One More Week

Yesterday was my 18th day of radiation and chemo. That means I have 6 more treatments. On Thursday, the doc said I can double up next Friday to get everything out of the way, and be finished. It'll be on heck of day, but I think that is what I am going to do. So next Friday I'll go in for radiation in the morning, then again at night. Fin.

With that out of the way, the next thing will be a trip to Omaha for a followup consult with Dr. Loggie. We will be leaving LGA on Mar 2, staying overnight in Omaha, then I have to be at the hospital at 7 AM to check in and start drinking my barium (blech). CT scan will be at 9 AM, and then I'll see Dr. Loggie at 10 AM. Hopefully we can meet Kat for lunch, then it will be off to the airport to catch our flight home. Another whirlwind trip.

If Dr. Loggie says he wants to proceed with another surgery, then we will probably head back there in three or four weeks for that. I'm still hoping he'll say another surgery isn't necessary...

As for how I'm doing, the chemo and radiation is making me exhausted. I'll be glad to get this over and done with.

That's it for now. Thank you all again for your thoughts, prayers, good will, etc.

Kevin

Over The Half Way Point

Just wanted to let everyone know that I am officially over the half way mark on my radiation/chemo treatment. Whoo Hoo.

Tomorrow (Monday - 1/25) will be treatment #14. With a total of 24, that will mean after tomorrow, I will have to go only 10 more times. I won't be sad at all to say "adios" to that place.

The treatment themselves aren't that bad. I lay down with my hands over my head. They line be up (using tattoos and targets drawn on my stomach and sides), then rotate the radiation machine at seven different angles to zap me. That way the tumors are getting over 100% of radiation, but since it is hitting me at seven points, my skin is not getting burned.

I am also taking Xeloda, an oral form of 5FU chemo. No horrible side effects, but in conjunction with the radiation, it is making me really tired. I have the weekends off (no radiation or chemo), so by Monday I start to feel somewhat normal, and then by the end of the week, I feel pretty crummy.

So, you might want to know if this is being effective. Honestly, I have no idea. I had my tumor markers taken right before I started the treatment, and I am sad to say, they jumped pretty dramatically since last time. My CEA (normal is between 0 - 2.5) went from about 7.6 to about 21 before treatment. I had them taken again last Wednesday, and the CEA is now at 29.3. Quite a jump from just a couple of months ago. The CA 19-9 went from 40 a couple to months ago to 56 before the radiation treatment started to 65 from last Wed. To say the rise is disconcerting is an understatement. I'm not sure what would cause the quick jump, besides tumor growth that is.

So, apart from all of that, I am doing relatively well. Tired a lot, but I am getting some exercise with walking Elke. When it's nice out, I take her to the dog park so she can play with other dogs, which helps tire her out.

After the radiation and chemo, we will head back to Omaha to meet with Dr. Loggie. I'll get another CT scan to determine if the treatments did any good, then he will decide if it is worth doing another surgery to try and get the remaining tumors. I would love it if he said something along the lines of "The radiation was more successful than we thought! Looks like the tumor is dead and we don't have to do any surgery." That would be sweet. The other possibility is he will say something like, "The radiation was successful, and has shrunk the tumor enough so I can go in and remove them." The worse thing that he might say is, "Hmmm... doesn't look like the radiation did any good at all. Not much else we can do now but continue to just wait and see..." That would suck.

That's it for now. Your thoughts and prayers are, as always, appreciated.

Kevin

HIPEC Procedure to Be Profiled on TV Tonight

Roni here.

Tonight's airing of Grey's Anatomy will be including in its story line the HIPEC (heated chemo wash) procedure that Kevin had in 2004, which saved his life.

This exposure is very exciting to us, as too many in the medical and insurance communities still say HIPEC is experimental, though it has meant the difference between life and death for so many with peritoneal/appendix cancers, and is now being explored for other types of cancer.

I hope that this brings increased awareness that results in better survival rates for many who are not aware that this procedure is an option for them.

The Fun Starts Again...

Yep, it's that time again. Tomorrow I go see my oncologist for a quick checkup, and tumor markers. Then Tuesday, it's time for my first radiation treatment. I'm a little nervous, but have been told that the side effects should be minimal. That's what I'm hoping.

The radiation treatments will be 5 days a week for 5 weeks. Supposedly it will only be about 20 - 30 minutes from start to finish. I'll kep you updated as things progress.

On a positive note, Roni and I had a great time with my family in OR during the Christmas holiday. We had enough miles (had to buy a few) to fly first class, which for tall people like us, made the cross country trip much more comfortable.

We left Elke with a friend in Philly who took great care of her (thanks Keri). And we were very glad to see her after a week. She was very glad to see us too. :-) We sure did miss that little nudnik.

Testing

Being the geek that I am, I am trying out the BlogPress app for my iPhone to post to my blog.

Kevin

- Posted using BlogPress from my iPhone

I Got Me Some Tattoos

No, no Harley tattoos. No Air Force tattoos. None that say "Mom", or "I heart Roni".

Just 5 simple dots that show the radiologists where to place me when it's time for radiation.

My radiation treatments start Jan 5th, and my last one will be Feb 8th. I'll be having them 5 days a week, for 5 weeks.

And the bad news is, the Doc tells me it's not going to make me bigger and stronger like in the movies from the 50s and 60s. Bummer.

Radiation, Chemo and Another Surgery

Just a quick update. I have talked to my oncologist and a radiation oncologist, and have decided to go for the radiation and chemo treatment, followed by another surgery.

Barring a miracle, this is really my only shot to beat this once and for all.

