Join me as I take a journey in a Car-T clinical trial
Acceptance into a clinical trial
January 8, 2020
Well, it’s finally official. I received notification last night that I have been accepted into a clinical trial that offers a unique treatment for my lymphoma.
All praise and glory go to God because I had been turned down for the trial on four previous occasions.
The treatment is experimental but shows potential. The treatment comes with risks including the possibility of death but we believe we are on exactly the right path.
I love science and I love new technology and what we are going to do is pretty amazing.
The treatment is called CAR T therapy. Through the treatment, we will biologically and genetically turn immune cells into offensive weapons in our battle with cancer.
I’ve devoted a great deal of my last two years learning about cancer and how to deal with and defeat it.
I’ve had every diagnostic test imaginable and Heidi and I have been very proactive in my treatment. We believe that I will be cured of my cancer and that I will be restored to full health!
I hope that you find my posts enjoyable, informative, and entertaining. I’m going to document what is happening in my treatment just like it’s a winter vacation.
We know that we will move to Tampa during part of the 9-month treatment and psyched about the experience.!
We look at the whole treatment as an amazing adventure. And a small part of the in” sickness and in health” that we made to each other the day we were married.
Prayers are always appreciated
We look at the whole treatment as an amazing adventure.
(January 14, 2020)
We’re really excited about our journey through the clinical trial!
So how much progress have we made? A LOT!
Moffitt was required to perform a “full research battery “ of diagnostic tests to establish a clinical baseline. I can honestly say that I have had them all.
Many of you have asked how I feel? Look at the picture…that shows you just how blessed we feel about this process. It’s a perfect gift from God. I feel strong and healthy and eager to get Rockin this CURE. #carthero
It’s really getting real!
(January 21, 2020)
It’s really getting real!
My last biopsy for this stage of the treatment and my C-line installed!
I prefer to refer to the C-line as an external adapter for my superpower cancer-fighting T Cells.
We have temporarily moved to Tampa for the remainder of my Car-T treatment. We’re living in a hotel and commuting to Moffitt each day for treatment.
The plan is to complete the outpatient conditioning therapy and then get admitted to Moffitt the day before I receive my specifically modified T Cells.
We are amazed that I’ll be receiving the “Gift “ of Car-T therapy.
Thank you for all of the prayers, support and good wishes. Heidi and I were riding to the hospital this morning talking about how thankful we are to be on this journey together, at this world-class facility surrounded by our friends and family!
For me it’s T Day-6 and counting. I get my T Cells on Day 0.
We will begin to know that the therapy is working within a few days! I will be cured in a matter of a few short months! Stay tuned there’s so much to learn and share along the way. #carthero #dcart
Our journey is a blessing
(January 24, 2020)
Day -5 and counting.
Pretty easy really when you consider everything that my Health Care team has done for us.
I’ve had minor reactions to the trial medication Allo 647. My team was delighted because that shows my immune system is battling the trial medicine which is a positive sign!
We could not ask for more support from family, friends, business partners, customers and some survivors we have met in the past few days. Thank you all.
If any of my posts prompts questions about lymphoma or cancer treatment in general please call or text Heidi or me.
We are delighted to help anyone that we can. Our journey is a blessing and we are happy to share our HOPE with you or your loved ones!
The pictures are the 7 bags needed for today’s treatment and the medical waste that one session created!
Eat as much as you want, they say.
(January 27, 2020)
Day T-1
Eat as much as you want and eat anything that you like. It didn’t take me long to follow those instructions.
For the past 7 days, we’ve been working on lessening the effectiveness of my immune system. So that my body does not attempt to destroy my new genetically engineered T Cells.
My treatment team is awesome. I’m not sure if it takes 20 teammates to throw this Car- T therapy into high gear but each and everyone plays a vital role. And of course without a deep and trusting faith, I can not imagine what our journey would have been like!
Heidi is my ROCK she’s checking and double-checking each minute phase of my treatment!! I can’t imagine life without her, she is one of GOD’s special angels!!
When I came to Moffitt I was in one clinical trial now I’m in 3. For my nerd friends who like this stuff, two of the trials are on gut health.
