MD Anderson Visit in June

We visited MD Anderson last week for a check on my progress. Based on the scan results it looks like everything is still shrinking. The current plan is for me to get two more rounds of chemo in Indianapolis and then return to MD Anderson to evaluate if I am ready for surgery. It is possible I will need more chemo but we don't know that until after we see how my tumors respond to this chemo. I am finishing up the first round this week and will get the second round the week of July 13th. My appointments in Houston are around Aug. 3rd.

Here is a picture Sandi put together with some of the highlights of the trip to Houston:

We did get to enjoy a Houston Astros game while we were in town. I was very excited that we got tickets for $7 in the lower level. Apparently they are having trouble drawing fans. The picture on the bottom left is not as self-explanatory. I had the pleasure of doing a 24 hour urine sampling. This entails collecting all your urine for 24 hours and it must be chilled. Since we were staying in a hotel I had a nice cooler I got to carry around. Yes, pretty gross! All I could think while I was carrying it was "what would the people around me think if they had any idea what was in my cooler!".  The last picture is the peanuts band-aid you get when having bloodwork done on the peds unit.

As I write this I am finishing up my last session of chemo this week and everything is going fine.

That is all for now.

Cat Scan

We got great results from last weeks CAT Scan. All tumors in the right pleural space of my lung showed considerable decrease in size. We are very excited about the news.

I will have one more round of chemo this week (Mon-Wed.) and then one more three weeks from now.

We will be going back to MD Anderson mid-June. At that time if the tumors have shrunk sufficiently I will have surgery to remove them.

Keeping our fingers crossed! Thanks for your support.

Cat Scan This Friday

Not too much to report this week. I have been feeling much better than I was a little over a month ago. It appears that the chemo is doing it's job. Before I started the chemo I was having quit a bit of pain in my right side. I was also coughing considerably more than I had been. Those symptoms have pretty much vanished since I started this chemo. I will have a CAT Scan on Friday and expect it to show a reduction in the size of the tumors. We will not have the results until the following week but I will let you know as soon as I have them. Enjoy the week.

Spring Break

This week is Spring Break for our kids and we are enjoying it in Florida with many of our good friends. It just so happens that this is also my chemo week. I am sure you are wondering how chemo is different in Florida versus Indiana. Let me show you:

That's right...it is exactly the same! Not even a view of a palm tree or the ocean. Oh well we are just happy we were still able to make the trip. We found a cancer treatment center less than 10 minutes from where we are staying and they have gotten me in and out before lunch everyday. I am still able to get out and enjoy the beach all afternoon.

Thank you to all my friends who have taken time out of their vacations to sit with me while I have gotten chemo. I had more offers than times to fill. I appreciate it very much.

Feeling fine this time around although I expect to be a little tired come next week. I definitely feel like the cancer has shrunk again from this chemo and expect to see good results when I get a scan in two weeks.

All for now.....

Yes, I am still here!!!!!

OK, so first of all I am still here. I was doing some reading about having a blog and one of the first things mentioned was that the writer needs to be consistent in putting up new posts. Obviously, I have violated that rule! I WILL UPDATE THIS AT LEAST ONCE A WEEK FROM NOW ON.

Here is a quick recap of what has happened in the last year. For most of 2014 I had multiple different types of chemotherapy that had initial success in treating my tumors. As soon as the chemo would stop the tumors would begin to grow larger.

In a search of other treatment options we decided to have another biopsy done in September. The biopsy results showed that my cancer had been misdiagnosed. As a child I had a pediatric cancer called Wilms’ Tumor. The treatment at the time was removal of a kidney and chemotherapy. The new biopsy confirmed that this cancer had recurred 32 years later. I must also say that they still would not have diagnosed it correctly if Sandi had not insisted to my surgeon that the pathologist check for certain tumor markers that are present in Wilms’ Tumor. These markers had not been checked in the previous biopsy and would not have been checked in this one had Sandi not insisted.

There are a couple of important lessons to be learned from this experience. Cancer treatment is totally based on what a pathologist diagnoses. If they make a mistake the treatment received will not be correct. Everyone else involved in the treatment is assuming the diagnosis is correct.

The second lesson is that it is very important to have someone fighting for/with you. If Sandi had not insisted to my surgeon that he have certain markers checked by the pathologist they still would have made the same mistakes.

