Shrinkage! (the good kind)

Hey all, so I have some good news. I just got my scan results back and I have had tumor shrinkage. Now if you remember I had thought that my cancer had no growth when I last wrote my blog. Apparently that wasn’t quite true, it had grown a good deal. I wasn’t actually told this however until just today. Anyway that growth has been undone, actually all the growth in the last 6 months has been undone and then some. My tumor is now 12.3% smaller than when I started the study in June. That means it is shrinking about as fast as it was originally growing when off the meds, and it was an aggressive cancer.  Now the likely cause of this sudden change is my increased dosage of sorafinib, that was the real difference these past 2 months. Also as I said before I was responding better on my half dose of sorafinib than the patients on the no sorafinib study, this is made dramatically more clear now as they apparently are not doing that well. And if you are wondering, with the way the FDA works no they will likely not be allowed to swap to my study. I was honestly a bit surprised they revised the protocol to let me try a higher dosage however so maybe they will. Also the side effects of the sorafinib are actually rather easy to cope with. They have a record of being very harsh, but I’m young and my kidneys and liver work well, even with the cancer, and I had time to adjust to a half dose, so my side effects are rather mild. There are some issues with nausea and general digestion, my face has an odd skin rash going on, my scalp, tongue, and heels often hurt, and my gums are susceptible to bleeding when brushing and the like. All in all it’s very minor, and honestly I like the side effects because side effects show you have reached a strong dosage. My system is clearly saturated.

Now in terms of future plans I should clarify we are not likely to rush off for surgery any time soon. I didn’t have time to discuss anything in this paragraph with a doctor yet, since we got the results after leaving buffalo, but here’s my thoughts. Firstly I am likely to bleed like crazy if I were to go under the knife with sorafinib in me, so they wont touch me outside an emergency for 1 month after stopping my meds. This means even if I could be operated on now we would want enough extra room to support a one month window of return tumor growth. Secondly my meds are currently kicking ass. I really don’t think that speed of shrinking was expected when it was recommended I later try surgery. Assuming there is not a decrease in speed as the tumor shrinks I could possibly kill it entirely in several months if that rate is maintained. And honestly with the way the meds work with less tumor I think the process may speed up, as less tumor means more medication to go around. I will still very likely need a kidney, and maybe some lymphnodes removed by the end of this but there is some small chance of my meds actually killing it all.  Cancers do evolve rather quickly so there’s no telling for sure, but hopefully a fast enough blitz with two agents will do a lot.

I also have been feeling better lately. I’ve just recently dropped my pain meds from 20mg to 10mg and I haven’t needed many vicodin at all. That is really making a difference on my mental state. The prominent example of which is that I have insomnia. All my life I had insomnia because I just can’t stop thinking and go to sleep. When on 20mg I go to sleep right away, now I am really getting behind on my sleep. It’s actually kind of nice to have the insomnia back; two nights ago I was up late thinking about how to redesign the penal system, and while I suspect I’m still a little impaired mentally it’s nice to be thinking the random thoughts again.  My appetite is doing well too, I’m not really gaining weight but I am also not vomiting or feeling nearly as bad by eating the same amount.

We also did a lot since I last updated the blog. Primarily we went to London, Dublin, and Amsterdam for a total of two weeks (I’ll be a bit brief since we did a lot). In London we went to the tower or London and I got to fire a midevil British version of a ballista (a giant crossbow). We checked out a few musicals (Stomp and Avenue Q). We went to a club, as that’s a very popular thing there and I have only gone to one before (and that was in Japan). And did various other touristy things like go to a pub, saw the rebuilt Globe theatre, went to big ben, and various other things. My main takeaway however is that I would die in London as the food, even like the Italian food, is all just terrible. I’ve always had rather keen tastebuds and upon combining that with my stomach problems I lost a few pounds there. Who the hell makes bitter pastries, and how is blackcurrant the most popular flavor of Gatorade? It just makes no sense to me, I had to go to the local supermarket to get food I could actually stomach.

Ireland was cool, we didn’t really do all that much there, but it’s the kind of place where I could feel at home living I think. We stayed a night there in a converted castle. We saw the book of the Kells. We went on a musical pub crawl. We also went to the guiness factory (reputed to have the perfect glass of guiness due to there being an issue with the tap needing to be specially built) and I had the only glass of beer I have ever found palatable (due to my tastebuds the only other alcohol I have found that I can drink without a lot of syrup in it is Tantakatan in Japan by the way). It was rather amazing actually that the beer from their special tap was totally drinkable but the beer from a normal tap in the same building was disgusting in my opinion.  They also had extremely good lamb stew. But yeah, in general Ireland was the best place along the trip.

