chemo ahoy!

I haven't updated my blog because work has been very demanding in the past two months and I haven't wanted to spend any additional time at a computer.

The MRI in January was bad news. The tumor continued to grow despite the Lomustine and so we're on to a combination of Avastin and CCNU, also called Irinotecan. I wonder if 'chemotherapy agent' is like 'secret agent' since have so many names...

I had my first infusion on Monday, 26 Jan and it went pretty well - first of all, I had company the entire time - thanks to Becky, Katie, Morgan, and Maggie for all spending some time with me that day. I definitely had to drag myself through the rest of that week, but instead of experiencing the side effects of the medications I was warned about, I experienced the side effects of the medications I was given to prevent the side effects of the chemotherapy. The irony amused me greatly, especially around 2 and 3 in the morning as Decadron kept me up for the first two nights after the infusion. :)

Surprisingly, the morning side of my double vision and much of the swelling in my right eye actually went away for a few days after the infusion. Michelle and I are guessing that this was also due to Decadron, since symptoms returned as Decadron wore off and I regained my sleep and bowel movements.

The next infusion is this Tuesday and then every other Tuesday as long as my blood counts are good or until something better comes along. A 'round' of this chemo is three treatments ( six weeks ) and I'll be getting an MRI at that interval as an update. There are a lot of questions I'm not answering here because no one has the answers. I think the basic approach at this point is to keep the tumor from growing for as long as possible and 'debulk' via surgical intervention when required.

new developments and glints of hope

We got up at 3:30AM this morning in order to be at our appointment at the National Institutes of Health (NIH) in Bethesda, Maryland by 7. We were doing great until we hit the beltway - 10 miles left at about 6:15 and we parked at 7:30! Of course, that was only the beginning.

To be fair, Michelle and I left feeling great about every single staff person we met there - even the security guard who searched our car was courteous and helpful, giving us directions to the correct building on the unfamiliar campus. Although we were a little late, they got my vitals and I had the intake and physical with the RN and we were ready to meet the doctor in the examination room by 9:15AM.

Three hours later, Michelle and I had explored almost every means of entertainment available in the 10x10 room, including dizzying each other on the spinning stool, blowing up rubber gloves to use in improvised puppet theater from either side of the dividing curtain, and creating new tango steps. After exhausting our options, Michelle fell asleep on the exam table and, eventually, I ventured out to find out if we could go get lunch or if we were to continue to be confined to our room. About 15 minutes after I asked to speak to someone, we met Dr. Howard Fine, Chief physician of the Neuro-Oncology Branch of the National Cancer Institute. He apologized for the delay and explained that he had been reviewing my case for 40 minutes already.

Dr. Fine is a wiry man with an intense light in his blue eyes and nervous jitters in his legs. We both found him charming and his theory on my case very interesting. His reading of the reports and scans and the available treatment options was that the IMRT radiation I received was more effective against the tumor than the Temodar. His reasoning is that IMRT radiation is designed to avoid certain critical structures, in my case, the optic nerve and the orbit. Temodar, supposedly, will attack glioma wherever its found. It looks liek my tumor has not grown in the areas that received radiation only in the one direction where radiation was limited or excluded.

Before we met, he had already contacted the office of my radiation oncologist at HUP, Dr. Lustig, to get the details on the map of my treatment. He'd also contacted his radiation specialist and an associate at Mass General in Boston who uses the proton beam for treatment there. His preferred path, which he admits is unlikely, is that the radiation exposure within the orbit has been low enough in previous treatments that we can blast the remaining tumor cells with either IMRT or, possibly, the less destructive proton beam.

We also spoke about chemotherapy where he gave us some new perspective as well. Considering his theory above, he wasn't a strong proponent of resuming Temodar even with a new protocol. He did say this was a reasonable choice but considering my history he had other ideas. He was even less a fan of Avastin for my case - this is the other option that Rosenfeld and MSKCC have offered me so far. He thinks (as done studies that support his ideas) that CPT-11 (Irinotecan) is irrelevant for brain tumors and is just a holdover from treatments for other cancers. The case against Avastin is a little more technical, this entry is already long, and I am tired.

