car-t

and he disregards the rest.

When I had my transplant, I had that simon & garfunkel song in my head (an earbug?) so much that I downloaded it. It did not bring me comfort--at all. Now when it plays through my mind, I think about the words peppered in about car-t which would NOT be called official by any one, but have been said by the "experts." Words like "success" and "cure." I hear them and disregard the rest.

Did you come for a health update? I had a CT scan last week. How can they keep saying things are getting better? If you are here, then you probably understand this lingo so I will give you specifics. You know a normal lymph node is about 1-1.5cm. Sometimes it depends on the radiologist and how meticulous they want to be, or so I'm told. I had a string of lymph nodes that were kind of "matted" together a few years ago. Evidently the sizes are either the same, or in one case, I went from a 1.4x1 to 1.2x1.

It could be that mashed potatoes taste a little more delicious or that the Cowboys are beating the Redskins. My turkey kind of tastes like it was cooked at McDonalds, no flavor and questionable, but I'm here and I feel fantastic. I have seven client sessions to edit this weekend, I'm afraid to leave the house to have lunch with my friends from out of town (see Howard Hughes level germ-o-phobe referenced earlier) on this black Friday weekend but I'm here and I'm doing it.

I finally caved & deleted some blog posts because I could NOT shake those Russian spam emails. Bad news, they found me again. Maybe I should be flattered, but I'll keep ignoring them, because in GOOD news, glorious thankful news, I've had 4 more CART19 patients find me because of this little blog. In your face scammers! Seriously though, if someone wants to hook me up to go on Harry Connick Jr's new show before it gets canceled, I'll drag Dr's Maloney & Turtle with me. Hint Hint!

Happy Thanksgiving everyone. Don't give up hope.

Fred Hutch campus
Fred Hutch campus
Monday night football. I rode the train with about 3k of my new best friends.
Monday night football. I rode the train with about 3k of my new best friends.

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I'm not going to bury the lead on this. Seattle is opening the FIRST IMMUNOTHERAPY CLINIC! I attended the Science Spectrum in Sun Valley and my head is reeling. There were 3 featured speakers who each deserve their own blog post, plus in other HUGE news for me, I met Dr. Gary Gilliland from Fred Hutch! Yes, THAT Gary Gilliland, star of the earlier blog post. Separate blog post on that coming up. The three speakers were Dr. Julie McElrath, whose recent research is on an AIDS vaccine, Phil Bradley, Ph.D, who is focused on protein research right now, and drumroll...Dr. David Maloney! If you're reading this blog then you should already know what research he's doing that is changing lives. I also met equally amazing spouses. 100% equally amazing. Look, I am not a fan of overuse of the word "amazing." I'm telling you all, the word amazing was designed to describe this group. Global humanitarians.  Simple Resume: Change the world, improve lives world wide. They inspired me so much, that as I drove to the airport, I called a community leader in my own home town to find out more about where I can start to get involved, albeit on a much smaller scale.

As with almost everyone I've gotten to meet at Fred Hutch, these 4 could not be more down to earth, kind, and inspiring. The event was put on by an entire hardworking support team. They all give so much of themselves. One of my favorite things about the team at Fred Hutch is that everyone works together cohesively without ego, all for a common goal of helping others. Their model of patient care is like no other place I've been and it is remarkable. Experience level 4 on that. It's not like I've been to every single clinic in the US. On top of all that, they attract the best & brightest. Being around the group of people not just wanting to change lives but actually making it happy is a bit intimidating.

The other big big BIG news is that the trial for immunotherapy in breast cancer is starting in August! To be fair, there is another immunotherapy cancer trial starting and I can not remember which one. Many apologies, when I find out I'll update.

It's still surprising to me that some people read this, since I think it's not exciting for most. That being said, I read all the emails I get, and if any of you have ANY questions at all about what my experience was like going through the CAR-T trial, I will answer it here. I won't name names. Most recently, here are the questions I'm getting.

Where was your cancer? Pretty much everywhere, but NOT in my bone marrow. I even had a lump on my head which Dr. Maloney said probably wasn't cancer & I insist otherwise. A PET scan does not scan above the ears and taking a biopsy to see who was right was not at the top of the to-do list considering I was staring death in the face.

You didn't have ANY side effects? I would say yes and no. The CAR-T cells did wipe out my B-cells so I have now had 3 infusions of IVIG to help protect me from getting an infection. Over the last year, 3 infusions, the most recent last week. The "storm," no. I wrote a blog post about my very boring no-side effects situation last year.

but...you look so healthy. Thank you. Thank you God, and thank you to the team at Fred Hutch for saving my life.

Send me some questions, it would make my day. AND, if anyone has any interest at all in help support this research, please let me know. Any amount helps. It's all I want for Christmas. I mentioned to Dr. Gilliland how when I started this blog, I only bought the webspace/domain for a year because my future was so uncertain, I didn't want to commit to 2, 3, 10 years. The last 13 months have gone by in the blink of an eye, but there are others facing this just starting. Time and health are not something to be taken for granted, not for me anyway.

