Anthony's updates.

I would usually be writing an update in February, since that is when Anthony is usually do for his quarterly check-up, but we had a little scare over the past couple of weeks that led to the check-up being sooner rather than later.

About 3 weeks ago Anthony was complaining of pain near the area where the tumor was removed. While I was looking in the area he was complaining about, I noticed a bump sticking out of his chest right near the scar from the needle biopsy, pretty much where the original tumor was. He was reluctant to let me feel it because he said it hurt. I felt it anyway and it felt very hard, almost like the original tumor felt. This pretty much freaked me out. I tried not to get too upset about it, saying "it's too far out to be a recurrence." It didn't work.

A few days later we called the clinic and told them about it. They went back and forth and finally decided to do his 4 year scan a few weeks early to see what was there. We did the scan on Monday, January 14. We looked at the scan ourselves, since they gave us a CD with the images on it. Sure enough, we noticed something about 5 mm right in the area we were feeling.

By Thursday, we didn't hear anything about the scans so I figured it was nothing. On Thursday afternoon, though Dr. Masterson called Maria and said the CT report found a 5mm nodule and that we should probably go to Anthony's surgeon Dr. LaQuaglia and have him look at it. She recommended a biopsy of the tissue to make sure it was nothing. More freaking out... Before we went, though, I looked at his chest again and it looked like the area had shrunken. I thought: If it was a recurrence, it wouldn't shrink. I was still pretty uneasy, though.

We went to see Dr. LaQuaglia on Tuesday, January 29th. He took a quick look at the scans, felt the area and said "It is probably just a local reaction, or swelling, but I'm not sure." He also kept saying "It is too far out to be a recurrence." That made me feel better a bit, but not quite. He asked if Anthony would stay still for a needle cytology, or if I thought he would need to be knocked out. He could do the cytology that day if he didn't need to be anesthetized. Anthony is always so good with these tests and I wanted to know right away what this thing was, so I told him he would be OK with just a local anesthetic. Anthony knew exactly what was going on and he said "I DO need to be knocked out."

We had to wait a while for the procedure room to open up and the whole time we were waiting, he kept saying "I just want to leave". I told him we had to find out what the bump on his chest was and we didn't want to keep scanning him. He said "I don't care about being scanned. It's not bad. You can scan me as much as you want." At this point it is not the fact that it is inconvenient to have him scanned, it is the extra radiation he is getting with each scan. Anyway, he wasn't happy.

We waited around for the room to open up and about 1:30 PM we went in. Anthony was very nervous and was on the verge of crying a couple of times. He was a trooper, though. He stayed totally still and let Dr. LaQuaglia put the local anesthetic in without crying. Once he had the local, he didn't really feel much until the near the end when he started saying it hurt.

Dr. LaQuaglia's nurse practitioner Carol was so nice. She stayed up by Anthony's head while I held his hands and she kept asking him about video games and other things to keep his mind off of what was happening. I was also trying to bring up things to make him less nervous. But we must have just been talking and talking, because at one point Carol said "do you want us to stop talking now?" and he said "yes".

After Dr. LaQuaglia took enough tissue samples, the pathologist looked at them under the microscope right in the room. The preliminary results were that it was benign, but we had to wait for the final results. Last night, Dr. LaQuaglia called and said the final results show that it is benign, too. That is why I waited until now to post anything. I wanted to have official word of the results.

Five pounds and many gray hairs later, everything is right in the world again...thank God.

Anyway, we have a clinic visit in a couple of weeks for this last quarterly visit. That's right, I said LAST. We have only two scans and visits left after this. One in August and one next February. At that point it will be five years post-treatment and he is considered officially "cured", for what it's worth. That won't stop the worrying, though.

It's been a while, but the latest news is good. Anthony's November check-up, bloodwork, and CT scan were all normal. Only one more quarterly check-up and then we move to twice a year for one year. After that it is just bloodwork maybe once a year or so. That means there are only 3 more visits/CT scans and then he is past the 5 year mark and considered the same as everyone else.

I've probably said this before, but I was always under the impression that Anthony would need to have a CT scan once a year for the rest of his life. But, when I asked about that a couple of visits ago the doctor said after 5 years post-treatment they consider him the same as anyone else. Not that I don't enjoy seeing everyone at the clinic, but I'll be very glad to stop going going there. As time goes on, I know fewer and fewer people at the hospital anyway.

Until next time...(February)

Anthony's last checkup was good.  Bloodwork was normal, CT was normal.  That check-up was at the 3 1/2 year from end-of-treatment mark.  The next one is the 3 3/4 check-up.  After that, in February, we will be beginning the fifth year post-treatment.  During that time, there will only be 2 check-ups, at 4 years (end of year four) and 4 1/2 years.  The last check-up will end year five in February 2008.  That is all that is left.  He will occasionally go back for bloodwork and maybe a CT.

About three weeks ago Anthony went for his three year post-chemo tests and everything looks good! He did a blood test, echocardiogram, and CT scan. Everything is normal... Yeah!

I didn't write about this in my last entry because I thought it was nothing and did turn out to be nothing in the end, but the last echocardiogram in September showed something weird (according to the cardiologist). He noted that there was a slight difference in movement around the left ventricle and this could signal possible problems. As a little background, one of the drugs they gave to Anthony (adriamycin a.k.a doxorubicin) can cause enlargement of the heart, also called cardiomyopathy. This could possibly be serious and would eventually result in the need for a heart transplant. So, when the cardiologist said he saw something funny, I kinda worried. When he told me that he saw this difference in movement though, I immediately thought about the apparatus in Anthony's chest. The material they put in there to take the place of the ribs can block ultrasound waves and make it difficult to see everything. I mentioned this to the cardiologist and he did not want to go back and look at the previous echo. He was convinced that he saw something real. I was not so convinced, though.

