Still on schedule...

Had a pretty good meeting with my oncologist yesterday and it doesn't look like I have to make any urgent revisions to my timetable. The radiation seems to be working on my back, so that's good. Dr Margolin suggests a treatment of Zometa, an intravenous drug that reduces the complications that can result from bone cancer, so we scheduled that for mid-August, after I get back from San Diego and Ken's and my big birthday party on the 15th. Can't let this little illness get in the way of fun, you know! We discussed my throat issue (Amy and An were there) and it is Dr. Margolin's opinion that it probably won't get any worse, and radiation or surgery won't fix it so we'll just leave it alone. The spots on my neck and under my ear are getting larger and we'll watch them, but won't do anything unless they bother me. At the time of our meeting I was not having any pain, but naturally when I went to lunch right after I felt some chewing so I'll have to keep on top of it. At my radiation appointment I talked with the doc and he suggested they could do some localized radiation there. Since it seems to be working on my back I will keep that option open. So at this point we'll do the Zometa mid-August and then start high dose IL-2 at the end of Sept or beginning of October. Now I just have to schedule fun things to do during the open weeks.

And on the fun issue, Amy might come with me on my trip to SD for the reunion if I drive. Probably not the Porshe, but would be nice to have company and someone to share the drive with. I can always ditch her in SD if I get lucky ;-), she'll understand!!

A couple photos

Just took these...it's 8:30 am and couldn't be more beautuful as the float planes start to come in from up north (the one we'll take is a Cessna, a bit smaller than this) and the rowing clubs are out practicing. Summer in Seattle!! If you click on the images you get a larger view.

First week done

I have to admit that after the first week the whole thing is a little anti-climatic! That's probably a good thing, too. It takes 20 minutes from the time I hop on my bike until I'm laying on the radiation table, and the treatment takes 10 minutes tops from start to finish. I haven't felt a thing, and I guess any results will begin to show up after next week. I've actually noticed a bit longer times between when I need some pain meds, so maybe it's working, or maybe it's just my mind being hopeful.

I'm getting some pretty good swelling in two places on the side of my neck and under my ear, so I'm seeing Dr Margolin on Tuesday to start an action plan. We will probably want to take these out but also need to discuss radiation evaluation, timing of IL-2 and whether the things in my throat need more attention. I'm less fearful of the side effects of radiation now, but the throat thing still worries me a bit. But with so many things to pay attention to it's getting a bit more complicated. The folks at the UW Cancer Center are great, and the weather has been wonderful. Jan and Don are here from FL and go home tomorrow. This afternoon we're taking the 20 minute sight-seeing float plane flight that takes off right in front of my houseboat and tonight we'll go with Rick and Joyce in their boat to have Dungeness crab at Fisherman's Terminal. Much fun.

First treatment done

Well, I had my first radiation today and there was nothing to it! Didn't feel a thing. Even the tattoos they put on me are tiny, so all in all it was very good. Andrea came along and the whole thing took less than an hour, and this session was longer because they did some confirmation x-rays first. The actual radiation session was only about 10 minutes. Now I'm scheduled for a treatment every weekday thru August 3. They will only take 15 minutes or so and I do plan on cycling over each day. Feel fine today, of course, and I'll post again in a few days.

Radiation starts tomorrow

Tomorrow at 8 a.m. I'll get my first treatment. I have to admit I'm kind of nervous but I have hopes that this will produce some positive results. My younger daughter, Andrea, will go with me the first time, and from there on I expect to cycle to and from since the UW hosp is so close. I am having a bit more pain in the back, but meds take care of it. On the good side, the Tour de France is broadcast live at 5:30 every day here, and so far the oxycodone wears off just in time to get me up to enjoy Lance, Alberto and the rest of the Astana crew. The next few days should be very exciting. I think Contador is going to be the final winner, but Lance is doing great and you never can tell in the Alps.

Interesting anecdote regarding pain killers....when I was at the new Cafe with friends last weekend I think I had taken maybe one oxycodone too many and at one point while trying to introduce friends from Portland to my granddaughter forgot or mixed up all their names!!! How embarrassing - you know who you are, thanks for being patient with me! Now I have visitors wear "HI, My Name Is.." badges ;-)

Skin cancer in perspective…….

