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Treatment Update: Good read for new members and those on Sutent

vdm13
vdm13 Member Posts: 47
edited June 2015 in Kidney Cancer #1

Hello, friends.

I am compelled again to start off my post with an apology for not participating more often on these boards, but as always I welcome emails through my profile, which will forward to my work email, one I am on all the time. Happy to answer any questions or help in any way possible.

I like to start with a recap of my initial diagnosis and front line treatment. I was diagnosed in April, 2012, following passing out in my kitchen. A series of test led to a diagnosis of Stage 4 / Grade IV Advanced Renal Cell Carcinoma, Clear Cell with Sarcomatoid Features. An 8-10 cm mass in my left kidney had spread to my left adrenal gland, right kidney, right adrenal gland, spine around C3, spleen, multiple lymph nodes and both lungs, which were classified as having "innumerable" lesions. Additionally, the primary mass burst out of the Gerota's Fascia and wrapped itself around my Vena Cava. All in all, a pretty dire situation. Median survival: 8 months.

I was treated at Memorial Sloan Kettering in New York City. Had a radical nephrectomy of the left kidney and surrounding parts on May 25, 2012, which included removal of the adrenal gland and 16 lymph nodes as well as a slice of my spleen. I started on Sutent about six weeks after the surgery and had a good scan at three months and a great scan at six months, where we saw substantial reduction of the lung lesions and saw the 4-5 cm mass in my right kidney disappear from the scan. Subsequent scans showed continued progress and I was classified as in remission about a year ago. My November 2014 scan was interpreted by my Oncologist as "about as close to normal as you can expect". I was also removed from the study I was in a MSK and classified as an "outlier" as my results were typical in about 5% of patients on Sutent.

Just when you thought it couldn't get better . . . 

Last week I went for my 6 month (and three year) scans. Truth be told I was not feeling confident going into the tubes (CAT and MRI) as I had some back pain and general aches and pains. But the results speak for themselves.

My oncologist this time commented that if he were looking at my scans and lab results for the first time, he would be hard pressed to diagnose me with anything. My blood work was spot on, right down the middle of each ideal range, and my scans showed no changes since the last one. Right kidney was characterized as "Normal". Right adrenal was noted as having some thickening of the wall where the "prior metastases" had been, but was otherwise "clear". My lungs were classified as "Normal", save two grain-of-sand sized specks they have been watching for three years. My doc said they were more than likely blood vessels and not cancer. The mass along my spine has reduced to what my doc said was probably scar tissue. All up, the CAT was unchanged and the MRI classified as "Normal". I was re-classified yet again, this time as an "Extreme Responder", one of only a few at MSK, and a designation reserved for those whose response falls into the less than 1% category.

Of note is that going into my surgery I began using guided imagery techniques and pictured my immune system attacking the cancer. My surgeon commented after the surgery that he had "never witnessed" such active white blood cells inside Gerota's Fascia. That's saying something when all you do all day is remove kidneys at Sloan Kettering, and being the former director of renal cancers at NHI. Later in my treatment, I started using Gerald White's MAARS program at the recommendation of several folks on this board, and believe firmly that these efforts have worked wonders, and regardless of what science says about mRCC, I have decided to classify myself as cured.

I asked my Oncologist, considering all of this evidence - the normal scans, the white blood cell activity, the less than 1% - if it was possible that I was clinically "cured", and was shocked when my very conservative doctor relied with "Maybe". He added the caveat, however, that we "just don't know" as there is no way for them to definitively determine if there is any cancer left in me. He hypothesized that the perhaps the Sutent "kicked the **** out of the cancer and your immune system finished it off". 

Finally, and perhaps most important, is that he laid out an end game. He asked that I stay on my full 50mg Sutent dosage. He is expecting that one of the current immunology treatments in final FDA trials would be approved within 12 months, and at that time we will back off on the Sutent dosage to see if there is any disease progression. (They need to see progression before putting you on a new treatment.) If needed, we will move to no Sutent and wait and see. If there is evidence of disease progression, we move to the Immunology treatment, which is producing long term complete remissions in many patients. If there is no progression, we watch, and perhaps one day declare me cancer free. That's the stuff of medical journals, folks.

