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

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!!!