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 campusMonday night football. I rode the train with about 3k of my new best friends.
Last week I went to Seattle for a football game and returned with a cold virus. Side note, being a football photographer would be a dream job! I've done free lance for some newspapers...just putting it out there, hint hint! Today is my 1 week cold-anniversary and we're settling in nicely. I can't say that I wish I had something interesting to report because no news is good news. I still haven't learned how to blog, so when I get an email like "how do I contact you?" I try to reply directly. "How do I sign up for notifications?" That one, I have no idea. I feel kind of like an open book at this point, but in my email/facebook questions the last few weeks, most have asked about my fatigue and side effects after Car-T. The cold is evidence of one side effect, my "compromised immune system." How I hate that phrase. There are times when I don't even want to leave the house because it seems like a Howard Hughes level of germ paranoia. I have a bottle of anti-bac in the side of my purse at all times (only not at a football game because purses aren't allowed.) Fatigue? probably none. I've never been someone who takes naps and I still don't. I have been an insomniac, and I still am. For that I've amped back up the yoga and it's helping.
There's a lot of exciting advances in immunotherapy right now, so many that I can't keep up. I'll do what I can, unfortunately I had to delete some of my earlier posts regarding study info and advances because--luckily enough--my blog has recently been featured on some type of Russian spam site. Sorry Russia, no offense. It could easily have been Nigeria. Anyway, the point is that some of my posts are getting a TON of traffic. If emails could be weighed, at least a ton. I thought they'd fade away but I don't want to mess with it and they're persistent! Since I really have no idea what I'm doing...I just deleted the posts.
Happy Labor Day! Is summer really almost over?
Dear NFL, I'm available.
What I love about this shot. It's Russell Wilson on the right, and those are the names of the players on the left.How bout them Cowboys? Yeah, they lost.
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.
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!
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.
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:
my family also thought that was an unflattering pic and publicly apologized on social media for my sour puss face (time insisted no smiling.)
I was asked for my autograph! Hilarious.
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.
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 Seattle shot I took on my last visit a few weeks ago. This city really is great.
October--I'll backtrack a few months. I had another PET/CT scan which was totally negative, and also not a single detectable b-cell* in my lab work. My cancer killing cells are still working. It's a fantastic, couldn't-be-better report. I was upgraded to NOT getting a PET scan every 3 months. Yay! Having scans so frequently is not great, because of repeated exposure to radiation. My doctors are very cognizant of trying to avoid it if possible. IF POSSIBLE. I'm sure by now I am well over the recommended lifetime exposure to scans, but the alternative is kind of the same. No bueno, it is what it is.
January. I'm flying for my appt. because who knows if the roads will be open. The flights from where I'm at to Seattle have been canceled. The airport is an hour away. 3am I'm up to go catch that flight. But who am I kidding, because I'm going to go have some tests done, basically learn my fate, so there was no sleeping anyway. As my husband is driving me to the airport, our vehicle malfunctions? I'd say breaks down, but this is a newer car that starts acting squirrely displaying all kinds of error messages. Return home for MY car--and let's just say I'm not very sensible for highway driving vehicles. I tend toward very small, impractical things with removable tops. It was an EXTREMELY COLD and slow trip. We were almost out of gas but there was NO TIME to stop. Somehow the plane arrives an hour late. Uber to the clinic, no idea how late I was for my 1st appt. This kind of thing stresses me to no end.
I wait for-ev-er for the appt. with the Dr. Somewhere in there I creep to the desk to see if maybe...perchance...there is an earlier gap in the schedule. There's a chance. I arrive 30 minutes before the gap and they take my right back for my vitals! 2 hours early, I'm elated and shocked! Then I'm sent back out to wait...my regular time rolls around and I'm summoned, then told don't worry, he's only running "a little" late. I'm the last spot of the day. Everyone is coating up & heading out. I'm worried I will miss my flight back. I insist on leaving the room door OPEN so I can glare at anyone who passes. Brush my hair, listen to show tunes, try not to have a meltdown and pace the room. Mentally recite the poem "If" by Rudyard Kipling, specifically dealing with Triumph and Disaster. I give myself a mental deadline to make it to the airport at boarding time. It comes & goes. Ask random person in the hall...how can I get there in rush hour traffic? Mentally calculate cost of missed flight vs. uber or taxi.
My appt is great. Everything is GREAT. I suspect that everything that has gone wrong was just so I could savor how sweet good news is. I've been feeling fantastic, and now even the scan is optional. As always, I inquire generally about the rest of the study. Progress? How are other patients doing? What a difficult, roller coaster job that must be. My doctor is thrilled with the successes, but I can see the turmoil over the patients who weren't a home run. He is so determined to unravel this process and improve it. It is a puzzle that has some of the most brilliant minds working on it. It overwhelms me still. There is no end to my gratitude to these medical professionals. I want to hug all the staff I know as I leave, but I don't. The mental tab for my Uber to the airport doesn't phase me. I wait in the rain for a lost Uber driver who can't find the clinic and is not happy to go to the airport in rush hour.
I make it on time! The Uber driver is my hero! I give him a tip equal to the fare! Life is still great! Straight to security I realize my drivers license is nowhere on me. I lost it at the OTHER airport that morning. Meltdown Level 5 is approaching, but I meet with a TSA VIP and every document I have that identifies me and get through. Naturally the plane is late, my joy is unphased. Email from Uber...my driver isn't paid because my card is declined. Suspicious of fraud, my bank has protected me but marred my reputation as a decent Uber user. I refuse to get upset.
Broken down car. Lost my license (the thought of that ugly ass mugshot floating around annoys me, along with my info!). Still in the running for fantastic day award.
*b-cells are a natural part of the immune system. my cancer is a b-cell cancer. the treatment targeted ALL b-cells successfully, so part of my immune system is now missing.
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.
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!
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.
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.
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.
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!
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.
