Stem Cell Transplant for AML with FLT-3

A little background. Always healthy, Mike started feeling fatigue and chest pain this spring after exercising. We put it off to anxiety over selling the Myrtle Beach house and buying the condo in Florida and the stress of the move. He had just had a full physical with blood workup in January and everything was perfect. Better than perfect....you don't normally see results that stellar in a 63 year old man.  He kept feeling worse and worse so went to the doctors in Florida where they ordered blood tests which came back with a diagnosis of pneumonia. Okay we can deal with that. A couple of days with antibiotics and he was feeling better. Then we got the call that something didn't look right with his test results and he should contact an oncologist. The whammies didn't stop there. We found out he had leukemia - bad; it was AML - worse; he had the FLT3/ITD mutation - worst prognosis possible for an over 60 year old man.2

Mike had the standard 7+3 induction then 4 rounds of consolidation chemotherapy treatment along with Rydapt for the FLT3 over the next 6 months. His sister Evelyn is a perfect 12/12 match and has graciously offered to serve as his allogenic donor.

This blog will document the transplant journey for people, like us, who want to know what it's like and what to expect. Of course everyone's experiences will be unique but we found it helpful to know the kinds of things we could expect and hope you will too.

T minus 8 and counting
Last week we met with some of the transplant team and today we met with more. Tomorrow Mike gets the central venous catheter put in and they will remove the other port he has had since June which was used for his induction and consolidation chemo treatments.

So far we have had appointments with a dietician, a social worker, a psychologist and the pharmacy rep. We also had an educational consult with the doctor, the nurse coordinator, and two other members of the team.  The last appointment was an hour long data review. Our heads are spinning.


T minus 6 and counting
This afternoon we met with the Integrative Medicine Department. Dr. Mehta who is the Director is well versed in alternatives, supplements, homeopathy, etc. and wad a great source of information. His suggestions were on point and Mike agreed with uis recommendations. It was especially helpful that Dr. Mehta explained the "whys and why nots" as opposed to just having a "because I'm the doctor and i say so" mentality. He also provided Mike with some meditational exercises he could do.

Early evening we checked into the hospital and Mike began his first Bu/Flu treatment at 9:15pm. Because of the side effects of these 2 chemo drugs, they automatically also administer anti nausea,  anti convulsant and Ativan so Mike should be able to relax enough to get some sleep even in his anxious mental state. They have already forewarned us that they will be coming in at least three times throughout the next 8 hours for labs. They are very proactive about making sure that all is going smoothly.

 T minus 5 and counting
It has been a busy morning here with all manner of  hospital staff coming and going.  The day nurses, of course, came in when they arrived on duty.  We also had a nice visit with a volunteer from the department of spiritual care who came in to pray with us.  Michelle, who is a clinical pharmacist, is interested in holistic medicine and homeopathy so Mike had an enjoyable visit with her

Mike is feeling pretty good (all things considered) today.  He got some restful sleep last night and now that he has made peace with his decision to have the stem cell transplant his mind isn't racing in 100 different directions.

 T minus 4 and counting
Mike is still feeling okay (the Ativan might have something to do with that!).  The psychology team member came in to talk to him about deep breathing exercises and imagery; he will need that kind of stuff more so in a few days.  For right now, his mental state is pretty good.

Meeting with Dr. Ruiz today, we took some extra time to discuss post transplant maintenance therapy.  Dr. Fernandez had advised that starting at day 60, Mike would be on Rydapt (midostaurin) daily for at least a year.  Rydapt is a targeted immunotherapy drug which is specific to the FLT-3 mutation that Mike had taken as part of the induction and consolidation phases of chemotherapy.  We had wondered why he would have to take this post-transplant since wasn't the goal of the transplant to eradicate the leukemia?  Dr. Ruiz explained that studies have shown an increase in the disease free survival rate using maintenance therapy and that although the study is fairly new he fully expected that in the years to come we would see longer and longer periods of disease free survival.  We are fortunate that Mike's leukemia did not rear its head years ago when complex typing and targeted treatment wasn't available.

We have added some benadryl to his night time drug "cocktail" to help him sleep; the lower dose of ativan isn't doing the trick.

T minus 3 and counting 
Mike slept pretty well last night and his counts are still good.  Of course, they generally don't start dropping until a week from now so we will have to wait and see what the effects of this chemo regimen will bring.  Tonight is his final round of conditioning treatment and days minus 2 and minus 1 are "rest" until the stem cells are transplanted on Day Zero.