I know, I just can’t help being a trainer. I’ve received reactions and comments over the years that suggest some misunderstandings about skin cancer, so here is a short lesson that may answer some questions.
More than 1 million cases of non-melanoma skin cancer are diagnosed in the U.S. each year, making it the most common of cancers. Most of these are basal cell (the most common) or squamous cell carcinomas. Both of these cancers are easily treated, rarely spread and rarely cause serious problems when caught early. A quick bit of outpatient surgery and that’s it. And here’s the most important point: they do not turn into melanoma, nor is there evidence that they increase the risk of melanoma. There seems to be a strong association with UV exposure and these cancers, so use your sun screen.
Melanoma, the most dangerous skin cancer, is diagnosed in about 70,000 patients a year, and if caught early and removed has a 99% survival rate after 5 years. Obviously I fell l into the 1%. About 11,500 people die from melanoma each year. They don’t really know what causes it – there is not as strong an association with UV exposure and it is not significantly hereditary (good news for my kids). And, obviously, they don’t have any good ideas about how to treat it, either. Melanoma and renal cell cancers are the big mysteries today.
As a basis for comparison the most common cancer in women is breast cancer, with 192,000 new cases each year and 40,000 deaths. The most common in men is prostate cancer, also with 192,000 new cases but a smaller number of deaths a year, 27,000. Lung cancer has fewer new cases (219,000 men and women) but accounts for more deaths (160,000 combined) than any other cancer, but it’s tied to smoking….none of you still smoke, right?
I drew on the Mayo Clinic and American Cancer Society websites for this info. If you want to know more you can look it up yourself. End of lesson.

Tues Jul 14 - radiation prep

Pretty good news today. There is a little hitch in my throat, but nothing I can't live with, so that's that for the time being. The radiology docs did all the targeting and prep for radiation and the doc says she wants to start first thing next week and be done in two weeks. That means I should be finished by the 31st. Hurray! She also said that while she had to warn me about all the possible awful side effects (growing a 6th finger, being able to hum "Yankee Doodle" from my belly button) I probably would only have some mild fatigue and maybe some other acceptable GI stuff. So I'm very encouraged that the road trip to SD will go on as planned.
The UW hospital is only a couple of miles away so I rode my bike and plan on it every time if I can. Beautiful day here in Seattle, Patty Bentley and Dave Donley coming over to grill steaks on the deck tonight. Fun.

Looks like radiation time.....

July 2009: The CT and MRI's show a couple of new small tumors in my neck area, but the areas of concern now are my spine and the older tumor in my neck. The concern is that the swelling of lymph nodes and thyroid gland may constrict my breathing, an important consideration because IL-2 causes everything in your body to swell up during treatment and chocking to death is not a desirable side effect. So in the last week I've seen the radiation and the ear/nose/throat docs. The ENT doc feels that after careful study I don't have to worry too much about the swelling, and as a matter of fact the catching I'm getting in my throat is probably related to undiagnosed reflux, so that's actually good news. I really didn't want to radiate my throat!

The spine is another story. If the cancer continues to weaken my spine I could end up with a cracked vertebra, so it's a good idea to try to stop the growth of that tumor. I'm finally getting enough pain that it requires oxycodone on a regular basis, so no point in waiting any longer. Tomorrow, Tuesday July 13 I go in for some additional tests on my throat, just to be sure, and also a radiation simulation. When I get out I'll know the schedule. I'm hopeful that we can get it done and I can still make it to my 45th high school reunion in San Diego on August 8. We'll see. I was also hoping to put of IL-2 until October, after the best weather here in Seattle is over, but now I may have to let my body set the schedule. Heck, I've got two or three models still partly built, so it's not like I don't have anything to do. And if I have to fly instead of drive to SD, that's not the worst (tho I really have a bucket list thing about doing the Big Sur in the Porsche!). More tomorrow.

Now that surgery isn't an option

February, 2009: Another scan reveals that in addition to the tumor in my jaw, there are now additional tumors in my spleen, neck and lower spine. At this point I'm still in no pain, but now that surgery isn't an option it's time to look at clinical trials and other options. Plus, Bend is not the best option if I have to do IL-2 or anything else, so moving to Seattle looks like the best idea. Over the next couple of months I apply for a clinical trial in Portland, a promising immunotherapy using Oncovex, a drug derived from herpes-simplex virus and genetically altered to attack melanoma cells instead of creating herpes. Phase one and two studies show much better than average results with few bad side effects, just what I would like to be part of. I have some conversations with Joyce and Rick Miner in Seattle about renting their houseboat, and it looks like I'm on my way to Seattle.
May, 2009: I've completed my move to Seattle and am now settled in the fantastic houseboat on Lake Union. Have had my first visits with Dr. Margolin at the Seattle Cancer Care Alliance (Part of the Fred Hutchinson Cancer Research Center and the University of Washington Hospital).
June, 2009: Can't participate in the Oncovex trial because of the bone tumors. Oh well. It's been 4 months since the last scan, so Dr Margolin schedules CT and MRI scans to get a handle on where I am now and go from there.