His recommendation for chemo was to pursue the older regimen for glioma, 'PCV'. PCV stands for Procarbazine, CCNU (lomustine), vincristine. Once again, his opinion differs from the norm in that he thinks that vincristine (an old acquaintance of mine from leukemia ) is both the main cause of side effects and the least effective of this trio so it can be left out. The idea here is that this treatment has been effective with glioma in the past but has superceded by Temodar as the standard of care because it is 'better tolerated' by the majority of patients. Since Temodar, by his thinking, hasn't been very effective for me, this is another good option to pursue in hopes of finishing off the remaining cells while they are still undetectable. Another ray of sunshine here is that vincristine is the only intravenus agent in the mix so I'd be on another oral-only chemo regimen.

So this is really the best news we've had for a while on the health front. There were several loose ends and we made plans to tie them off: I got a CAT scan while I was there with 'bone windows' so he can look for the bone condition that Dr. Gausas reported from surgery; he's going to follow up with all of the radiation guys and figure out if and what type of radiation treatment I could receive at this time. We should know more next week.

Now it's time for some sleep.

End of Cycle blues

I may have mentioned this already, but since about September 2006 I've begun to experience an unusual (for me) amount of anxiety towards the end of my monthly Temodar cycle. Today, January 6, 2007 is day 24 (out of 28) of my 7th cycle of Temodar. I've been sleeping peacefully each night this week and then tonight I'm wide awake at 3AM. I tried meditating for a while, got back in bed, but my mind was racing between all sorts of things that could go wrong in my life. All in all, this isn't so strange or awful, but it's so predictable that I can't help associating it with the Temodar cycle. When I had my one-week reprieve from the cycle last month I felt these feelings melt away almost immediately. I am looking forward to May and leaving Temodar behind.

Staying on chemo, enjoying winter

Currently on my 4th day of the 7th cycle of Temodar chemotherapy. Feel generally OK, a little fatigue, a little constipation, insides feeling kinds sludgy.

I spoke with my neurologist about 'pausing' chemo for a few months while I enjoyed my health during the winter. She didn't go for the 'taking a break' approach but said that 'it is not unreasonable to stop' the Temodar at six months, since that's the actual standard of treatment for glioma. She recommended continuing for another six months, however, because their trials with anaplastic (grade III) gliomas indicate that 12-14 months of Temodar is more effective for this type of tumor. She also said that she has several patients with similar tumors that are doing fine who stopped after 6 months of Temodar, so... She didn't have anything to add to the Temodar v. leukemia issue, only that 'all chemotherapy agents are toxic and have side effects', so... Well, Michelle and I discussed it and then called in Tim and Charlotte to confer Monday evening and I finally decided to continue with chemotherapy as the best path for my long term health despite the risks and discomfort.

In other news, I went camping in the Catskills with Tim and Eric last weekend - hopefully there will be pictures soon. It was the coldest few days of the winter so far, and within the first few hours of arriving, I was convinced I was not going to make it. But after warming up in the car for a while, I decided it was worth the adventure and we all ended up having a great time.

We camped near Notch Lake and hiked up Hunter Mountain on Saturday - in a little over 2 miles we went up about 1500 ft. Luckily, Tim voluntarily carried the food and a camping stove up the hill so we had hot noodle soup with salami and cheese in the lean-to near the peak, pictured above. By the time we came down, most of the ice we'd fretted over going up had melted away. We then demonstrated the depth of science that goes into making a Duraflame-style log by warming up to its amazing heat.

Sunday we packed up, stopped by Sweet Sue's in Phoenicia for breakfast - we were all amazed at the people with their down jackets on inside the restaurant at that point. After the two hour drive back to New York City, we went to the Russian baths on the Lower East Side to wash away two days worth of serious stink. Three days is not very long, but when its too cold to touch skin with water and sweat builds up from the hot sleeping bags and the hiking, well, we all felt much better and enjoyed each others company more afterwards.