Naturally, he can't have any flowers or fruit or anything like that -- but cards would be welcome to brighten up the room!  Address:  Moffit Cancer Institute at Memorial Hospital West, Room 3732, 703 N. Flamingo Road, Pembroke Pines, FL  33028 

They have started the Tacrolimus dosing which means that Mike will be connected to an IV pole 24/7 for the foreseeable future. At least he has some experience dealing with that from the past 6 months of chemo treatments but he was hoping that that wouldn't be the case.  The Tacrolimus is one of the two immunosuppresants that he is going to be taking; this one for up to a year, the other for up to 2 years or longer.  They are starting the immunosuppresants days before the transplant to get his body conditioned to reduce the chance that it will reject the "foreign matter" that it will perceive is entering when he gets his sister's stem cells.  There are side effects associated -- we will have to wait and see. 


T minus 2 and counting
Nothing new to report today.  Last night was the final (hopefully for a long, long time - maybe forever?!?!) chemotherapy treatment so that is exciting.  Mike is on his second bag of Tacrolimus and so far hasn't had any side effects from that.  Biggest issue we are having to date is boredom... he feels okay but can't DO anything.  I try to keep him preoccupied with my incessant chatter and of course he has his Imus programs downloaded and thank God for YouTube videos but there is only so much of that you can take.  In any event, we are thankful for his still feeling well enough to be bored!  Here he sends a hello to you all:

T minus 1 and counting
Today is the first day Mike is really starting to feel the effects of the treatments.  His sister's cells are being harvested today (right down the hall, in fact!) but Mike hasn't really had the energy to visit with her for more than a few minutes.  Perhaps he will try again a little later -- her procedure will take about 8 hours.  They are going to try to get twice as many cells as they need and then will have half of them stored in the event that more cells are needed in the next couple of months.  They also asked her if she would be willing to return down the road to donate more if necessary -- she said yes, but let's hope that's not the case.  I only mention it for anyone who is considering becoming a donor, so you know what your obligation(s) might be.

Mike is still receiving the Ativan which helps him rest but his stomach is bothering him today as we expected:  almost everything that he has been taking affects the GI tract.  The Tacrolimus (immunosuppresant) dosage is being reduced by 50% because Mike's body has reached the level much sooner than they anticipated.  Everyone metabolizes differently which is why they check these levels so often. Since he will have to be on the Tacrolimus (and the second immunosuppresant which starts later today) it is crucial to have the dosage exact for the way his body reacts to it.

Today we met with Dr. Deutsch for the first time.  He is the third doctor on the transplant team with Drs. Fernandez and Ruiz.  Together, they make a very strong team.

Day ZERO!

I like to think of today as Mike's "new" birthday.  He is having a sodium chloride solution drip for two hours and then they will begin the stem cell transfusion where his sister's healthy cells are introduced into his body.

He is feeling a little better today; they have amped up the anti-nausea medication which helps quite a bit.  At least he got to eat a little breakfast without any untoward side effects.

There is a lot of nervous anticipation and many other emotions surfacing so they have given him Benadryl and Ativan to help him relax.  The stem cell infusion itself is almost anti-climactic in that they just hang the bag and let it do its thing, but Mike worries about everything under normal circumstances so his falling asleep right now will be a good thing.

Thanks to God for getting him to this point and the thoughts and prayers that you all are sending are so very much appreciated.

Infusion fully completed around 6pm after a few minor delays. Now that it is done Mike is in a little better state mentally than he was this morning.

Two pictures:
 The top one is of the birthday cake the wonderful transplant team brought to Mike to celebrate Day 0!  The bottom is a shot of Ev's beautiful healthy cells being transfused.

Day +2

It's the second day of what is called the "Recovery Period".  So far Mike has had no terrible side effects and is feeling well enough to be up and as active as he can be tethered to an IV.  It's so important to keep his core strength intact so he walks when he can and does isometric exercises with the physical therapist daily.  It's also good for him mentally to keep the endorphins flowing.

Dr. Deutsch is still on hospital rotation, but his main doctor, Dr. Fernandez, was back from vacation yesterday and stopped in to visit.  He spent a lot of time with Mike going over everything -- current status and what's to come.  He is happy with the progress and Mike really enjoyed the visit.

