The Leukemia & Lymphoma Society - Fighting Blood Cancers
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Dan's Autologous SCT for AML, M4...the countown begins!

danswife Registered Users
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I know many of you have been following our journey & I thought Dan's countdown to transplant deserved another thread...so noone has to sift through pages of info.  Tomorrow is Day -7...Dan will be admitted at 9:00 AM at UMMC in Baltimore.  I'll keep you all updated.  Thanks!

  • 1. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    jacksonsnana Registered Users
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    Glad to hear from you. I had been thinking of you all today. I will be praying that Dan sails through with no major problems.


    Many Blessings!

    Sherry

  • 2. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    willowbayfarm Registered Users
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    Best wishes for a smooth and very boring transplant experience!  Thanks for the update.

     

    - WBF

  • 3. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Thanks Sherry and WBF!

     

    Day -7 went really well.  We checked Dan in to the BMT Unit around 9:00 AM.  His room is nice...small, but cozy.  He has a bed, table, recliner, three, chairs, a flat screen TV, a closet and some cabinet and shelf space.  His bathroom is pretty big too.  I noticed the room seems loud...must be the air filtration system.  TheBMT unit patients have access to a private kitchen, where they can get coffee, drinks, and snacks throughout the day.  We also sent along some good, healthy snacks.  He can see M&T Bank Stadium (Home of the Baltimore Ravens) and Camden Yards (Home of the Baltimore Orioles) from his room.  There was an Orioles game last night at 7:00, so Dan pulled his shades up and let the ball park lanterns light up his room for a while.

     

    His conditioning chemo is day -7, -6, -5, -4 Busulfan every six hours for a two hour drip.  On day -4 he also gets Etoposide.  I can't remember if it's a four or six hour drip, but it's only once.  Days -3, -2, -1 are rest days.  Day zero is on 5/18.  He's on preventative meds for seizures (rare side effect of Busulfan).  They draw labs like crazy to make sure his liver and kidney functions stay within normal limits.  He's on anti-nausea meds too.  His other preventatives will be given whenever the study calls for them, if he's not already on them.  He's on the neutropenic diet & also a lactose free diet.  I can't remember the reason for "lactose free" but I imagine all of the chemo drugs interfere with a person's ability to break down lactose.

     

    Everyone we met was super friendly and caring.  The team seems to be very attentive.

     

    Today is Day -6.  So far Dan has had four bags of Busulfan...only eleven to go!  Right now he feels great.  Later, he plans to ride a few miles on an exercise bike.  He was riding his road bike here for the last two weeks before admittance...trying to keep his heart and lungs strong.  He rode anywhere from 14-24 miles about twice a week for the last two weeks....pretty steep climbs here in the mountains of Western MD and our little neck of the woods in WV!

     

    His doctor told him to eat small, frequent meals...could stave off nausea.  Dan's biggest worry right now is mouth sores.  He's only ever had one sore.  It's interesting to me what things worry him & what things don't seem to bother him.  He is very glad to have a private, clean room.  He's so glad to have access to exercise equipment and an unlimited supply of drinks and snacks.  He loves to drink coffee & he drinks a lot of water!  He is glad to be able to get it himself instead of waiting on someone else to get it for him.

     

    I'll keep you all posted...so far we are merrily rolling along!

  • 4. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    pamd Registered Users
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    Glad things are going well for Dan! I will be thinking of him on the 18th! Glad he's tolerating the Busulfan pretty well, I did, too. You know, I know several people who never even flirted with mouth sores, so it isn't a given that he'll get them. Many of us do get them, mine were awful, but the good news is, they were pretty short-lived, like two or three days, and that was the worst of anything I ever experienced from Day Zero to now (22 mos. later). So I couldn't even really complain about the mouth sores! Just make sure he uses pain meds if he does get them; it's not a time to be stoic, it's a time to use medication to get you through it, because it won't last long. That pain pump got me through a couple of awful days, then I was over it. But I'm gonna hope he's lucky and skates through without them. And doesn't have any other issues except the normal recovery stuff that's to be expected. Keep us posted----good luck, Dan!