I go in for a planning session on Dec 1st. I'll get a CT scan, sans contrast (yippee), and tattooed where I am going to get hit with the radiation.

The treatments will be 5 days a week, for 5 weeks. As we are going to OR for a week to see my family during the Christmas holidays, I won't be able to start the radiation until we get back. So my first day of radiation will be Jan 5th (the doctor who will be doing the radiation does not work on Mondays). This means I should be finished the first week of Feb.

I will also be taking Xeloda, an oral form of 5FU chemo. I have taken this before and it is fairly tolerable. This time I will only be taking it the days I get radiation, so that might make it a bit easier. Other times I took it for 2 weeks straight, then had a week off. Oh, and this time I will also be taking a lower dose.

I am hoping that 6 to 7 weeks after the radiation, providing it did what we are hoping it does, I will go in for what we are praying will be my 5th and last surgery to remove the tumors.

One thing I learned from watching movies made in the 50s and 60s, is that getting hit with radiation can make you bigger and stronger. I'm hoping that's the case with me. :-)

As things proceed, we'll keep you updated.

Kevin The Roentgenizer

I'm tired of being 1 in a Million

So it's not enough that I have to have a rare form of cancer, but I also have to have a case that does not act like it should. Part of that is good, part of that isn't.

Here's the deal. I have three tumors that were not able to be removed during my surgery in July. Two small ones are near the liver, but Dr. Loggie says they are in such a tight place that they have practically "painted themselves into a corner". He doesn't seem concerned about them -- they haven't changed in the two years we've been watching them -- and he thinks they will just sit there and stagnate.

The other tumor is in the mesentary, near the bowels on one side and aorta (blood supply to the stomach) on the other. During the surgery, Dr. Loggie saw it, but did not feel he could safely remove it. This is the one he is concerned about. It is growing, and left untreated, it could possibly cause an intestinal blockage or restrict the blood flow to the stomach.

During my consultation on Nov 4th, Dr. Loggie discussed an option that I have never heard being made by a PMP specialist. Radiation. Radiation is never used to treat PMP because the cancer is mucinous, and dispersed throughout the abdominal area. Using radiation to treat that is not very effective at all.

So why would Dr. Loggie suggest radiation if it is never used? For one thing, we know from the many CT scans I have had over the past couple of years, and from his observation, that this one tumor is localized. The problem is that it is growing little "fingers" at the outside edges that are reaching towards the aorta and bowel. This is one reason that Dr. Loggie was not able to remove it before. He felt certain that he could not get the "fingers" out as the margins around them are very narrow and too close to vital organs/blood supply. But no one has ever successfully -- to his knowledge -- used radiation on PMP, but he thinks that in my case, the radiation (along with chemo) could shrink the tumor and "amputate" the "fingers" enough to make the tumor operable.

Yes, that means another surgery. :-(

Since this is a treatment that is not used for PMP, Dr. Loggie was hesitant to say this is what "should" be done, but instead said it was something that could be tried. He said he usually prefers to give patients a recommendation rather than a "menu" of options, but this time, he is outlining the choices without a strong recommendation. Partly because while surgery could remove the threat this tumor poses, it could create other problems.

Here are the choices.

1) Do nothing / watch and wait. The good thing about this option is that right now I am feeling pretty good, and do not have any symptoms. The bad thing about this option is that if I get to the stage where the tumor becomes a problem, there is a good chance that nothing else could be done at that point. And there is no way to project rate of growth/timing of the tumor.

2) Radiation and Chemo, with another surgery following. The good thing about this option is that we are being proactive in attacking this tumor, with a better possibility of actually getting it removed. The bad thing is having to go through radiation, chemo, and yet another surgery. And of course there is the risk that comes with surgery. Since the tumor is close to a blood vessel, there is a chance of nicking that. There is also a chance of nicking bowel, which could also cause big problems. There is also a risk of problems from additional scar tissue and a chance that surgery could actually disseminate the currently localized disease.

The treatment would consist of 5 weeks of radiation. Mon thru Friday for about 20 mins a day. The chemo would be Xeloda, which I have taken before and is taken orally as pills. I have been told that there probably won't be many side effects, but we really won't know until I start the treatment.

3) There is also the possibility of doing chemo and radiation without the surgery, but that would probably just put off the inevitable.

Right now I am leaning towards the 2nd option. I hate the idea of yet another surgery and following recovery, but I know I can do it. I also don't want to do nothing, and then a couple years down the road get to the point where nothing can be done, and regret not having taken action.

It's not an easy decision to make, as there are a lot of risks involved. But I guess with cancer, there are risks with any treatment. You just have to pray that the path you take is the right one for you.

Your prayers for guidance and wisdom are greatly appreciated.

Kevin

Six Years Ago Today...

On Oct 9th, 2003, I was taken into the OR at St. Lukes Roosevelt Hospital for emergency surgery. 6 hours later, I was in ICU without an appendix, with an ileostomy and being pumped full of antibiotics.

The tumor on my appendix had burst, perforating my bowels, which made me septic. I think there were some in the hospital that thought I would never leave alive.

Five days later we were told I had cancer. Six days after that, I left the hospital to finally go home.

And the rest, as they say, is history.

Appt. with Dr. Loggie

The time has come up pretty fast. It has been about two months since my surgery, which means it is time to make an appointment for a follow-up with Dr. Loggie.

We will be going to Omaha Tuesday, Nov. 3rd, then will get a CT scan first thing Wednesday morning (Nov 4th), then see Dr. Loggie directly after. Hopefully he will have some words of wisdom concerning next steps of treatment.

Actually what we are praying for is that he will look at the CT scan and say, "Hmmm... this is weird, there's nothing there."