So tomorrow (August 9th, 2019) I receive an experimental, alternative, immune support therapy treatment. Extra prayers are greatly appreciated that all goes well and my body responds as it should.
When I met with my holistic doctor in early July, he told me he had a promising immune treatment I should consider. As he explained how my blood cells are gathered and dendritic cells are created to attack my cancer it sounded almost too good to be true. I have been reading random articles of people’s cancer completely eliminated by immune therapy, but all treatments for breast cancer have been on a trial basis. My doctor works closely with a research lab in Greece that creates specific immune therapies for cancer patients.
My blood was collected in the middle of July and sent off to Greece. My immune cells were gathered, trained, and grown over the next couple weeks. When the cells were ready they were shipped back to my doctor and I’ll receive them through a slow infusion tomorrow. The lab also can piggyback a vaccine catered to attack my cancer that is given in 6 doses over 9 weeks.
It’s all experimental, not FDA approved and not covered by my insurance. When Dr Fetters first told me about the treatments I told him that I needed to think about it and would make a decision soon.
If you look at the treatment on paper you would think well, why wouldn’t you do it?! But in my reality, I needed to take some time to take it all in. To process all of the information that was just presented. For one, it’s not cheap and two, it’s not guaranteed to work, but nothing ever is. Others may worry that it’s not FDA approved, but it takes YEARS to get FDA approval and I may not have years to wait.
In my processing, I also began to think, why me? Why do I have the means to try out these non-covered treatments and many others don’t? I had a friend fire back… Why not you? Do you think you’re not deserving? Maybe sometimes I don’t.
Then I thought, I had just returned from the Holy Land and had prayed at every most holy site for total and complete healing and when I get back my doctor is saying he has some very promising options for me to consider. Maybe this is an answer to a prayer?! Yet, here I am going… Geesh, I don’t know if I should do it. God lays it all right there and here’s me going… I just don’t see the billboard sign saying this is it… Could you be a little clearer, God? (Insert God eye roll)
So after some discussion, processing and figuring out the finances, I made the decision to move forward with the treatment.
The current medication, Verzenio, that I’ve been on since November is doing a great job at keeping the cancer in my liver stable. It did shrink the cancer a decent amount initially but has since remained stable. Based on the data of this medication, it is unlikely that it will clear my liver of cancer. It will keep the cancer from spreading on an average of 28 months (I’m 9 months in at this point). Once this medication is no longer working we would move on to another treatment and that would hopefully work for another few months and then we would try the next option and who knows what will be on the market by then. The point is, we are kicking the can down the road. Whatever treatment I take will only give me more time, with hopefully minimal side effects, until that magic bullet treatment is discovered or the most unwanted outcome occurs. I believe a magic bullet is so close to being available and that bullet involves the immune system. It’s already occurring in some stage 4 melanoma patients. The more you learn about the immune system’s relationship with cancer, it’s the most promising avenue to a cure. But, like I said, these promising treatments are in development and could take years to get approved. If I have the opportunity to try a form of immune treatment RIGHT NOW, I should give it a shot. Especially if there are minimal risks.
When I met with my oncologist last week it was a routine check-up with blood work. My blood work looks great and my numbers continue to improve. My blood counts are still not normal but they are stable or improving slightly. My liver enzymes are still elevated but each time they creep closer and closer to normal. One enzyme is actually in normal range. My tumor markers that they follow are in normal range or very close to it. So all in all, I’m doing really well. My body is tolerating the medication and it’s doing a great job of keeping the cancer in check. It’s just not getting rid of it. I still believe in a day when I go in for a scan and they can only see scarring where the cancer was.
I did bring up my immune treatments with Dr. Sulfi, my oncologist. I didn’t bring it up as I’m seeking his approval but as to inform him on what was going to happen. The reason I switched to Dr. Sulfi was because he knows Dr. Fetters and I had been told by Dr. Fetters that he was more open to working with alternative treatments. My experiences with other oncologists were that they were not accepting of alternative treatments and they would often criticize me for going through with the treatments. They didn’t specifically say it, but I knew they thought I was wasting money on treatments that would never work. I would then leave my appointments with doubt and anxiety. I hated that because I try very hard to eliminate both of those from my thoughts. I hated even mentioning my holistic treatments to my oncologist because I didn’t want to hear their negativity. So, the morning of my appointment with Dr. Sulfi, I had run through many different ways I was going to bring up the immune treatments. I decided I wasn’t going to ask for his opinion because the blood had been drawn, the treatment was paid for and on it’s way. I did, however, need his ok to stop my Verzenio medication for the next three weeks. I didn’t need the Verzenio killing the very immune cells we had the lab create!
So when the time came during my appointment, I handed Dr. Sulfi a handout on the immune treatments and explained that there was a vaccine in addition to the treatment. He shook his head in agreement as he was reading over the paperwork. I then told him… “Ideally we would stop my medication for three weeks after my treatment” I held my breath and he said … “Oh yeah, no problem.” I was shocked!! “Really?” His reply … “Sure, we stop the medication all the time for different reasons… hospitalization, low blood counts, etc. Yeah, that’s an easy answer.” Right? I know that but I know the other oncologist I have seen would have never admitted that. He would have made me feel crazy for even asking such a thing as stopping my medication. How could I even think of stopping my medication? When I would know all along that they stop the medication for brief periods all the time, they even did it for me initially when we were trying to get my dosing figured out. I just looked at Dr. Sulfi and told him “You are SO much easier to talk to than any other doctor I have seen before.” Just earlier that day when I was checking in for my appointment and the receptionist saw that I was from Batesville. (His office is in Richmond, IN which is about 1.5 hrs away.) She said, “Boy you have a drive” I told her “I drive for good doctors.” She just smiled because everyone in that office knows that Dr. Sulfi is one of a kind.
So tomorrow … I’m not exactly sure what to expect as far as side effects. I could have flu-like symptoms, a fever, etc. They could start while I’m getting the infusion or hours after. We will just have to wait and see. I’m going to bed tonight saying extra prayers of gratitude that God has lead me down the path I’m on. I know every detail has been perfectly planned in the exact right timing. Each struggle along the way I have learned and grown so much. Praying that the immune cells take, do what they are supposed to do and I can start to say farewell to this cancer that has taken up space for far too long. AMEN!
PS: I will have some follow up blood tests in the next couple months to check in on my immune system to see how the treatment is taking. I will also have my next MRI scan of the liver at the end of September. Praying for good news all around! THANK YOU TO ALL MY PRAYER WARRIORS!!
If you would like to read more about the treatment you can go here.