From everything we can find this diagnosis seems to be very uncommon (although there are many Wilms’ Tumor survivors out there that are starting to age into adulthood, so this could change). Wilms’ Tumor has not been known to come back this long after the initial outbreak. This made treatment options hard to find. I had a new chemotherapy starting in October that seemed to initially help reduce the size of the tumors but eventually they began to grow.

Ultimately we made the decision to travel to MD Anderson Cancer Center in Houston. It is regarded as one of the best Cancer treatment hospitals in the United States. Sandi and I made the trip about four weeks ago in the beginning of March. We have been very happy with the results so far. I met with multiple doctors including a Pediatric Oncologist. It had been impossible for me to get an appointment with a Pediatric Oncologist previously because all of them questioned the diagnosis. They did not believe that a 37 year old could possibly have this pediatric cancer after 32 years cancer free.

She laid out a plan for Chemotherapy, for my Oncologist in Indiana, that has been successful with other patients. I started the new therapy two weeks ago. It calls for treatment with two drugs for five days straight, then two weeks off. I will have one more round next week then I will get a scan. Next, two more rounds of the chemo and another scan. After that scan we will be going back to MD Anderson to determine the next step. Fortunately the chemo can be done in Indiana.

The ultimate goal is to reduce the size of the tumors to a point where they can be surgically removed. We are still unsure what exactly the treatment will be after the four rounds of chemotherapy.

I would like to thank all of our friends and family for being so generous with their assistance. You have been more generous then we could have ever asked you to be. Sandi and I can not express how thankful we are.

The biggest thanks I have is for Sandi. She has always been next to me (even when I told her she didn’t need to be) and always keeps fighting! Without her I am not sure where I would be today. Thanks and I love you.

If you would like to contact me please send an e-mail to jdmorse78@gmail.com .

Scan Number 2

The results from my scan were positive. The tumors have all shrunk, but are still present, and there are no signs of it spreading beyond the right lung.

Now I am on the clinical trial drug (Yervoy) exclusively, without the chemo. I had a dose of it on Wednesday, Feb. 19th and will have the next dose on March 12th. After that I will be in the Maintenance Phase of the trial. This will involve getting the Yervoy every 9-12 weeks, as long as I continue to respond.

I am also planning on having radiation in the middle of April as a preventative against the cancer spreading to my brain.

The only negative thing to come out of the scan is that I am developing Pneumonitis. This is an inflammation of the lungs. It is seen as a side effect of Yervoy in less than 1% of people taking it. Yippee for being special!!! I am being treated with Steroids for this and will have another scan on 2/27 to see how the Pneumonitis is responding.

All in all I feel great and am able to go about life like I did before I was diagnosed. Looking forward to the weather getting better so we can get outside! Take care.

Chemo Complete

When I last left you I was getting ready for the fourth and final round of chemo. I am happy to report that I made it through the last round and rang the completion bell.

I was down and out for about 4 days after chemo this time. I think it was a combination of the chemo and the cold I have been battling for about three weeks. I spent the entire day Saturday sleeping. At one point Ellana did ask if I was dead! Apparently I let go with a massive snore and she laughed and said I was just sleeping. Very funny!! I am feeling much better now.

This week I have a scan on Monday to see how everything is looking. I will post the results but probably will not have them until late in the week.

Assuming the cancer is still not progressing I have two more rounds of the clinical trial drug on Wednesday, Feb. 19^th and three weeks later. I will have ten rounds of radiation over two weeks in mid to late April. That is a preventative measure to keep the cancer from moving to my brain.

All the news for know keep your fingers crossed for good news this week!

Third Chemo Cycle

OK, so it turns out I am a terrible keeper of a blog! I do not update it often enough. Not promising anything but I will try to do it more often. Let me get you caught up on the last couple of weeks.

I had Chemo the week of January 6^th. The trial drug was also administered with this cycle. This was, by far, the worst cycle to date. I did not feel well for a good week and a half (nausea, at one point a drink of water almost made me sick!! Please laugh at that because it is funny). In addition to not feeling well from the chemo I also came down with a terrible stomach pain on the Monday evening and Wednesday morning the week after chemo. I have never felt any pain like this in my life! I ended up going to the emergency room both times. While there I was introduced to a great little drug called Dilaudid. Let me tell you, this takes the pain away immediately. It is so good I requested it on the second visit within the first 15 seconds of seeing the Doctor. I am not a healthcare provider but I am guessing that sent up some red flags!