My special T cells have been produced.
My special T cells have been produced. They will travel from the laboratory in California to Moffitt for tomorrow’s infusion! H will actually be in the hospital with me for 72 hours to get us through the critical stage of treatment.
If I have learned anything from this journey there is unlimited power in Mercy and Grace. The next time you will hear from me is after I’ve been genetically altered!. Thank you for following along. The word CANCER has lost all of its sting and I share with you our unbridled HOPE.
Day Zero. My cells are in.
(January 28, 2020)
Day Zero.
Cells are in. Now the donor cells and my host cells need to get acquainted. I’ll be monitored for cytokine release syndrome, neurotoxicity, bloodwork, vitals, etc.
For 72 hrs after the cells are in is referred to as ‘the storm’
Although I understand the challenges I don’t plan to participate in ‘the storm’.
As of today 1/28/2020 I am forever genetically enhanced.
… we pray.
…we wait.
Feb. 01, 2020
DAY + 4
My CAR-T Therapy is on track and if you ask me how it’s going I’d say just like James Brown on Saturday Night “I feeeeeel good!”
Discharged from Moffitt Cancer Center
(Feb. 06, 2020)
Day + 9 and counting. CAR-T treatment is going well.
I was discharged from the hospital and now I receive treatments on a daily basis at Moffitt’s Bone Marrow treatment center.
They draw my regular and clinical trial labs each morning and then tweak my infusion so that I get a mix of pharmaceuticals to optimize my treatment.
I’m still immunocompromised but that’s exactly what we knew when we started this process. I now have super T cells flowing through my veins but we have to let them fully mature. Once that occurs my lymphoma will be completely CURED and I will be immune to certain cancers for a very long time.
Heidi and I want to praise GOD for a biopsy that was scheduled for yesterday. A team of doctors was supposed to biopsy a lymph node to measure what results we are getting. They could not find the diseased node because it was no longer there. That’s a miracle and an answer to prayer.
The journey is by far not over but as we look forward the future is very bright indeed. Thank you for your prayers. We can feel them!
You can see the dreaded yellow mask in the picture. Lol, I have to wear it anytime I am in a public place.
One thing about the mask is that it’s a sign that my treatment is on schedule. The other thing that I learned is, when people see me and my yellow mask coming, they clear a path wider than Moses parting the Red Sea.
I’ve decided to take full advantage of it since I have to wear it anyway and no use standing in lines if people want to clear the way.
#dcart #carthero
My First Day Off of Therapy
Feb. 15, 2020
This is team #carthero coming to you from Tampa FL.
Happy day after Valentine’s Day! We’re celebrating our first day off from Therapy since we began our journey and we couldn’t be happier!
Until today our typical day starts at 6:30 am and we are scheduled to be in the outpatient Bone marrow transplant unit by 7:30. Our day begins with blood draws, on my lucky days I can have as few as 4 vials.
On my not so lucky days, I can have up to 20. The results determine what happens for the rest of our day.
To say I’m responding well is an understatement.
In my new gene-modified state I have millions and millions of new T cells flowing through my veins. My body knows that they aren’t my own T cells but now know that they are genetic cousins.
It’s like a family reunion. My T-cells realize that their new cousin T-cells are all young Olympic athletes that have had special forces training. Now my immune system looks specifically for diseased cells, links to them and signals that it’s time to die.
All praise and glory go to God.
The team has captured tons of data about me and my unique reaction to the treatment. My visits have been moved to an every three-day schedule.
All praise and glory go to God.
The therapy reads more like a science fiction novel than a treatment that is curing my disease. But, that is exactly what is happening. Thank you for your prayers and for all the support and kindness you have shown us. We would not be here without you.
Although the news is GREAT we still have to stay within 30 minutes of Moffitt for the next few weeks as my immune system returns to normal. Once it’s safe we can return to Port Orange and begin planning our next adventure. Life is very good indeed.
Am I in a dorm room or a rehab hospital?
Feb. 22, 2020
Has anyone watched Tiny Houses on HGTV and wondered what it would be like to live in 400 square feet? Well, Heidi and I have been doing it and we may have a few tips for you. Team #carthero has been living here since we came to Tampa for the clinical trial.