This week, we leave for Texas for Christmas and such. We'll be staying at Michelle's mom's place in Corpus Christi. Since it got warmer again here, maybe it won't be such a big difference, but it will still be a nice change of pace. I'll probably write again from there... Happy Holidays and all!

Change of pace

This month, because of scheduling issues at the hospital, I end up with an extra week before I see the neurologist again. I think my body's a little confused by this since I felt like it (the body part of me) was getting all geared up for another massive dose of toxins by getting anxious about every little thing. This week's anxiety-driver: my manager suggested I find a thank-you gift for an associate who has been acting as an informal consultant on my recent assignment of designing and installing a software build-and-deploy system for our team. Go figure.

I think the anxiety crested on Saturday night when I was having trouble sleeping and then had a long, elaborate nightmare in which Michelle and I plotted and carried out someone's murder. I won't bore you with the ramblings of my subconscious, but I ended up doing the deed, being arrested, and humiliated. It was an awful feeling and after a little reflection saw that in my mind, I am the killer and the victim here. I am not sure what else to make of it but it was the most powerful dream I've had in a long time.

Winter has started to move in here in southeastern Pennsylvania and with the cold comes colds and flus and the like. I've been lucky so far, even with my suppressed immune system, but Michelle has been out for a few days. It seemed like she was on her way out of a cold today when it turned flu-ish, so I'm watching over her this evening.

I'm considering requesting a 'chemo vacation' or hiatus, at least, for a few months while I try to learn more about the leukemia risk associated with Temodar. I think my body could really use the break, especially during the winter and I'd like a clearer head in making my decisions about this.

Thanksgiving, birthday, Ohio, Temodar & leukemia

Today is my birthday which is also Thanksgiving this year. As usual, we are at my dad and step-mom's place in Lakewood, Ohio for most of the week. My brother Ben, his girlfriend Kate, and my step-sister Claudia are also here, filling, as best we can, their large house.

This last round of chemo went surprisingly smoothly as did the business trip to California. I'm working a lot less this week of course, especially since I can't connect to the Cisco VPN from my Dad's house. I'm using his AOL browser to make this entry and it's a strange experience for me.

On Monday, I had a consultation with Dr. Jon Glass of the Fox Chase Cancer Center in Philadelphia. I expected him to agree that my treatment was the standard of care and either I should stick with the 12 months or perhaps go for 18 months or two years. Unfortunately, what he said surprised me. He suggested that I consider stopping the Temodar immediately because there's evidence that those who take Temodar can end up getting ALL (Acute Lymphocytic Leukemia). This is the same leukemia I had 20 years ago, which was treated partially with the full brain radiation that probably caused the tumor I'm taking the Temodar for. It's a bizarre Catch-22 style circle of deadly cause and effect.

I had heard some talk of the Temodar-leukemia connection before but had put that off to 'the future'. I hadn't calculated in the fact that Temodar has only been in use for about 7 years, which means, well, the threat of that is closer than I'd thought. I don't think there's numbers associated with this risk, probably only anecdotal evidence and I don't know how seriously to take it. Dr. Glass's suggestion was that I might be at an elevated risk because of my history with the disease, but he didn't have much else to offer me except to 'watch and wait' or to try massive doses of Tamoxifen, a breast cancer drug that has shown some promise with brain tumors. This doesn't sound very good either.

So this information is on the back burner for me during our vacation. I'm waiting until we get home to do more research and contact my treatment 'team' about these ideas. Today, I will enjoy the chilly, sunny day, the food, and my family.

Halfway thru Chemo, biz trip in Cali

I finished my sixth cycle of Chemo on Sunday night and left for San Jose, California on Monday. This round went surprisingly well and I'm feeling pretty good already just 2 days afterwards. Even with the three-hours-delayed all-night flight to San Jose followed by the middle-of-the-night 12-passenger-van-is-the-only-vehicle-left car rental and drive through the drizzle to the hotel, I'm feeling pretty cozy in my room tonight.

