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.
Posted on December 21, 2016
Posted on December 21, 2016Since our last update we were scheduled for a PET scan to have a better look at Matt's liver. At the last minute our insurance denied the scan but we were able to get squeezed in to see the head of lung cancer research at the University of Colorado Hospital on 12/14/16.
Here was his plan as told by Matt.
1.) Even though it is extremely rare for someone like me to get SCLC, assume this is SCLC and finish rounds 5 and 6 of chemo with my current oncologist as I'm experiencing a clinical benefit from the chemo. Do follow up scans in late January 2017 to assess.
2.) In the meantime, he is having his pathologist review my original slides as well as some original tumor tissue that I have to make sure that I wasn't misdiagnosed and actually have NSCLC or that I didn't start with NSCLC that morphed into SCLC. This was supposed to be presented to their Tumor Review Board on 12/19/16. They also took blood to do the Guardant360 liquid biopsy to test for any possible gene mutations in the event that I don't have just SCLC. He said he will follow up with me next week if all of the information is available.
3.) If my January 2017 scans show I still have active cancer, I'm supposed to transfer to him and he will start me on the Opdivo/Yervoy immunotherapy combination. This would be outside of a trial and he expects that he will get my insurance company to pay for it even though it isn't FDA approved for SCLC as he recently had another insurance company foot the bill. This was based on an updated guideline from the National Comprehensive Cancer Network (collection of 27 very large Cancer Centers in the US, includes MD Anderson, Mayo, Dana-Farber, University of Colorado, etc.) that added this immunotherapy combination to their list as an effective 2nd line treatment for SCLC.
4.) In the event that immunotherapy doesn't work for me, they are already sending off some of my original biopsy tissue to test for the DLL3 biomarker for the Rova-T clinical trial as a 3rd line treatment. If I do test positive for DLL3 and immunotherapy doesn't work, this will drastically speed up my ability to get into this trial.
5.) He is not 100% sold that the spots in my brain are mets and believes that they could be benign meningiomas given the location up against the meninges and the fact that they didn't grow for 2 months. If he is wrong and they grow he only wants to use SRS, likely CyberKnife, and recommended against WBRT.
6.) Go see an ENT after round 6 of chemo to plump up one of my vocal cords to try to reduce my hoarseness. He told me that I should get most of my original voice back with this procedure.
7.) If it turns out I was misdiagnosed and only have NSCLC, forget this plan and figure out what gene mutations I may have.
We just want to take a minute to thank everyone for everything they have done for us the last couple of months. We have been so very blessed. We hope you all have a wonderful holiday.
~Matt & Alyssa