We actually call it “home” as opposed to Moffitt which I lovingly call “work”. Our little home is actually more than a home for us right now. You see when we were blessed enough to actually get a spot in the trial we decided to do it together. That means that Sirocco our 55-pound whippet was moving to Tampa with us. Except for the 8 days I was actually in the hospital he has been sharing our little piece of heaven!
Our little Tampa home actually serves as a rehab center for both Sirocco and me. Sirocco had paw surgery in late January. And, we all know what I have been doing since I came over here.
But what on earth has H been doing?
Well, here it goes. During the conditioning phase of my treatment, she took me to “work” each day and stayed with me through my infusions. Each day as I got weaker she got stronger and more determined to get her “boys” through the process.
When I was admitted to the hospital she stayed through the “storm”. The first 72 hours when things could have gone very badly. All honor and glory go to God because it did not. It was not a slam dunk. I am patient #2 at Moffitt and patient #9 nationwide. So, no one really knows how this is all going to go. Ask me in 10 years.
H walks Sirocco 4-5 times each day, does all of the food shopping and meal prep. She disinfects our home multiple times each day and has to wash all of the clothing that we wear into public. The housekeeping staff has not been in our space since we moved in…no outside germs are going to get us.
Our little piece of the world serves as a dorm room, rehab hospital for both man and beast, and office for our business. Heidi is the ROCK that keeps our tiny space functioning. We have learned so much from our adventure and praise GOD for the journey and providing the path for this amazing life. The best is yet to come.
I’ve been genetically modified for 30 days
Feb. 27, 2020
Day + 30 since I was genetically modified and everyone on team #cartthero want you to know how things are going. It’s made for a busy week here at Moffitt.
I set a personal record for vials of drawn at one session. The team needed 40 vials but other than the tech getting tired it was no big deal.
We also had a CT scan, EKG, bone marrow biopsy, lymph node biopsy, and a PET scan!
All GLORY to GOD because everything is on track.
We’re looking forward to days + 60 and +90 but for now, we are rocking the treatment.
One thing a bit funny happened between my CT Scan and the Pet Scan that were scheduled at two different locations.
The police pulled us over and asked for H’s license and registration. The officer walked back to our car and asked: “Who is Dennis?” H replied, “oh he’s the masked man in the passenger seat “. We got off with a laugh and a warning.
We appreciate all of the help and support from each of you. Thank you from the bottom of our hearts. Our journey is going just as GOD planned and we are in awe of his Mercy and Grace.
Until next time.
We have been cleared to return to our home
(March 3, 2020)
Day +35 and counting! My Car- T therapy is producing “better than expected“ results. We’ve been cleared to return to our home in Port Orange, Florida on Friday.
Since arriving home, Heidi, Sirocco and I, aka Team #carthero have spent most of the weekend going from room to room looking for each other. LOL After living in 400 square feet for so many weeks our home seems almost too big.
We will travel between Port Orange and Moffitt for most of March but we are really rocking it.
Being part of a clinical trial has dramatically impacted my perspective.
Being part of a clinical trial has dramatically impacted my perspective. Car-t is a relatively new treatment that will dramatically impact the way Leukemia and Lymphoma are treated in the future.
The HOPE is that the doctors will be able to use Cart T earlier in the disease process. And what if we can use our own immune system to destroy cancer and protect us going forward? The savings will be miraculous.
This Clinical Trial uses donor cells
My allogenic Car-T treatment is attempting to prevent or minimize the most common adverse effects of other Car-T treatments. Such as death, while waiting for the cells to be produced. My cells took 6 days instead of 30 days to produce. Cytokine release syndrome, meaning cancer dies so quickly it overwhelms my system and results in life-threatening side effects. And using donor T cells instead of my own. This means that all of my modified cells are genetically perfect. The donor cells have not been through multiple rounds of chemotherapy and other treatments. Also, Allogene pioneered producing 100 treatment infusions from a single donor instead or one infusion from my own T cells.
