Today we went to Jason’s first doctor appointment at MD Anderson. The hospital is huge, but very nice. There are fish tanks with tropical fish on every floor. There are lazy-boy recliners for the patients to lie down in while waiting for appointments. There are even tables with games and puzzles to pass the time. We first registered with the Melanoma Cancer Center and then we were told to go downstairs to the Diagnostic Center so he could have blood drawn. It was a scary place. There were over 100 people waiting to get their blood work done, and many of the people had bald heads from chemo and face masks to protect themselves from germs. Seeing so many sick people was a little overwhelming for all of us. Luckily the hospital is so large, they were calling about 10 people at a time to get their blood drawn and the whole process only took about half an hour.
Next, Jason was assigned a nurse, a physician’s assistant, and a medical oncologist. Each person spent a lot of time with us and did a thorough patient history and physical exam. Jason’s oncologist is Dr. Kim. He is very knowledgeable and a straight-shooter. I was very impressed by him. Since Jason has already has so many diagnostic tests completed in San Diego, we were able to already talk about treatment options at our first appointment. Since Melanoma is an aggressive cancer, we all agreed that Jason would need aggressive treatment. He is young, in good health, and should be able to handle whatever they throw at him.
One promising treatment that I have been reading about that they are currently conducting clinical trials for is called TIL (Tumor Infiltrating Lymphocytes). Basically, they remove one of Jason’s tumors and grow the surrounding T-cells that are all ready trained to kill melanoma. They grow billions of copies of these T-cells and inject them into his body along with high doses of Interleukin 2 (which ramps up his immune system, “Cytokine Therapy”). This is a Phase 2 clinical trial so there will be no placebos and all patients get the same dose and treatment. During Phase 1 trials, they had over a 50% success rate with melanoma tumor shrinkage. The only downside of this therapy is that it can take 2 months to grow the billions of T-cells needed for the injections. Jason has a lump that has been growing on his stomach that they are pretty sure is melanoma, so instead of having to do surgery on his lungs or liver to remove a tumor, they can probably excise the tumor on his stomach. The only problem is that it is only 1 cm, and they said that usually larger tumors work better for the therapy. So our oncologist is meeting with a team of other surgeons and oncologists today to discuss Jason’s case to decide if they should remove the tumor now, or wait until it’s a little larger.
We would really like to participate in this clinical trial, but we will be starting therapy in the meantime while we wait for his T-cells to grow. We have two choices. One is to start right away with the high dose of Interleukin 2. The other choice is what’s called Bio-chemotherapy. It is a combination of Interleukin 2, chemotherapy, and interferon alpha. Both of these therapies are very aggressive. Jason will need to stay in the hospital for 7 days, then will get 2 weeks of recovery time. Then he starts the cycle over again. They can do up to 6 cycles, but they usually do two cycles and run a CT scan to check for shrinkage. If the therapy isn’t working, then we switch to a different type of therapy.
Sorry for the long blog filled with medical jargon, but we got a lot of information today and I figured some of you might want the details. The doctor said the main thing to keep in mind is that each person is different. The first therapy we try might not work, but then we just switch until we find something that does. He was very positive, but at the same time, warned us that Melanoma is a hard cancer to fight. Luckily there are many new treatment options and if we can buy some time, there will be even better ones in the future.
On Friday Jason will spend all day in the hospital. They will run a lot of diagnostic tests on his heart and lungs to make sure he will be able to handle the aggressive therapies. On Monday he will be admitted into the hospital and therapy will begin. We got a phone call tonight and they told us that he will have his own private room in the ICU unit and I am even allowed to stay the night with him. I thought that was absolutely wonderful! One quick note, he is not allowed to receive any flowers. So if anyone wants to send gifts, I suggest PSP games J I can give recommendations if anyone needs them. We probably won’t have a lot of therapy related news until next Monday, so in the meantime we will just let you know what we are up to. If anyone is interested in coming out to visit, we will be securing corporate housing in the near future and I’m sure Jason would love to have visitors during his recovery weeks. So I can let people know good times to visit and you are welcome to stay with us.
Next, Jason was assigned a nurse, a physician’s assistant, and a medical oncologist. Each person spent a lot of time with us and did a thorough patient history and physical exam. Jason’s oncologist is Dr. Kim. He is very knowledgeable and a straight-shooter. I was very impressed by him. Since Jason has already has so many diagnostic tests completed in San Diego, we were able to already talk about treatment options at our first appointment. Since Melanoma is an aggressive cancer, we all agreed that Jason would need aggressive treatment. He is young, in good health, and should be able to handle whatever they throw at him.
One promising treatment that I have been reading about that they are currently conducting clinical trials for is called TIL (Tumor Infiltrating Lymphocytes). Basically, they remove one of Jason’s tumors and grow the surrounding T-cells that are all ready trained to kill melanoma. They grow billions of copies of these T-cells and inject them into his body along with high doses of Interleukin 2 (which ramps up his immune system, “Cytokine Therapy”). This is a Phase 2 clinical trial so there will be no placebos and all patients get the same dose and treatment. During Phase 1 trials, they had over a 50% success rate with melanoma tumor shrinkage. The only downside of this therapy is that it can take 2 months to grow the billions of T-cells needed for the injections. Jason has a lump that has been growing on his stomach that they are pretty sure is melanoma, so instead of having to do surgery on his lungs or liver to remove a tumor, they can probably excise the tumor on his stomach. The only problem is that it is only 1 cm, and they said that usually larger tumors work better for the therapy. So our oncologist is meeting with a team of other surgeons and oncologists today to discuss Jason’s case to decide if they should remove the tumor now, or wait until it’s a little larger.
