Friday, June 12, 2015

Luke returned to Houston from KC June 5.  The doctors at Children’s Mercy Hospital in KC monitored him for four weeks after infusion of the CART cells.  They took labs 2-3 times a week.  

At the four week point they took a bone marrow sample and drew spinal fluid.
KC did a flow cytometery on the bone marrow.  The flow cytometry picked up no leukemia cells and the pathologist saw nothing suspicious in the biopsy.   The bone marrow sample was sent to Children’s Hospital of Philadelphia for additional lab testing required for the clinical trial.  The results from CHOP came back today and confirmed there was no leukemia!!.   Luke’s other labs were good.  Noting bad showed up in his blood or spinal fluid.  Kidney function was good.  Liver results were not perfect but nothing the doctors were concerned with.

Luke was thrilled to finally have his PICC line removed and become tube free.  He’s actually has put on weight and admitted he might need to do a few sit-ups.  He is hopeful of returning to school in the fall.   

What’s left is to wait and see.  For the next three months Luke is scheduled to return to KC for labs as part the monitoring requirements of the clinical trial.  The doctors will be watching for B-cells in his blood/bone marrow as that a sign the CART-cells are no longer active and the cancer has returned.   

Knowing that the CART-cells are multiplying and killing the leukemic B-cells is truly great news.  
 The initial results from the clinical trial are encouraging but the study doctors let you know the first patient was treated only 2.5 years ago and no one knows what to expect long term.  Hopefully the “asshat” is dead, long live the CART-cells!    

Thursday, May 14, 2015

Dear Friends and family
Greetings from KC.  Luke has been here a since April 24.  A lot has happened and life continues.  I won’t try to give you a blow by blow but do my best to let you know where Luke is and where things are going   
The first week Luke received four days of chemo to kill off his t-cells so the modified CART-cells would have less competition going after leukemia b-cells.  He was also subject to MRI’s and CTs and a plethora of lab tests with +30 ml of blood being drawn daily.  After finishing the lymphodepleting chemo he had a couple of days off and was infused with the Cart cells May 6th.  The infusion was uneventful and done in clinic.  He received a massive volume of 17 ml of CART-cells.  Infusion took less than 15 minutes and he went home after two hours of observation. 
From the 6th until the morning of the 10th things were uneventful.  Thursday and Friday he went to clinic for labs.  Friday he got two units of blood.  Hemoglobin was low but that was attributed to the chemo he received earlier in the week and not the CART-cells.
Monday morning shit hit the fan.  Luke’s temperature spiked above 102 F.  We took him to clinic and he was admitted.   Over the next few days temperature was all over the place reaching a high of 104 F.  He was given Tylenol for temperature but as that wore off temperature would spike again.  He also had bad headaches and a sore throat accompanied with not so attractive tonsils.  His throat was swabbed multiple times to culture fo.r an infection, but every test came back negative.  In the end Dr. Myers attributed the fur coat on his tonsils as the tonsils having a high concentration of lymph cells where the cancer cells had found a home.  The fur and puss on the tonsils was the cancer cells doing battle with the CART cells.  The headaches may or may not have been the CART-cells attaching the solid tumors that had shown up on his skull.       
By Wednesday Dr. Myers had pretty much decided all the symptoms Luke was showing were related to the CART-cells doing their thing with the result being cytokine release syndrome (CRS).  Apparently a topic during the weekly discussion Dr. Myers had with the brain trust running the study was do we keep patients in the hospital with low grade fevers or send them home.  As Luke’s temperature had spiked to 102.4 Tuesday night and had been below 100 since Dr Myer decided to discharge Luke today (Thursday).  Luke returns to clinic tomorrow for labs but until there is a drastic change he will be treated out patient. 
While in the hospital Luke got his first infusion of IVIG to replace the good b-cells being killed off by the CART-cells.  As long as his CART-cells survive he will need an IVIG infusion monthly from here on out.
Going in it was known that this was a clinical trial and is essentially an experiment.  That was all too evident in the many discussions we had with Dr. Myers as the response to many of our questions was “this is what we think” or “we don’t know”.  They have given so few patients CART-cells there are no standards or definitive trends.  As far as Luke goes only time will tell.  For the next few weeks he’s in clinic 2-3 times week for labs.  Day 28 will be the big day as on day 28 they will do a bone marrow to check for the presence of CART-cells.
I’ve just covered the major crap Luke has gone through the past two weeks.  There’s many more details as far tests, interpretation of results and questions that I won’t bore you with.   I will tell after going through the last two weeks and seeing the courage Luke has shown has been inspiring.  I conclude with Luke we love you and God bless. 