I believe that one day in the near future leukemia and lymphoma will be treated and CURED in a matter of weeks. We are truly blessed to be part of this amazing technological advancement. The savings in financial terms and human suffering will be immense! We believe that our journey is part of a much larger divine plan and thank GOD for every day we are given.
(March 08, 2020)
Day +40 and counting and team #carthero is feeling stronger and stronger by the day!
Something that I want to share is just how powerful our thoughts are in shaping how we feel and our outlook on the rest of the world.
In my mind that C-Line represented living a life of weakness and frailty. I wanted nothing to do with that.
When I learned that part of the clinical trial and the treatment protocol required that I have a Central Venous Line(C-line) installed in my chest, I nearly withdrew from the trial before I even started.
It was a totally irrational fear of what that C-Line represented in my mind.
The clinical trial was the one thing that we had been praying for, for months. By the grace of GOD, I had been given the chance to participate. But, I was going to walk away from it all because of my irrational fear?
I was not afraid of the surgery, the pain or even the thought of dying. It was the fear of what that C-line represented in my mind. The mind is a powerful thing. It can move you forward, stop you dead in your tracks or move you in the wrong direction.
In my mind that C-Line represented living a life of weakness and frailty. I wanted nothing to do with that.
Two months ago today, they installed my Triple Lumen multi-colored C-line. Yet, today it’s an inch long white scar on my chest. My C-line played a huge role in my treatment and now it is just a milestone in the journey.
The device that nearly caused me (not Heidi) to quit before I started left me with dozens of great memories! The three stainless steel lumens that stuck out of my chest looked like a rather large piercing. Without my shirt on, I looked like I belonged in a heavy metal band. Especially the morning I inadvertently put on Heidi’s yoga pants instead of my own sweat pants.
H also had to wrap my upper chest in press and seal before I showered. Some days I looked like a see-through mummy before we mastered the technique.
Laughter is great medicine
I also enjoyed making the staff laugh at me when I shared my skills of turning my lumens into tassels.
I became very proud of my C-line. Especially when the techs complimented me on how fast my blood samples flowed from the green lumen! It produced a real gusher! The day that my nurse practitioner said, ‘let’s pull your C-line today’, I did my very best to resist. But, to no avail. The next thing I knew I was lying in interventional radiology waiting for the doctor to remove it.
I literally begged to keep it as a souvenir but I wasn’t allowed.
I literally begged to keep it as a souvenir but wasn’t allowed. It seems, the minute it left my body it became contaminated medical waste and by law had to be destroyed. It was like saying goodbye to a friend who you only had for a short while but had a dramatic impact on your life.
I only had one C-line installed in me. But, because of the way my mind thought of it, it was a source of fear, joy, pride, happiness, and wisdom. Without it, my team could not have given me my T cells. Without it, I would not be in such a great place today.
Because of my faith I know I will be cured and return to a completely normal healthy life. I will be stronger, healthier and happier having traveled this journey.
All praise and glory go to GOD.
(March 15, 2020)
Day + 47 and counting and Team #carthero is doing great despite some minor adjustments resulting from the Wuhan virus.
Last week’s appointments at Moffitt was perfect thanks to the power and mercy of God! My medical team and Heidi have me well on the way to being cured and returning to a normal healthy life. My blood counts are returning to normal.
I’m experiencing some positive results that my medical team and Allogene (the CarT cell developer) were not anticipating.
I’m experiencing some positive results that my medical team and Allogene (the CarT cell developer) were not anticipating. That is, I didn’t lose my hair and neuropathy from earlier chemotherapy treatments is almost completely gone.
Once we’d been cleared to return to Port Orange the team was very concerned that I would lose weight. I’ve actually gained 5 pounds. SO, no worries in the weight department.
I couldn’t get on H’s yoga pants if I tried. (other than that one time, I haven’t tried, btw).
Dennis, you’re not old enough
The other thing I learned was that because as part of my treatment my immune system was totally wiped out. I need to have all of my childhood immunizations except, my immune system isn’t old enough yet. I haven’t heard anything like that in a long time. “Dennis you’re not old enough.”
