Friday, November 30, 2007

A Reinterpretation of Recent Events

It’s been an intense past 10 days for me in Cancer World. With new clarity, I need to retract part of my last blog entry. I believed what I wrote when I wrote it, but after talking to a few people close to me and my situation, I have a new take on what my doctor was telling me in my visit with him the Wednesday before Thanksgiving. I think he was telling me to enjoy this time right now, there would be more disease and chemo later, and when that time came, he would be there to help me through it. Bottom line, I wanted to be more aggressive in fighting off a recurrence and he wanted me to enjoy the holiday. So, we’re now back together on the same page.

I have been exploring a few new avenues and it is still a rocky ride. One avenue was a Head & Neck cancer vaccine trial at the University of Pittsburgh Cancer Institute. The vaccine used part of one’s own blood cells to boost their own immune system. It is in early trials, 10 people over the past year. So far, it is showing success. Unfortunately, after having my blood tested for a specific blood type, HLA A2, I was negative for this blood type and therefore ineligible for this trial. Nothing ventured, nothing gained.

I am exploring the use of another trial drug following a few different avenues and also keeping in mind the Avastin / Tarceva path option discussed last week with my doctor. My friends and family have been very generous in helping me explore some of these options via their contacts and knowledge. You know who you are and thank you so much for all that you have done.

I’m continuing to exercise and build up my stamina. That usually feels really good. I’ve also been able to back off of some of the pain and anxiety medicines. Ideally, I could get rid of them all together. I went on a liquid diet about 2 weeks ago and that seems to be helping with letting my tongue heal. But, I’m looking forward to real food again in the near future.

Have a terrific weekend. Take care everyone.

Monday, November 26, 2007

The Roller Coaster Ride Continues

First off, I hope everyone had a wonderful Thanksgiving with family and friends. We had a lot of wonderful visitors.

I haven’t written in a week due partially to the holiday, but mostly because I’m digesting the most recent discussion with my primary oncologist. We met with him last Wednesday. My interpretation of his message was that 1) he felt that I still had cancer, 2) I was out of options, and 3) he believed the best life for me would be to not continue any more treatment. Basically, go home, give up hope for a cure, and let nature take its course. He called us at home on Thanksgiving morning (about 12 hours after we met with him) and said he rethought our discussion and would like to explore one more chemo option, a drug cocktail of Avastin and Tarceva to be delivered sometime in December. So, I’m mulling this around at the same time I’m exploring a drug currently undergoing clinical trials for Head and Neck and other cancers. Although this drug shows a lot of hope, I don’t qualify for any of the 27 trials currently in progress across 20 countries due to prior treatments. I’m also beginning to explore obtaining this drug through a “compassionate use” program that some drug companies offer. Needless to say, this is confusing and depressing. As I figure this out, I’ll provide a new blog entry.

Nobody ever said that cancer was easy; this past week was a real reminder of how tough it can be. Take care everyone.

P.S. To justme519 (Tanya). Thank you for keeping up with my progress and your best wishes.

Saturday, November 17, 2007

Randy Pausch update

He is the Carnegie-Mellon University (CMU) professor that I wrote about in this blog on September 20 2007 who delivered his “last lecture.” I like to follow certain stories and topics and Randy Pausch is one of them. He was being treated with two palliative chemo drugs, Gemcitabine and Tarceva. These are two of the same chemo drugs I have been on this year, but in my case the hope was for a cure, not palliatative. Randy has pancreatic cancer and was given a few months to live a few months ago. The palliative chemotherapy that he had taken for six weeks to try slowing the spread of his cancer appears to be doing more. The tumors in his spleen are gone, and the dozen tumors in his liver are either stable or shrinking. His doctor said that 85% of patients in Randy’s situation show NO response with these drugs. Randy looks to be in the fortunate 15% who are showing a response and his response seems remarkable. As other cancer survivors, physicians, and caretakers have reminded me over the past two years, each of us is really a statistic of one or zero, we either make it or we don’t. With Randy gaining several extra months of healthy life, he is now eligible for other, more experimental, treatments. His doctors at the University of Pittsburgh Cancer Institute (UPCI) are looking into other chemotherapy drugs and a custom vaccine made from his own cancer cells. Randy continues to have a positive outlook, but not in a Pollyannaish way. As Randy’s story continues, I’ll be sure to provide an update. He is now a beacon of hope for other cancer patients. And, to emphasize one more important point, a custom cancer vaccine from one’s own tumor cells, how cool is that? Yet another recent development in the fight of this killer disease.