As always Luck Feukemia


Friday, May 1, 2015

T-cells next

Luke had his final round of lymphodepleting chemotherapy.  Purpose was to kill off his white blood so there is less competition for the CART cells.  Monday is and off day.  Tuesday he will get baselined for his t-cell infusion.  He's apparently been a topic of discussion at the weekly call the clinical trial team because he had this leukemic tumors and leukemia showing up in his bone tissue.  Along with doing a basic physical he is going to get a CT and MRI.  

Wednesday is t-cell induction. day.  It's all done by infusion through his port.  After infusion it's wait ans see.  They want to see him daily for the first four days and then two to three times a week for a month.  
After infusion they will be watching for cytokine release syndrome when the CART cells go hyper and put the body in shock with a high temperature.  Dr. Myers has said addressing CRS can be handled but depending on the patient it can get hairy

Luke is doing ok.  Chemo doses were moderate so he did not have nausea issues.  Major issues are just being tired and joint pain.  Eating and sleeping well.  

Big day Wednesday.

Luke Feukemia

Tuesday, April 28, 2015

Day 2 has begun and will be a repeat of day 1, so expect to be here until mid-afternoon. 

Day 1 uneventful.  No nausea, headache or any other complaints.  Ate and drank plenty and finished up around 2. 

When Luke to his uncles's e assembled his lap steel and played a while.  Ate a couple bowls of cereal and fell asleep in front of the TV.  Sometime between 5 and 6 he disappeared to his bedroom and slept until morning.

Spirits are good.  Weather is good and he has his lap steel.  What more can he ask for?

Chemo for the first two days is cytarabine.  He’s had cytarabine before but this time around it’s a much lower dose.  He needs to get IV fluids two hours before and two hours after getting it's a long . 

Dr. August (oncologist) and Dr. Myers (transplant) stopped by.  Apparently Luke is of greast interest with the CART clinical trial team because of him having leukemia cells in the bone as well as the bone marrow.    

Good news from the clinical coordinator.  Novartis has seen a lot of variability in t-cell production but she said Dr. Myers had heard from Novartis they are getting very good production.  Looks like infusion is still a go for the 6th.

Saturday, April 18, 2015

The t-cells are in production

Hey all,

Wanted to bring everyone up to speed on Luke..  Novartis is going to being production of Luke’s T-cells on April 15th.  It’s a three week process so Luke is scheduled to be back in Kansas City to have lympho-depleting chemotherapy from April 27th through May 1st.  The therapy includes 3 days of fludarabine and two days of cyclophosphamide which he will get as an outpatient.  Expectation is for him to get his infusion of T-cells May 6th.  He will need to then stay in KC for 4 weeks after infusion for observation and treatment as necessary. 

This time between his enrollment and infusion has been a balancing act – they want to give enough chemotherapy to prevent the leukemia from progressing but minimize the potential of organ toxicity, like decreases his liver or kidney function, and depleting his blood counts putting him at risk for developing an infection prior to treatment.  

After infusion one the concerns is cytokine release syndrome (CRS).   When T-cells encounter a foe, they unleash cytokines, proteins that aid in and regulate the immune response. When T-cells get infused and multiply rapidly oncologists have seen a cytokine “storm,” a dangerous release of the proteins. They also will watch for tumor lysis syndrome, which occurs when a massive amount of dying tumor cells release metabolites that build up in the kidneys.