We would really like to participate in this clinical trial, but we will be starting therapy in the meantime while we wait for his T-cells to grow. We have two choices. One is to start right away with the high dose of Interleukin 2. The other choice is what’s called Bio-chemotherapy. It is a combination of Interleukin 2, chemotherapy, and interferon alpha. Both of these therapies are very aggressive. Jason will need to stay in the hospital for 7 days, then will get 2 weeks of recovery time. Then he starts the cycle over again. They can do up to 6 cycles, but they usually do two cycles and run a CT scan to check for shrinkage. If the therapy isn’t working, then we switch to a different type of therapy.
Sorry for the long blog filled with medical jargon, but we got a lot of information today and I figured some of you might want the details. The doctor said the main thing to keep in mind is that each person is different. The first therapy we try might not work, but then we just switch until we find something that does. He was very positive, but at the same time, warned us that Melanoma is a hard cancer to fight. Luckily there are many new treatment options and if we can buy some time, there will be even better ones in the future.
On Friday Jason will spend all day in the hospital. They will run a lot of diagnostic tests on his heart and lungs to make sure he will be able to handle the aggressive therapies. On Monday he will be admitted into the hospital and therapy will begin. We got a phone call tonight and they told us that he will have his own private room in the ICU unit and I am even allowed to stay the night with him. I thought that was absolutely wonderful! One quick note, he is not allowed to receive any flowers. So if anyone wants to send gifts, I suggest PSP games J I can give recommendations if anyone needs them. We probably won’t have a lot of therapy related news until next Monday, so in the meantime we will just let you know what we are up to. If anyone is interested in coming out to visit, we will be securing corporate housing in the near future and I’m sure Jason would love to have visitors during his recovery weeks. So I can let people know good times to visit and you are welcome to stay with us.
9 comments:
Deb, what a great summary. You are so appreciated! You two are great as a team and Jason's parents will be a good support family. We're with you all in Spirit. Love Mom and Dad.
I agree, great summary. But where are the movie reviews?
--Brian
My suggestion - duck when you hear the train passing over!! Seriously, just know I'm praying for you Jason and hope they can find the right treatment the 1st time. My thoughts have been with you for the last several weeks. This blog will be great to keep us informed. I am meeting Mindi in Newark (1 hr from here) in the morning and will pass your messages to her. Keep up your good spirits. Debby, hope you brought your boots too!! Hurricans can be messy! Hang on to Jason Love, Aunt Carol
Hi Debby,
We are thinking about Jason and sending positive thoughts your way. Thanks so much for the detailed description-it sounds like you guys are in really good hands over there.
Love Deven, Ivy and Katey
PS If you had a few extra minutes...an Amazon wish list would be great. That way people could send the PSP games and other gifts really easily and quickly.
That's awesome that everything has been going smoothly. I'm glad to hear that there are multiple aggressive options available and it's pretty sweet he gets his own room. I suggest no hanky panky to be going on Deb....Jason needs ALL his mojo.
Also, cancer or not, i'm going to punch Jason in the throat if he sends me one more email to my old address. Send it to bryan.ewalt@gmail.com damnit!
Hey Jason and Debby,
Good luck with all the treatment options. It seems like you sure have a lot of options. We are thinking of you here in North Carolina. Are you enjoying the red state mentality as much as we are? We will continue to read the blog to keep up with all the developments. I should have known you two would have been on top of this. The information has been great. Hope to talk to you soon.
Brian and Sarah
What a wonderful summary Deb, I feel confident and excited for you both. I am sending my thoughts and prayers your way and am keeping my hopes up for the trial treatment.
I hope that Dr. Fluffles traveled well and wasn't a big bother on the flight over. How long will you be at the Holiday Inn? I sent a package out, should arrive there within the next 7 days or so, it's being prepared now... I put it for Jason Jensen (Guest) C/O Holiday Inn, so you may want to give the front desk a heads up, or notify them if you leave there and go somewhere else, so they can contact you when it arrives.
Hugs and kisses, get some rest, and get yer butts back here ASAP!
-Patrick Ewalt
Jason, just want you to know I'm praying for you & hope your out of there soon. This blog is a great idea too. Take care & best of luck.
Love, Aunt Susan
Deb - thanks for all of the information. I am so glad that they have assigned you a team and that the oncologist knows what he is talking about. I have been thinking about you both all the time. Everyone I know is praying for you and sending you lots of love and positive thoughts. I will definitely go out there as soon as it is convenient for you. In the meantime, I will try not to mess up any more of your computer equipment. Pita misses you, too. She sure can fill a litter box though! It must have been the tuna I gave her the other night.
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