This is Jenny’s journey through the CAR-T Carvykti treatment.

A little background:

Jenny was diagnosed with Multiple Myeloma in 2008… Since then she has been on many different lines of treatment. The first major one was a Stem Cell Transplant at Florida Hospital in Orlando in 2009.

She was symptom free until the end of 2014 when the Myeloma started appearing again. Since 2015, she has been on the Velcade and Cytoxin and Dex treatment throughout 2015. Then in September of 2015, she had her second Stem Cell Transplant, at the same Florida Hospital.

This time, the Stem Cell Transplant didn’t give her the down time than it did before. By June of 2016, she was on a full treatment again of Darzalex, Revlimid mostly. That gave her a real good quality of life, and was on it through June of 2019!

Next came the new drug combination of Krypolis and Pomalyst! This was another winner and gave Jenny a great quality of life! She has been on that through September of 2022!

She was briefly on Velcade and Selinexor from December to January  and it brought the numbers down really fast! It definitely was a bit harsher that the previous years, but it seems to work well.

Now it’s time for the newest innovation! CAR T cell treatment:

What is CAR-T Cell Therapy? watch this short video:

 

I also found this that you have to watch!!!!

Carvykti Journal

Jenny’s doctor in Orlando, Dr. Landau at Orlando Health, could tell the the regimen that Jenny has been on for many years was starting to not be as effective as needed. He requested that we set up a consultation in Tampa at Moffitt. Dr. Hansen MD on December 8th, to talk about CAR T-cell treatment.

After a long day of meetings, we were to be put on the list for one of the 2 different types of CAR T-cell treatments for Myeloma. The 1st and oldest one that is a couple of years old is Idecabtagene vicleucel (ide-cel, Abecma), The second and newest is ciltacabtagene autoleucel (cilta-cel, Carvykti).

Dr. Hansen explained that they get 8-10 slots per month for the Abecma and only 2 slots per month for the Carvykti. We waited a couple of weeks and right before Christmas they called and told us that she is on one of the slots for Carvykti in February of 2023!

Jenny was requested to stop her treatment that she was getting in Orlando 2 weeks before her 1st visit at Moffitt on the 26th of January. So she did and we arrived at Moffitt on January 26th for a battery of tests to see if she is strong enough for the treatment and to get some base lines. Of course, she passed all of the tests!

We returned on February 5th, 2023 a Sunday to make sure that her blood had all of the correct numbers for the apheresis on the following day. Her hemoglobin was low and so they determined to give her a unit of blood. She almost made it with only one unit but her numbers were still a bit low from the chemo, so she was given another unit.

It was a long day, but now we are ready to go!

2/6/23, Monday:  We woke early to be at Moffitt at 7:00 am. One of the observations that they had made at the previous visit, was that while her right arm vein was presenting fine, the left arm did not present a good enough vein to use for apheresis, so they needed to put in a port. It was an easy enough procedure but it made the day about an hour longer. By 9:00, she was ready to go and the apheresis only lasted from 9:30 to 2:30, and we were on our way back to the room by 4:30!

This is the apheresis machine:

2/17/2023   We received word that the cells are estimated to be back March 27, and they will like us to be on property on the 30th to start the process.

3/12/2023 so the last few weeks have been uneventful. Trying to stay healthy and staying away from large crowds as we get closer and closer to the day that she gets her cells back.

Today we travel to Moffitt in Tampa again to spend the night for an early appointment on the 13th.

3/13/2023  a side note before I tell you about today’s appointments. We looked for someplace to stay long-term and we decided that the Embassy Suites about a half a mile from Moffitt is the place for us. We used to stay at Embassy Suites when we had four kids traveling with us and it’s just so nice compared to other places that just don’t live up to the standard that we have. When we came here in February we stayed two nights at the Residence Inn about 4 miles away. Just wasn’t for us.

Today’s appointments have been slow so far, started with labs, and then met with the infectious disease doctor. After that we try to get in a little bit early on some other appointments to no avail so back to Embassy Suites we go.

We soon got a phone call that the next appointment is available early so we met with the Neurologist to get a baseline on Jenny’s cognitive condition. She did very well and the Dr. was very reassuring.

Since Jenny is not a Moffitt regular patient they have to do a full work up, our last appointment for today was a head MRI.

3/14/2023

Today was an early start with a Bone Marrow Biopsy, and a PET scan.

This took all morning, and now we are off to lunch and then back home to Orlando, and stay healthy!

Moffitt is a well oiled machine, we haven’t seen many issues and they are living up to the reputation that proceeds them.

03/30/2023

We made our way to Moffitt today! Only needed a Covid test today. We then made our way to our home for the next 30 or so days. Got settled in at the Embassy Suites @ USF. Really made the correct choice as they are really a superior hotel.

