress the value of Gerard White's MAARS program (http://cancerwarsmaarsjourney.com/). Buy it for Mikey. Both the book and the CD. Many on this board use it. Gerry was given 3 months to live 20 years ago. Consider that it is scientifically proven that no cancer can win a head to head battle with the human immune system, and believe it!

    I could go on for an hour on this topic, but will trust that you will buy the book and CD.

    Finally, above all else, maintain a positive outlook. Nothing says we have to die from this, and we're all capable of beating it or, with the proper battle plan, lasting long enough to be cured. That's why we're here and supporting each other. It can be done. We can win.

    OK. One more thing. I hope and pray for Mikey that he has the same kind of results that I've been having. It makes you look in the mirror and see a strong person, capable of all things and unbeatable by any disease. He has to get a bit of an attitude and be willing to say F CANCER!!!

    All the best,

    Vin

    PS - Tell Mikey to start using Eucerin Cream, the one in the tub, right away on his hands and feet. It's greasy and sticky, but it works against hand and foot issues so common with Sutent. Morning and night. Bag Balm is another option, but I've had better results with Eucerin. I also mix in some less greasy, more therapuetic creams and lotions from time time, but the core for this side effect is Eucerin cream. Also, make sure he rests when needed. Sutent causes some serious fatigue. Hopefully his employer is as understanding as mine and will allow some flexability. I also suggest building a team of loved ones, friends and family, and tell them what your doing to fight the fight. The socialization keeps me strong and I know who I can turn to when the going gets tough, and that is often the great friends I've made here. I don't come on as often as I should but will try. I hope I can help and provide some inspiration. Godspeed, my friends. You'll beat the **** out of this!

    Stay positive

    Great post, Vin - all good stuff - keep on like this and Fox will pick you for his team!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #13
    Texas_wedge said:

    Stay positive

    Great post, Vin - all good stuff - keep on like this and Fox will pick you for his team!

    Feels good

    Doesn't it Vin? Let's just say that someone has only a poor prognosis. Why spend it depressed? Get out and LIVE! What if it were a year? 10 years? Get out and LIVE!!!! You've got the right attitude. Good for you!

  • vdm13
    vdm13 Member Posts: 47
    #14
    foxhd said:

    Feels good

    Doesn't it Vin? Let's just say that someone has only a poor prognosis. Why spend it depressed? Get out and LIVE! What if it were a year? 10 years? Get out and LIVE!!!! You've got the right attitude. Good for you!

    It Does!

    Fox,

    Would love to give a long winded reply, but I'm thinking of popping the top off my Jeep and taking a run down to the beach. Actually heading to a friend's house for a BBQ, but I still may pop the top on the Jeep to get there!

    LIVE indeed!

    All the best!

    Vin

  • GSRon
    GSRon Member Posts: 1,303 Member
    #15
    vdm13 said:

    It Does!

    Fox,

    Would love to give a long winded reply, but I'm thinking of popping the top off my Jeep and taking a run down to the beach. Actually heading to a friend's house for a BBQ, but I still may pop the top on the Jeep to get there!

    LIVE indeed!

    All the best!

    Vin

    WOW..!!

    That is all I can say... WOW..!!!  Thanks for your posts... they do bring hope and smiles..  :)

    Ron

  • angec
    angec Member Posts: 924 Member
    #16
    Vin, so loving your post!

    Vin, so loving your post!  Mom deals with Dr. Motzer when she needs advice along with her local Onc here in Brooklyn.  So glad to hear how positive they are at Sloans it is so worth the time to go there! Mom is on Votrient now and her last scans showed shrinkage which we were happy for. Along with mets that have resolved.  All great news!! Keep up the positives and watch out birds with the top down!  ;)

     

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