The cardiologist wanted us to go back for another echo in Feb. to see if anything had changed. We did, and surprise...the cardiologist said "it is really hard to see things in there, but I see no sign of any problems". He originally wanted Anthony to come back in 6 months for another echo, but now he says we should come back in a year and possibly not again after that. He repeatedly said "everything looks really great, he looks very healthy and I don't see any problems at all". I was gracious and didn't say "I told you so", but I was definitely thinking it.

As for the rest of the scans, we go back every three months for CTs during this last year and then switch to every six months for the next year. After that, Dr. Masterson said Anthony is considered cured and won't have to go back every year for CT scans! I had thought that he would have to go every year for the rest of his life, but he will finally be free of all the poking and prodding in another two years. That was news that made me very happy.

Lab disaster may lead to new cancer drug - Cancer - MSNBC.com

Serendipity strikes again! The researchers in the article were using PPAR for another purpose but found they killed the cancer cells they were working on pretty effectively. From the article:

The compound works in much the same way as the taxane drugs, including Taxol, which were originally derived from Pacific yew trees.

“It targets part of the cell cytoskeleton called tubulin,” Schaefer said. Tubulin is used to build microtubules, which in turn make up the cell’s structure.

Destroying it kills the cell, but cancer cells eventually evolve mechanisms to pump out the drugs that do this, a problem called resistance.

“Resistance to anti-tubulin therapies is a huge problem in many cancers. We see this as another way to get to the tubulin,” Schaefer said.

The PPAR-gamma compound does this in a different way from the taxanes, which might mean it could overcome the resistance that tumor cells often develop to chemotherapy.

“Most of the drugs like Taxol affect the ability of tubulin to forms into microtubules. This doesn’t do that -- it causes the tubulin itself to disappear. We do not know why.”

Cheap, safe drug kills most cancers - health - 17 January 2007 - New Scientist

An interesting development on the cancer front.

Remember when I said we hadn't heard about the latest CT scans and we assumed "no news is good news"? I was wrong. Don't get worried, though, everything is fine now.

It all started last Friday (Sept 22nd) when Dr. Masterson called and told Maria "The good news is that Anthony's ribs and lungs look good. The bad news is that the radiologist saw something, a nodule, on his arm." Maria raised a good point and asked why they were looking at his arm. Dr. Masterson said it was just an incidental finding. She told us not to worry, that it looked like it was just a normal thing that happens around Anthony's age, like a cyst on the bone. But we would have to check it out with a bone scan to make sure. Make sure of what, I thought? So I called the clinic. When I talked to Dr. Masterson, she said there is the possibility of it being a second cancer. We scheduled the bone scan for Wednesday, Sept 27th.

I spent all week imagining the worst. I couldn't sleep or eat. I felt sick to my stomach 24 hours a day and couldn't concentrate on anything. The thought did cross my mind, though that the radiologist was trying to get back at me for forcing them to do Anthony's CT scan at University Radiology in New Brunswick (see my last post). Nah...they are supposed to be professionals. Anyway, the day of the bone scan came and Anthony had to get injected with radioactive dye at 9:30 AM. He wasn't too happy and was crying most of the time they were injecting it. He kept saying "Why am I the only one that has to do all this?" I felt like crying myself.

We went back to the Monroe facility of University Radiology at 12:30 PM to get the scan. I told Maria that I was going to try to avoid looking at the screen during the scan. I know how the bone scans work, and if there was cancer anywhere in his bones, it would show up as a glowing spot. I had nightmares that I would look at the screen and see all these glowing spots and realize that the spot they saw on his arm was only the beginning. He did the scan, which took about 45 minutes of lying totally still with a giant plate above his body, just about touching his nose. I'll tell you, though, Anthony is a real trooper. I asked if he wanted to listen to music; he said no. I asked if he wanted to close his eyes so he wouldn't see the machine in front of his face; he said no. He just lay there staring at the cross-hairs on the machine the whole time like some zen master in a trance. He is pretty amazing.

When the scan was over, the technician said: "do you want to see yourself on the screen?" I thought "oh, no...I can't look", but it was impossible not to. With my hands shaking, I looked at the screen and saw the most beautiful sight...nothing. There was my son's skeleton on the screen with no glowing spots where they shouldn't be. I felt a huge wave of relief, but still not quite relaxed. I'm not a radiologist. Maybe there was something I just couldn't see.

We then had to wait to hear from the clinic. We called Wednesday evening and left a message to call us as soon as they knew anything. No call Wednesday. Thursday came. 10 AM...no call. 1 PM...no call. 3 PM...no call. 3:30 PM, Maria calls and says Dr. Masterson called and said the system is down and they can't see the scans. More waiting. 4:10 PM, Maria called and said the clinic phoned again and everything looked great! There was absolutely nothing on the bone scan! Thank God! Not only was the bone scan clear, but they took a closer look at his previous CTs and saw that the same thing was there on many previous scans and it hasn't changed. Really? So why did the radiologist wait until this time to point it out and suggest a follow-up bone scan...hmmm, I wonder?