As for Amsterdam the primary purpose of that was for me to get high, since its easy in Washington to get medical pot when you have cancer. I got high twice. Once from a brownie and once from a combination bong, joint, and piece of bread with an absurd amount of pot in it. I learned bongs and joints are definitely not my things, but I can do the food, and it really does kill all nausea. If I’m high I stop eating due to stomach pain from being too full, not nausea; but I actually don’t really like the experience. My eyes feel screwed up the whole time and I’m still lucid enough to tell that I’m not as in control as I like. I definitely have some mental changes, like I lose some of my germophobia, I actually smoked a joint that a random café owner rolled and licked closed for me- something I would never normally do as that’s just gross. I also don’t trust myself at all, I know that if I was given a task like “take your pills in two minutes” my attention would break before the deadline and I’d never get the task done. As such I mostly sat in bed reading and eating while high. I did make sure however that my full last day there I didn’t get high so  I could see the city. I very nearly literally saw it all. I walked across the whole thing. It’s tiny. Among the highlights however I saw a cool church, an awesome rebuilt cargo ship from the days of pirates, and went to a carnival and won lots of prizes for Lizzy. The red light district wasn’t as cool as was hoped for, also apparently it’s going to be changed in a year or so to just be a normal shopping area. Also as a side note the Amsterdam equivalent to a donut is delicious.

Oh and as a wonderful souviner we all got sick a few days before our trip ended, and I mean all of us, even the baby. The baby was pretty bad off, needing an inhaler and the like for about a week after we returned, but she’s fine now. I took a long time to recover myself and it carried a nasty stomach bit that virtually stopped my eating for a couple days. I lost like seven pounds in a week, but luckily have mostly regained the weight. That’s about it. Attached is a graph of my cancer growth/shrinkage.

Super Good News

Alright, new scan results time! So I just saw the Doctor yesterday and am working from information that isn’t exactly precise (he only had a short period to view my scan before I left, so a complete analysis is still pending) but the results so far are awesome. To paraphrase the doctor: “Being conservative I think that the there was no growth on average, being optimistic I think there may have even been a slight overall reduction. The primary tumor has grown but several metastases have shrunk.” This is awesome news not just because reduction and shrinkage are great, but it means I probably won’t go off study any time soon. So long as I stay under 20% growth I stay on the study. I now know in the first 2 months it grew to 8%, I was worried I’d be at like 16% now  (and then probably be kicked off the study in another 2 months) but since I’m still at like 8% there’s a good chance I could be on these drugs for a very long time.

Here’s some more great news: I have convinced my doctors to try altering their study protocol for me. They have contacted Arqule, who have awesomely agreed to let me increase my sorafinib dosage, now all they have to do is get the Institutional Review Board to allow it. The board meets on Thursday, and I think they will allow the request since I asked for the increase, the drug has not had bad side effects at its current dosage, and I’m actually doing well right now. I also have some reason to believe sorafinib may be majorly impacting my improvement. If you remember from my old posts I had a very tough decision between my current study and another study where patients took only ARQ197. Well the doctor running the other study told me he had a patient reach the 20% mark in like the first 2 month period – this certainly makes me glad I chose the study I did. Now that’s only anecdotal evidence since everyone handles treatment differently and 1 person isn’t enough to establish a trend, but a person at Arqule also told me that the reason my version of the study even exists is because sorafinib has been shown in rats to increase the effectiveness of ARQ197. So it does seem like if I increase the dosage of my sorafinib I will very possibly see real shrinkage next time. Also I would like to clarify one thing about my tumors. Now the doctors haven’t talked to me about this issue precisely yet but I very much do expect the primary tumor to continue to grow; it is how the others react that I care about. You see, the primary is on my kidney, and the kidney receives so much blood flow I really don’t see sorafinib’s ability to reduce blood flow as strong enough to have much effect. If the other tumors shrink however, then we can just cut the damn kidney out, so really if the main tumor grows but the rest shrink I think I’m on the right path.