My apologies for the lengthy post, but I hope that many of the folks on this board will find inspiration in my story. The message behind all of this is one you've heard before: The median is not the message. 8 months my ****! Happy 3 year survivor to me! Second, you may have cancer, but do not allow it to have you. Breathe deeply, live fully and move forward at all times. We are at a critical junction in cancer treatment, especially in Kidney cancer. Set your sights on that and drive towards it. Finally, when faced with this disease, you have to make a choice. Will you die, or will you live. I chose to live. And I am still here. And even if I am wrong, I will have gone down with confidence and strength. 

 

Live!!!

Comments

  • Allochka
    Allochka Member Posts: 974
    Congratulations onbeing NED

    Congratulations onbeing NED and thank you for posting this. Very inspirational, I wish all people with Stage 4 could get these awesome results!

  • a_oaklee
    a_oaklee Member Posts: 566
    Congratulations.  Very nice

    Congratulations.  Very nice of you to share your story.  Stay well.

  • Footstomper
    Footstomper Member Posts: 1,237
    a_oaklee said:

    Congratulations.  Very nice

    Congratulations.  Very nice of you to share your story.  Stay well.

    Hope

    Is sometimes a commodity in short supply. Thanks for sharing yours.

  • Jojo61
    Jojo61 Member Posts: 1,309

    Hope

    Is sometimes a commodity in short supply. Thanks for sharing yours.

    Thank you for sharing your

    Thank you for sharing your remarkable story! It is very ispirational and great to know that sutent can produce such great results!

    Hugs

    Jojo

  • That was an awesome story. 

    That was an awesome story.  Congratulations.  My urologist-oncologist at MSKCC is Dr. Russo.  Who is yours?  Dr. Russo is the man!

  • Nana4life
    Nana4life Member Posts: 78
    Thank you

    Thank you! I am just beginning this journey and your story inspires me and gives me hope. Thank you, thank you, thank you!

  • foxhd
    foxhd Member Posts: 3,181
    Nana4life said:

    Thank you

    Thank you! I am just beginning this journey and your story inspires me and gives me hope. Thank you, thank you, thank you!

    happy 3 years

    That's the way to do it! Great news. Good for you!

  • donna_lee
    donna_lee Member Posts: 1,018
    foxhd said:

    happy 3 years

    That's the way to do it! Great news. Good for you!

    The correct body

    in the right place at the right time.  I'm happy for your results.

    Donna

  • jason.2835
    jason.2835 Member Posts: 337
    Wow...

    VDM,

    What else can one say but "Wow!"  What a situation to be in.  And then out of.  I cannot begin to imagine the emotional roller coaster.  It truly shows what a strange and unknown disease that cancer can be.  In some people's cancers, there is only one mutated gene that causes the tumor and it is easily fixed.  In others, there are multiple mutations.  It is the luck of nature, I suppose.  Your story is incredible.

    - Jay 

  • BDS
    BDS Member Posts: 172
    NED

     

    Congratulations. You are one very lucky soul. Now go play the lottery!Laughing

     

  • vdm13
    vdm13 Member Posts: 47

    That was an awesome story. 

    That was an awesome story.  Congratulations.  My urologist-oncologist at MSKCC is Dr. Russo.  Who is yours?  Dr. Russo is the man!

    MSKCC Doc

    Thank you, PM. I see Doctor Rosenberg. He, Russo, Motzer and a couple of others are on the same team. Motzer is a legend. I originally called Russo but was refered to Rosenberg. Very happy with him. He's a good guy and a great doctor. I've yet to come across anyone at MSK that hasn't impressed me, from the docs to security, they are all top notch.

