More Chemo Begins

I am sitting at St. Joe's cancer clinic getting chemo as I type this. I have completed my first drug, Taxol, and have just started the second one, gemcitabine. Here is what we learned today.

The results of the PET showed similar reductions in the masses as the CT. Everything has been reduced since the last CT scan taken at the end of Jan/beginning of Feb. They have reduced dramatically since the initial CT scan. For example, the mass in my abdomen that was originally 9 cm long now measures 2.2 x 1.9 cm. The PET scan revealed two areas that "lit up". This could indicate live tissue, and is measured by FDG uptake (FDG is the drug that was injected into me an hour before the scan). The mass in my mediastinum (chest) had an FDG uptake of 2.6 and in my abdomen had an uptake of 2.1. The remaining small nodules in my lungs had no uptake.

The mass in my mediastinum measured 3.2 x 1.6 cm, of which only 1 - 1.5 cm lit up, indicating that some of the mass was dead and some was alive. One thing that is not clear is what the FDG uptake truly means. Any FDG uptake below 3 could indicate an inflammatory reaction to the chemo/healing of the tumor. So the fact that 2 of my tumors lit up with an FDG of less that 3 may or may not be due to live cancer. In reality, it is likely that at least some of it is the cancer, but it is small and growing slowly. The fact that the nodules in the lungs did not light up is also inconclusive. Any mass less than 1.5 cm may not respond to the FDG and may or may not light up even if the tissue is alive. All of my masses in my lungs are less than 1.5 cm.

So I have 2 sites that have lit up, likely indicating live tissue present, but not conclusively. We discussed removing these sites with surgery. The surgery to remove the mediastinal mass is relatively straightforward. The surgery to remove the abdominal mass is difficult. Due to it's deep location it would be a very invasive surgery. Due to the small size of the mass, it may be difficult to find. In addition to that, if we proceeded with a solely surgical approach, we could not be sure that the masses in the lungs that were less than 1.5 cm were void of microscopic active tissue that did not appear on the scans. The scans are very useful and help in diagnosis, but they are not absolute. Proceeding with surgery to remove the obvious sites of disease may leave behind undetected sites of live tissue and leave us with a false sense of success.

We decided to proceed with chemotherapy. The hope is that the chemo will kill the microscopic live tissue that is not detected on the scans, and reduce or eliminate the live tissue that we can see. After 2 rounds of the chemo I will be re-evaluated.

Dr. Winegarden was very encouraged about the study by Dr. Einhorn regarding this chemo regimen. He was amazed by how closely the study matched my condition, and he was impressed with the success rate. The success rate was 12% without surgery. This may sound low to us, but he said for a Phase II study with such a small and specific group of patients that level of success unusually high. I added that those 12% probably did not feel nearly as strong and healthy as I do now. Also, please do not get hung up on the 12% figure, because that is just 12% of the 32 patients in this study. One of the limitations of a study that small is that the numbers do not translate to the general population. You need a much larger sampling of patients in order to determine a true percentage for a prognosis. This is not my prognosis, it only shows what happened in this very small group of patients. What it does show is that there is a very promising mode of treatment for a situation that previously did not have one. In the end, the success rate for this treatment could be much different than it was in this study. There is no way for the doctors to give me a prognosis at this point, but Dr. Winegarden says these next 2 months will be very crucial.

At this point I don't feel any side effects from the chemo. I am awake and alert, and I began the day with my first walk over 3 miles. I continue to feel better every day, and plan to keep that trend going. This has been a trying few weeks for us, but it feels good to have a plan and to have it underway. It is time to finish this thing off.

More Chemo is Likely

I received a call today from my oncologist in Ann Arbor, Dr. Winegarden. He had a chance to converse with Dr. Einhorn over the weekend via email regarding the results of the CT Scan. It was Dr. Einhorn's feeling that the PET scan would not give us much more information than the CT, and that I am not a good candidate for surgery. His recommendation is a chemo regimen involving two drugs, paclitaxel (Taxol) and gemcitabine. This is another treatment created at IU by Dr. Einhorn, and his initial, small studies have shown some success. Dr. Winegarden suggested we go ahead with the PET scan scheduled for tomorrow night, and I agree. If there is even a small chance that it will provide additional helpful information, then I want to have it done. Besides, it looks like the insurance company finally approved the preauthorization. The PET is scheduled for 6:00 Wednesday night.

I have an appointment with Dr. Winegarden on Thursday, followed by an appointment to start chemo. We should have the results of the PET scan by then, so if it indicates any chance of surgery we can still delay chemo if necessary. The chemo would be administered once a week for three weeks. I would then have a week off before starting another round. I do not know for sure how many rounds I will need, or what the side effects will be. They will likely be more of the same (losing the hair that has begun to grow again), but they should not be as strong as in previous chemo treatments.

