Posted on December 5, 2017
Posted on December 5, 2017Hi Everyone,
Sorry it has been so long since we have updated this thing, for a long time there wasn't much to update anyone one on. Matt continued weekly Taxol sessions with 3 weeks on and one week off. He was feeling great for a really long time and even got to go to Las Vegas for his birthday (his favorite place). In total he completed 24 Taxol infusions. He drove himself, played with the kids and things were starting to get back to our new normal.
At the beginning of October we finally got another Pet Scan approved. Big victory as we haven't been able to get one approved since September 2016. It showed reduction in his main lung tumor, several additional spots, bones, pretty much everywhere except his liver. We truly will never know what is actually tumor, scar tissue and calcified tumor in his liver. As much good news as we saw on the pet scan it did light up in a couple of places his main tumor had the most uptake or growing cancer followed by some spots in his liver. They also saw several new spots on his brain. So the first thing they decided to go after was his brain in which they did ten radiation treatments to the back of his brain or his cerebellum. He got some fatigue from the treatments but was able to push through to go on our first family vacation post cancer diagnosis to Disneyland, Legoland and SeaWorld. We all had such a great time and we were so blessed because we truly didn't think we would ever take a trip like that again with the four of us. Trust me many obstacles tried to keep us from going on that trip.
When we got back right before Halloween, the next thing Matts oncologist decided we needed to go after was his main tumor in his lung. He decided that Matt should do ten treatments of radiation to his lung tumor. This was a big deal too because previously we had been told they would never do any sort of radiation on his lung tumor. Matt liver enzymes started to go up which they tested before each chemo treatment which pretty much told us that the cancer in his liver was growing again so his cancer was becoming resistant to the chemo at least in his liver. As some of you know back in April when the cancer was growing his liver became enlarged and was twice almost three times the size a normal liver is suppose to be. It started pushing his organs all over the place causing him to not eat much and throw up often. He was starting to experience some of the same symptoms so his oncologist knew we needed to change treatment asap. He started looking into clinical trials and many he didn't qualify for because he still needed to have radiation to several small tumors at the top of his brain. They found him a clinical trial but he had to get tested to make sure he didn't have some certain gene that would cause his liver enzymes to spike (the last thing in the world he needed to have happen). While we waited for results of the test to make sure he could qualify for additional treatments if needed he had stereotactic radiation done to his remaining brain tumors. This one a one time treatment that lasted around 45 minutes. Radiation continues to work for up to a month after so he is continuing to experience some side effects from all of the radiation he has had in the past month.
We found out that he didn't have the gene so he could go ahead with the clinical trial. This clinical trial consist of taking another kind of chemo called Oratecan which is actually a new pill form of a chemo that has been used previously in a iv formed called Irinotecan. They are currently testing this pill to see how much everyone can tolerate. We spent 12 hours at the hospital last Thursday. He started with a meeting with the nurse practitioner followed by taking steroids and anti nausea medicine. Then the fun part his new chemo consist of taking 30! pills. They were little at least but it was still a lot. The worst part of his new chemo is he can't eat for 8 hours before and 2 hours after which equals a very grouchy Matt. The rest of the day consisted of tons of blood tests and at one point he even got his own hospital room because the chemo center closed for the day. Since then he has had some vomiting and nausea. We honestly don't know what it is from it could be the radiation, chemo, his liver being enlarged again, or the cold circulation around our house currently.
We definitely could use extra prayers that we can get his nausea under control, the chemo starts working and his liver to start shrinking!!!
In case we don't update this again soon we hope everyone has a wonderful holiday season and as always we are so thankful for everything everyone as done for us!
Love from all of us,
Matt, Alyssa, Hudson & Aubree
Posted on June 13, 2017
Posted on June 13, 2017Matt started Chemo (Taxol) back in April. He is doing so much better physically. He is eating, sleeping and even starting to be very active again. The doctor is even amazed that he has kept his hair. Right now he is doing three weekly chemos then having a week off. Matt has done two rounds so far.
He did scans yesterday of his chest and abdomen then also a MRI of his brain.
For the first time ever we left the doctors after a scan with good news. We didn't tell everyone the extent of how bad Matt's liver truly had gotten because we didn't want to scare anyone but in April it was more tumor than liver. His liver had grown huge and pushed all of his organs all over the place. If you saw him you would of thought he was six months pregnant.
We pretty much dread his scans but we were really hoping that since he was acting so much better his scans would reflect that, For the most part they did. His liver shrunk tremendously and his organs are going back into place. He still has tumors in his liver but a lot are starting to calcifie (they are dying) we are praying that they continue to die more. Out of all of the scans we have seen we have never seen this occur before.
Back in April Matt didn't have a chest ct so we are not sure if things were growing or the size of anything so they compared everything to his January scans of his chest. His original lung tumor has shrank but there was one tiny new tumor in his lung. We aren't sure if that was there in April and we just didn't know about it so we will watch it and hope it shrinks some more.
His brain still has some tiny tumors and there is one new one. All of the doctors can't agree if we should do radiation on it or wait so for right now they will just watch it.
The plan right now is to continue weekly Tuesday chemo sessions and then do more scans. After that we will go from there.
We honestly never really come home from the doctor with good news so we had to share. Thank you for the continued love and prayers. We appreciate it so much and we can't forget everyone that watches our kids for us. We are so thankful!
Posted on April 13, 2017
Posted on April 13, 2017Here is our super long over due update. We apologize for taking so long have has been crazy in the Payne household.
Matt finished chemo on January 11th. We did repeat scans and met with numerous doctors. We pretty much get told the same three phrases over and over again. We are really confused by you. Your cancer is not responding like small cell lung cancer and you do not fit any criterial for this disease. His scans showed reduction in his lung Tumor and tiny growth in his liver. We really don't know about anything else because we learned that pet scans are not the norm to get for small cell lung cancer.
At this point everyone agreed we needed to try immunotherapy. To put it simple terms it is where they infuse medicine that is suppose to boost your immune system to fight the cancer itself. It is not fda approved for small cell lung cancer and most likely you have seen the commercials for opdivo and listen to the huge list of side effects. The most common is this medicine attacking your organs.
To say we were amazed when we got the immunotherapy approved the very first try was a shock. We started the combination of yervoy/opdivo on February 22. We were able to do two infusions before Matt's liver enzymes sky rocketed. We did repeat scans last Wednesday of his liver.
We found out that to say it nicely his liver his not very happy and the cancer has made itself at home there.
Matt is starting chemo again next week at the University of Colorado hospital. It will be every week on Tuesdays. The goal of it is to get his liver enzymes down and start shrinking liver tumors. This will open doors for clinical trials and other drugs.
We need lots of extra prayers to accomplish those two things.