Treatment options

Advanced melanoma is extremely difficult to treat. Chemotherapies and radiation treatments that commonly cure other cancers have no effect on melanoma. To get a perspective, go to http://www.centerwatch.com/clinical-trials/listings/studylist.aspx?CatID=196&mp=shade and see the scores of clinical trials currently active. And this doesn't count the trials that have already been completed (failed) or are not accepting new patients. There are also tons of 'alternative medicine' ideas; various combinations of roots and berries that sound good, but have never been proved to do anything at all.

Right now there are two FDA approved treatments for melanoma: interferon and high-dose interleukin 2. Interferon is a year long treatment that makes you feel sick as a dog, might slow the progression for a few months in about 20% of cases but has never resulted in remission or increased life expectancy. I decided to pass, placing the ability to fully enjoy my life as the higher priority. In other words, I'd rather be fishing with friends than be in a hospital bed, especially when the hospital stay will not allow me to live longer.

The other option is high-dose interleukin-2. This is what I am currently considering. It only has positive effects in about 20% of cases, usually in the form of slowed growth or some shrinkage of tumors. BUT - in about 5% of cases there is full remission. Why haven't I done this yet? Because it still doesn't work 95% of the time and is very toxic. The short story is you go into intensive care and they start administering the IL2 every 4 hours up to a max of 12 times. they monitor you carefully and when your body can't tolerate it any more they stop, usually at about 9-11 times. That takes two days and they keep you in the hospital for another 3 until you can go home to recover for another 9 days, then repeat. It's a month in hell, with small chance of positive result, but it is not the only reasonable option so assuming my heart can take it I'll do it.

Timeline from first diagnosis through my time in Bend, OR

September, 2003: First melanoma discovered, a large one on the top of my scalp. It had been hidden by my hair for a long time probably. It was removed by plastic surgeon Dr. Michael Reilly only a week later. Because they had to have 2cm of clear margin around it I ended up with 50 staples across my scalp to sew it up. Heck, I practically got a face lift out of the deal. It was larger than a quarter but mostly less than 1mm thick, so subsequent advice suggested I had a 95% chance of no further recurrence.
August, 2006: Well, so much for the 95% thing. Shortly after Claire and I had decided to break up we discovered a second melanoma, a couple of inches below the first. Surgery at the University of Miami Hospital later shows that this one is over 6mm deep, so I get re-classified to stage IIIc. Naturally I asked the question: how much time do I have? The answer was 75% of stage IIIc patients die within 5 years of diagnosis.
October, 2006: small melanoma discovered and removed from margins of surgery in an outpatient procedure. Start doing Leukine, an immunotherapy injectible, 14 days on and 14 days off. Stay on it for 6 months until the next tumor is found.....
March, 2007: Even though a PET scan (they inject you with a radioactive glucose solution and then scan you. Cancer cell have a more aggressive uptake of the solution so they literally glow in the scan, making it easy to see tumors) had been clear a month prior, an regular exam shows a swollen lymph node in my neck. During surgery they find melanoma infected lymph nodes have completely encircled one of the major neck muscles (sternocleidomastiod) so they remove it, 23 nodes and the left jugular vein. 8 nodes subsequently test positive for metastatic melanoma (which I will refer to as MM from now on).
May 2007: I decide to move to Bend, Oregon. I'd been sales manager for Rado watches in the Southeast for 10 years and in the Caribbean for a year. But I wanted to be nearer my daughters, Amy and Andrea, in Seattle. Claire was settled in her new place. And I could retire from Swatch Group with full insurance coverage. So I retired, sold the house in Hollywood, FL, packed up and moved to Bend, Oregon in September. Turns out my timing was perfect in just about every way, because the economy immediately tanked.
November, 2007: Welcome to Bend, you have to have more surgery. I could feel a bump in my neck on the drive from Miami to Bend, so got a new oncologist right away after I got settled in. Had 9 more lymph nodes removed, one tests positive for MM.
March, 2008: Bend is a really cool place and I'm doing lots of fly fishing. Have to interrupt my fun for more surgery when a PET scan glows. This time it's the parotid gland (the saliva gland) on the left side.
July, 2008: We find and remove a tumor in the old scar tissue from a prior surgery.
November 2008: We reach a turning point at the discovery of a tumor in the joint of my left jaw. Surgery not a reasonable option, so time to reconsider my options......