I did find the published study on this treatment, authored by Dr. Einhorn, and have provided a link to it below. It was published in the Journal of Clinical Oncology in 2007. I will warn you that it does not paint a rosy picture of my situation, so read at your own discretion. Prior to the introduction of this treatment, there was no chemo regimen that had been successful with a patient that had failed high-dose chemotherapy. This study was a small one, but has had some success and may be a potential cure. Of the 32 patients treated in this study following unsuccessful treatment with high-dose chemo, 6 had complete remission for greater than 40 months. The rest of the details are in the link below, and I should have more info after my appointment on Thursday.

http://www.ncbi.nlm.nih.gov/pubmed/17290059?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

This is certainly not the positive report we were hoping for, but we may still get better news with the PET Scan. Nonetheless, I still feel confident that I will beat this, and my doctors will be publishing more papers about me in the future (so far they have submitted 2 or 3 papers to national journals regarding my cancer and treatment). I continue to feel strong and healthy, and it gets better every day. I have increased my walking to 3 miles. I continue to work out at the Y, doing 30 minutes of cardio followed by a full rotation of the weight machines. I increase weight and resistance every time. My hair is growing, and I even had to shave a few times this past week. I was told it would take 3 months for the hair to grow back. The fatigue is gone, and I no longer need naps unless I stayed up late to watch the Red Wings. I feel the healthiest I have felt in a year!

I know that I still have a tough battle ahead of me, but I refuse to allow this to beat me. My faith tells me that I will win, and I feel that I can still beat this cancer on determination and will alone. If Dr. Einhorn needs more proof that this treatment works, then he better sharpen his pencil because I will beat this cancer!

Incomplete, yet hopeful, news

I have received the results from yesterday's tests, and while the information is incomplete at this point, it is hopeful. The MRI came back normal, there has been no spread to the brain. This is excellent news, of course! The CT scan showed that there was still enlargement of the lymph nodes in the abdomen and chest, as well as remaining nodules in my lungs, but they had all reduced in size since my last CT scan in February. While this shows that the tumors have responded to the treatment thus far with a reduction in size, it still does not tell us where the rising HCG is coming from. It is hopeful news because it appears that everything has shrunk. It is incomplete news because we still do not know where the live cancer remains.

The next step is a PET scan on Wednesday to determine where the live tissue is hiding. The hope is that it will be located in an operable location, and then we can remove the remaining tissue. You may recall that I mentioned the PET scan before, and I even had it scheduled for this past Wednesday. Unfortunately there was a mix up at the hospital and I was rescheduled for a CT scan. It seems that a PET scan is not an approved diagnostic test for testicular cancer, so my insurance denied the preauthorization. I found this out on Tuesday, and although I said to go ahead with the PET scan and I would pay for it if that is what I need, the appointment was still cancelled and rescheduled for a CT scan. I found this out yesterday at 12:30, just a few hours before I was planning to head to the hospital for what I thought would be an MRI and PET. Needless to say, I was quite upset. While I would certainly prefer my insurance to pay for the scan, I cannot put a price on my own life, and if I need a PET then I will find a way to pay for it if necessary.

In the end, I was not able to get the PET yesterday and had to settle for a CT scan. The CT scan has provided us with some info, but it sounds like the PET is still necessary. The good news is that my tumors are still shrinking, and waiting a week for the PET does not put me in any further danger. We obviously want to move forward as quick as possible, but thankfully my tumors are small and growing slowly. We can afford to take the time to collect more information, consult with all doctors involved in AA and Indy, and come up with what will hopefully prove to be the final, successful, phase of treatment.

This has been a trying week of waiting, with a maddening day of mistakes yesterday, but we finally have some hopeful news today. We will enjoy this beautiful holiday weekend with family, and be ready to hit the ground running next week. Who knows, by then my doctor may have convinced Blue Cross to pay for the PET on Wednesday.

HCG still rising, more imaging tomorrow.

I spoke with my oncologist just a short time ago, and my HCG has risen this past week. It is now 95, more than double what is was last week. This means that it is not due to a hormone imbalance, but it is due to live cancer that is growing again. I will undergo an MRI of the brain and a PET scan of the chest and abdomen tomorrow to determine where it is so we can get after it.

This obviously is not the news we were hoping for, and it is certainly not good news, but it was what we expected. I did, however, have my best and longest workout today, and continue to feel better everyday. So I am physically ready to take on the next challenge, whatever it happens to be. I know that with each failed treatment my prognosis dwindles, but I maintain that statistics are history; they pertain to other people and they relate what has happened in the past. I have bounced back quicker and stronger than I should have from the poison they pumped through me in Indy. My body may not be fully healed yet, but it is ready for the next battle, and I still plan to win this fight.

Thank you for your prayers and support, and please keep them coming.

