It really never gets easy

The 6 week hiatus is over. Part of me had a little bit of hope that maybe, for this one brief moment of time, I'd get to celebrate some success. Unfortunately, the latest reality, well, sucks. Yes, the part that seemed to be growing had been held at bay. But a new location, more difficult to reach, is now rearing its ugly "head". At this point we are mainly looking to try to stretch the time as much as possible without expectations. I guess that was always the goal.

Was the timing the same?

Today is Day 5. If you'll recall from Temodar, Day 5 was one of the worse days for energy. And for CCNU so far? Yep, today was not so great. I woke up with the slightly spiny head, but somehow thought that if I made it to work, I could push through the day back to normal. About halfway done to work on the train, I was told otherwise. So I headed back up and rested out the remainder of the day. I'm really hoping that the worst day is behind me, since the weekend is starting tonight!

Note: This is not actually a final conclusion as to whether or how CCNU might influence my energy. One scientific experiment does not prove a result! In fact, one other theory I have, and hope it ends up disproven, is that the spinning feelings are directly related to increased tumors spreading near my acoustic neurons. And yeah, let's not think about that....

Here we go

Last night, for the first time, I took the CCNU. Given absolutely no prior experience, I have no idea what to expect. So far it's been pretty ok. More to come....

I swear I used to be able to spell!

 And here's the proof! My prize from winning the contest in elementary school.

In fact, I came in 6th place in this event. Only missed one specific word that, when initially presented during practice, had been read with a mid-western "accent". Thus it was unrecognized during the actual competition.

Now I rely on the trusty Google for correcting my typing, though I must say, occasionally it has its flats....  

Current Status...and Advice

I'll admit, my recent optimistic posts were always filtered through rose colored glasses. This time, it's no longer possible. Some of those "possible" tumors have actually continued to grow. The other areas have become stable, but in general the cancer has spread, albeit slowly, into lots of different locations. Some growth has even shown itself on the right side of the brain. There aren't a lot of choices for treatment. From what I can tell right now, the options are simple: stay with Temodar, but shift to a more consistent schedule where I take it every day for 6 weeks at a lower dosage, or; switch to CCNU with the hope that the areas still growing through the Temodar become hammered by the old school chemo. Of course, the best stuff is not held until the end. The best stuff is offered first. So you see, these choices are not particularly enticing in general. This makes it difficult to get excited. There is, of course, some hope. But more to the point, and more towards reality, I am hoping to enjoy whatever it is I have remaining. Taking a drug that will make my life miserable does not fit the bill. Especially since there is so little evidence in this case for misery to lead to a long life.

That said, it is still not entirely clear which of my options will reduce the misery and allow the most enjoyment I have left, whatever that may be. They each have there negative side-effects, and from what I've read, the risks move all over the place. So there, dear readers, is the moment I could certainly use some advice. You have the two options available. I'll be curious to hear your opinions.

Rough Chemo Week

Do a few bad events indicate a trend?

Eh, not really. To calm those concerned, basically my MRI report today was pretty good. I have to add the caveat that lately it doesn't take much to earn that rating, compared to the older days.

But first, the beginning. I headed out to my MRI location early, with the hope that they would pull me in a little early, thus guaranteeing that I'd be outta there in time to meet my appointment. Eventually, after my actual scheduled appointment, I was ushered in.

As usual, I needed to sacrifice a vein for them to pump in contrast during the MRI, but this time, the location chosen struck a nerve in me, literally! My entire body was shaken and electrified and yes, it hurt like $@!#%^@! The first finger of my left hand remained numb, and there's actual still a little wart like bump where it's most numb.

After the MRI, while headed to my appointment, I get a call from Aetna. They are now in charge of getting my medications to me (as in, they will send them to me, so I am NOT supposed to get them from a pharmacy). They ask me where I had my "extra" order for the anti-nausea sent last month. I tell them I did not place an extra order. They ask my where did I have it sent. I tell them I did not have that happen. They ask me where did I have it sent. Do you recognize a pattern? At that point, I pretty much lost it and told them that this is NOT my issue, and the whole reason they exist is to deal with these kinds of things themselves. They should know this, and if they do not, they should contact my doctors (for whom they have the contact information). They should NEVER bug a patient, especially when they are headed to a doctor's appointment to receive the news as to whether he's doing well or in serious trouble. Ironically it seems the whole "mistake" was their own fault. I got this from a message, but I will be checking in further tomorrow....

