Monthly Archives: August 2015

Everything seems to be getting back to normal, if it can be called that. My days still have a sense of urgency to them, like I need to squeeze every moment out that I can. On days that I fall short, my night involves tossing & turning, stressing over wasted minutes. This feeling should start to subside, I've been here before. Physically, I feel good. Still. There's a caveat...I do feel different and I don't know at all how to describe it. There's the usual questions medical staff ask...are you having pain? I am not. It's impossible to know is this normal? What is this feeling?

Uh oh, this looks like it could be serious. Actual form at Drs office below.

evil spirits (1 of 1)

 

Last week I stopped in at Juno to say hi. They were excited to meet me, I was more excited to meet them! Juno is the company who magically took my t-cells and turned them into cancer fighting BAs. They turn t-cells into Chuck Norris. I think I'm going back in the near future when they can be formally prepared for my arrival. They are just so nice, it continues to humble me to meet all of these people behind the scenes who are working to eradicate cancer. I left feeling like I had met true heroes and that I wish I was local so I could try to get a job there myself.

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I think I was officially discharged yesterday. I got to go home. My clinic visit with the lead researcher Dr. Maloney was an emotional, joy filled experience. I am on cloud 9 and I can't stop thinking about how fortunate I am in so many ways. My journey into this trial and through it has been miraculous. I am not a bible thumping person in any way, but I can say I have seen God's hand at work during this and it has been awe inspiring. My doctors also bring me to tears. I'm not sick. The official time from treatment to my all-clear no cancer scan was 4 weeks.

Can you see any cancer in this photo? Neither can I! Getting a photo with these guys was almost a miracle in itself. Dr. Maloney is WAY too humble, and the others are just camera shy. Except me, I'm too happy to care.
Can you see any cancer in this photo? Neither can I! Getting a photo with these guys was almost a miracle in itself. Dr. Maloney is WAY too humble, and the others are just camera shy. Except me, I'm too happy to care.

A few things about CAR-T. T-cell therapy, CART19. This is NOT chemo or a drug. I guess it would be classified as immunotherapy. What happened was: 1) I had blood taken and t-cells from my own immune system seperated out. 2) My t-cells were genetically modified in a lab to attack cancer cells. They also attack the good immune cells, because what I have is a cancer of the immune system, lymphoma. 3) The new t-cells were given back to me. They multiplied on their own and wiped out any trace of cancer. This isn't perfect, I'm missing part of my immune system. However, some chemo drugs also have similar side effects.

Here's the thing. I may have been lucky enough to get into this, but it's NOT about me. This treatment is going to change the face of cancer. I can't stress that enough. When I was diagnosed, there was no "cure." That may be the official stance since this hasn't passed the test of time yet, YET. The face of CAR-T immunotherapy is changing and growing so rapidly. Right now, it's been used on blood cancers and a few others but the trials for solid tumor cancers are starting now if they haven't already. I pray that my participation moves this one more step forward to other forms of cancer.

I am optimistic, but only because I have every reason to be. I'm not a pollyanna by nature. I wish I could shout from the highest mountains for everyone how exciting this is for future patients facing cancer.

Please email questions to me personally, or find me on Facebook. I don't know all there is about CAR-T. Guess what, the doctors don't either. I will answer what I can or try to find out. I will be continuing my follow up with the same team. The only downside to my day yesterday was trying to deal locally to find a doctor who will work with Dr. Maloney to monitor my labs, etc. I'm trying not to take it personally.

Also, I apologize for the disorganization of the blog, blogging isn't my strong suit!