Still Waiting; Ethan Watching

We are still waiting for more news today. I am in Ann Arbor now, killing some time between my blood draw this morning and my Livestrong class at the YMCA. We should have the results of the blood draw some time today. The hope is that the HCG is back to normal, indicating that last weeks results were due to a hormone imbalance. So keep hoping and praying for me today.


I continue to feel better each day and am now walking up to 2.5 miles a day. I have also put 10-15 lbs back on, most of which is around the middle. Hopefully with my workout schedule increasing I can convert some of that to muscle. The Livestrong class has been great, and I am confident they will continue to make me stronger.


Besides waiting and worrying this week, we have been delighted to watch many of Ethan's "Firsts". He is not walking without assistance! He started with a few steps between us, but quickly progressed to walking across the room when one of us is there to catch him. Now he is walking between the furniture on his own, and is getting more confident each day.


On Thursday we took him to the park for the first time, and made his first trips down the slide and on the swings. He also began eating real food. I guess after the park he felt he had grown up a bit, so he refused to eat his baby food. We gave him some pasta from our plates and loved the pasta and tomatoes.


On Monday he came to Ann Arbor for my class. He napped while Megan took him for a walk, but once my class was over he enjoyed his first time in a pool. The Ann Arbor Y has a wonderful kids pool. They keep it at 90 degrees, and it starts out at 0 depth and progresses to 4 feet deep; like a beach. Ethan proudly walked right into the water (with a little help) right up to his armpits. He loved the water and, apparently, the life guard. He smiled and waved at her several times, making it the first time he has waved at a stranger.


Maybe we are just silly parents getting excited about all of these "firsts", and I guess we wouldn't argue with that. Below are some photos of our boy wonder, you can judge for yourself. Oh, by the way, Ethan has 8 teeth in already, and he is already brushing them quite well! That's my son!










Ethan's first trip down the slide at Elizabeth Park.


















"So that was fun, what else you got?"

"I hope you have a good grip on me Mom!"



















"Mmm! Pasta!"

"Let's see, did I get it all?"


















"Ooh! There's a piece that was getting away!"

"Maybe if I hide some in my ear I can save it for later. Mom and Dad will never know!"















"Well, that's all the pictures for now, I am outta here!"

No Lab Error

I received the results from my blood draw in Ann Arbor, and the results were exactly the same as Indy; HCG is 40. I was back in Ann Arbor today for my workout at the Y and for the Testosterone shot. Now I will wait until next Wednesday for another blood draw to see if scenario 2 plays out. In the meantime I will continue to exercise and get stronger. I walked over 2 miles yesterday, and today I began weight training at the Y in addition to the cardio.

I spoke with the trainers and some of the other cancer survivors in my class about the news from Monday. That group will certainly be a great source of support. We talked a little bit about the waiting game that comes with cancer. It is always a rush to get a test completed, and then the wait to hear the results. People have asked me in the past why I drive all the way to Ann Arbor to get my blood drawn. I could have it done locally, but then it has to be sent to a lab, then back to the local physician's office, then to Ann Arbor. It is much easier to drive to AA, were they have a lab on site, and they are pretty quick. Unfortunately it is not instantaneous, so there is still a waiting game. In this case, we have to wait a week to see how my body responds to the testosterone. If it was low testosterone that drove the HCG results up, then we have to wait and see if they come back down over the next week.

Thanks for your prayers, we will continue to forge on. Oh yeah, and Go Wings!

Another Curve Ball

We returned home from Indy late last night, and did not see that we had a message on our home phone. This turned out to be a good thing. When we listened to it this morning we received news from IU that my HCG has gone back up. Despite all of the optimism yesterday, my HCG is back up to 40. This is a much smaller number than what we have been dealing with in the past, but more critical that the number is the trend. Unfortunately the trend appears to be a rising tumor marker.

So what do we do now? Well, we made a trip to Ann Arbor today for more tests, and there are four things that we are looking at as possible explanations. The most likely scenario is that the cancer is not yet dead. This will be determined by following my HCG and testing the other scenarios. If we rule out the other three, then we will locate the remaining live cancer tissue and determine a plan of action. The three other scenarios are as follows:

1. There is always a possibility, and in this case a hope, that the lab in Indy made a mistake. This is fairly unlikely, but by testing my blood today in Ann Arbor we can confirm or contradict the results from yesterday.

2. There is a very small chance that this is the result of lowered testosterone due to the high dose chemo. When the testosterone is lowered, the brain senses this and triggers the release of LH (leutenizing hormone) that would stimulate more testosterone production. LH is molecularly very similar to HCG, and therefore elevated levels of LH could be interpreted as elevated levels of HCG. Tomorrow they will give me a shot of testosterone, then check my HCG in one week. If this is the scenario playing out in my body, HCG should be back down to normal next week.