Once I got to UCSF, I was told that my regular oncologist's wife is having her baby, today! So that's great news for them, but it also meant that I'm getting a sub as my doc. The docs there are all great, so I wasn't too concerned beyond the fact that in general you get used to and begin to appreciate one person's approach, and taking on a change from that when you're dealing with some serious issues adds complexity. Needless to say, even after some gaps in communications and understanding, all came out well in the end. The information is basically moving in the right direction. The decisions for what to do at this point had already been made by my regular doc, and I trust it relative to the overall concerns I had in my conversation with the sub.

Where does this stand now? Well, I start my next Temodar this Thursday evening, then I get another hit of Avastin on Friday. Likely another sore throat (and hopefully nothing more than that) this weekend. Exaustion next week. And finally recovery next Thursday or Friday. And who says I don't make plans?

Let's do the numbers

I'm saving this...for you!

Yes, you. You who have mentioned how good I look with my current hair color. You who are impressed that I was able to "pull this off", for free! You who think there must be some way to "milk" it. I'm saving it for you, dear viewers, both past and (briefly) future, so it will never disappear. In the digital sense. For you know that once I cut enough of my hair, it will never be coming back like this again.

It could be better...

...but it could be worse! Today was the "two month" appointment to see how things have been going, or...er...how things went. And when given a "two month" hiatus, one often becomes hopeful for reaching a temporarily stable path. As it turned out, one of the "blobs" showing in the MRI from May went for a repeat performance. About the same location, about the same intensity (or a little less). My initial reaction was, obviously, not thrilled. But after discussing it further with Dr. B and thinking about our initial attack on those tumors, I actually felt pretty ok. Here's the explanation:

For my initial treatment using Avastin, Dr. B took the approach to deliver it only once, and then watch and see what happens. The logic for this approach, to which I strongly agree, is that you don't want to load the system with a drug that the enemy will eventually learn how to defeat. It's similar to using far too many antibiotics to treat other diseases. When humans tend to take them when they aren't needed, they unintentionally create a "Super Bio", no longer able to kill with the original weapon. Dr. B did mention long ago that there was a chance it might recur, but if that were to happen, we could hit it again with more Avastin. In fact, back in May he specifically mentioned that "It wouldn't be very surprising for at some point in the future...4, 6, 8 months...to have some measure of rebound...." And we are currently at? Yes - 4 months. This led me to thinking, what if I could simply take the Temodar every month and add an injection of Avastin every 4 months, and all my cancer would stay dormant? That would not be a bad way to survive.

So at this point, I will get another hit of the Avastin this Friday. I will likely stick with the Temodar approach for another cycle, unless the Tumor Board has a very strong opinion otherwise. As for the rest, no other previously exposed tumors showed up again in the latest MRI, and that makes for some good news.

Color me silly

When we last saw Logan, he was showing a "bleaching" pattern taking over his whole body. Maturity? Stress? Well, fellow Avengers, this pattern was caused by the evil and lazy cancer drug villain.

But wait! Could it be?!? Is this our same hero Logan, fighting off the evil Doctor Bleachmeister?

Hurray! Hurray! But wait....has he really finished off the Bleachmeister? Stay tuned....

Good news CAN lead to late posts

Just got word today and basically the MRI looked stable. That is to say, nothing is growing in an alarming way. In fact, the results were so unimpressive that my next MRI will be held *two* months from now. So what led to the delay in reporting? As soon as I got the word, I decided it was time to start living my next two months. So I got ready and headed north for a fantastic annual kayak trip. I'll try to post more info upon my return. Have a great weekend!

Yay!

Just had the MRI today, and the results showed movement in the right direction, finally! Yes, there are still nasty looking tumor-esque spots in the image, but compared to the previous images, everything looked 50%-100% better. And trust me, I'm used to translating 50% success rates as wonderful news (I did major in physics after all).