They were unable to find anything wrong with me after running blood tests, a CAT scan, and an X-Ray. I saw my Oncologist the next day and he seems to think it was a reaction to a medication I was taking. It could be that it has something to do with the trial drug.

Speaking of the trial drug, it is possible that I am just getting a placebo rather than the drug. However, I have been having some odd symptoms since my last treatment that were not present with the previous two. I have developed a small rash in a couple of places (possible side effect), had flu like symptoms (possible side effect), and the stomach pain/ gastritis (possible side effect). We are not getting too excited but it seems that I am experiencing a few of the side effects of this drug. Hopefully I got it!

Today I went for my pre-chemo blood test to see if my white cell count is low. Miraculously, for the first time since I started chemo, I am fine. No Neupogen shot for me this week! We are very happy.

So I start the last round of chemo next week on Monday. I will get another scan in the couple of weeks after that to see what progress has been made.

Hope you are all well. Talk to you soon.

Great Scan Results

I will start with the best news we have had in awhile. I had a CAT scan this week and the results were great. The cancer tumors around my right lung have shrunk in response to the Chemotherapy. There are no signs that the cancer has spread anywhere else. All in all this is the best news we could hope to hear. So for now the course of treatment will continue as planned. Yipee!!!

We definitely had an interesting Christmas. It started with Sandi and the kids getting the stomach flu on Christmas Eve. I was sent into quarantine and not allowed to help or clean anything up. Sandi took care of the kids and herself. It was a big job with everyone vomiting for about 12 hours. She proceeded to clean all bathrooms multiple times to try and clear out the germs. To date it has paid off. I have not come down with the flu. On Christmas we went out for Chinese, not bad but a different sort of Christmas. It was great to be together and we are thankful for that.

I am scheduled to start the next round (3rd cycle) of Chemo on Monday. I had a blood test yesterday to check my White Blood Cell count. Again, it was very low so I got a shot yesterday and today to get the count up. I should be ready for Chemo on Monday assuming the SNOWPOCALYPSE does not shut down Indianapolis.

During this cycle of Chemo I will be given the clinical trial drug Yervoy (or placebo) in addition to the normal Chemo drugs Cisplatin and Etoposide. The clinical drug is also added in the 4th cycle. After the fourth cycle chemo ends, but the clinical trial drug continues every three weeks.

I also wanted to share a couple of our Christmas pictures. Thanks to Molly Connor ( www.mollyconnor.com ) for taking these on very short notice. We are very happy with how they turned out.

If you can not read the shirts, mine says Screw Cancer, Sandi's says Beat Cancer, and the kids say Fa La La La La. We thought they were appropriate.

All for now. Hope everyone had a nice Holiday Season.

Next Cycle of Chemo

I was supposed to start the next cycle of Chemo on Monday, two days ago, but unfortunately it did not happen. My white blood cell count was too low so I needed an injection of medicine to get the count up. I was told that the common side effect of this drug is that your bones ache. This sounded quite odd to me until I had a sudden pain Monday afternoon that felt like I had thrown my back out! After thinking very hard to come up with what I might of done it dawned on me that this was the side effect. No worries!

The white cells were up sufficiently on Tuesday to start the normal treatment. So we had the marathon first day session yesterday and got home around 7:00. While we were gone Aunt Shannon and Uncle Devin, along with partners Ellana and Ben respectively, took part in a gingerbread house making contest. Bennett got a better offer part way through the contest and went to play with his buddy across the street. Needless to say the work suffered and Shannon and Ellana were declared the unanimous winners.

Thanks to Aunt Shannon and Uncle Devin for coming in to help out!

Here is a picture from Chemo (just getting a little work done):

If you can not tell I do have a nice Sun King Brewing stocking hat on, thanks to my friend Mike for keeping my bald head warm.

I did have a little nausea last night but I did not let that stop me from having Taco Tuesday when we got home. Right now I am sitting here getting my second chemo treatment of the second cycle. Feeling great right now, just a little tired. One more treatment to go tomorrow.

Hope you are well and I will talk to you soon.