Now besides the scan I have one final piece of good news: I gained 2 pounds. It’s not much, but we have been traveling a lot and I have been a lot more physically active so I was expecting to lose weight but it seems somehow that those things don’t matter. This is especially good because we had been hoping to try a trip to Europe since I have never gone there and we wanted to go while my health is still good and while I’m on a drug which doesn’t leave me too incapable of travel. My recent trips to Arizona and Hawaii were basically tests of my ability to travel without making myself worse. Since I seem to have passed we’re going to London, Dublin, and Amsterdam for two weeks very soon. Actually we’re going way sooner than I would expect but Pedro just found a better job and wants to use his 2 weeks vacation at his old job before he finishes up there. Oh as other news due to Pedro’s new job we will be moving a little bit. Katie and Pedro want to cut down on their commutes because they both will be very busy shortly and want to be more able to spend time with the baby. Katie also doesn’t like the idea of having an hour commute just incase something happened to me one day where she needed to rush back home. Anyway, I’ll talk about Europe and moving later. For now I’ll describe my trips to AZ and Hawaii a little.

So I visited Tempe for about 5 days around 2 weeks ago and I got a lot of stuff done. I had meetings with some of my professors to talk about what I should be doing right now. I’m still enrolled, it’s all research hours, but I had to do it or I’d lose my medical coverage (I’m rather terrible right now about getting things done however, my memory for things I’m supposed to accomplish is shot and my time has been largely dominated by travel). I also attended a few classes, hung out on campus, went to a club meeting, and had a cool little party so that I could make sure to see people I might not otherwise see for a long while. I went on a date one night with a girl down there who I’d been trying to ask out for a while. I got everything I was feeling like I’d been missing out of storage. And I also just hung out, went to my favorite restaurants, hit the water park attached to the hotel down there, and generally did other things I rather enjoy. In general it was a very fun trip.

I went to Hawaii for a week and just got back like 2 days ago, which has been spent entirely on my very short trip to buffalo. A large amount of my time in Hawaii, the big island by the way, was just hanging out at the hotel (it’s a large complex) by the pools or at restaurants and the like. I also do have somewhat decreased energy levels so despite getting my full 8 hours of sleep I spent a lot of time napping, or just resting to prevent nausea. I have a few major highlights however that I feel like writing about with some level of depth. The first is that we went snorkeling with dolphins. We weren’t allowed to touch them since we carry land based pathogens they apparently aren’t used to, but we got snorkels on and jumped off a boat at various locations to go swimming with a bunch of wild ones, the pod was probably around 50ish dolphins including a few babies. It was very cool and we did it for something like 5 hours before we came in. They were often close enough that I could have touched them if I had been allowed, and it was cool to swim with them for a while. They are rather fast however so besides one time where they kept circling in a rest area we mostly had only short times with them. The only bad side happened to be that all of us had our sunscreen wash off and we all got rather burned, and my meds slowed my healing a bit. The next day we visited one of those much more touristy dolphin swim attractions at our hotel. I wanted to touch a dolphin so that was a good opportunity to pet one. Also awesomely since we mentioned I had some health issues they actually requested I have someone accompany me for free, so Katie got a free chance to pet them too. I also went jet-skiing with Pedro and we saw dolphins there. They got extremely close, like within 20 feet; surprisingly the engines didn’t freak them out. The other thing I really want to mention is that Katie and I went on a helicopter ride that basically covered the entire island and went over some vents, a lava field, and other notable features. The pilot was rather cool and had a lot to say about the island; he also had a very disturbing habit of putting the control stick between his knees to steer because he wanted to use his hands for gestures. But it was a cool experience, it freaked me out a few times when it shook a little or inertia caught me by surprise, but it was mostly cool. Anyway, that’s all I’m going to say for now. Here are some pictures however; they’re all from the helicopter. Katie has ones from other locations on her cameras but I lack access to those and want to post this tonight, so those will come in time.

No real change

Hey everybody. I’d been putting off an update until I got some more clear results, but my doctor has been slow and some people have been requesting an update so I figure I’ll add a bit. So I flew to Buffalo a week ago and got a new scan. The results of which were basically the same as before, the cancer is stable. Specifically some of it grew, some shrunk, but on average it’s just a bit bigger. So I’m on my pills for another 7 weeks before I get a new scan. I want to find out if it changed between scans, but the doctor gave me an incomplete copy of the scans in Buffalo and hasn’t been responding to requests for new copies.