Thanks to all of you for giving me motivation along the way.

I start my next round of Temodar tomorrow night. Let's see if I can maintain or even improve my energy levels from the last one. Just call me Iron Man....

So? How did it go?!?

Before I answer that, I need to explain the ground rules I was following. Understand that even though I am generally known as a more "traditional" scientist, most of the "alternative" medicines I looked into were things not generally pushed by my standard oncologist. However, as a more traditional scientist, I resisted adding those "alternatives" that would potentially conflict with the "standard" medical drugs or otherwise compete with any of my daily passions, pulling me away from any of the people or activities that bring joy to my life. So, how did it go? First the approach.

WARNING: This might feel a little gross, so read at your own risk!

Alternatives that are now taken daily with the intent to improve energy and resist infection:

Turmeric: Morning, 2 pills, 395 mg/pill
AHCC: Morning and Eve, 1 pill each, 500 mg/pill
Energy Vitality:  Morning and Eve, 1 pill each (mainly ginseng)

Vitamins: Morning and sometimes evening depending on my "mood" and what else I ate

Required medications:

Zofran: 5 days, 1 hour before Temodar

Temodar: 5 days, scheduled right before going to sleep

Laxatives and stool softeners:

Polyethylene Glycol: Mixed with smoothies every morning and water every night
Docusate Sodium: Pills taken most mornings

Choices for eating:

I tried to eat things containing lots of iron and/or things with high fiber. These included: burritos with beans and broccoli, hamburgers or other meats, spinach salads, salmon, and smoothies with lots of blueberries. Things that didn’t go very far included: dried fruits, nuts, and a liquid iron, all things rejected by my taste buds.

Results:

After Day 1 of the Temodar,  I was given my first dose of Avastin. Amazingly I never noticed any real side effects from that. The plan is to hold off until after the next MRI to see if more needs to be added. Continuing with the Temodar, after Day 3 I definitely noticed some fatigue, but still pushed through a normal day. By Day 4 I definitely noticed a decrease in energy. However, for the next 3 days, the energy was never completely lost, and often returned to some degree after a nap or an "irony" meal. The "alternative" medicines also might have helped to fight that sleepiness. The stool softeners in general seemed to work, but I also think that Metamucil might actually work as well, and is a little more "natural" over all. Either way, this was less of a worry since most of this was easily controlled in the "old days".

Conclusion:

Compared to the first go-around, this was definitely a successful experiment with respect to energy, evidenced by the fact that I managed to go to work part-time every day that week. I think there is a fundamental limit for maintaining energy, since iron is indirectly depleted through reduction of the blood cells (the reverse of "iron deficiency anemia"), so adding iron externally cannot sufficiently compensate. Interestingly enough, there are still some other problems to solve. My emotional attitude certainly dropped significantly during the Temodar, as happened before. Whether that is my own attitude or an actual chemical reaction from the drugs or the diet remains to be seen. That said, overall it seems like I'm on the right path. We'll know more for sure when I have the next MRI in June.

It makes sense. It's gotta make sense.

Tonight I take my first pill of Temodar for the second time. The long story short? Sorry, not possible.

I had my oncologist Dr. B look into all sorts of other options, but the options were limited. First off, the growing tumors are in several different places, and so even the most aggressive surgeon, Dr. Berger, said that only about 50% of the new growth can be removed. On top of that, there didn't happen to be many effective clinical trials for which I could qualify. Those I would qualify for are Phase I trials, but it did not seem like the smartest approach. So it was essentially suggested that I turn back to the Temodar treatment with one small difference. Tomorrow I will also be getting a dose of Avastin for the first time. This is the substitution to surgery, with the belief (hope?) that what is showing up now will be starved to weakness, and will no longer rear its ugly face as long as I'm taking Temodar.

Now my biggest goal, outside of this actually working, is to find ways to maintain some level of energy throughout the treatment. Others have found ways to manage it, so why can't I? I've pulled in lots of extra methods to fight the battles I'm facing, and hopefully down the line this will just be a minor side-treatment that will keep me going for a long, long time....