Decided to find a nice seafood restaurant for dinner to enjoy before we start tomorrow. It was delicious!

Early day tomorrow, need to be there at 7:15 AM.

03/31/2023

Arrived at 7:15 AM to start getting prepped for the Tri-Fusion catheter. While answering the routine questions that are always asked Jenny mentioned that she had a cough, probably from allergies (tis the season).

Well, because of the treatment, and the weakened immune system that is to come, procedure is to swab for a virus check.

It ends up, she has a mild case of whooping cough!!

After the Doctors met, we were sent back home for a week. Disappointed, but totally understandable and grateful! (Grateful that the doctors are on top of the situation).

 

So Jenny took her medicine this week, and stayed inside with not visitors! Kind of rough but she didn’t want to be turned away again….

Day – & Friday April 7, 2023

We arrived in Tampa, but because of a slight mix up, we are now staying at the Residence Inn. Suffice it to say, not my 1st choice but it has a few plusses over the Embassy Suites. I will elaborate later in the blog.

Day -6: Saturday

Jenny passed her screening and we start chemo tomorrow. Celebratory dinner at Hulu Bay Club in Tampa tonight and then sleep!

Day -5: Easter Sunday

Starting the chemo this morning at 9:00 AM. It is a low dose of Cytoxan, along with Fludarabine. A few days before the CAR T-cell infusion, the patient might be given chemotherapy to help lower the number of other immune cells. This gives the CAR T cells a better chance to get activated to fight the cancer. This chemotherapy is usually not very strong because CAR T cells work best when there are still some cancer cells to attack. Once the CAR T cells start binding with cancer cells, they start to increase in number and can help destroy even more cancer cells.

Day -4 Monday

Another uneventful day. Spent 4.5 hours getting the second dose of mild chemo. No issues at all!

Day -3 Tuesday

Last day of mild chemo. The nurses and staff at Moffitt 3 Central are so good!

Day -2 Wednesday

Today Jenny had her Tri-Fusion Catheter placed. Again, easy peasy, as she described it. It is a minor procedure, in and out within 2 hours. Time to go home and rest!

Note: this day was scheduled as the 1st day here when we came a week ago. But they don’t do this procedure on weekends so, it was last on the schedule this time!

Day -1 Thursday

Rest day, just hung out, and took a 1 mile walk in the afternoon.

Day 0 Friday

Arrived at Moffitt at 10:00 and after being seen by everyone on the floor, ha, not that bad, but a DR. a PA, a RN and a Tech and a CAR-T Special Delivery Courier all crowded in the room to initiate the process of the transfer back!

It was amazing to watch everyone in action! Then Linda (RN), was left literally alone, holding the bag and the process began!

Her T-Cells are in the itty bitty bag in the middle. Only 75 ml, but millions of them! After going empty, Linda flushed the bag 2 times with Saline to make sure that everyone of the life saving boogers were in their new home!

Jenny did feel a strange effect when they went in. She felt pressure on her chest and a warm flash. She described it like over exertion. Linda slowed the rate while Jenny caught her breath. The whole process took 30 minutes.

We then sat around till 4:30 and got monitored every hour.

They have cognitive testing that she has to do every day to make sure CRS doesn’t happen.

She has to write a sentence in her booklet (provided) to check certain aspects of her cognitive skills.

She also has to identify 10 random things, like, where are you, what is month and year, then identify items in the room. Everyday.

Day +1 Saturday

Arrived at 7:15, they changed her dressing on the catheter, pulled blood for the labs, ran through her cognitive testing. By 8:00 the PA came in and and asked some questions and said that her labs came back faster than she had ever seen in the 10 years. She said they were great and that we could head out!

Hung out for a while at the hotel then went to a secluded park and walked around! Ever mindful of staying clear of everyone and never being near people!

Day +2 Sunday

Boring morning so far. (we like boring)

Arrived at 7:15, they pulled blood for the labs, ran through her cognitive testing, now we wait for labs to come back! Everything is is great. The PA says fever could creep in around 5-7 days after Day 0. I guess we will wait! An interesting thing we have learned, is that the blood actually gives signs as to when the body will start a fever. It is called CRP, C- Reactive Protein.

Day +3 Monday

Nothing to report. She is just showing off now. Lol

Day +4 Tuesday

Another day another early appointment. Jenny has not changed since Day 0, and is still doing well. Waiting for labs, and a Doctors visit. Everything is good to go for today.

Day + 5 Wednesday

Another day, another good report!

We decided to go over to the USF Botanical Gardens to walk around for a bit. Jenny started to notice that after an hour of strolling through the flowers, that fatigue was starting to hit her. Back to the hotel we go.

