no go on clinical trials, whats next?

Right off the bat when I was diagnosed and I started to talk treatment with my urologist oncologist, clinical trials were presented as a viable option. If you are told this, it means they don't have any treatments that are known to work well for your condition.

Renal cell carcinoma is both radiation and chemotherapy resistant. By the books the only durable response (they don't use the word cure) is immunotherapy, high dose interleukin 2. If you read up on it essentially they are destroying your immune system by making your body think it is responding too rapidly. This means the ultimate flu symptoms and they put this stuff into your veins for 5 days straight. Pretty scary stuff and after a year of treatment like this, with my condition, you got about a 10-15% chance of extending life by 5 years.

Well I did not much like the thought of being in constant pain for the next year for that slim of a chance of living so we chose Sutent, surgery, and radiation therapy to keep the tumors at bay to start. This has been working pretty well but things are not getting better. Clinical trials were the next step.

Cancer.gov hosts a list of all the clinical trials going on in the united states and is a great, easily searchable, database. My doctor found some in Boston at Beth Israel medical center that were using combinations of VEGF/MET and MET/ALK inhibitors. With my TFE staining of the biopsy indicating XP11 the part I am looking for is the CMET inhibitor. The two drugs are named MGCD256 and Crizotinib. (Crizotinib is showing some amazing results in lung cancer patients)

To qualify for these studies though you need to be stable and off treatments for 2 weeks prior to starting. So at the end of my last Sutent cycle (4 weeks on 2 weeks off) we started making plans for me to go out to Boston to see if I qualify for these phase I studies. This includes a physical exam, blood work and lots of signing your life away.

5 days off Sutent though and things started to get bad. My back was in constant pain. I could feel many of the tumors growing day by day. The ones at the base of my skull would scrape when I yawned or moved my neck. My spine (especially lumbar) was completely flared up and every muscle attached to my back was screaming in pain.

Like any 25 year old male I tried to tough it out. But it was not long before having to call 911 for transport to the hospital. I could not move at this point and the though of going down 2 flights of stairs was just impossible. Some nice burly men came by and threw me in to the ambulance. They asked what pain killers I was on and they promptly responded with "well we don't have anything close to that strong" and off I went to the ER

Called up my doctor and she agreed that being off Sutent for 2 weeks is not a viable option and suggested I start it back up again and we can try constant dosing (no 2 week breaks because my blood counts look solid) and that we will look into 'traditional' chemotherapy approaches (even though RCC is very resistant to this approach sometimes it works)

I ended up being admitted to the Mount Zion cancer facility for 5 days for pain control. They did a single large blast of radiation to my entire lumbar area and then informed me that the L5 vertebra is at it's maximum for radiation and will not be able to receive any more treatment. From scans of the L5 it does not look very good either but reconstructive surgery is out of the question while on any chemo treatments (including Sutent) for the slow healing because of decreased blood counts.

I'm a rebel and don't need them silly gowns:

(items pictured : nintendo dsi-xl, eye patch, vagisoft blanket)

Pain control, as simple as pressing the green button:

hydromorphine

While in the hospital my femur started to give me troubles. Walking to the bathroom one morning heard a bit a of a snap. Previous bone scans indicated lytic lesions and cancer growing into the bone. I was convinced I had fractured it. I could not stand, nor walk without assistance.

We did some xray imaging to get a closer view (bone scans do not do well detecting these destructive tumor types) and they showed that yes my femur was still there and not fractured. So currently I'm on my 3rd day of radiation to the femur. They have a pretty sweet setup over there:

mount zion radiation blaster

So the question is: Whats next?

Well plan is to once again remove me from Sutent in preparation for chemotherapy at UCSF. The two drugs they are planning on using are

http://www.chemocare.com/bio/adriamycin.asp

http://www.chemocare.com/bio/gemcitabine.asp

they are by no means a walk in the park. I will not be the cheerful smiley Scott while these poisons rock though my body. But were hoping they will shrink these tumors!

While in the hospital they installed a PICC line in so these drugs can be administered right to the main blood highway. I flush it at home each day with saline and heparin to make sure it does not clot and get the dressing changed once a week.

Today I'm off to radiation, then piling the parental units into Rachel's car for a trip to southbay where we will meet her dad for lunch, a second opinion with doctors at Stanford, and possibly a stop off at Microsoft to see many of the Team Scott supporters.