Next Steps…

 I’m glad this week is over! It was a 2 scan week this time and a doctor appt on Friday. As I’ve said before…I really hate these weeks. So much anxiety and worry. 

I met with Dr Low yesterday. It’s funny how once I know the results and the plan that I feel better. Even though the results weren’t awesome…the tumors have grown and are spreading. That being said again, it’s a slow growing cancer. He didn’t seem too uptight about that. And I was pretty positive they were growing and spreading, I can feel some of the tumors just under my skin and can tell they’re getting bigger. 

The chemo I’ve done up to this point has not been very effective. Which is so lame. It feels like a waste of time. But like my friend Anji said, it’s all good info, we now know that didn’t work so we move on to the next treatment and find something that does work. Almost like a science experiment! Only….it’s my life and I wish I didn’t have to experiment! 

He would like to start me on immunotherapy. It works much differently than chemo. It’s not poison! It’s designed to work with your immune system to treat the cancer. It can cause different side effects and still make you very sick. Before cancer I wasn’t so worried about side effects from medications. But now I am. It’s been almost a year ago that I got such horrible side effects from oral chemo and had to stay in the hospital for 2 weeks. That was so scary. Even Dr Low was scared. First, I don’t want to be so sick again that I end up in the hospital. And second if the side effects become that bad I’ll have to stop the treatment and find something else to try.

On the positive side, research has shown this treatment to be effective for Neuroendocrine Cancer. Usually side effects are not as bad as they can be with chemo. Dr Low has had success using this with other patients. He told us yesterday, “My hope is that you stay on this for 2 years and at the end of the 2 years we stop the treatment for a time because it was so effective!” Me too Dr Low, me too! He said he also feels this treatment could stop the growth and shrink the tumors. That would be fantastic! 

The crappy part about this treatment is insurance is going to be hard to deal with. It will be a fight to get it approved, but Dr Low said “we will win!” It just might take some time. Why do insurance companies think they know more than doctors? This treatment is FDA approved for some cancers (mine isn’t included even though it has shown to be effective for NETS) 

Once approved I will go to the infusion center every 3 weeks for an hour long infusion. Not too shabby! Then scan every so often I guess to check how things are going. And continue that for as long as my body allows. 

Side note…I still don’t know how the radiation did on the tumor in my spinal cord. Still too early to scan. 

Prayer requests for my prayer warriors: 

1- that insurance won’t be too difficult and that it can be approved in a timely manner. I want to keep fighting and asap.

2-that my body will be ready for this new treatment and accept it well with minimal and manageable side effects. 

October has been a busy month full of adventures! I’m so glad I could be here for it all. Being with my family and friends making memories is my favorite thing. Now we are mostly home to get going on the next plan. Also…there’s no place like home!

Loves to all who want to keep up with my life. You’re just the best and I appreciate your prayers and concern more than you’ll ever know! 

Jenny