When will things turn around?

Today was my MRI day. I was hopefully optimistic, especially given how well the current chemo had been bleaching all of my hair. I assumed that if it was doing that, it must be doing what it's supposed to be doing.

Turns out I was wrong. The MRI showed a lot of different locations showing either growth or what appears to be growth. It is unconfirmed, but likely most of it is tumor. Confirmation would require biopsies, but at this point, it's not clear it's worth questioning. All of which will likely lead to stopping the clinical trial and considering the next steps.

The only problem is, there's not a lot of choices left, especially given the current spread of what appears to be tumor. I might be hitting what I've always considered the final frontier, the end of the line, Avastin (possibly with Temodar or another old school chemo).

Tomorrow I will hear back from Dr. B to see if there are any other options. I've also asked him to chat with some other researchers to see if I qualify for some of the more radical trials, though I'm not optimistic given the latest appearance.

In the meantime, take a good luck. This is the whitest you will see my hair under the current chemo treatment. Since I'm likely to be ending this trial, the only positive about all of this is that my hair should grow back to its natural, wonderful dark color....

"Blondes" have more fun

As many of you know, one of the side-effects for this particular chemo is a possible "bleaching" of my hair. It sounded like a low probability, but apparently I like to face challenges head on. For the last clinical trial, one of the low risks was potential liver failure, which I managed to achieve. So I'll certainly take going blonde over that!

Many people have seen the "new look" and complimented me on my beard, as if finally allowing my beard to grow with its full greyness is attractive. But let's be clear. For those who somehow don't remember, I have had beards before, many times. I know it seems like I'm taking on some new look, but really, it's not by choice. And I have proof!

Exhibit A - My beard one week after surgery. At this point I had only taken chemo for one week prior to surgery. Yes, there are a few hairs in there that are grey, and they are certainly age related. But most of the beard is brown, like my hair. And...well...it exists!

Exhibit B - My beard soon after beginning the chemo again. Notice that the entire beard has turned white. As in "bleached out". This is not aging. It is the same beard that was never shaved. In fact, it appeared slightly whitened soon after starting the chemo, but trimming it removed most of the dark hair making it look completely white.

The final tally is still a little unclear. On some of the facial hairs I've noticed an odd pattern of dark-light-dark. I suspect it is parallel to the initial chemo, then a break for surgery, and then the return to chemo. There seems to be a slight delay for chemo to trigger the bleaching. If that's the case, I suspect things will go white for a long time, including the hair on the head that is already showing some "gleam". The other possibility is that my follicles were "shocked" into bleaching, but will somehow regain the upper hand over time. Stay tuned!

Late latest update

Sorry for not posting earlier. I'm not even creative enough to use "brain tumor" as my excuse.

Wednesday was my meeting with Dr. B to talk about where I stand and to start the chemo trial again. Essentially the results are pretty promising. Most of the tumor was surgically removed (the new UCSF computer system is not quite reliable yet, so I didn't get to actually look at the latest MRIs). A small portion of the tumor remains, and word on the street is that Dr. Berger left it there in order to save my vision. As some of you know, I've lost some peripheral vision as a result of the past 3 brain surgeries. The best news was that tests on the surgically removed tumor showed that about 20% of it had already been killed by the chemo I was on for a week! Needless to say, I was excited to start the chemo again.

Beyond that, it looks like the vision loss is really permanent, since it's not happening at the processing level, but at the actual optical nerve. Luckily it's a region that I've only noticed when mountain biking, and I'll learn to adjust.

Amazing weekend!

Sorry for the late entry, but I was flying pretty high after this weekend. The Huck Cancer event was fantastic! Thanks again to...well...everyone! Family, friends, ultimate players, survivors...everyone! Ok, how many exclamation points can I use. Well, whatever! As my friend H-Lo might say, "!!!!!!!!!!!!!!!!!!!!"

In many ways it was better to be pulled from the roster and have to "sit" on the sidelines. I got to heckle...er..."watch" so many more people, including my brother, sister-in-law, and nephews. I really want to thank my wonderful friends who helped organize and run the event (you know who you are, and so do I). Pictures are trickling to the Huck Cancer Facebook page and eventually to the website. We also had the head of the Grassroots department at LIVESTRONG stop by, so we forced him to play. He had such a good time that he's promised to bring some more people next year.