Lets see, besides that I have lost some weight. I have some minor wound healing problems; the drugs are probably a part of it. Basically my internal sutures are taking longer than normal to break down and are causing some minor pus filled pockets along my wound (in other words it gave me the equivalent of acne there). Not really much to worry about, but my doctor gave me an antibiotic in Buffalo because she was worried. I think it might have caused some kind of cancer growth, disrupted of my cancer medications, or just caused something like kidney inflammation. Something definitely felt wrong on the meds and I had to have my surgeon look at the scar anyway, so I got him to allow me to stop the meds at the minimum full dose.

Anyway my only other real issue (as always) is weight. I have eaten pretty badly since we went to Buffalo so I’ve lost approximately two more pounds. On the plus side I may be finally getting my stomach back on track, and I found out that ramen is amazingly good for calories; it is so easy to eat and a block of instant ramen is like 380 calories, that’s like 1/5th my daily intake needs. Hopefully I’ll stop losing and gain some weight back.

Oh, and I think I will likely head back down to AZ for a few days soon. We’re thinking late in the week of 7th in September, possibly looping around to early the next week. I’ll hopefully get a chance to see lots of people. And there is some chance that Greg and Pam may be able to throw a party to try giving me a good venue to see lots of the people down there. We’re still working on scheduling and figuring out what I’ll be doing down there right now however so we’re not totally sure of any details.

Also I should mention I went to Toronto with Greg and Pam as part of my last trip to Buffalo. I’m not really going to describe it much, but I will say that the Canadian side of Niagara Falls is way better than the American side. I also did decently well health-wise while traveling. My primary problem would probably be that United keeps forgetting to grab me a wheelchair in the airports; I can’t stand still in a line very long, and Chicago’s airport is huge so I do need a wheelchair there when I transfer. I’ll be traveling again, to Hawaii, for Katie’s birthday before long too. Oh and also I’d been on a crappy mattress up here until recently so we got me one of those cool adjustable, vibrating beds that are always advertised for old people on TV and put a nice foam mattress on it. I must say it’s rather cool. That’s about all I’ve got.

Jeff.

Holding Steady

I have been getting a lot of requests for updates recently. I didn’t really have any news to report however; the doctors in Buffalo who are running my study only check my blood to make sure I don’t suffer bad side effects of the drugs. They did not want me getting scanned until 8 weeks on the drug, since if you get scanned before then and the cancer has grown a moderate amount they have to pull you off of it for legal reasons, even if the drug may have just not had enough time to take full effect. As such, the official stance is that I did not go in for a CT scan yesterday at my local doctor’s office. This would mean that we technically don’t know my cancer has stabilized.

Now I should clarify what stabilization entails. Technically it just means that since beginning the study the cancer is somewhere between 50% and 120% its original size. For me it specifically means that it’s something like 101% to 105% the size it was five weeks ago. Now we should remember that before starting the drugs my cancer seemed to be growing at a rate of around 20% over 3 weeks (so after a 5 week period we would have expected well over 120% its original size if the drugs were not working). More importantly there was a week of time before the drugs were in my system at all, and another week or two before they were fully in effect in my body during that 5 week period; during that period of time my cancer likely grew a decent amount. The fact we have not seen a large increase probably means that it did grow, but shrunk a little again by the time we measured it. Hopefully that’s the case, because that would mean I will likely have my cancer actually be under 100% its starting size by the next time we measure it (in 4 weeks). There’re no guarantees of course, there’s always the chance that the cancer will evolve an immunity to my drugs, but it seems like I have good odds of actually getting better for now; and if nothing else I am currently not getting worse.

Anyway, I’m actually feeling rather good recently. That however is probably not due to the cancer meds so much as better pain meds. I’m on oxycodone (Percocet minus the Tylenol) as a long term pain killer, it was doing pretty well but a couple weeks ago I asked them to increase the dose just a little; they doubled it. I guess 10mg twice a day must be a low amount and so 20mg twice a day must have been the next interval or something because I told them I didn’t think I needed double and they did not care. On the plus side however I don’t think it affects me very much mentally (I think I notice it just a little, but not much). Anyway, I’m in like no pain so I guess it’s a good level of meds. All I really have to deal with is eating issues. I’m really not eating that much, but my weight is getting closer to stabilizing (right now I’m 126 pounds) so I just need to make sure I’m eating as much as I can; and I am basically eating all the time when my stomach allows it.

