Matt Novotny & Family

Matt’s story:

Matt was diagnosed with Melanoma on June 5th 2019 at Age 34. The original tumor (mole) was removed from his upper back by his dermatologist and sent for testing which came back rapidly as Melanoma.

Matt had his first surgery within a month to remove the remaining tissue around the tumor that was possibly affected by the disease that left him with a gaping hole in his shoulder blade due to the size of the tumor and tissue removed. During his surgery, they removed swollen lymph nodes that later came back as melanoma which put his diagnosis at stage 3.

They immediately started Matt on an immunotherapy called Opdivo. He would get this within a hour span through an IV every other week.

After three months on Opdivo he had another scan to review progress and it showed the cancer was still spreading within the lymph nodes and they decided to try to remove as much as they could with another surgery.

Matt went into his second surgery which was deemed successful as his surgeon was able to remove all the first and second tier lymph nodes in his under arm. He continued treatment and scans every three months to review progress.

In June 2020 his biopsy of the area came back free of any disease and was considered Cancer free. This was short lived as his next Brain MRI and PET scan in November 2020 showed the cancer has returned. Melanoma is hard to detect by eye so they believed it never really went away but was not presenting itself (big enough) back in June 2020 but now it is.

Matt went into his third surgery to try to remove lymph nodes from his third tier in his under arm. The surgeon got what he could but couldn’t access it all. He worked with other surgeons to try to determine if there was anyway to go into another surgery and remove more but was told all surgeons within Nebraska deemed he had to much scar tissue and the surgery itself is way to dangerous. They even discussed removing his arm to gain access to lymph nodes but it just wouldn’t be enough to get all the disease out. His only option for surgery would be outside Nebraska however no guarantee any doctors would try. His surgeon told us he believed Matts life would be taken by Melanoma.

Matt did some testing showing he had the BRAF gene which qualified him for a pill form Immuotherpy called Dabrafenib. He was taking around 4 of them 3 times a day. Initially the treatment was working however soon Matt found himself getting extremely sick taking them and they decided to stop the treatment to give him a break. During the break, His wife found a large bump on his back which triggered a biopsy to be done. The biopsy came back it was Melanoma so they did scans to his brain and body to see what was going on.

In August 2021, the scans came back and the cancer had spread everywhere. It showed tumors in his legs, buttocks, lungs, underarm, back, neck and brain. It was time to re-evaluate his treatment plan and find the next steps. Matts diagnosis has been changed to stage 4 Melanoma.

First, Matt had to undergo a surgery to put in a port for treatment since his veins were blowing and they couldn’t continue doing treatment through his veins. Then it was determined it was time for spot radiation of his brain and under arm (main tumor it was spreading from). The plan was to use “live time” radiation to “blast” the tumors in Brain and underarm and then try Opdivo paired with Yervoy for a better chance of sucess. After the radiation and treatment Matt was extremely sick and was sleeping the majority of the day and in excruciating pain. They sent Matt to an end of life pain specialist to get his pain under control so he could at least get off the couch.

In November 2021, it was time to do a scan to see where the cancer is at and if there was any progress at all. In the brain they found 4 more tumors since August and inflammation in the brain from his previous radiation. All treatment had to stop and they had to put Matt on a steroid to treat the inflammation to the brain due to the dangers. On top of all this Matt is also battling a major sinus infection which they believe will be treated as well with the steriod.

After Matt was feeling a bit better he went Omaha at UNMC to get a second opinion on his treatment plan to be sure every box was being checked twice. The oncologist there determined he had the best treatment plan and that if it doesn’t work the last resort would be trying to get him into clinical trials.

Melanoma is one cancer that has the least treatment options as it’s been the hardest cancer to treat and understand. They say 5 years ago, matts diagnosis would have taken his life within 6 months. Immunotherapy is giving him more time with us, there is no cure, that’s what everyone keeps telling us.

In December 2021, Matt had another round spot radiation to his back, armpit and Brain and started his immunotherapy back up. As he was healing from his radiation his wife Amber got a severe case of covid and had to be separated from the family for several weeks and though Christmas. Matt at this time had 3 children to care for while going though treatment and isolating from the world and his wife.

Matt started to turn white, his hair, facial hair, eyebrows, eyelash etc. The treatment was presenting itself as working as the loss of melanin is a sign the medicine is working. As his treatment started hitting harder and harder it was this amazing sign of hope that kept us going.

In February 2022 we got a lot of news and things to celebrate. First thing, Amber found out she was pregnant with a little miracle baby as it was a less than .01 % chance of this happening we knew it was a sign of good things to come. Matts scan also showed that no new tumors were present and in fact everything was shrinking from head to toe. He will continue treatment and checking every 3 months with scans.

Mid March 2022 Matt started having horrible headaches, joint pain and just full overall body pains. We were worried about covid, possibly more tumors etc. Matt went to see an ENT who said Matt has the worst sinus infection she has ever seen in her career and to avoid surgery she wanted him to go on a steroid again. One thing doctors have learned about Immunotherapy during this journey is that steroids counteract with immuotherpy and stops it from working. The real hard decision was made to stop treatment to get the sinus infection under control so it didn’t spread to his body. Last thing we wanted was the sinus infection to take his life while battling Melanoma.

April 2022 came around and Matt start regaining strength and started his treatment again and had his next set of scans late May. These scans showed tremendous progress! The cancer in his lungs, buttocks, legs were gone and the underarm for the first time is showing smaller along with the tumors in his brain. Matts set of oncologists were blown away and believe he is being impacted by this new hypothesis called, Abscopal Effect. Which means, treatments were not working and his immune system had given up until his spot radiation shocked his body back into the fight. They believe his immune system learned how to fight again and what happened to Matt will help them understand and help many cancer patients in the future. The fight continues and treatment too.

In August 2022, one year since he started his opdivo again it is time for scans. In the midst of awaiting scans results and doing treatments, His wife Amber become extremely sick with preeclampsia and had a life saving emergency c-section at 34 weeks pregnant. His son Cohen, was placed in the NICU as his wife Amber continued to fight preeclampsia. The results came back that his tumors in his brain were steady and had a reduced amount of fluid. His body scan again, amazed doctors as the two original lymph nodes they were unable to remove were completely free from Melanoma and no new spots. Matt had to care for the kids and continue his treatment while his wife was battling postpartum preecalmpsia and his son was in the NICU.

By the end of September after Amber was finally out of the hospital and Cohen graduated the NICU, everyone was home. Matt continued his treatment until the devastating news his insurance was cancelled. Not only cancelled, but they refused to add their new son to the plan leaving two months of NICU bills out of pocket and them being unable to get his needed shots and check ups.

Matt had to stop treatment and cancel his upcoming scans while applying for Medicaid and seeking assistance. Even with good RX Matt was unable to afford all his medication needed for pain as just one was $560 a week. He was unable to get approved for Medicaid and started working with his work to get his insurance reactivated. Thankfully in November, the insurance was reactivated however not backdated. Matt has been able to get his scans and treatments again under insurance and is continuing his fight.

His most recent scan results, as of November 23rd 2022 shows that the only remaining cancer in his body is now in his arm pit which is steady, 4 tumors in his brain that is steady and one tumor in the brain which shrunk from 9 mm to 5mm. His oncologist said the greatest news we have heard since 2019, Matts is on his way to be cured.

Matt and Amber have four children together and family is the most important thing for both of them. They have Jayden(12), Greyson (7), Millie (4), Cohen (3 months) and two dogs named Toby and Bunny.