Thursday, November 15, 2007


My preparation in getting ready for my next chemo treatment is coming along. I have done a light workout each day for the past six days and plan to continue working out daily as long into my next chemo cycle as possible. My workouts consist of light aerobics for 30 minutes and then 45 minutes using 5 and 10 pound weights with a bit of head, neck, and back stretching thrown in. It’s still a long way from the 35 pound weights I used to use. However, it feels great to be active again.

Chemo begins in 10 days on November 26 2007. I won’t know the chemo regimen until my clinic visit on November 21 2007. My doctor is still exploring the best possible treatment. It seems like there are so many new options currently hitting the market. Plus, we want to see the results from the new CT scan which will take place on November 20 2007. The pain in my tongue continues to be a serious concern. The pain seems to have subsided a bit, but it is still impacting my ability to eat and talk. I have been able to back off on some of the extra pain medicines and am almost back to pre-surgery pain medicine levels.

The weather here is phenomenal, high 60s and clear skies. It’s really a joy.

I’m not sure how many of you are following Leroy Siever’s cancer journey on the NPR blog website. He is really struggling. He had major back surgery about 6 weeks ago to replace one or more vertebra in which cancer had taken over and a serious infection set in… not to mention a stroke during or immediately following surgery. Now he has a pump attached to his body releasing antibiotics directly into the surgical site in his back every few hours. I liked his blog entry today (11/15/07) which can be seen at URL: He has almost forgotten about his lung cancer (which is very serious to his longevity) and has replaced that focus with what could be an even deadlier foe. He makes a point that cancer has become a way of life for him with its ebbs and flows. He also realizes that once he recovers from the infection, the cancer will still be waiting for him. In many ways, I feel the same way. It is something that one learns to live with and more than likely, even at times when there is no evidence of disease, it will always be waiting. Cancer is almost like the perfect storm, a foe who is patiently aggressive to the detriment of the victim.

Take care everyone.

Tuesday, November 13, 2007

The Complete Idiots Guide to Cancer

I did a web search to see if anyone had written a book called, “The Complete Idiots Guide to Cancer.” I didn’t find one. The closest match I found was a book titled, “The Complete Idiots Guide to Living with Breast Cancer.” One of the purposes of this blog is the educate people about cancer. I’ll scratch the surface on two topics today: Cancer cells and chemo-brain.

Cancer Cells. This is pretty basic stuff, but I found it interesting. A tumor is a build up of cells. There are two types of tumors: benign and malignant. A benign tumor is an abnormal growth of normal cells. This can cause health problems, but can usually be addressed via surgery to remove the tumor mass. A malignant tumor is an abnormal growth of abnormal cells. These will cause health problems and can be addressed using surgery, radiation, and chemotherapy. As I’ve mentioned before, cancer patients refer to this as the slash, burn, and poison treatment methods. Cells within the human body replicate on different time tables. Cells which line the stomach wall may divide every 24 hours to replace the cells which have been destroyed during the process of digestion. There are other cells, such as those in one’s nerves, which never (or rarely) divide. There are two main phases to cell growth, the Interphase and the Mitotic phase. For a normal cell to replicate, it must meet 3 criteria: sufficient growth, the need for a new cell, and undamaged DNA. To move from the Interphase to the Mitotic phase, it must meet two more criteria: successful DNA replication and sufficient growth. In cancer cells, these checkpoints do not exist and cancerous cells can divide to their hearts content eventually forming detectable cancer tumors. Once cancer cells enter the blood stream or other paths of least resistance (e.g., the nerve structure), they can move throughout the body. If they find a stronghold somewhere away from the original tumor site, this is called metastasis. Cancer patients refer to these as Mets. In my case, I had extensive perineural invasion of cells within the nerve in my tongue. This was the finding following my surgery in July 2006. As a result, the cancer in my body has traveled from the original tumor site to other areas, but not too far from the original site. It has all stayed in my head and neck area. The normal progression of cancer for people with Head and Neck disease has been cancer metastasizing into the lungs. So far, I’ve been lucky in this respect.

Chemo-Brain. This is a lesser-known side effect of chemotherapy and it causes cognitive dysfunction. It is only recently getting more attention. As there are increasing numbers of long-term cancer survivors who are trying to get back to a normal routine, that's where one begins to notice things like the cognitive side effects of chemotherapy. The shifts can be subtle. It may result in a lack of an ability to concentrate, multi-task, or remember things as well as one used to. The more one’s work or personal life demands these functions, the more one may notice the subtle side effects. Subtle or not, chemo-brain can be frustrating to patients, who may suddenly find themselves unable to accomplish tasks they formerly completed with ease. And it's a mystery to doctors, who are still trying to understand what causes it and who is likely to suffer. The good news is that there are new studies taking place to yield insights into better identifying and tackling this side effect. I know that I feel some of these side effects. They are subtle though. I compensate for it by making greater use of to do lists.