    - Vin

  • vdm13
    vdm13 Member Posts: 47
    Nana4life said:

    Thank you

    Thank you! I am just beginning this journey and your story inspires me and gives me hope. Thank you, thank you, thank you!

    Hope

    Gerald White says that there is no such thing as false hope. It is just hope, and it is all good. Stay positive and focused on future perfect health!

    Vin

  • vdm13
    vdm13 Member Posts: 47

    Wow...

    VDM,

    What else can one say but "Wow!"  What a situation to be in.  And then out of.  I cannot begin to imagine the emotional roller coaster.  It truly shows what a strange and unknown disease that cancer can be.  In some people's cancers, there is only one mutated gene that causes the tumor and it is easily fixed.  In others, there are multiple mutations.  It is the luck of nature, I suppose.  Your story is incredible.

    - Jay 

    What a long strange trip its been

    Hey, Jay.

    "Wow" crosses my mind from time to time. It is a pretty good story, although I would rather not be the main character. That said, I feel blessed for having had these results, and while the battle rages on I finally feel like I have the upper hand and will be around long enough to actually be declared cured. 

    MSKCC also selected my removed parts to be included in a genome study. Not sure if I mentioned that. They found nothing in that study that should concern me or my children. I need to dig into that a little, to your point. I wonder what marker(s) they found for me.

    Anyway, thanks for the kind words.

    Vin

  • vdm13
    vdm13 Member Posts: 47
    BDS said:

    NED

     

    Congratulations. You are one very lucky soul. Now go play the lottery!Laughing

     

    Lost Lotto

    Thank you, BDS.

    I tried my hand at the lottery and lost. Again.

    I also took my luck to Vegas. That was pretty aweful as well.

    Then again, I'm here to play the lottery and go to Vegas (even if it was a business trip) so I guess I can't complain.

    Thanks,

    Vin

  • vdm13
    vdm13 Member Posts: 47
    foxhd said:

    happy 3 years

    That's the way to do it! Great news. Good for you!

    You inspired me

    Fox,

    I know I'm not on here as often as I should be, but I was in my darkest hours early on. You were an inspiration to me then and continue to be one today. It was you and a couple of others who introduced me to Gerald Whites MAARS program, if I recall. I thank you for that, your wisdom, your guidance and friendship.

    Keep fighting the good fight, my friend. We will prevail.

    Vin

  • vdm13
    vdm13 Member Posts: 47
    Jojo61 said:

    Thank you for sharing your

    Thank you for sharing your remarkable story! It is very ispirational and great to know that sutent can produce such great results!

    Hugs

    Jojo

    More than Sutent...

    Thanks, Jojo. I would argue that Sutent was one piece of the puzzle. The others are prayer, meditation, guided imagery, and hope. 

    Thank you for your kind words.

    Vin

  • vdm13
    vdm13 Member Posts: 47
    Thank you all

    Just wanted to say thank to everyone who took the time to post so many kind words. I haven't been declared NED officially, and the only people calling me cured are me, myself and I. And my wife. But I look at it this way: If I look like I'm cured and walk like I'm cured, I'm probably a duck.

    All the best!

    Vin

  • Galrim
    Galrim Member Posts: 307
    First of all...

    Congratulations with the extremely good progress you have made :-)

    And then some questions, which you maybe asked your docs and have an answer to, your post really made me curious:

    - Sutent and complete remission has so far been a kind of grey area, indications are that it is possible, but far from enough data to really support it. Did/do your docs mean that Sutent helped reduce the metastatic disease to a degree where your immune system could take over, and in reality what you have from there on is the very rare, but documented, spontaneous regression?

    - What immunotherapy to follow are you referring to in your post? I thought the standard approach was that immunotherapy in general has to come before the use of other systemic treatment, not after, to have any impact? 

    /G 

     

  • Bellweather
    Bellweather Member Posts: 102
    More Sutent positive news

    Congrat's,  nice hat!  While no ned here, I have been on sutent for 18 months following one run at HDIL2.  9mm lung nod reduced to 6mm at first then stable to small growth sinc

    e.  Numerous other 5mm nods no longer being measured, too small to note. Latest 6 mo chest, ab, bone scans show no additional metastasis.   50mg 1wk on 1 wk off.  