We also now have Katie’s new baby here. She’s 2 weeks old today and she is HUGE. She was born at 9lbs 4oz and was so big they had to resort to a c-section. She sleeps pretty well for being so young, she eats all the time, and she doesn’t cry that much. In fact due to a combination of her cry being kind of soft and low pitch and my med dose I haven’t even been woken up by her yet despite my room being right next to their bedroom. I also wanted to mention something I find astounding. She seems to have inherited Pedro’s tendency to sneeze three times in a row whenever she sneezes. I have no idea why that might be genetically inheritable, but somehow it seems to have happened. Anyway she’s a cute little baby.

Lizzy’s first family photo

I bought her a Hippo hat

Two weeks in

Two weeks down on my trial. No real results will be in for another two weeks as to how the cancer is doing. What I do know is that side effects of the drugs seem controlled, I haven’t had drops in red or white blood cells or odd heart and blood pressure problems (these are the big bad side effects). All I’ve had to deal with are an annoying itch on my hands and feet. The cancer in my stomach doesn’t feel any bigger, but it’s hard for me to tell by this point. One of my neck’s lymph nodes seems bigger, but not as hard as the neck one they removed, so that makes me hope that if it is growing it’s doing so less effectively. I have also had some eating problems resulting in virtually no food intake for the last four days and a loss of something like 5 pounds since last week, but those are basically more due to my meds than my cancer. I was actually doing well the prior week, I gained a pound then. Not that much else is really up with the cancer.

I also thought I should mention Katie’s baby is now past due, so very shortly I will be getting a new niece (and for those of you who don’t know, I’m living with her so things are about to get a bit hectic).

Lastly I got this awesome little comic from Randall Munroe, the author of the XKCD comic, and I thought I would share it.

XKCD Comic made for me

Let the trial commence

OK, so I had a really difficult decision to make the other day. I came REALLY close to getting my desired drug combo; I had gotten to the point where I could progress no further and I had to leave things up to my doctor, but then he hit a wall with the FDA and the drug company backed out from my idea. Anyway I was left deciding between starting ARQ197 immediately or waiting a week for ARQ197 and Sorafinib. This was a particularly hard choice since I wasn’t sure Sorafinib will do anything for my type of cancer, it would mean I won’t work with Dr. Geller directly (he’s the world’s premier specialist for my type of cancer), there’s some chance that on Sorafinib I’ll be more at risk for problems if I need emergency surgery, there was some worry I’d travel to Buffalo for the drug combo but not be allowed to do the study, and my life span is currently is estimated (in a very guess based manner) as somewhere around 2-6 months (so any wasted time really matters). Luckily Katie is amazing, she managed to get them to move the start date for the drug combo to one day later than the start date for ARQ197 alone, and she got it verified that I was almost guaranteed in. At that point the possible benefits of the Sorafinib, and my own desire to try a drug cocktail rather than a single treatment at a time, made it an easy decision for me. The decision that had been majorly stressing me out was basically entirely resolved for me at that point.

So I am now the first person on earth to take this drug combo as I understand it. Also oddly enough the reason they wouldn’t let me do my desired drug combo is because they didn’t want me to be the first person to do it. This makes absolutely no sense to me. In general I’m feeling good and my main problem at the moment is just that I have trouble getting anywhere near the nutrition they want me to get each day. There is no way I can eat as much as they want me to. In addition I am losing weight rather quickly. I somewhat want them to start me on some IV food, because I’m sure they will if I get bad enough, but I’d rather push back getting that bad by starting now. I feel like weight loss is probably going to be a bigger issue than most other worries of the cancer for a while honestly, so I’d rather like to fix that soon.

So I’d also like to thank everyone for sending me messages or cards or gifts. I especially want to thank the women pumping breast milk for me since I know that is supposed to be quite a bother to do. It really is helpful you are doing that, and apparently new research even has a drug company looking into one day using a synthetic form of one of the chemicals in it to make an anti-cancer drug; so using it seems even more promising than before. And I also wanted to say a special thanks to the CAP group back at ASU for the card and gift they sent me. That was a really nice gift and gesture. Anyway, sorry for another very delayed update… I never had a regularly updated thing like this before so it’s impossible to say if it’s due to me or the illness, but I think I’m just not the best at keeping these things regular.