I hope this was informative and at least a little bit interesting today. Take care everyone.

Saturday, November 10, 2007

Getting Ready for my Next Chemo Cycle

A female friend of ours FINISHED the New York Marathon last Sunday. Congratulations CB on the training and the accomplishment! There was a great picture of her on the Internet with Katie Holmes (Tom Cruise’s wife) running just behind her about two thirds of the way through the race.

My next chemo cycle begins in 2 weeks and 2 days, not that I’m counting. I will begin my training today for this other type of marathon. I just recently learned the following about cancer treatment, fitness and survival. I guess I knew it before as it is intuitive, but had never seen any studies on it until yesterday.

A little background it is order. The physical fitness of patients is rated by their doctors. A number of “performance scales” can be used in this measurement process. One popular rating scale is the ECOG / WHO / Zubrod score. It rates patients on a 0 to 5 scale as follows:
0 - Asymptomatic (showing no evidence of disease)
1 - Symptomatic, but completely ambulant
2 - Symptomatic, <50% in bed
3 - Symptomatic, >50% in bed, but not bedbound
4 - Bedbound
5 – Death

Most people try to avoid being a 5. A little gallows humor. I would rate myself currently at a 2 level. During heavy periods of chemo or following more significant surgeries, I have been in the 4 category. I have also been in the 3 category, bordering on a 4, for more than a month at a time during the latter stages of some of my chemo treatments. Aggressive chemo can be very debilitating.

More background - I received the newsletter from my cancer center yesterday. In it was an article titled, “Fatigue as a predictor: advanced lung cancer.” As you know, I don’t have lung cancer, but Head & Neck cancer is so far down on the list of types of cancer (and therefore receives relatively little funding) that much of what my doctors model their treatment plans on are the success of lung cancer studies. They feel there is a high enough correlation between lung cancer and Head & Neck cancer that there is validity in this approach. Based on the newsletter article I did a little web surfing and found other articles backing up the one in my cancer newsletter.

Okay, it’s taken me a while to get to the point in this blog entry, but here it is… there is a high correlation between one’s fitness going into chemo and their prognosis. In one study of treatment-related death (TRD – it seems like there is an acronym for everything), 2.3% of the patients died from chemo toxicity. It’s not a big number, but is would suck to be in that 2.3% group. TRD for patients with a Performance Score of 4 were 36 times (yes, 36) more likely to die from chemo toxicity than patients with a performance score of 0. Patients with a performance score of 2 were almost twice as likely to die from chemo toxicity than a patient with a performance score of 1. Going back to the article in my cancer newsletter, the conclusions made there was more qualitative. But their bottom line was that those with a better PR scores could tolerate their chemo treatments longer and were therefore more likely to complete them. That in turn led to a better prognosis.

Many of you probably remember from a few months ago when I threw in the towel and couldn’t complete my last round of chemo cycle 8. I was too fatigued and honestly felt like the chemo would kill me before my disease. As such, I still don’t regret not moving forward with that last round. I have reached the conclusion though that if something is going to save me, it is going to be a systemic solution (like chemo) versus a point solution (like surgery). That’s not to say that surgery doesn’t have a place in my future treatment options, but I’m convinced surgery is not going to cure me whereas I still have the hope for a cure with some systemic type treatment.

I will workout today and will try to do some type of workout everyday going forward to move from a 2 to a 1 on the performance rating scale in preparation for my next chemo.

Have a good weekend and take care everyone.

Thursday, November 8, 2007

I have a plan

I guess for those that know me, having a plan is not a surprise. For me though, planning borders on having an OCD. It’s probably what made me relatively good at what I did before cancer. I liked having a plan. Not having a plan made me uncomfortable. Today’s blog entry segue is that I moved my chemo doctor’s appointment up to yesterday from next week. Two forces drove this change. First, I have some new pains and small inflammations in my tongue and necks area which may not be surgery (which was 3 weeks ago today) related (i.e., they could be disease recurrences) and as such are causing me a fair amount of anxiety. And second, I didn’t have a treatment plan. That was driving me absolutely nuts.