3. I will be getting another MRI of my brain if scenarios 1 and 2 prove false. The brain is a "safe haven" for testicular cancer because the chemo, no matter how high the dose, cannot cross the blood-brain barrier. So chemo will have no effect on a brain tumor. I have had 2 MRI's in the past and both were normal (despite what you may all think). It is unlikely that the cancer had a chance to spread to the brain since my last MRI, but it is something we need to investigate as a possibility.

So we hope for an error or a small miracle. I am not sure if scenario 3 is better or worse than having cancer that survived high dose chemo. Most likely, the explanation for the rising HCG is living cancer in one or more of the metastatic sites.

We had planned to spend this day packing for a trip to Traverse City, but that has been cancelled and we feel like we are back to square one a bit. Nonetheless, I have killed off most of this cancer. What remains may be just a few cells or just a small percentage of the original cancer. I will stay the course and finish this thing off! If I have beaten 99% of this cancer, you can bet that I will kill the last 1%. I feel as healthy as I have felt since June of last year. I continue to walk daily. On Wednesday I worked out at the YMCA and spent 22 minutes on the elliptical machine. Thursday I took two walks, a mile each, and Friday I walked 2 miles consecutively. Before my appointment in Indy yesterday I spent 28 minutes on the elliptical at our hotel. I may be walking instead of running, and my resistance setting on the elliptical is still on the lower half of the scale, but I am getting stronger each day. I feel great!! My doctors are amazed at how good I look; my hair is slowly beginning to grow again. I am determined to continue this trend of health, and reverse the HCG trend.

I said it early in my treatment; bring it on cancer, you don't know who you are messing with! The fight goes on.

Thank you all for your support and prayers, it looks like I will continue to need them a little longer. Thank you from the deepest part of my heart!

Update from Indiana

Megan and I just got done seeing Dr. Einhorn. We are waiting on blood results and are visiting the nurses and staff on the floors where I was treated. The good news is that Dr. Einhorn feels I am doing great and fully expects that my HCG will be normal when we get the results. We will check in at his office before we leave; if the results are not back by then he instructed us to go home and they will call us with the results.

So no hard numbers yet, but it looks like it should be good news. We will post the results either tonight or tomorrow, depending on when we get them and what time we get home.

Rehab at the Ann Arbor Y begins

I continue to get stronger every day, and have now begun physical rehab at the YMCA in Ann Arbor. Monday was the start of the program, but it was mostly filling out paperwork and orientation. Today was the first day of exercise and fitness testing. It felt great to be exercising again, and I did much better than I expected. That is not to say that I don't have a long road to recovery, I do, but my stamina was much better than I expected.

The fitness testing involved some relatively simple exercises, or at least they would have been simple 7 months ago. They involved exercises that tested my balance, strength, and quickness of feet. I completed all of them just fine, but I definitely could feel it in my muscles and lungs. We then spent time on the cardio machines, and I spent 22 minutes on the elliptical machine, and 10 minutes on another cardio machine. This was much longer than I expected. I used to work out on a very similar elliptical machine at the Trenton Athletic Club prior to cancer. The difference is that now I am working at a much lower resistance setting, but I will get there. It just felt great to be on the machine and feel like I knew what I was doing.

The first week I was home it was tiring to walk to the mailbox, and when I tried to run to get out of the rain, I felt like I did not have the muscle coordination to run. Now, I am up to walking nearly a mile in our neighborhood, and after today I know that I have regained the muscle coordination to run. I am still going to take it slow, but it is very encouraging to see the progress I have made in just a few weeks of walking and gradually increasing daily activities.

I also had another blood draw today while I was in Ann Arbor. My blood counts are getting back to normal. My WBC's are still a little low, but they continue to creep up and are very close to normal. My Hemoglobin is back to normal and my platelets look good. The body is truly amazing. I told the nurse before my blood draw that the numbers would be better today, because I could just feel that I was improving each day. It is hard to explain; I just have an increased awareness of how I feel since the completion of treatment, and I can tell each day that my body is getting better. On Monday I will find out if I am correct.

We will head down to Indianapolis on Sunday for my one month follow-up with Dr. Einhorn on Monday. I will have my HCG checked again at that time and hopefully find out that is normal. As good as I feel, I have to remind myself that I have not beaten this yet. If my numbers are good on Monday, I will be well on my way.

I hope you are all doing well. Megan and Ethan celebrated "birthdays" this week. Megan's birthday was Monday, and Ethan turned nine months on Tuesday. We celebrated with a trip to the Toledo Zoo on Sunday. Ethan slept through most of the zoo, and although he seemed to enjoy watching all of the people more than the animals, he did get excited about the aquarium and a Tiger that came right up to the front of his enclosure. It was a fun day.