CAR-T CART
Science Spectrum 2016 at the home of the wonderfully gracious Donderos.

 

Link

I am fast approaching my 1 year mark since I received my car-t cells. July 2nd! On my recent lab visit, there was a research kit to get my 1 year mark samples. It's tough to believe it was a year ago. I guess I should mention I am still in remission.

A few weeks ago, there was an ASCO conference in Chicago. Being the science/medical geek I am, I had to look to see what I could find on Car-T being reported. Lo & behold there is one of my favorite doctors giving results from my study! Dr. Turtle refused to come wear a party hat during my t-cell infusion, but I did buy one for him. I forgive you Dr. Turtle!

cd19 car-t cells complete response

There is much going on in the entire field of immunotherapy. I was fortunate enough to compare notes with another car-t patient (different study completely) who also achieved a complete response. That's "CR" for those of you who don't read medical journals for fun. An added level of miraculous-ness to our results is the closely guarded secrets of how this treatment works. I've explained it loosely here, and to me, it is NOT chemotherapy. I've been asked "well, when will it be on the shelves?" My answer is "never." It's not like that. Maybe I'm wrong though. It's my own t-cells being re-engineered to kill cancer cells.

My IGG level has crept down again, and I will be having an infusion again in a few weeks. I'm just barely above the cutoff for having the infusion so I was told to "plan on it."

In related news, my domain & blog hosting is expiring, and considering how much it costs I can't believe how crappy this blog is. I really should be able to do more, but my blog ignorance still holds me back. I will most likely renew it. I'm still surprised by the people who manage to find it and email me. If I can figure out a way to put contact info on here I will, without being a target for spam bots.

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My worldwide media blitz is coming to an end. I completed a slightly uncomfortable interview with Univision in Bogota, Colombia. Columbia? Colombia? Wherever Bogota is. Uncomfortable because I speak nada of Spanish. Uncomfortable because this was the interview where I began to realize a trend throwing some "gotcha!" question in there like "how much does something like this cost?" I have no idea. I have insurance. That's not to say I didn't have out of pocket costs, of course I do.

My fun takeaways from the TIME interview:

  1. my family also thought that was an unflattering pic and publicly apologized on social media for my sour puss face (time insisted no smiling.)
  2. I was asked for my autograph! Hilarious.
  3. I won a $50 bet because not a single person ever recognized me after what some family members REALLY believed was going to be a huge recognizable thing. REALLY happy to win that.
  4. This is the BIG one. I did NOT NOT NOT have high dose chemo to prep for CAR-T! I don't know how or why there was confusion over that, but it's wrong!

I was asked how I wasn't ANGRY. Repeatedly during interviews I hear the term "guinea pig." I'm not going to get on a soap box on how "angry" that phrase makes me. I guess that's one way to look at it, maybe it never occurred to me because I've never felt like I'm living a practice life. This isn't my dress rehearsal. I've been my own guinea pig my whole life.

I did a local newspaper interview which the AP picked up...my grandma totes that around and tells anyone who will listen that the Fred Hutch drs are the "new specialists" in my little burg. No Grandma, not quite.

I will apologize for being so generic, but my own personal results continue to be ridiculously normal. I don't know the status of every patient in the study but I know I'm not the only one who has had continued complete success. It makes me so happy!

If you're just joining me, this blog is pertaining to my participation in a CAR-T immunotherapy clinical trial. CAR=Chimeric Antigen Receptor. T=T cells. The re-engineered t-cells target malignant (and non malignant) cancerous b-cells of my non-hodgkin lymphoma.

The light rail goes all the way to UW now!

Gratuitous pretty Seattle shot. This city really is great.
Gratuitous Seattle shot I took on my last visit a few weeks ago. This city really is great.

I just saw this link, I can't believe that I either missed this article or somehow forgot about it. Most of the information that is out about car-t cells quickly revolves around the financial aspect and who is going to make the most money off of it, while my interest continues to be how many patients will benefit from this and how quickly lives can be saved.

Car-T Article from April 2015

In an attempt to keep this blog about Car-T & it's side effects, I'm going to address the topic of hair. As I wrote about in an earlier post, I did have 4 days of chemo prior to my infusion of t-cells. The chemo was primarily to suppress my existing immune system. It is so early in these studies that there isn't a consensus on the best way to go about administering t-cells. The Drs are learning right along with us. I am hesitant to speak too specifically about my particulars because there isn't a handbook that is being used, and my situation most likely will not be identical to another patient's. All that said, I'm naturally fond of not losing my hair. It was/is kind of a big deal to me. I've been there. Depending on the trial & the doctor, I'd guess that if someone was going to have cart19 immunotherapy, the recommendation would be a chemo prep that would cause hair loss. Also having said that, in anticipation of my own therapy, I found another patient--stalked may be the appropriate term-- who had kept hair and you can bet I got to the bottom of that. How was that possible? Long story short, it depends. Personally, I feel that if it's a question of living or keeping hair, the hair has to go. In reality, I addressed my affinity for keeping my hair before I signed on for the trial. The doctors were split on dealing with it, with one doctor saying okay, and one doctor's exact words being "He told you WHAT?" in complete disbelief.