     

    Pam

  • 5. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Thanks Pam, for the well wishes and advice.  You are absolutely right...Dan needs to speak up and report the first twinge of any symptom so they can help him.  His nurses made sure he understood that too!  I just talked to him an hour ago & he was resting his voice...throat is a bit dry.  He's on a 4x daily mouth wash that they'll d/c at the first signs of a sore (I guess that's when they use *magic* mouthwash if needed.)  His transplant doctor told him that his conditioning meds will make his counts drop quickly...but his stem cell infusion is a large qty.  27.5 million in one bag...so that + neupogen should bring his counts up quickly too.  Shorter time for sores to stick around if he gets them.  They have 5 bags of cells (his collection yielded a bunch of cells) so they'll keep the other four bags as back up.

     

    Right now, he's just excited to be at this point... he likes having induction and consolidation over with!  He and his team have accomplished a lot since we found out he had leukemia.  Induction started 2/15/2010 & we are already counting down to transplant!

  • 6. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    jacksonsnana Registered Users
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    My experience with mouth sores was a lot like Pam's. I had to use the pain pump for a few days. I had a really sweet nurse that would make slushies for me, Gatorade, apple juice & ice crushed in a blender. She blended it real smooth so it was easier to swallow. The cold helped to kinda numb my throat. 


    My worst pain only lasted a few days. I am hoping Dan's transplant stay is as pain free as possible.


    Many Blessings!

    Sherry

  • 7. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Well, we are at day -4 now. So far, pretty uneventful...we pray that Dan's countdown stays super boring!  He's feeling fine...exercising, walking, reading, playing on the computer, and getting a little stir-crazy.  He'll bedone with Busulfan soon.  I've lost count, but he's on the downward side of 15-16 bags.  Etoposide is given sometime soon too.  He met with the research nurse and one of the doctors today.  Both tell him they think he'll escape some of the side effects since he's feeling so good...but Dan is not real big on taking anyone's word for it.  He's afraid they'll "jynx" him. 

     

    They've given him liquid potassium.  I think he's probably drinking and sweating a lot.  His appetite is good, still on the neutropenic, lactose free diet.  He loves steamed veggies, so he asks for lots of side dishes on his menu.  He's sleeping well.  I know he is excited about getting "unhooked" from chemo, so he can roll over more comfortably.  He's been wearing tees with the sleeves cut out as pajama tops.  He likes for the nurses to be able to access his hickman without disturbing him too much...easy access to his chest.

     

    Well, that's all for now.  I have an appointment soon with someone who may be adopting one of our dogs.  We are going through a boxer rescue to find good homes for them.  It's becoming too much to care for them, board them, spend time with them, etc.  Plus, when Dan comes home, I'm afraid of having two big dogs all over him.  Sad, but it's best for the dogs.

  • 8. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    paralyzed Registered Users
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    I had to chime in to wish you both all the best. I hope his throat and mouth sores are a minimum and that you continue to hang in there.

     

    Jim

  • 9. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Thanks to you all from Dan and I, for the well wishes and prayers!  So far, no mouth sores!  His mouth is really dry, and he's been drinking a lot, chewing gum, and swishing with prescription mouthwash...four times a day.  Today finished his Busulfan and Etoposide...so no more chemo!!  Busulfan was 16 bags over 96 hours....Etoposide was a four hour infusion today.  Right now, I'm praying that Dan has finally fallen asleep.  they gave him 2 doses of Benadryl prior to the Etoposide.  Instead of sleeping, Dan felt overly tired, but to "jacked-up" to sleep.