     

    Thanks for sharing your your story

  • vdm13
    vdm13 Member Posts: 47
    Galrim said:

    First of all...

    Congratulations with the extremely good progress you have made :-)

    And then some questions, which you maybe asked your docs and have an answer to, your post really made me curious:

    - Sutent and complete remission has so far been a kind of grey area, indications are that it is possible, but far from enough data to really support it. Did/do your docs mean that Sutent helped reduce the metastatic disease to a degree where your immune system could take over, and in reality what you have from there on is the very rare, but documented, spontaneous regression?

    - What immunotherapy to follow are you referring to in your post? I thought the standard approach was that immunotherapy in general has to come before the use of other systemic treatment, not after, to have any impact? 

    /G 

     

    Better late than never, I guess

    Hi, G. I hope you are doing well. Sorry for the delay in getting back, but life keeps getting in the way...

    On your first question, you're spot on. There is no evidence, according to my Oncologist, that Sutent is capable of sterilizing cancer, but it is possible that the Sutent compromised the RCC to the point that my immune system could take over. Notable here is that when they removed my kidney and other parts they found active white blood cells attacking the cancer, so my body seemed to know it was there and was working it. That supports the "spontaneous remission" theory, and my surgeon even mentioned it as a possibilty based on his observations during surgery.

    Regarding the immunology treatments, I have seen both first line, second line, and combo therapies studied. I would be guessing that what my doc is referring to is one of the many PD1 trials, some of which are being studied / trialed at Memorial Sloan Kettering, where I am being treated. My doc specifically referred to immunology treatments in conjuction with Sutent.

    Vin

  • marosa
    marosa Member Posts: 333

    More Sutent positive news

    Congrat's,  nice hat!  While no ned here, I have been on sutent for 18 months following one run at HDIL2.  9mm lung nod reduced to 6mm at first then stable to small growth sinc

    e.  Numerous other 5mm nods no longer being measured, too small to note. Latest 6 mo chest, ab, bone scans show no additional metastasis.   50mg 1wk on 1 wk off.  

     

    Thanks for sharing your your story

    Amazing story!

    What an amazing story!  Goes to show how important is it to keep a positive attitude!  So very happy for you.  As for me and for others here, an example and a lesson to follow. Be well!

  • cheatinlil
    cheatinlil Member Posts: 197
    marosa said:

    Amazing story!

    What an amazing story!  Goes to show how important is it to keep a positive attitude!  So very happy for you.  As for me and for others here, an example and a lesson to follow. Be well!

    vdm13

    Thanks for sharing your story VDM13.  It is encouraging. My husband is Stage 4 but has a very positive outlook on life.  I wonder if the guided imagery MAARS program would work for me, being the caregiver of a cancer patient.  LOL! It sounds funny now that I typed it but I"M SERIOUS!  Thanks for sharing.  We need good news around here.

  • Richgels1
    Richgels1 Member Posts: 26
    Great Story Great Attitude

    Thanks for sharing your story Vin. Hope it all continues for you. You have a great attitude about the whole thing and I like that. Folks ask me how I can be so upbeat about it all, I just say I don't have the need to be depressed about it. I was on Sutent for about a year also and had good results with it. I had three lymph nodes that were affected and the Sutent made them shrink and conglomirate into two masses instead of three. The hospital wasn't going to do a second surgery so I went for a second opinion at Mayo Clinic. They took them out and 15 other nodes surrounding the area. You know I was going for the cure also but it wasn't to be. I now have another affected node in my chest and am on Votrient. They told me the Votrient is a second line defense med. I'm stage IV but again am doing well. My last scan doc said he couldn't see any cancer at all. Living each day and doing all I can still and wont' ever stop. You are an inspiration to others. Don't stop. Thanks, Scott