According to the doctors there seems to be an association with disease burden and CRS (more ALL, more CRS), but nothing definitive.  They did do a pre-T-cell infusion marrow biopsy as part of the phase I protocol but they didn’t put that in the Phase 2 trial as they don’t think there is a definitive correlation between an amount of disease  counted on a slide or in a machine and the degree of fever, renal problems, liver or lung problems, etc.  If leukemia blast cells are high prior to T-cell infusion they think you might be able to generalize that there is a higher probability of CRS but at this point they have no way on knowing what level of CRS to expect. 

The doctors do feel the management of CRS is usually pretty good.  The initial patient at Children’s Mercy experienced no fever, no CRS and is over 4 months out with remission.   

Luke’s will be a CD19 CAR T-cell recipient.  Both the leukemia cells and B-cells (another form of white cells in the body needs to fight infection) carry the CD19 protein that the CAR T-cells attach to.  The CAR T-cells don’t discriminate between the leukemia and good B-cells so both are killed off.  If the CAR T-cells do their job and stay around as long as they likely should, Luke will probably need IVIG for the rest of his life to compensate for his lack of B-cells. If Luke’s B-cells begin to show signs of recovery the concern is that that relapse may not be far behind. 

If you watched the PBS special on cancer leukemia and T-cells were front and center.  It was hard to watch the first of the three segments as it was so much of what Luke has been through revisited. 60 Minutes recently did a segment on the success they have had using t-cells on solid tumors and HBO had a special that highlighted the CART trial.     

if you are interested there is a lot of info on the internet on T-cell therapy.  Below are links to a couple of the articles I found good.  One of the articles is heavily technical the other is more of a magazine general knowledge article that provides a good overview of the theory, process and issues. 

That’s it for now.  Luke is feeling pretty good and getting his annual fill of crawfish.  He is scheduled for a few more rounds of chemo but nothing like he has received in the past.

As always your thoughts and prayers are appreciated.


Monday, March 23, 2015

Luke had his t-cells drawn Tuesday of last week.  The t-cells are a type of white blood cell and are removed using the same type of pheresis machine used to donate platelets.  The procedure took around 8 hours.  The picture is the t-cell product.  The pinkish stuff in the middle are his t-cells, the lighter colored stuff on top are platelets and the red on the bottom are red blood cells. 

Following the t-cells procedure Luke was started back on chemo.  They tried to give him Erwinia but he had an allergic reaction and they had to shut it down after a few minutes and shoot him up with Benadryl.  Erwinia I’d describe as an indirect chemo.  It breaks down a specific protein leukemia cells are believed to need to grow and multiply.  Without the protein the leukemia cells growth is inhibited.  After recovering from the reaction to the Erwinia, Luke left the hospital around 9 PM. 
Luke was back in clinic Wednesday morning.  Luke met with Dr. August, the chemo doctor on the trial team at CMH, and it was decided to let him get back to Houston and make a decision in Houston on trying Erwinia again.  Luke rested the rest of Wednesday and we headed back to Houston on Thursday. 
Friday he was at the MDA clinic and it was decided to try Erwinia again.  The results were the same as KC.  He had an allergic reaction.  The Erwinia was stopped and he was shot up with Benadryl.  Luke was getting Erwinia because he was also allergic to another Erwinia type drug.  He had gotten Erwinia dozens of time before without a problem, but it is not uncommon for someone to develop hypersensitivity after multiple doses.  He’s back in MDA clinic Monday for Vincristine and its wait and see what they want to do since he can’t tolerate Erwinia.  
The overall plan from here is for Luke to get maintenance chemo until his t-cells are ready to be reintroduced into his system.  Novartis is the t-cell technology provider and a date needs to be scheduled with them to process the t-cells.  Dr. Myers next time slot for Novartis was mid-April.  Processing takes three weeks so once the cells go to Novartis Luke will likely be schedule a return to KC and receive the t-cells the first week of May.  It’s expected he will be in KC for a month for t-cell reintroduction.
Just an overview of the clinical trial.  They will extract Luke’s t-cells and genetically modify them to introduce a receptor on the surface of the t-cell,  That receptor will attach to a C19 protein that is on the surface of the leukemia cells.  Attaching to the leukemia cell it is hoped that the t-cell kills the leukemia cell. 