-Jeff

Close to a first treatment

Ok everybody so I don’t have as much time as I’d really like to update since I’m working on some research and the like. Anyway, let me sum up some of the basics:

It seems that the nausea and vomiting that had driven me to the ER was due to the morphine, it seems it was hard on my stomach. As such I have now been prescribed oxycontin. My one pill thus far seems to be handling my pain acceptably (though we will have to see if I can sleep) and I had no nausea. So hopefully this is the end of my surgery pain management team screwing me over.

Now, more importantly I have talked with Dr. Rini and Dr. Geller. It looks like I probably know what treatment I will do. What I most want to do is design my own drug mix, I want to take ARQ 197 (a c-met inhibitor – this basically helps slow the division of cancer cells by limiting the activation of some of the cancer cells’ receptors) and sunitinib (a vegf inhibitor – this stops blood vessel growth throughout my body, so fast growing tumors will not be able to create a blood supply to their new parts). There is a trial that just uses ARQ197, sunitinib can be prescribed by any doctor, there is a trial that uses less proven (and I suspect less effective) alternate c-met and vegf drugs, and one that uses ARQ197 and a seemingly less effective vegf inhibitor. Now my reason for wanting my specific mix is that when one uses one of these drugs they will, if originally effective, usually stop being effective in a few months. This is all fine and dandy if the drug is likely to cure you, but each tends to just have a partial response if any. I hope that by combining the two possible partial responses I may get a stronger effect. The big problem though is since they become less effective after some use if I try one of these individually I am unable to later try a combination. In fact due to the basic drug trial rules if I try any c-met inhibitor I can never try one again after coming off it. So, to reiterate my top priority is to try and combine the two drugs now. Another serious consideration is that the vegf drugs can make you sick enough that treatment must stop, causing the ARQ197 to stop too (and it can’t be restarted). Now if I design my own study I can design it so that we use full dose ARQ197 and have a scalable amount of sunitinib to prevent needing to stop the trials. If I do the other combination trials I have to worry that the drug mix will make me stop the possibly life saving ARQ197. And if I do the ARQ197 only trial I could forever miss out on the potentially life saving combos. If I can’t get my own treatment approved then I’ll be talking to the doctors to see if I can manage any kind of scalability in the combination trials. If I can’t I have to basically bet on something and run with it.

Now I should also mention that I have other possible backup plans too. There is a subset of chemo that Dr. Geller has seen help some of the people with my cancer. I haven’t gotten my chemo screening back yet, but that is currently looking like my plan B if my first choice of trial fails. I also still personally find immunotherapy somewhat promising. And I am looking into more crazy treatments. I have ideas that the doctors haven’t considered. I need to figure out what kind of doctor is crazy enough to actually consider testing some of these; and actually to show the kind of stuff I’m thinking of I may list some when under less of a time constraint. I know the odds of any being actually usable on me are slim (since if nothing else they’d need years of study before use on humans) but I want them looked into. As a side note I’m very happy to learn that people are investigating using engineered viruses that just attack cancer, this is something I wanted to occur since elementary school since it just seemed so logical.

Well there’s not much else to say for now. Tomorrow I will get another CT scan and probably get a better estimate of how many months I have assuming medicine fails me. I will also be calling everyone I think may possibly be useful for the purpose of getting my unique drug combo approved. I’ll try to let people know when I know what I’ll be running on. Hopefully I’ll know by the end of tomorrow, or early next week at the latest.

Quick Update from Katie (Jeff’s Sister)….

Hi All- It’s been a while since Jeff was able to post so he asked me to jump on a do a really quick update so that people know what’s up. I’ll leave the finer details for him to post later. Jeff started having some major digestion and vomiting issues a few days ago. We think now this might be related to the fact that they started having him take morphine. For several days he was unable to eat or drink much of anything and had several rounds of vomiting. This culminated with a trip to the ER on Monday night. They put some fluids into him and gave him some Anti-Nausea meds and he is now doing a lot better.