The volunteer chaplain is here to pray with us as he does daily, so I will sign off for now.  Please continue to keep Mike in your prayers -- they must be working because he is doing better than we had hoped.

Day +3 and +4

These past couple of days feel like the song "I'm Henery the Eighth I Am" -- second verse, same as the first!  Mike is still feeling okay, his appetite and energy levels all good.  In fact, in a way, we are kind of looking forward to the day when his counts drop out because then we know the uphill climb to full recovery can begin.  Right now we're kind of in a holding pattern.

Day +6

Nothing new to report; Mike is still feeling pretty good, all things considered. And after a week of losing weight daily, he actually gained back a pound since yesterday.  The dietary staff is allowing him to order food from the hospital cafeteria (which is fairly decent) if he doesn't like the food choices that are offered from the regular patient menu.  Today seems to be Asian inspired with choices like Vegetable Lo Mein, Spring Rolls, Gingered Tilapia, etc.

It's been a busy day here with visits from the social worker (making sure he has sufficient post-transplant home care), the doctor's daily visit with his entourage, nurses constantly checking vitals, the cleaning staff, and the physical therapist, Jill.  Jill spends a lot of time each day exercising Mike to keep him toned using bands, the "chair cycle", yoga ball, etc.  He is also still walking as much as possible and gets out of the room 2-3 times a day (always with a mask!)

Surest sign that Mike is still feeling like himself:  he actually was getting a bit of an attitude at all the "interruptions" today -- he had some reading he wanted to do!  As if he won't have plenty of time to read LOL!

Day +7

One week since transplant and we had a very good visit with the doctor today.  Mike's counts haven't totally bottomed out but are, in fact, slightly climbing which Dr. Fernandez says is a sign that the cells are starting to engraft!!!! Dr. F says there is a slim chance that Mike won't totally bottom out but that that doesn't mean things aren't working.   All in all, things are looking up.

Day +8

Dr. Fernandez sees that some mild mucositis may be starting but that is to be expected.  We are hoping that Mike's continuous coconut oil pulling will help it to stay mild.  So far no pain, just "tingling".
We heard about an outdoor atrium from one of the nurses here on the floor and we finally got permission today to go outside.  We only stayed for a few minutes but it was wonderful for Mike to get some fresh air.

Nothing else new to report... we are still waiting for the full side effects of the chemo to kick in and Dr. Fernandez has assured us they will (definitely losing the hair again!) but we remain hopeful.

Day +10

Well Mike's counts have really started to drop.  White blood cells are at 800 (lowest normal is 3500), Absolute Neutrophil Count is 400 (lowest normal is 1500) and Platelets are at 210 (lowest normal is 1500) so he will probably end up getting a transfusion but we had expected that.  His mucositis is so far only Grade 1 so he has been able to eat some things although it is becoming more difficult/painful to talk.  Fortunately it hasn't progressed down his throat and seems to be localized only in his mouth so we are still hopeful that it won't get too much worse.  Other than that, just some mild stomach discomfort and a headache.

Dr. Fernandez thinks by the end of the weekend we should be at the worst point and that Mike should start to go back on the upswing next week.  From his lips to God's ears I say!

Day +12
These last couple of days have been very unpleasant for poor Mike. The mucositis in his mouth is severely painful and while we are grateful that it didn't spread down his throat as it has for others,  it still makes it nearly impossible to eat or talk.  For now, if you want to communicate with him please text or email....at least for a couple days.

They tried administering morphine but it just made him jumpy and did not really relieve the pain so they are trying a pain patch which should be fully effective by tonight.

On the plus side, his counts have started to rebound so that is a great sign and Dr. Fernandez thinks two more days and the worst of these symptoms will start to subside.

Sara arrives tomorrow to spend a couple days with us. I know she is anxious to see her dad and he will be over the moon to see her, too. Hopefully she can get a little sunshine in while she's here as I hear the weather up north has been pretty yucky

Day +13
Mouth sores have lessened a bit but now there are some going down the throat.  Eating is difficult, as is drinking, but Mike is able to talk a little.  They are now giving him Oxycontin on top of the Fentanyl to combat the pain which will hopefully enable him to get some food down.  He tries, but the pain is just too great.  For now, please still just email or text rather than call to keep the talking down to a minimum.

The hair is mostly gone, so they sent a hairdresser up to shave the rest of it off but she showed up without the right clippers so here Mike is balancing on the yoga ball, patiently waiting for her return.