On the bright side, this past Saturday, the sisters had a surprise for Luke.  All of his sisters were in town and before going to KC we had gotten tickets to see Brad Paisley at the rodeo.  Paisley is a Belmont graduate where Luke is in school.  After getting tickets Luke’s sister’s Beth and Kendall took it upon themselves arrange for Luke to meet Paisley before the concert.  They do good work!  There were about fifty people in the meet and greet line and the six of us were directed to the end of the line.  After everyone else left the greeting room Luke was invited in to meet Paisley.  Luke and Paisley talked for 5-10 minutes covering music and Belmont.  After Paisley’s entourage took a few pictures Paisley left to perform and we were told to follow through the back passages of NRG stadium.  Paisley went out to the stage in the middle of stadium in a pickup truck and we were led behind the pick up to the stage where we watched the concert 20 feet from the stage in what they called guitar world – the area where they kept all the guitars for the performance.  It was a great Saturday evening which was closed out with crawfish.  I don’t know who Beth and Kendall got hold of to pull it off but WOW did they pull it off.  

Friday, March 13, 2015

Luke Update

You hear life is a roller coaster; well there is no other way to describe the week Luke has had.  This is life as we know it on Friday the 13th.

Last Sunday we drove to KC Sunday arriving at 8:30.  Luke was not looking very well and had a temperature of 103.4F.  The leukemia rule is over 101F go to the ER.    

We reached out to our contact at Children’s Mercy Hospital (CMH) that were running the clinical trial Luke came up to see if he would be eligible.  We were told to take Luke to the KU Med Center as the CMH ER would not know what to do with a 25 year old child.  Luke was at KU Med at 9:30.  He was admitted and had a bed 5 am Monday.    

He was tested and cultured to death.  His blood counts were low but not crazy low.  Labs found two viruses RSV and para influenza and concluded symptoms were virus and not leukemia related and began antibiotics.

The folks at KU were made aware of why Luke was in KC and when his temperature came to range the discharged him and we went over the CMH. 

We met with the CMH staff responsible for the study beginning Tuesday.  They had him scheduled for a battery of tests required for the trial protocol. .  Unfortunately because of the protocol requirements CMH could not use the KU testing so they had to do their own CT’s MRI and LP

CMH also did a bone marrow.  Good news was no blast cells showed up in the bone morrow the bad news was the trial required a candidate to have an active disease and show at least 5% blast cells so based on the bone marrow test run Luke would not qualify for the trial.  .  . 

That was not entirely unexpected as previously Luke had been very responsive to induction chemo.  It was surprising in that he only had 2 weeks of what is normally a 4 week induction protocol. 

This week Luke had multiple LPs, CTs, MRI.  The leukemic tumors thought to be causing is liver and headaches have shrunk.  Yesterday his hemoglobin was low and he got two units of blood.    

If Luke’s bone marrow shows active leukemia he will qualify for the protocol.  The consensus of the doctors is it is not a question of if the leukemia comes back but when.  In anticipation of the leukemia coming back Luke is still going to have his t-cells drawn.  They were going to try to do that Friday but he has been plagued with a headache since before he got here and has not been able to keep anything down since last night so t-cell extraction is rescheduled for Tuesday next week. 

Well things changed.  Luke received and email this morning telling him that when they decalcified and tested his bone marrow they found 50% blast cells.    Blast cells are usually identified using a flow-psy test and slide smears on the spinal fluid and neither showed leukemia cells.  The final test they did was to decalcify the sample and when they did that they saw what he called globules of blasts as opposed to single cells.  Doctor Myers only comment was Luke knew something was wrong and he was rights.  Seeing leukemia agglomerate like they saw in Luke’s bone marrow was rare.    

Luke will have is t-cells drawn nest Tuesday and head back to Houston.  He will likely continue to get chemo until his t-cells are modified and ready to be reintroduced into his system.    That should be 3-4 weeks after they collect his t-cells. 
That is if for now.  T-cells taken next week and modified cells given bask in early April.