Of course, not all of the news was fantastic. A few of my friends were there in honor of loved ones that had recently passed away from cancer. As I've talked about in the past, sometimes I think it's a lot harder to love someone with cancer than it is to have cancer. I think, and hope, that this event helped ease some of the pain.

In the rest of the news, I had my staples removed on Monday, a couple days earlier than I expected since I had to go in there anyway for a blood draw. While there, I gently asked into which parts of my life I can try to step back. Essentially, it sounds like I can gingerly try starting with the basics, and if nothing bad happens (i.e. if the surgical area stays solidly stuck to my skull), I can take the next step. So...today I went to work for the first time since the surgery! That was also wonderful. I'm not quite ready for a full day, but who's gonna complain about that. I also managed to get in some aerobic exercise and stretching, and that alone improves my energy and mood. As for the skull, still looks and feels the same!

Tomorrow I head in to get the detailed report from Dr. B and also re-start the chemo trial. I'll pass on that info as soon as I can. Meanwhile, as you can see, my brother and nephews (once they got here) decided to join in the fun....

I can finally show you all...

...the shaved head! I've been waiting for my brother and his family to get on the plane and ride out here to join in Huck Cancer so that I could surprise them with the "new look". If you recall, Andre Agassi was used historically as a benchmark to decide if I should shave my head or not. With each recurrence, I would once again raise the question, and every time my brother, out of solidarity, would shave his. Of course, his "solidarity" was very literal, in that I never ended up shaving mine. Until this week. And as it turns out, I do kinda look like cross between Andre and my brother.

You also get to see my lovely, puffy face from steroids. Gotta take advantage of this, so I'm headed off to join the NFL!

Familiar for me, but not for others

I just need to vent a little frustration with brain cancer. Right now, at this moment, I'm basically going through a somewhat similar recurrence as I've had the last 3 times. It's mixed in that of course I'd love not to have any recurrence, but I've also been keeping track of some of my "survivor" friends, and they are having their own, more difficult, challenges at this point. It reminds me of how miserable and frustrating this entire situation can be. We love to try to come up with reasons (cell phones, diets, genetics, etc.) some of which might have slight validity and all of which add to the illusion of control. But if we had control, then I know these friends would NOT be suffering right now. They are too wonderful to deserve this for any reason, and they are fighters. There is no obvious "causality" as there is for some cancers like lung cancer (and yes, I know I'm potentially shaking up a "cell phone" argument with others - but remember, I'm a physicist). There are currently some new paths to treatments and cures that are going well, but slowly. And there is frustration.

Yup, it all looks familiar

The situation now does seem a little bit like a repeat performance. Things are so far progressing steadily. I don't have any particularly severe pain, and my energy is increasing day by day. I'm still napping away most of my days, and my throat is still recovering from the tube that was stuffed down in during the surgery, but other than that, I can't complain! My sister and mom are taking wonderful care of me as expected. They are headed back home on Monday, so I'll be open for even more visitors then! Thanks to all who have sent kind wishes and treats to keep me pushing through.

Oh, and it's 45 this time. The contest is getting boring....

Quick status report

All is well. Lil mom and I just left Eric sleeping pretty soundly after the operation. Dr. Berger was quite pleased with the surgery and said he "cleaned him all out.". Given Eric's amazing recuperative powers, we expect to see him up and about and begging to be discharged within a day or so. Thanks for all of your support!

Here we go...again.

The MRIs, MSIs, fiduciaries, blood tests, and the last round of chemo have all been taken care of today. Tomorrow, it's surgery time. The chemo was relatively benign as far as side effects are concerned. It does beg the question, "Is it doing anything?" But let's leave that for another time. For now, may the surgery succeed in removing the two growing areas, and may I recover rapidly and with no issues.

And a big shout out to my wonderful family and friends who are once again stepping forward to make this process tolerable, and occasionally enjoyable!

Let...the chemo...BEGIN!