Day +15

Still having an issue with the mucositis but they have now given him straight lidocaine which he can apply to the sores directly with a Q-tip which seems to work better at numbing the pain.

Best news of the day came from Dr. Fernandez who says he is on target to get out of the hospital on FRIDAY!!!  Barring any complications, that is, but since his counts are climbing so quickly we expect that it will come to be :-)

Dr. F has assured us that the grafting process has totally taken place and with his WBC rising so fast his body should be able to fight the mucositis so all in all things are in pretty good shape and we have a lot to be thankful for.

Day +18

Well, the best laid plans and all that....

Friday (yesterday) came and went but Mike was in no shape to leave the hospital.  He is in so much pain that he is completely out of it so we decided to stay in the hospital one more night.  Today he will come home!  I have everything all packed up and ready to go; his discharge medications have also been packed up from yesterday.  We are now just waiting for nurse Olga to change the dressing on his port and then I guess we can take off (??)  I'd feel better seeing the doctor one more time and finding out when we have to come back to his office next.

Normally the process calls for staying nearby for the two weeks post-release from hospital since you are seeing the doctor daily for check-up/blood draw.  But since Mike had been doing so well, the doctor thought it would be okay for us to return home which is like an hour away and Dr. F suggested we would only have to come in every 3 days or so.

It's amazing (depressing) how debilitating pain can be -- physically and mentally.  On Wednesday, Mike was ready to hit the road running; today, three days later, he doesn't want to get out of bed and could care less if he was home or in hospital.  This, too, shall pass

Day +19

Mike is home!  He is still having trouble with his mouth and throat but not so bad that it can't be handled without pain medication.  He has some difficulty speaking but within the next couple of days that, too, should abate.  His appetite is not good, and with the throat sores nothing is appealing or easy to get down, but I will stay on him to make sure he is getting enough nutrition.  Now we are going to take a walk to start building up his muscle tone.  Have a great day, everyone, and thanks for all of your support throughout this!.

Day +21

Yesterday we had a follow-up visit with the Doctor and he pretty much told us what we already know:  Mike's counts are still good but the mucositis isn't going away for at least another week.  He prescribed oxycontin to take the edge off the pain but it is still difficult for Mike to talk so if you call him and he doesn't answer, that is probably why.  He still gets fatigued easily which is to be expected, but time will fix that as well.  We are looking forward to March 1st when he will have his central catheter removed -- the first time he will be without a port in 9 months!!!!

Day +24

We finally seem to have gotten a handle on the mucositis; the sores have greatly diminished and the pain is not nearly as severe as it was so talking, drinking, eating is no longer prohibitive.  Unfortunately, now that he is able to swallow with only slight discomfort, the nausea and malaise has set in.  It seems like this entire process will continue to be one step forward - two steps back!  To add insult to injury, the peripheral neuropathy that was only slightly bothersome in his fingertips has now become quite painful (burning/tingling) and is starting to spread down his fingers.  The doctor can prescribe Lyrica which has shown to have some relief but originally Mike didn't want to take yet another drug so I didn't request any before but today he has consented to take it so now it's been a runaround with the doctor's office getting someone to call a prescription in before they close for the weekend.  I have learned my lesson and will be more proactive in getting what MIGHT be needed in the eventuality that Mike changes his mind about something.  In the meantime, I did have him take an anti-nausea pill earlier today so that seems to have helped with that anyway.

Day +30


The last few days have been basically more of the same.  We did have a follow-up visit with the doctor and it turns out that the burning in Mike's fingers (which spread down to other parts of his hands) was not peripheral neuropathy as believed, but was actually an internal burn (sort of a chemical burn) as a side effect of the busulfan.  Which would explain why the gabapentin did not have any helpful effect.  Other than that, everything else is pretty much moving along as expected.

Today, however, was a MAJOR milestone in the recovery process as Mike had his Central Catheter removed!  For the first time in 9 months he does not have something protruding from his chest (other than the 2 chest hairs that he hasn't lost in the chemo rounds!)

They also did a bone marrow biopsy so we will know in a couple of days how successful the transplant was.

Finally, post release from the hospital, we stopped in at the doctor's office for their lab to draw blood for a chimerism test.  For the sophisticated: A test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient's blood, bone marrow, or other tissue.  For the regular folks:  this test will tell us what percentage of Mike's blood is "his" and what percentage is "his sister's".  If there are not enough of his sister's cells flowing through his veins, they can infuse more from the extra they stored when she was here to donate.