Pedro (my husband) and Jeff left early Tuesday morning for Ohio where they met up with our sister-in-law Pamela (I’m expecting a baby girl in 3 weeks so I am forced to stay behind). Their first stop was the Cleveland Clinic where today they saw Dr. Rini who is the top Kidney oncologist in the U.S.   He doesn’t know anything really about the TFE translocation type of cancer Jeff has but we wanted to talk to the head guy. I’ll let Jeff explain how the meeting went but overall sounds like it went well. Tonight they traveled to Cincinnati. They will start several days of meetings with Dr. Geller at Cincinnati Children’s Hospital tomorrow. Dr. Geller has 4 patients that he is currently treating with this specific translocation and has collected data or consulted on a total of 24 cases so that basically makes him the expert in this type of cancer (remember this was only first diagnosed a few years ago and there are maybe only like 50 cases every reported in the world). Jeff will do a bunch of tests in Cincinnati and will also be reviewed by the surgical team there. Then it will be time for him to make a decision as to which of the different treatments he want to try. There are several options on the table and again I’ll let Jeff do the specifics.

Between the sickness and now the travel it has been hard for Jeff to be able to do the  full update that is required to explain everything going on but he wanted everyone to know that he is starting to feel better and that he is traveling to meet with the doctors. He’ll be in Cincinnati for several days so I expect that he’ll do a full update in the next day or two once they get through a lot of the tests.

Thanks for all your support- it means a lot to all of us.

-Katie

Doing well now

Hey everyone. Sorry for the long delay on an update. Among other issues it was really hard to use my laptop at all in the hospital since I couldn’t sit up very well, it couldn’t rest on my stomach due to my wound, and hospital beds are too skinny for it to rest beside me. Then I had a crappy day or two after I got out, so I was a bit distracted. Anyhow, I am out now and feeling fine so I can finally type this up.

So to start things off I guess I should just say I’m really rather annoyed with the results of the surgery. I can accept that they could not remove any sizable part of the mass, I understood before they went in that such a removal was likely going to be difficult, however it was not made clear to me that they would then delay virtually all other treatments by an entire month. It seems that clinical trials require patients be off other therapies and out of surgery for 28 days before they will begin the trial. In my opinion this is not acceptable, and I likely would have demanded a trial prior to surgery, because had a surgery become needed the trial wouldn’t prevent me from getting it when needed, only vice-versa. I do understand that the doctor fixed a potential problem by creating a second opening between my stomach and intestines, but I’d rather kill the cancer than play catch-up.

As for recovery I’d say my feelings are mixed. I was actually doing extremely well two days ago. I was eating, walking, and even beginning to sleep normally. However they gave me some pills to increase my potassium levels and I ended up vomiting up everything I’d eaten in the past day. This was bad not due to the vomiting itself, but it really pulled my stomach muscles, and it showed I wasn’t digesting things as fast as I should be. I also traumatized my stomach a bit when I forgot I was avoiding web comics because the make me laugh. My sides were literally aching for around ten minutes when I saw this http://xkcd.com/585/ .   My current status is that I can’t really eat much and there is some chance of regurgitation, pain is mostly under control but I still need my meds, and for the most part I just feel like I need a day or two to improve. So essentially, my recovery has been set back a bit, but knowing how well I was doing I feel like the recovery is pretty successful. The actual process of getting to a recovered state however is why my feelings are mixed. The process was rather botched.

Before surgery began I was given an epidural to manage my pain, it should have effectively numbed my torso entirely. When I woke up in the recovery room my side was hurting and through some testing we discovered that it basically blocked pain in an L shape that left an important hole in the coverage. They adjusted the epidural so that it covered me a bit more uniformly, but still inadequately and decided to see how that would turn out. It wasn’t a great pain relief method but it did basically work until they got me to sit up in the early morning, that seems to have jiggled the epidural out entirely. I told them I was in pain, but they kept just telling me to hit the button to get more drugs. Effectively I was entirely off pain killers for a good ten hours or so before I could convince them to just admit the epidural failed and give me an intravenous pain med. It wasn’t really an optimal solution because they wouldn’t give me a continuous dose (that would allow giving myself enough to stop breathing), they gave me a button I could hit every 7 minutes, and so I did hit it almost every 7 minutes. This actually mostly sorted out the pain, though it did make me just a little loopy. It made sleep rather impossible (either 2 hrs before waking in pain if I really piled up the doses first, or using a ‘wake up for dose every 20 min’ strategy) but they didn’t want to give me a long term, pill style pain killer until I was able to eat normally. I was actually pretty happy with that, but the doctors insisted I get another epidural (and I do mean insisted because I REALLY didn’t want to get it and argued a lot to avoid it). This second attempt was rather bad from the start. It barely worked and they disabled my IV meds. Eventually I got them to readjust that (which made it even worse) but also turn back on my IV meds. I had wanted them to just admit failure and pull out the epidural, but they insisted I keep it in for another day just draining useless meds into my back. Luckily I was soon just on my IV, and then luckily got to the point where I could eat a vicodin. I improved extremely rapidly after that.