Last night was the Super Moon/Eclipse/Apocalypse/Etc. Yours truly drove out to what was supposed to be the middle of nowhere to find about 300 others who also had the same idea. You'd think this was a big deal or something. Since I live on the edge of the middle of nowhere, I packed up and headed to the middle of nowhere versions 2 & 3 and got some photos. Stars! Yay!

eclipse

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!

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Like most cancer patients, scan time is anxiety-ridden. I've tried to explain it to my family that it's like visiting a probation officer every 3/6/9 months...whenever it is...to learn my fate. For example, I'd love to plan a vacation, but will I be having treatment? I'd love to adopt a dog...but if I'm spending large chunks of time away from home, who will care for him? Sometimes thoughts are more morbid. Should I buy this sundress? Will I live to wear it? When I was originally diagnosed, I received some excellent advice from a doctor. Live in the moment. Take it a day at a time. At the time, I thought "save that hallmark card crap for someone else, buddy." It took months for it to sink in. During a time of treatment, it's sometimes difficult to find solace in one day at a time, when days are filled with doctor appoints, blood draws and all the unpleasantries to which a cancer patient is subjected. More often I think "these people are working to save my life."

Thankfully for most people, these aren't thoughts that are considered daily. I was one of those people, even after my cancer diagnosis. I had a lengthy remission during which I happily adopted 2 dogs and took many vacations and purchased many sundresses! This morning before my scan, I did a body inventory. Despite being too nervous to get much sleep last night, I felt pretty good. I reminded myself that I DO feel good. No matter what the results are, I feel okay and I'll feel okay tomorrow too.

Since I am participating in a clinical trial, my scan was done in a new-to-me location. The procedure is the same, but the techs were different. I gave up trying to read the faces of my usual crew for clues or asking them to tell me the results (they won't) a long time ago. Until today, I couldn't help myself. I had schmoozed the tech or so I thought. Tried to be as charming and irresistible as possible. Casually ask "so how did it look?" which got "it takes awhile to process." Slippery. I said "So you can tell me as I leave?"

"I can't tell you anything. When do you see your doctor?"

I've had a complete response. 100% no metabolic activity. That IS my fight song, take back my life song. Prove I'm alright song. There have been many tears of joy today. My heart is full of gratitude.

 

 

I met with my oncologist today, who is also the head of the CAR-T study. I've seen him for years now, and he's an amazing human being. As smart as they come but personable and humble. I digress. When I saw him last, my latest blood work for the trial wasn't done yet. The research labs are much more complex than normal blood work and also much more time consuming and costly. Last week though, I was told that these labs were kind of the big ones. Not even kind of, they were. These were the results that would show whether the CAR-T19 cells were going to multiply on their own and circulate in my body instead of just going away.

Today I am thrilled to report that they have multiplied like crazy!

I would be remiss if I didn't clarify that just their mere presence does NOT mean they have wiped out all the cancer. It is possible that they're in there...multiplying like rabbits and taking a nap. Killing no cancer, drinking beer and watching football, who knows. Anything is possible. This was one more step to my success with this treatment though, and my doctor was VERY happy with how well those critters are growing. Yay, t-cells!

Another CAR-T video

One of my new favorite people, maybe one day I can meet this man.

Last but not least, today I also learned that the paperwork is finished for a newer version of this trial starting roughly in 6 months. I think there is already a newer version starting at Memorial Sloan Kettering, and this is NOT the same thing. That trial at MSK is being called "armored CAR." Catchy!  I would try to explain it, but chances are I would get too many details wrong so I'll save that for later.  Also, I don't think it's a secret since it was shared with yours truly, but it's also not front page news and it's not really mine to share. It sounds very exciting though. The second I come across legitimate information that's released, I will share.

It's been a whole week without an update, and today's update is equally small. It's nothing but a  waiting game now. It's challenging being away from home, but it's not too bad. Today's small amount of news is that my recent research blood work shows that the t-cells ARE doing what they should be doing. They're hanging in there, they are expanding, the other cells that should be making an appearance with them are also there. Good news! Bad news? It's too early to know anything for sure.  I no longer have daily labs, I'm now on a 2x a week schedule. Everything is going well. The word "optimistic" was used multiple times today.

I have moments where I am hit by the very real possibility that this could all be behind me soon. Living a life without worrying about cancer seems within my grasp. I try to be prepared for any outcome, there are no guarantees. Yet CAR-T cells are so promising, I can't help but be overwhelmed at how fortunate I am to be on the ground floor of this treatment.