Let’s start today with a Marshall quote. “If I could live on prayers alone, I would be immortal.” This is a direct quote from him earlier this week. Isn’t this the truth!
Okay, onto the next big news. We had a video call with his oncologist yesterday afternoon. She definitely didn’t disappoint. She brought a ton of new information.
First of all, she was able to talk with the medical team at MD Anderson on Wednesday. They informed her there are three clinical trials that he qualifies for. One is a chemo combo that they are just beginning to trial. This is a great potential. They also have two CAR-T type programs that are just beginning. These are K cells rather than T cells. He would need to stay in Houston for a month or so in order to get his body prepared and then injected. All three of these are definitely potentials. The only real concern is the fact they are so new they don’t know if these come with several health complications. Insurance doesn’t allow for interstate video appointments, so travel would be required. I love that insurance can control your life!! At this time, he decided to hold on them, as they will be available no matter what.
She also came across a few other local options. One is IV chemo, which we knew about. This will be a five day hospital stay at a time. If it went well on his first infusion, he would be able to get a chemo backpack and come home during the five day infusion. This would make him sick, since it is regular type chemo. May not kill the cancer, but might maintain it.
Second option is to do another oral chemo. This is another one that is in the same family that his recent oral chemo was in. Some people felt better on this one than his last one but some feel crappy on this one too. No guarantee it will work, but something to consider.
The last option we discussed is related to the Tempus testing he had. He did a genetic type test a year ago in the hopes that it would tell them the exact thing that was causing his tumor to grow. He had one small indicator on this test. It wasn’t huge, but it was slight. That being said, there is a drug combo/cocktail he could take orally which has shown to help with this, potentially. It would include an anti-inflammatory drug, celebrex and then two oral type chemos that he would alternate every two weeks. The hope is that it keeps tricking the chemo with the change so it doesn’t know how to get used to it. The other huge benefit is that this will not cause him any kidney or liver issues. He might just be slightly nauseous when he takes the chemo, but she will prescribe Zofran so he won’t have any issue with this.
I have been in contact with so many other alternative providers and all of them recommend high dose vitamins. One of the providers from Arizona, who was $70,000 for the first six weeks and then $10,000 each week after that (not covered by insurance). Yikes! Anyway, he was so kind and sent me the listing, along with some other things. That being said, I have sent the listing to his doctor to get her opinion. She agrees with the high dose vitamins, as she has seen other patients have positive results.
We also discussed the benefits of medicinal marijuana. She also said she has seen this work for some people. She had no concern with him trying the edibles. He isn’t allowed to smoke anything as his lungs are obviously very compromised. She said is it so hard to get this through insurance, but said to get it on our own. It is almost comical, as neither Jim nor I have ever done anything other than alcohol. Marshall finds this humorous.
We are so thankful that she is as open minded as she is and willing to keep working hard for us and most importantly Marshall. We absolutely love her and couldn’t imagine being on this journey without her.
Okay, so all of this being said, he had decided that he would like to try the combo/cocktail. She has called in all of the medications and he can start right away. The best part is that she said all of the options keep being available. If the cocktail doesn’t work all of the other options are still available. I just keep praying that we can keep buying him time until a cure comes his way.
Overall, we cannot thank all of you enough. Prayers and well wishes are coming from all across the country. We love each and every one of you. This journey takes a village and we couldn’t survive it without the incredible support we have gotten.
Happy 20th birthday to my baby boy!! Love you to the moon and back!!