Just had my first pill (and my 2nd, and 3rd, and 4th, and, yes, 5th) today after finally nailing down the date for the surgery. February 21st. No obvious side effects yet!

For this surgery I'll get to sleep in until...oh...8:00 before heading over there. My mom and first-born sister are coming out Sunday to take care of me. I still have some questions for the surgeon, and am hoping I'll actually get a chance to ask them before actually going under the knife.

Time flies when you're fighting cancer

Since the diagnosis on Wednesday, things have moved pretty quickly. There's an opening in a Phase II clinical trial for which I actually qualify! (Kinda feels like applying for a job). Since I did the vast majority of my research when the recent "quasi-tumor" image appeared, I know that there are several trials of the radical approach for which I do NOT qualify. ("I'm sorry, but we're looking for someone a little more....") Of course, as a scientist I do want to dot all the "i's" and cross all the "t's" (and annoy all the docs). But assuming my path continues in the direction of the UCSF clinical trial, I'll be starting the drug either Tuesday or Wednesday of the coming week, and diving into surgery 7 days later! The main concern about the surgery is that there's a chance that my vision will be slightly damaged, based on evidence acquired from the "awake surgery" I went through last September. Yes, there will be many more questions and discussions with the docs, but at this point they will likely influence the emotions more than the decisions....

3rd time wasn't a charm....

Unfortunately, I'm not really out of the woods. The results today were not so good. The "stable tumor" I'd previously mentioned looked like it grew a little bit more. Worse yet, a completely new tumor was discovered, and is likely growing fairly rapidly. So...what's next?

I basically have the choice between standard care and clinical trials. It appears that all of the standard care can be implemented if a clinical trial "fails", so of course I'm leaning towards starting with clinical. The other option is whether or not I go through another surgery, which seems to be a personal choice. And personally, while they are kind of miserable and definitely take a page out of my life, I still find myself attracted to them, my own special love/hate relationship.

There is a particular trial suggested by Dr. B that might be the best option with which I qualify. It is a Phase II study using PLX3397 as the chemo treatment. I am also checking with Dr. Rudnick for a 2nd opinion and to discover what other options might be available. That said, I did research several options for the "stable tumor" and found that I didn't qualify for most of the radical trials given its location. Since it hasn't moved as much as it's spread across the pond, I'm guessing I still don't qualify for those trials and so don't have a lot of searching to do.

I am unfortunately likely to miss out on the Huck Cancer ultimate tournament - and might even be in the hospital when it's happening on March 3rd - but still want people to sign up or donate for the cause if you can!

http://www.huckcancer.org

The "Official Result"

Sorry for the delay. I spoke with Dr. B a couple of days ago, and he said that the board confirmed that basically the changes are so minute as to not raise flags. Basically this means I will check it out again in another month. Good news? Works for me!

There is also another trial that I might qualify for, though I need to have my liver behave first. I'll be getting that blood test next week.

The "Unofficial Result"? Stable!

Basically the MRI today looked the same as the MRI taken a month ago. Basically. As in, if you don't look too carefully. Or if you add in the variables like "they were taken with a different MRI device" or "the alignment was slightly different". And really, who needs details?

Ok, maybe you need details. So here's where it really stands. Today's image did look oh-so-slightly bigger than the last image. Tomorrow Dr. B will be presenting my brain to the Tumor Board to see what they all have to say. Hopefully they will think that it hasn't grown significantly enough to do anything other than continue monitoring. That said, there was a fair amount of discussion surrounding future options. And no, they are not all that different from things I've already considered.

Good news? Yes, at this point I think of it as good news. As I've mentioned before, if this spot stays basically the same size for the rest of my life, I'll have no qualms with that. Of course, I'm guessing some of you are wondering...how does any of this make him "stable"?!?

Amazing paper on the complexity of cancer

This paper was written by my (genius) cousin. It really does frame the complexity of cancer treatment (among other diseases). It also made me appreciate the chemo I was just on, as its intent was to cut off several paths in the growth of a tumor, not just one - as simpler chemo treatments have always done.

Meanwhile, my next MRI is this afternoon, so I'll post more then.