Only two other big points of interest really occurred. First my anesthesiologist freaked me out right before surgery, as though I wasn’t worried enough. They didn’t tell me until just before starting that I’d be getting an IV into my jugular. That just freaked me out. Second my doctor once again didn’t run some of my requested tests again. He is running the chemo tests, but I wanted him to run some involving placing t-cells directly on the cancer and also adding inflammatory agents. As such I no longer want him as my doctor, that was basically my final straw. Luckily I am basically free of him now, so now I just need to find a doctor who will run my tests.

So that basically described my hospital experience. For the future treatments we are still unclear what exactly we will do but here’s the main options.

c-Met inhibitors – These would involve clinical trials, They aren’t fully tested, but they are supposed to work by using chemicals that bind with receptors on proteins that are more present in the cancer cells than normal cells. Essentially the thought here is that reducing the ability of the protein to fill its normal role in cancer growth will be decreased. There is also a doctor in Ohio who may allow me to join his study earlier than the 4 week mark, like maybe a week from Monday.

Mtor inhibitors – These do the same thing as c-Met inhibitors, but they target a different protein.
IL-2 – I already described this, but the main thing to mention here is it doesn’t require the 4 week wait.

Breast milk – Gross, I know, but apparently some small studies suggest it kills cancer. As such I’ll bite the bullet and start drinking a little that comes from friends of the family. This isn’t a proven treatment, but I can do it on top of other treatment so….

Oxygen therapy – Basically I don’t think it’s likely to help, since it prevents cancer more than kills it, but exercising with a high level oxygen supply supposedly helps keep cells healthy and keeps them from becoming cancerous. I’ll do this if my doctor helps me get easy access to a oxygen supply, but otherwise I don’t care enough to worry.

Oncophage – not yet legal in the US (but available in Russia, even outside trials) this med is custom crafted. They take a part of your tumor, alter it so it basically becomes a target to your immune system, then re-inject it. The point here is that your body then learns to attack the cancer cells.

Essentially we plan to see if one of the tests I have requested to be run comes back positive for susceptibility to IL-2. If that comes back we’ll do IL-2. Otherwise we will probably run with the c-Met drugs. Then should those fail I’d try to get oncophage and follow it up with IL-2. No matter what I do I’ll also try breast milk.

Also I figure I should make clear that I am getting a lot of emails and blog comments and stuff but it seems I may be missing some of the mails (Greg says I’m being sent e-mails I’m just not seeing). I’m not making the comments public since people can then write things privately, but I’m still getting those. Also sorry for not responding to everyone’s e-mails, among other issues sometimes I just don’t know what to say back, I do appreciate the sentiment though. Oh and some people say they will check the blog often, but that’s a bit inconvenient since I don’t update as much as I should, so I thought I’d make clear that there is a button at the top of the page which will bring you to subscription directions. Then you can just be contacted whenever I have an update.

Well, that’s about where things stand now. Thanks for all the support guys.

Surgery complete

This is Katie, Jeff’s sister. Jeff wanted me to let everyone know that he is out of surgery. The surgery was actually shorter then expected. The large tumor was surrounding the blood vessels to the kidney so they were unable to remove the Kidney. The tumor is quite large and is encroching on a lot of the blood vessels and things so they couldn’t remove it, or cut it, without a massive bleeding risk and without causing him to have a very extended recovery. The Doctors decided that it was better to do less and then get him healed up faster so that he can start other therapy to shrink all of the tumors in his body, including this big one. They had noticed that the tumor was getting very close to his intestines and that there was a risk of it blocking that off so they did a divergence and created another path from his stomach so that if the main tumor continues to grow it wont stop his ability to eat. They took another biopsy of the Kidney and will be doing the Chemo and IL-2 tests to see if the biopsy responds well to a specific treatment. This week will be time for Jeff to heal and time for us and his doctors to research all of the different treatment options and make a plan as to which treatment will yeild the best results.

Jeff is awake and is doing well.

He is at Virgina Mason Hospital in Seattle, room 1779. They say he’ll be here for 3-5 days depending on how quickly his body adjusts to the divergence they put in. After that he’ll be back home with us.

Thanks for keeping him in your thoughts.

-Katie