     

    My kids and I, along with several friends, and some family held a benefit carwash today to raise money for our "Relay For Life" team.  We are participating in that walk in early June.  We sold hotdogs, popcorn, bake sale goods, and raffled off a bucket full of car washing supplies & gift card.  A friend's family owns an auto body shop.  They donated their lot, had guys come in to wash cars, donated food and supplies.  A few friends and family baked stuff...my kids and I, along with my sister and nieces baked for a few hours last night.  It was a success.  We raised $600.  That, along with some online Facebook donations, and another small fundraiser we did (Southern Living at Home party) netted about $1300.00.  Also, our church held a blood drive today, in honor of Dan and another friend's dad, who was diagnosed with lung cancer a few months ago.  They had 40 donors!!  Another friend is participating in the Leukemia and Lymphoma Society's "Rock and Roll 1/2 Marathon" in San Diego, CA.  He's running in honor of Dan, and has raised $500.  Dan's employer also teamed up with the American Red Cross and held two blood drives in his honor & has another scheduled for mid-June.  So far, the other drives have produced 30-40 pints each!  My point here...we just believe in paying it all forward.  I can't fight leukemia for my husband, but I can sure as heck raise awareness!  With the crazy awesome help and dedication from my friends and family, we are able to give to some really great causes.  I'm so thankful that there are now 120 pints of blood that may not have been donated...all because some people saw our poster, or know Dan from work or church and thought "hey, I can do that!"

     

    I read all of your posts...some of you are survivors, some are husbands, wives, or parents of survivors.  I am just blown away at the sense of community among everyone here.  People cheering others along, offering tips, advice, concern, prayer, joy...it's truly amazing to me!

  • 10. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    willowbayfarm Registered Users
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    Sounds like things are going pretty well so far, and I hope Dan continues to avoid the mouth sores.  I only tangled with them once, but once was certainly enough for me!  Just thinking of you two and continuing to send prayers and positive vibes your way.  Thanks for keeping us in the loop, and great job with those fund raisers, blood drives and all the other things you're doing to raise awareness.  Every little bit helps, huh?

     

    - WBF

  • 11. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    Kcbrino Registered Users
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    Hey Pam (& Dan)

     

    Enjoy reading your posts - just got out of the hospital so I am reliving the experience through your posts.

     

    Sounds like Dan has a good handle on things.  For me going in I was frustrated with the whole "shoe is going to drop" ordeal.  You know where your waiting for something bad to happen.  Once I got to the hospital I drifted into a "living in the moment" mode.  Nothing bothered me and I was focused even if something popped up, well, I could handle it.  And things did pop up and so far I've handled it pretty well.

     

    Long ways to go for both Dan and I.

     

    I wish you both the best!

     

    Cheers!

  • 12. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Thanks everyone...I pass along your well wishes to Dan.  One day, I hope he'll read these posts.  Right now, it's just too much info. for him.  On our caringbridge, we take turns posting.  I am also keeping a personal journal of sorts, and we update a bit on facebook.  Well, today is day -1.  So far, Dan has escaped nausea, vomitting, mouth sores, and most other side effects.  He has a bit of a headache though, so he was buzzing the nurse when we just got off the phone.  His counts are doing what they are supposed to do.  Physically, he feels fine.  Two nights ago, he had lots of body aches.  He said Etoposide may have been the culprit...he experienced the same aches with consolodation treatment while taking Etoposide.  He takes Oxycodone for pain, chasing it with a Zofran, to avoid the nausea that he has felt with pain meds in the past.  He's kind of stir crazy...he describes it like he just wants to be free of all this.  He still has his apheresis cathetar in his chest, which he absolutely can not stand.  He didn't mind the picc line at all.  He'll get his cath out before discharge.  I don't know if they'll do another picc, or just let him do a regular IV for blood draws & stuff.  Internet is spotty at best where he is, so the laptop hasn't really been that much entertainment for him.  I can't wait to go stay with him.  I hate being away!  I should have a new home for my dogs by the weekend and hopefully plans hammered out for my kids.  I'll keep you all updated on the big day tomorrow!

  • 13. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    willowbayfarm Registered Users
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    Thinking of you two today and wishing Dan a very happy re-birthday!  Hope everything continues to go smoothly.  That's a real bummer about the internet access, my laptop made a huge difference for me.

     

    - WBF

  • 14. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    pamd Registered Users
    Currently Being Moderated

    Thinking of Dan today! Hoping it's a textbook transplant!

     

    Pam

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