Journal entry by Carmen Krause —
So I was hesitant (and still am) posting since we haven't really received solid news regarding his last MRI on 4.10.24 but I will let you know kinda what is going on.
He had a MRI on 4.10.24 and according to Duke the do assume the tumor is growing back. They compared the MRI from March, the PET scan and then the MRI on 4.10.24 and to them it looks like it is growing. Matt is still feeling well and we are well into this new protocol. The MRI did show a lot of dying tumor in the middle of what they think is possible regrowth, however they kept side stepping the question when we brought it up. They were only worried about starting Matt on a new chemo. We both agreed that we really wanted to wait and get another MRI in May before starting something (unless of course the cancer was all over his brain or something horrible). It wasn't though, but they were persistent in pushing SOMETHING for him. They offered once again surgery, biopsy or chemo. The chemo they offered doesn't have the best track record. In fact there are a few people that I have talked to and they blame this chemo for killing their loved one. It has a less than 10% chance of working and if it does work, it only keeps the tumor from growing and usually only works for 2-3 months. This chemo doesn't kill the tumor.
The doctors and nurses also told Matt that he doesn't match his scan. He looks too good for it to be growing back. Although that doesn't mean it isn't growing.
This news scared Matt and decided (on his own) that he was going to start the chemo. I was left in the dark with this one. His drs called him last Monday and talked to him about it. To be honest, I really feel like this was another one of their manipulation tactics. They knew I wouldn't be on the phone to press them and question everything. The chemo was ordered and was ready for pickup last Wednesday.
Matt and I had a very serious discussion regarding what the outcome would possibly be. After a very very long discussion he decided he would wait again for his next MRI to start anything and really give the protocol some time to work. At his last MRI on 4.10.24 he had only been on it for about 4 weeks. This can take about 8-12 weeks to really start working and see some solid results. Thursday he was going to call Duke to let them know he in fact would not be starting chemo but to wait and see what the next MRI says. If it looks worse then we will discuss possibly adding a chemo in.
Before he had the chance to call Duke, they called him. The pharmacy called him to say his insurance DENIED approving this chemo! If that isn't Gods hand in all of this I don't know what is.
So for now Matt is holding off. His next MRI is 5.8.24 and we have both agreed that if the tumor is in fact growing we will have to add something else. So we need prayers that this tumor is in fact DYING. Please please pray as I get so sick to my stomach adding any sort of poison back into his daily routine. The way the trial treated him has me terrified that he will be so sick and miserable again. He is coaching the kids baseball teams and is loving it and he doesn't want to give it up.
We have also sent all of his information to hopefully obtain a second opinion from MD Anderson. I hate that this is even something we have to do however Duke has been so inconsistent with their suggestions and overall everything.
So again, please please send up more prayers that his protocol we have him on is working. He has been taking Tylenol almost daily as he isn't having "headaches" per se, but just random bouts of annoyance. We know that when tumor is dying it can cause this however in Matts case, head pain of any sort is scary.
Once we have an update after his next MRI in May I will come and update as soon as I can. Again please pray that we receive good news come 5.8.24.
** Side note - his doctors still don't know that he is doing this protocol. He has no intention in telling them for a while, especially if it is working. I am sure if he did tell them they would talk Matt out of continuing with it, because lets be honest, it doesn't make them any money! **
He had a MRI on 4.10.24 and according to Duke the do assume the tumor is growing back. They compared the MRI from March, the PET scan and then the MRI on 4.10.24 and to them it looks like it is growing. Matt is still feeling well and we are well into this new protocol. The MRI did show a lot of dying tumor in the middle of what they think is possible regrowth, however they kept side stepping the question when we brought it up. They were only worried about starting Matt on a new chemo. We both agreed that we really wanted to wait and get another MRI in May before starting something (unless of course the cancer was all over his brain or something horrible). It wasn't though, but they were persistent in pushing SOMETHING for him. They offered once again surgery, biopsy or chemo. The chemo they offered doesn't have the best track record. In fact there are a few people that I have talked to and they blame this chemo for killing their loved one. It has a less than 10% chance of working and if it does work, it only keeps the tumor from growing and usually only works for 2-3 months. This chemo doesn't kill the tumor.
The doctors and nurses also told Matt that he doesn't match his scan. He looks too good for it to be growing back. Although that doesn't mean it isn't growing.
This news scared Matt and decided (on his own) that he was going to start the chemo. I was left in the dark with this one. His drs called him last Monday and talked to him about it. To be honest, I really feel like this was another one of their manipulation tactics. They knew I wouldn't be on the phone to press them and question everything. The chemo was ordered and was ready for pickup last Wednesday.
Matt and I had a very serious discussion regarding what the outcome would possibly be. After a very very long discussion he decided he would wait again for his next MRI to start anything and really give the protocol some time to work. At his last MRI on 4.10.24 he had only been on it for about 4 weeks. This can take about 8-12 weeks to really start working and see some solid results. Thursday he was going to call Duke to let them know he in fact would not be starting chemo but to wait and see what the next MRI says. If it looks worse then we will discuss possibly adding a chemo in.
Before he had the chance to call Duke, they called him. The pharmacy called him to say his insurance DENIED approving this chemo! If that isn't Gods hand in all of this I don't know what is.
So for now Matt is holding off. His next MRI is 5.8.24 and we have both agreed that if the tumor is in fact growing we will have to add something else. So we need prayers that this tumor is in fact DYING. Please please pray as I get so sick to my stomach adding any sort of poison back into his daily routine. The way the trial treated him has me terrified that he will be so sick and miserable again. He is coaching the kids baseball teams and is loving it and he doesn't want to give it up.
We have also sent all of his information to hopefully obtain a second opinion from MD Anderson. I hate that this is even something we have to do however Duke has been so inconsistent with their suggestions and overall everything.
So again, please please send up more prayers that his protocol we have him on is working. He has been taking Tylenol almost daily as he isn't having "headaches" per se, but just random bouts of annoyance. We know that when tumor is dying it can cause this however in Matts case, head pain of any sort is scary.
Once we have an update after his next MRI in May I will come and update as soon as I can. Again please pray that we receive good news come 5.8.24.
** Side note - his doctors still don't know that he is doing this protocol. He has no intention in telling them for a while, especially if it is working. I am sure if he did tell them they would talk Matt out of continuing with it, because lets be honest, it doesn't make them any money! **
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