The Wuhan virus recommendations aren’t really that different from the way we were living before the epidemic. The teams Chief Compliance Officer, Heidi, already ran a very tight ship at home. So we already way ahead of the curve. She even insists that we wash bananas just in case. I’m truly blessed and we already have a substantial supply of masks, sanitizer, wipes and toilet paper. We are practicing social distancing and making the most of our time together.
We are going to Moffitt this week for my midterms. I have a Cat Scan, Research labs and a PET scan on Thursday. Prayers for no new or active disease are appreciated. We are overwhelmed with Joy about our journey and the countless blessings that we enjoy.
Did you know that Shakespeare wrote some of his greatest works while the London theaters were closed during the plague? And he lived in quarantine? Unbelievable good can come out of terrible tragedy. Thank you for following along being a part of our journey.
Midterm Tests
March 25, 2020
Day T + 57 and Team #carthero wants to share pure Joy, Hope, and Love!
Last week I began my midterm tests. Beginning with research blood draw a total of 18 vials. A CAT Scan with contrast which feels as though your butt is hot enough to catch fire. However, it goes away just before combustion. And a PET Scan. Which is my least favorite test. (If you are interested in why they inject you with radioactive sugar as part of the test) just ask and I’ll give y’all the straight scoop. It’s not what you may think.
Then yesterday I had my favorite test, a Bone Marrow Biopsy please see before and after pictures. (below)
It will take 18 days to get the bone marrow results, I know by FAITH that the results are negative. Meaning no evidence of disease in my marrow.
We’ve been so blessed to be on this journey! We’re learning so much each and every step of the way. Don’t get me wrong many times it has been a challenge. BUT it is truly a blessing and a once in a lifetime experience to have an impact on how cancer is treated in the future.
Patient #2 (at Moffitt) and his caregiver (Heidi) will leave a tiny impression on how Cancer is treated in the future.
Patient #2 (at Moffitt) and his caregiver (Heidi) will leave a tiny impression on how Cancer is treated in the future. Just because we’re blessed enough to be part of a clinical trial!
When we began with our clinical trial there was no Wuhan virus outside of China. So, little did we know that would become a factor in our journey. BUT it was part of a larger plan and is little more than a speed bump in life’s journey.
We are in awe of the way that America is tackling the problem. I encourage each of you to have and exhibit just a little more Joy, Hope, and Love today and every day. It’ll make your world a better place to live.
A clinical trial was never on my bucket list
April 01, 2020
Day T + 64 and counting.
As I reflect on where we are this afternoon it strikes me that being part of a clinical trial was never on my “bucket list”. However, we are overjoyed that it now is and has been checked off.
I’m actually in three clinical trials at the same time. But if Car-T hadn’t worked the other two would probably have been cut short, through no fault of my own. If you get my drift!
Now, thanks to God and the miracles of modern medicine I have more time to add things to my “bucket list “ and actually enjoy getting them done.
BTW living through a pandemic was also not on my “bucket list” but I see another checkmark in my future!
By now you may be wondering why I have a picture of a string base in this post?
Well, the day that I checked into Moffitt before my Car-T infusion I was very “concerned” about how things were going to go!
You might imagine how many times I had to read and sign agreements that we would not hold Moffitt or Allogene responsible in the event that the treatment didn’t go as we all hoped.
They reminded me that the therapy was not yet approved. And that there were significant risks associated with the clinical trial.
I had been through conditioning therapy (strong chemo) for 7 days as an outpatient. By check-in day I was pretty weak.
Heidi had to leave to travel back home to drop off Sirocco. But planned on driving back to Tampa that night. So I was feeling pretty alone and afraid.
Even though it was early afternoon I drifted off to sleep.
Within a few minutes, I became aware of a stringed instrument being played. I thought dear GOD… it doesn’t sound like a harp. Then I heard a gentle knock on my door. And I thought, wasn’t I supposed to be doing the knocking?
At that point, I woke enough to realize that I was dreaming. I was in the hospital and that I had not died and that I wasn’t in heaven.
The knocking wasn’t heaven but it was Lloyd from the music therapy department. He wanted to play for me. Lloyd came into my room and played classical music for 15 or 20 minutes.