I e-mailed my chemo doctor at 4 A.M. yesterday morning asking if I could move my appointment up and the why behind this request. A minute later he e-mailed me back and said to come in at noon. One will never be able to say these dedicated people don’t work hard long hours. I waited about 3 hours yesterday, but that’s a story for another day. I spent about 45 minutes of high quality time with my doctor’s Physicians Assistant (PA). PA’s were not a profession with which I was familiar before entering Cancer World. These are highly trained and educated professionals that work as a team with their doctor. They do exams, answer questions, provide insight, suggest options, etc. At times it is hard to tell the PA from the doctor. I then met with my chemo doctor. We discussed chemo drug options in some depth and put a solid plan on the table. Here it is:
1) CT scan for a new baseline – 11/20 (Tuesday)
2) Clinic appointment – 11/21 (Wednesday)
3) Chemo begins – 11/26 (Monday)

We haven’t come up with the exact chemo drugs just yet. My doctor wants to give it a little more thought and also talk to some of his colleagues. I’m in good hands so I’m okay with that. Until we get the scan results and decide on the drugs, we won’t know the frequency or duration of how long the chemo will be administered. I don’t have the times yet for these appointments, that will drive me a bit crazy until they show up on my schedule, but I can live with that for now. We have visitors coming for Thanksgiving. Fortunately, the chemo will not begin until the Monday after the holiday.

That is all for today. Stay well.

Tuesday, November 6, 2007

Current Picture

Many of you that read this blog know me. Some I see frequently, some I have not seen before my cancer diagnosis 3 years ago. The above is a picture taken about 2 weeks ago. It is a friend, my sister, and me. Yes, that’s me on the right. I’ve lost 60+ pounds since this started. Not exactly the diet method I had in mind, nor one I would ever recommend. I thought that some of you might be curious what I look like after 7 surgeries, 35 radiation treatment, and 8 chemo cycles. They really do amazing work with facial reconstruction. I do have numerous scars on my neck, but they are not really visible in this picture.

I found a new Internet resource for cancer victims, survivors, and care givers. It is called the Cancer Survivor Network ( It includes brief stories and personal web pages by 1000s of people touched by this disease. It is searchable by cancer type, gender, etc. For me, it’s helpful to see stories from people with similar disabilities, treatments, and decision requirements. The caregiver stories are also compelling. I hope you never have a need to go to this website, but if you do, either for yourself or a loved one, know it is there. You have to register to gain full access, but registration is free and only takes a few minutes.

Take care and stay healthy.

Sunday, November 4, 2007

Science Fiction… Coming to a cancer hospital near you?

The thing that is intriguing about science fiction is that eventually, some of the fiction turns to fact. Remember the James Bond car tracking device in Goldfinger or the Star Trek breast communicator? These were fiction at one time, now they are almost commonplace with GPS positioning devices and Bluetooth cell phone ear buds. I have been reading about a new approach to destroying cancer cells this weekend. It reads almost like science fiction.

The technique uses carbon nanotubes and ultrasound to destroy cancer cells and tumors. See Wikipedia for an explanation of a nanotube. To give you the feel for the size of a nanotube however, the thickness of the walls of a nanotube can be 1/50,000 the width of a human hair. That means that the walls of 50,000 nanotubes piled one on top of the other can be as thin as a human hair. The length of a nanotube can be up to 10,000 times longer than the width. So, even there, you would need 5 of the longest nanotubes stacked end-to-end to approximate the width of a human hair. Nanotubes can be filled with chemo therapeutic medicines. The next trick which really seems like the sticky point to me at this juncture, is how does one deliver the nanotubes to the cancer cells and tumors. The holy grail in cancer research currently addresses this question. It is seeking a way to do just that. Cancer cells have different receptors than normal cells. Plus, different cancers have different receptors in their cells. The newer chemo agents, many of which are in phase I, II, and III FDA trials are genetically engineered to seek out and attach themselves to these different, yet specific receptors. The next step, once the nanotubes are attached to the cells, how does one release the chemo or otherwise use the nanotubes to destroy the cancer. This is where the ultrasound comes in. In studies on lab animals, an ultrasound beam, believed to be otherwise harmless, has been directed over the body for two minutes, the effect of which has been to release the chemo agents or to heat up the nanotubes to destroy the cancer cells or tumors. The success in rabbits with aggressive cancers has met with 100% tumor eradication. One article written a year ago stated that human trials were expected to be about a year away. There are articles which site potential for early cancer detection, cancer cell and tumor eradication in humans, and far less collateral damage than from the current treatment methods.

I talked to a very well respected cancer researcher about this technique about 2 – 3 months ago. She has been exposed to this research and was very excited about it. However (yes, there’s the “but” in cancer treatment), she felt that for this to become a standard of care could be 10 – 20 years away. I respect this researcher greatly. My challenge to the cancer community is to move as quickly as possible. One doesn’t get to say this too often about one’s work, but in this case “LIVES ARE LITTERALLY AT STAKE.”

For more information on the topic, I’d suggest Goggling the terms nanotube, ultrasound, and cancer. You’ll get some great hits within the first two pages.

Take care everyone.