Day + 6 Thursday

We had an early appointment today at 3 Central. It was fine with me because the Starship Test Flight was re-scheduled for this morning and I wanted to make sure we were someplace and not en route.

Another great report. They take her blood pressure lying down then 2 times standing up. Her heart rate elevated today when standing, they told her to make sure she is drinking plenty of water. Might have to give her fluids at tomorrows visit though.

Day +7 Friday

Another early appointment. Definitely feeling the side effects starting. Fatigue & Achiness. The Doctor is saying that her CRP started going up so, expect an onset of a fever. This afternoon, the fever came and finally at 5:00 pm it was at 100.6 degrees which means we have to call and make our way back to be admitted.

Day +8 Saturday

The night was pretty uneventful, fever came down, all of the blood work was negative for infection, and so now we wait till Sunday or Monday for the cultures to come back. Fatigue is such an issue, but she did eat bagel and managed to get a shower this AM. Tonight by 9:00 pm, the fever jumped to 102.7 degrees. They managed the fever during the night and it is staying around 100 throughout the night.

Day +9 Sunday

I woke this morning with Jenny texting me that the fever was stable, and she is still fatigued. I took her a bagel and cream cheese. This morning they gave her Tylenol and some fluids. They informed us that they just want to watch the fever and watch for other symptoms. They do not want to give her the drug that shuts the fever off unless they can’t control it. She ordered a Cottage Cheese and Fruit Plate for lunch. By 12:00 she was feeling and looking chipper. Just gotta let the T-Cells do their job and go after the cancer. We watched our choir and sermon today from her room, and then we were able to FaceTime Audio our Small Group for the lesson! She really enjoys not missing on Sundays and grateful to friends that help her accomplish that. FYI, she is still a 10 out of 10 on all of the cognitive questions!

Day +10 Monday

Jenny was able to keep the fever at bay, appetite is coming back, strength is coming back, and got a shower! Good news later in the afternoon was that she can leave the hospital tomorrow afternoon.

Day +11 Tuesday

Just waiting to go home, her hemoglobin was low enough that it warranted a blood transfusion, but everything is on track to go to the “home away from home” this afternoon.

Day +12 Wednesday

Jenny is glad to be “on her own” and not in Moffitt (even though they were great). Today we just hung out at the room, I worked remotely, and Jenny caught up on her cross-stitching and texts! Remote choir practice tonight! We have a check up at Moffitt tomorrow at noon!

Day +13 Thursday

We ad our 1st appointment since returning from the hospital. All is going like expected. The doctors are very pleased with the progress She is making. No more appointments until Saturday noon. We took our .6 of a mile walk around the block tonight.

Day +14  Friday

A day off. Jenny made an appointment to get her hair done at 1:00 so we hung out (I worked), and then dropped her off at the Hair Dresser while I went to Publix, a badly needed car wash, and gas. By that time, she was ready. Came home, and she napped (I worked) then we took our .6 mile walk, tried to see the SpaceX launch (too cloudy), then had dinner.  Today is +21 from home, 2 weeks to go?

Day +15 Saturday through Day +20

So, not that I have been lazy, there has just not been anything to write about. No issues, no fevers no CRS. We had an appointment on Monday +17 and she passed with flying colors!

Just a couple of things to mention. If you have to stay in Tampa for this treatment at Moffitt, the 2 places that I would recommend is the Embassy Suites, about .5 mile from Moffitt, and also the Residence Inn off Fletcher Ave. We stayed the long term at Residence Inn.

A couple of hints. Ask for a bag of ice from the front desk to put in your freezer. It keeps the noise of the cheap ice maker at bay. Also tastes better. Lettuce Lake County park, admission $2.00, is great for walking. It has a nice boardwalk, 1 mile jogging course, plenty of shelters to have a picnic. We also walk around the hotel, which is a .6 mile, the path goes around a small pond behind the Racetrac, then on Fletcher to the Starbucks then back to the hotel.

Another plus, if you don’t want the free breakfast anymore is the Starbucks in the parking lot. Great coffee and simple breakfasts. We have an appointment at 2:00 pm tomorrow, so I will update you then.

Day +23  Sunday

After another great report on Friday (Day +21). All of her numbers are up and trending upward. And so we wait. Good news though. We did ask what next week looks like and we were told that after day +21, she can have the tri-port catheter removed. We hope to to that tomorrow and then the only appointment remaining will be with Dr. Hansen, on Thursday (Day +27). Our understanding is that we are released after her meeting. We are hoping we should know sometime tomorrow!

Day +26 Wednesday

So, the tri-port catheter will be removed tomorrow at 2:00, then labs, then our meeting with Dr. Hansen at 4:00. If she releases us we will head home.