I was beyond happy being serenaded by someone who was trying to make my day a little better. Since I wasn’t in heaven, this meant that I had more time to work on that “bucket list”.
Since I wasn’t in heaven, this meant that I had more time to work on that “bucket list”.
Thank you for following along and being part of our journey.
BTW we are doing great. Exercising each day and practicing “perfect social distancing “‘ so that we can keep adding to the “list”
Those Masks I wear
(April 05, 2020)
It’s day T + 68 and team #carthero is doing better than great. We’re praising GOD that everything has gone well beyond what my doctors believed would be my rate of improvement.
Now that the CDC has recommended that because of the Wuhan virus wearing a mask is recommended. Let me share a bit of advice that we have learned during our journey:
Over the course of my treatment, I have HAD to wear several different masks it was always meant to protect me when I was in a place that I couldn’t avoid being around other people.
The “duckbill “ is the most protective. It has a tight seal over the nose and has “HEPA” quality filtering characteristics. IT is a pain to wear. However, offers the best protection if I have to be in a crowded area. The greatest thing about it is, when people see me coming they mistakenly assume I’m contagious and give me a wide area of clearance. LOL. They social distance because they are afraid that I will make them sick. Nothing could be further from the truth. I’m the one being protected.
The reason it was so difficult for the CDC to recommend wearing a mask is that it can be counterproductive.
Although, it will help asymptotic people who are infected from spreading the virus it may actually increase the likelihood of a healthy person becoming infected unless you are very careful in how you treat it.
The average person touches their face 368 times per day without a mask.
If wearing a mask decreases that number that’s great. But in my case, I touched it repeatedly…increasing my chance of infection. Just think you infecting you” Not good!
Your mask doesn’t make you invincible. All that it does is help keep you from infecting others while you are out and about. And help decrease the times you touch your face.
Wash your hands
You must remember to thoroughly wash your hands before applying your mask. Once you have returned home be very careful in taking it off. Put it in the laundry or throw it away and then immediately wash your hands once again!
The other thing that you should be aware of is if you wear glasses or sunglasses. When you walk into a cool place your glasses will fog. I’ve tripped more than once because of foggy glasses, so beware!
I’ve lived with compromised immunity off and on for several years. I can tell you that ‘off’, is a whole lot more fun than the ‘on’!
The best piece of advice that I can offer is to practice “social distancing “ and wash your hands often. You can set your phone to remind you to wash them until it becomes a habit!
We pray that each person who sees this post will have a safe and healthy day. Thank you for following along on our clinical trial journey. And, when this is all over you will have succeeded in living through a pandemic…now that’s something to shout about.
(April 16, 2020)
Day T + 79 and all Praise and Glory go to God!
Team #carthero is abundantly filled with faith and hope for this journey we are on.
Last evening at 7:30 PM I received a call from my lead oncologist at Moffitt Cancer Center in Tampa, Florida.
Last evening at 7:30 PM I received a call from my lead oncologist at Moffitt Cancer Center in Tampa Florida. As you might imagine my heart stopped when he identified himself.
Terror turned to uncontrollable joy when he said, “I have such good news that I thought you would want to hear it immediately. Your CAT scan and PET scan show that your disease has been resolved. The Bone Marrow results show no evidence of any disease”. We don’t use the word cured until you are completely disease-free for 5 years. But in the meantime, we can term your condition as resolved. Your clinical trial results have achieved a complete response!
He reminded me that we still have 6 months to go with the Car-T clinical trial. I’m still in two additional clinical trials for gut health. However, he could not be more pleased to share the news!
This has been a difficult time in Heidi and my life. We have been discouraged and fearful of what could happen. However, we persevered through it all and see nothing but Joy and Hope in our future.
Thank each of you for your prayers and for the strength that you have helped provide. We cherish each and every one of our friends. My plan is to continue to post in the hope that we can offer encouragement to anyone else going through a difficult time.
Amen.
Left to right: Kalliope, PA, Marissa, Clinical Research Team; she collects my poop, (gut clinical research), Pharmacist, ME, Dr. Fred Locke, (Dr. Julio Chavez, not pictured) the men responsible for the Car-T Research, and Interns visiting from Spain.