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.
I am fighting Adult Recurrent Wilms' Tumor and this is a chronicle of that fight. If you would like to reach me directly please e-mail jdmorse78@gmail.com.
Tuesday, April 28, 2015
Sunday, April 19, 2015
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.
Friday, April 10, 2015
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.....
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.....
Thursday, April 2, 2015
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 .
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