Mission Beach Cafe prefix dinner for Team Scott

Next Monday, March 7th Mission Beach Cafe has been kind enough to open up their doors for a 4 course prefix meal where 25% of the proceeds go to the Team Scott fund.

The team at MBC has been amazing in helping me keep my weight up as they are only a block away and serve so many mouth watering choices. Plus all the people that work there have been so helpful in making sure I'm comfortable when I hobble down the hill to visit them.

I blasted out an email to many people today with all the details but it is pretty simple

date: Monday march 7th

time: 5:30-10 they serve

price: 65$

reservations: opentable or call (mention team scott)

info: http://www.missionbeachcafesf.com/

Hope to see you there! Spread the word

UPDATE:

You guys are great! Word is that the place looks like it will be packed :-)

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.

Following up with the eye doc

Currently going through lots of tests to image the eyes. I'll post when results they come back.

update:

Well my left eye has 3 tumors in it. One is causing most of the fluid to build up behind the retina. The laser topography shows a pretty large amount of fluid the is the culprit of the distortion.

The plan is to due laser surgery on Tuesday to burn the 3 tumors. This will hopefully stop the main tumor from creating as much havoc. By burning these tumors that are off to the peripheral vision I will loose these areas of vision forever but in the process try to save the main central focus area.

It seems a bit hard to imagine that by burning the tumor it will help dissipate the fluid build up but this is the first choice the doctor gave. There are options of doing radiation to the entire eye or a more complicated procedure where they can focus radiation to hit the tumor more directly.

The current state of my vision is no better, with the right eye closed I am unable to even identify someones face.

Post surgery I wont know for a few weeks even if it has worked, because I have to wait for the eye to naturally drain.

Going mobile

Trying out mobile blogging. Hope this will increase the frequency of posts for you guys. Though they may be shorter at least you will get some more pictures uploaded too

So for tonight I give you the handy work of the ER nurse from yesterday's needle hack

has it traveled to the eye(s)

Really wish I had a happy blog written up about my trip to Hawaii last week but while there I noticed in the corner of my vision a sort of halo. Like one you see after someone shines a bright light at you and you can still see it after you blink. I tried to ignore it, I was on vacation and all, but it did not go away. I was just in my left eye and off to the side.

3 possibilities I could think of, and each did not warrant panicking over (at least while on vacation) :

• laser exposure- yah so I own a laser that is way to powerful. Maybe while playing with it I exposed my eye to it indirectly. In that case, not much I can do, might as well count it as a really stupid purchase
• tumors traveled to the brain- no headaches, and it was only in 1 eye, I don't know how the brain separates left from right in the visual cortex but still I would not be surprised if the tumors have moved to the brain. To be completely honest, out of any of my organs to be my ultimate demise I would think the brain would be preferable...
• tumors on the ocular nerve- did not expect RCC to go for the eyes...hell did not know cancer could do stuff like that.

The next day after we landed home from Hawaii I emailed Dr Amy Lin. In 10 minutes my phone rang with nurse Corry saying to immediately go to the ER... after a few minutes I pulled myself together and packed a bag for what I knew was going to be a long day.

8 hours later (most of that wasted in our mess of a medical system called the emergency room) I was seen by a optometrist and went through over an hour of tests. The most startling one was him simply showing me this picture

I was surprised by just how big my 'hole' in the vision was. It is sort of hard to explain but in essence everything in the top left quadrant looked like this

The doctor informed me that he could see what apears to be tumors in both of the eyes... but more tests need to be done to confirm and the machines to do the tests are 'locked up' for the weekend' and the next time I can be seen is in the clinic in 7 days. "but don't worry I don't think it will get any worse in that time"

Doctor's really piss me off sometimes. Tell me my cancer has moved from my kidney all the way into my eyes. Now push off a 10 minute test to give conclusive results for 7 days and follow up by saying "but these tumors don't explain why you have a hole in your vision" .... gag

The spot in my vision slowly shifted over the last week into my direct line of sight of the left eye. My left eye is my stronger eye too.

Doing some research now found this http://en.wikipedia.org/wiki/Macular_degeneration seems very similar to what I'm experiencing, and from what I understand it could be related to Sutent blocking blood vessel signaling pathways for regeneration. But it's not listed as a side effect... Want to place a bet this is it?

So I sit here now, left eye can't see the screen for shit. Doing research on my eyes and on clinical trials for all sorts of new drugs. Weighing the risks of clinical trials, quality of life, chances any of these are going to prove to be a miracle for me. Or should I just stay with the Sutent?

A Quick Look Back

It has been almost 2 months now since I have been diagnosed. If I was not dumbfounded enough in the first place, looking back, this is not what I expected after hearing the dreaded line "you have cancer"

I'm currently sitting in my own comfortable bed, surrounded by junk food, letters of well wishes, birthday gifts, balloons, and Rachel sleeping peacefully. I have very low pain today and with each passing day of physical therapy my back is feeling stronger. I'm still walking with a cane, mostly for stability, but I think I'm looking a bit more rosey in the cheeks.

At this point I figured that I would be down 1 kidney and hooked up to IV chemotherapy every day. I thought I would have no hair on my head and feel like death. It feels odd, almost wrong, to feel so comfortable at this point and know that inside my body I still have a very life threatening disease that won't stop on it's own.

So that brings me to the chemotherapy drug that I am using, Sutent

Renal cell carcinoma
Sunitinib is approved for treatment of metastatic RCC. Other therapeutic options in this setting are sorafenib (Nexavar), temsirolimus (Torisel), interleukin-2 (Proleukin), everolimus (Affinitor), and bevacizumab (Avastin).
RCC is generally resistant to chemotherapy or radiation. Prior to RTKs, metastatic disease could only be treated with the cytokines interferon alpha (IFNα) or Interleukin 2 (IL-2). However, these agents demonstrated low rates of efficacy (5%-20%).
In a phase 3 study, median progression-free survival was significantly longer in the sunitinib group (11 months) than in the interferon alfa group (5 months), hazard ratio 0.42.[8][7] In the secondary endpoints, 28% of had significant tumor shrinkage with sunitinib compared to 5% with IFNα. Patients receiving sunitinib had a better quality of life than IFNα.
Based on these results, lead investigator Dr. Robert Motzer announced at ASCO 2006 that “Sunitinib is the new reference standard for the first-line treatment of mRCC.”

This drug works by interfering with the messaging of blood vessels to reproduce. By blocking this the tumors cannot form as easily and in some cases will shrink. This drug is simply a pill and so far the side effects have been manageable. My hands, feet, and tongue are all a bit sensitive. My facial hair is lighter. I get exhausted faster and sleep a bit more. The quality of life (as mentioned above vs other treatments) is significantly better. The doctors keep a close eye on my bloodwork and at last report I seem to be stabilizing well. I have just a few more days left of this 4 week cycle of Sutent then I get a 2 week break before my second cycle. Most research shows the second cycle of the drug is when the shrinkage of tumors can occur. But preliminary MRI scans show no significant growth of tumors since I started Sutent and Radiation!

got a little xmas treat coming

Working on captions for all of the pics that Rachel has been taking. Should have them finished by tonight. For now check out the slideshow on the right to link to the album.