In any event, we will have all results in a couple of days.  Prayers, please, for a positive result... thanks!

Day +35

The results of the bone marrow biopsy came in and they doctor said it looks good!  As far as the chimerism test, that will take at least another week but the goal is to have 100% of his sister's cells flowing through him.  If that percentage is less, however, they will not have to inject more cells - they will just alter the dosage on the immunosuppresants.

The burning on Mike's hands decreases and then increases, there doesn't seem to be a consistent pattern but has now spread to the bottoms of his feet which is making walking painful.  This is a double downer because the only exercise he really has the energy for is walking and it's so important for him to stay as active as he comfortably can.  This particular side effect can continue for another month, there is no set timeline.  So that is pretty depressing.  The doctor had told us his skin will start to peel in the affected areas, basically like a burn would, and we can see the evidence of that in his fingertips where the burning started.

One thing we wanted to discuss with the doctor in more depth was his recommendation that Mike begin taking Rydapt daily for a year on Day +60.  Rydapt was part of the induction and consolidation chemotherapy regimens to combat the FLT-3 mutation of his subtype of AML.  Rydapt is a type of targeted therapy called a kinase inhibitor. It works by blocking several proteins (kinases) on cancer cells, including FLT3, that can help the cells grow.  We did not understand why the Rydapt would be necessary after doing the stem cell transplant and all of the accompanying drugs and chemo, etc.  Wasn't that supposed to wipe out the leukemia?  The doctor explained that the whole process (without Rydapt) leaves Mike with about a 30% chance that the leukemia will return; the hope is that by taking the Rydapt we can get that 30% down into the single digits.  The FDA only approved this drug last April so the post-transplant studies are still new but it is our best chance for a long term positive outcome.  The cost is prohibitive ($2000 a month after insurance pays their part) but if it can keep Mike cancer free, it will be money well spent.

Mike's appetite still hasn't returned but that is mainly due to the fact that everything still tastes so crappy -- it has a metallic taste.  Citric based foods (fruits, tomato sauce, etc.) are the worst with sweeter foods being marginally better.  This, too, takes a few months to resolve itself so we continue to search for something, ANYTHING, that tastes good.

Other than these things, Mike continues his progress back to good health!

Day +41

So, I haven't updated in a while because there hadn't been much new to report but the last 2 days have seen a major improvement.  Now that the wounds from his catheter have fully closed up, Mike is able to immerse in water and was able to swim a couple of laps in the pool this morning... very exciting!!

His energy is coming back, slowly but surely as are his taste buds -- the metallic taste has diminished and he is able to get food down that isn't quite enjoyable yet, but also is not horrible tasting.  The burns in his hands are about 90% improved and there is only one area on one foot that still really bothers him.

All in all, things are definitely on the upswing.

For the medical facts:

The results of the chimerism testing are received and the engraftment is now fully documented.  The CD33 myeloid cells are 100% his sister's.  The CD3 T Cells are still 30% Mike's and 70% his sister's and we need those to get to 100% (or at least 98%) but we have no reason to believe that number won't keep climbing.  Right now it's as if Mike is a newborn baby with undeveloped T cells so he still has to avoid all bacteria, germs, etc. but we expect to be at or near 100% in the next 5-6 weeks.

The bone marrow biopsy did show some minimal residual disease (MRD) with blasts less than 5% but none in the peripheral blood so the doctor thinks the blasts may get knocked out once the T cells are at maximum "sister strength".

The biopsy also detected a new marker: DNA Methyltransferase 3A (DNMT3A) but the doctor wasn't concerned about that manifesting into another leukemia so we are also not concerned.

As we had decided previously, Mike will begin taking the Rydapt daily for a year which will increase his fighting odds against the FLT3 mutation and perhaps that will knock some of the blasts out as well.

Other than avoiding germs, crowds, etc., once he has built up the physical strength and stamina, Mike will be able to resume a lot of his normal activities.  Once we get to day +60, a lot of the highest dangers have passed and unless something out of the ordinary occurs, I will probably only document things on "goal post" days (i.e. day +100, 6 month biopsy, etc.)

Thank you all for sharing in our experience thus far and thank you again for all of your support, prayers and well wishes.  They meant so much