I'm here in San Jose to meet some of the people I've been working with at Cisco face-to-face and get some things accomplished that have been difficult to do from across the continent. I have mostly been dreading this trip because of the jetlag, craziness and short time frame, but so far so good...

Quite a week

Well, most of this is not related to my health but it's been quite a week thus far.

First of all, everyone should know I lost my cell phone which means I might not have your phone number any more. I'm borrowing an old phone from a friend while I find the right phone for myself, so please do not call me in the next couple weeks thinking that I now have your number again because I'm not going to keep the phone I'm borrowing. The best would be to email me with your info if you think I don't have it.

Second, my friend with pancreatic cancer passed away on Tuesday morning. It's hardly a surprise and I'm glad that I got to see him resting peacefully on Sunday afternoon, but it is sad nonetheless that the world has lost another beautiful spirit like his. I will, unfortunately, miss the viewing and funeral next Tuesday because I'll be in California for work.

Next, this is a chemo week for me, so, well, I don't feel very good.

Last but not least, there was that whole election thing. I am cautiously optimistic about the changes and I feel like there's some room to breathe again.

That's enough for now.

Race for Hope - Philadelphia

Today, Sunday November 5, 2006, I ran in the Race for Hope, a fundraising event for The Brain Tumor Society here in Philly. 5 km is not very far to run, but since it's been a difficult year and I'm not much of a runner, I was pretty happy to make my time of 28 minutes, 25 seconds. It was a chilly but beautiful morning and we ran along the west side of the Schuylkill River.

I was glad for the chance to raise money for an organization that's been helpful to me and having a fitness goal of sorts has beeen motivating me to keep running this summer. On the other hand, these sort of events where 'survivors' are 'honored' makes me pretty uncomfortable. I know that people like to have a face to put to their cause and I get that, but I feel uncomfortable with either being looked at with pity or as a brave or strong 'survivor'. I'm not sure how else you can look at someone you don't know who is supposed to represent your cause.

In case you're thinking otherwise, I don't view myself (or, necessarily, any of the many other people I know living with cancer) as particularly brave or strong because, really, all most of us are doing is trying to continue to live, like, well, pretty much everybody else. While there's often pain and discomfort associated with both disease and treatment, everyone has pain and discomfort in their lives. How do you live with it?

What's going with me these days, cancer-wise, is continuing chemotherapy. This week I have my sixth cycle of Temodar. I take Temodar (temozolimide) in capsule form for 5 days, 400mg for four days, 340mg for the last day. The side effects are reduced white blood cells (I'm currently a little below normal) and platelets (currently OK). I've also experienced elevated levels of anxiety and fatigue the last days of chemo and the week afterwards.

Nausea is also a very common side effect, so I take 8mg of Zofran each morning I take the Temodar. However, constipation is a side effect of taking Zofran (not everyone seems to experience this), so I include an ever-evolving combination of yoga, herbal teas, and foods that assist elimination. This month, I've purchased Senna tablets as well since the feeling of sludge in my intestines has not really gone away all month.

My neurologist has told me that she recommends continuing Temodar for another 6 months after this cycle. I am considering a second opinion, but I'm guessing that the only difference will be the amount of time on Temodar. I'm getting MRIs every two months and the next will be on Monday, December 11.

More on my mind these days, however, are the conditions of a couple of friends. One is from my support group so I will not mention his name because of confidentiality issues. I can say he is living with pancreatic cancer and he is doing quite poorly - he has been in the hospital for four weeks and when he leaves, he will be in hospice care at home, which usually means he will be treated for pain only. The other is Louise Gillete who is closer to my age and condition - you can read her blog if you like. Her diagnosis is identical to mine, but her tumor is not entirely operable and she is facing a decision about a third operation to remove new growth. Louise has been a sort of mentor in living with a brain tumor for me, giving me valuable advice on treatment, nutrition, finding support, and legal issues.