Andrea,
The T-Cell lymphocyte transfusion means no full transplant. Only T-Cells. It also means (based on what they told me today) no Tacrolimus since they expect minimal GvHD. They plan to keep me on AC220 for 4 months and do another T-Cell lymphocyte if all is well, then stop AC220. Both of my sisters were extremely upset since they were not full matches and took it really bad ... you are correct, our families feel helpless is such situations ...

In His Grip,
Sami

Andrea,
What tough decisions. Your impressive abiltiy to sort through the complicated research and options tells me your decision is well-informed. If anything, I hope that having the decision makes the road seem more clear ahead.

December 3 is the day we will be counting on. Remission, then transplant. Remission, then transplant. Remission,... It's my new mantra for you. I liked your rinse, repeat, but I'll be saying remission, then transplant, remission, then transplant from now till transplant day. Then you can come up with a new one!

Yeah, Christmas. That stinks. I remember having to be in the hospital for Christmas, Thanksgiving, Mother's Day, my wedding anniversary, Easter, and some other important family events. But my attitude about the holidays was the same as yours. I figured I was getting treatment so that subsequent Christmases, anniversaries, etc, would be in my future. The most important thing is to be surrounded by those you love because that is what makes these days on the calendar truly special.

Can't even count how many wishes I am sending your way.

Therese

Therese,

I was admitted to the hospital just hours after my definitive diagnosis on my parents' anniversary. They have now been married 64 years. I remember how tormented I was that I could not wish them a happy anniversary, and how perplexed they must have been that I didn't call. I speak to them almost every day, and two weeks went by before I summoned the courage to tell my dad. If you remember my early posts, I kept it from my mother until just before my transplant (that was a huge and unnecessary mistake, because she took it like the trouper she is). My sister manned the "excuse cannons," and was sending volleys of "bubba-meintzes (fairy tales that your grandma might tell you - in Yiddish) over to my parents almost daily, exploding any thought that I was ignoring them, instead filling them with so much shrapnel (or "crapnel") about how hard I was working, that they actually believed it. When I told my dad, he cried. I have NEVER seen him cry in his 89 years, but then he took over from my sister as the Minister of War against my mother, until I finally called a cease fire, much to my brother's dismay (my sister was "just following orders"}. She knew my mother was a strong person and could deal with it. I came home just before my transplant so I could tell her. She prays for me daily and is just her usual Pollyana self when I talk to her.

It seems that illness like holidays. I got the flu on my birthday about 30 years ago.

As the holiday season pushes itself relentlessly on others, we can think of it as more of a celebration that we are alive and kicking NO MATTER WHERE WE ARE!! We all know that Christmas was an invention of Constantine, and that it is not know when Jesus actually was born and walked amongst us. It doesn't matter. Every day is Christmas, every day is a new adventure (even if that adventure means finding a drug that keeps us from being nauseated during therapy). My girls are in Canada now with my son, visiting him in Montreal and seeing his lab. Me? I am enjoying my wife's company and am going to see a nephrologist tomorrow (now that is a really jealously-engendering adventure), and then I am going to start writing my short story.

Be well,

Cliff

Cliff,
Love the Yiddish. Love the other words, too. Crapnel. Loved the whole paragraph. You are a writer. No doubt about it.

Will be waiting to see what the nephrologist has to say. We are hoping for nothing interesting. It always pays to be a boring patient.

You are so right about the "day" we celebrate. One year my family celebrated Christmas early, on the fly, so to speak because I was scheduled to go in the hosptial again and there was no timing these things very well in advance. We did Chinese food on a work night. It was a great Christmas celebration.
Therese

Therese,

That is the spirit and the attitude that we all must have. It makes holidays and family times have so much more meaning and gives some reality to all the cliches about love and family and home.

Cliff

Arghhhh, cliff, hoping for nothing but good news for you tomorrow, YES, a boring exam is being prayed.

As for the holidays, my family is awesome and pretty much will go with the flow. ME, I am the problem. I am the extreme traditionalist. I still wait till my kids are asleep to wrap their gifts and put them out on Christmas Eve (they are 21 and 16 ) and they indulge me. I am a control freak too, so I do most of the prep, all of the cooking and decorating. I know it will all work out and I am so grateful for my family.


Sami, interesting about staying on AC220. I cannot wait to,discuss this with my guy next Monday. I know I need to get to transplant # 1 though before I get pushy. This is just fascinating. I almost wish I could stay on ac220 forever. It's just easy and non-eventful. I am sure my results will mimic yours. I am so confident I this drug for those of us with FLT3.

Therese.....I feel the love! Trust me I do. You have all given me amazing support, kindness and another will to survive. This is beatable. We will prevail.

Peace, love and hope,

Andrea

Andrea,
Just catching up on posts. Thank you for the udate. Will be praying for remission on your Dec 3rd biopsy. Sounds like your sisters are as awesome as you are! Also sounds like their plan is very well thought out, I am excited for you!
Take Care,
Suzanne

All,
My record breaking BMB (16 ) was today. Why so many? Well relapse, research, unclear results.....I am now a pro. Today makes 16 since June (4 at 1st hospital, repeaters at second induction -different hospital and after and then research has their own rules) and I wonder why my hip aches at times.
The bestiary of today? I was sitting at HUP and met someone in our group! Twoboyz (Sarah) walked up to me and whispers, are you Andrea? Made my day, week, month! A greet and meet with someone from Daily Strength! Wow!
So, by Wed or Thurs, while all of my docs are in Atlanta at a conference, I should have word. I am not worried, as I think I am close to remission anyway and if a few more weeks of AC220 is necessary to achieve remission to go to transplant essentially disease free, then so be it. My doc at Penn today said he is confident MY leukemia relies on FLT3 , so oped illy shutting down FLT3, puts the leukemia in check. His experience is if this is the case, patients respond very quickly to the drug. We'll see. Again, tonight, no worries. I am happy, despite SSDI denying me again ughhhhh.
Be well all. Peace, love &hope,
Andrea

Andrea,
How special was that! Meeting someone from our group! I hope her loved one is doing OK, have not seen any posts lately. I was thinking of you today, I have a bone marrow biopsy coming up this Thrs, not my favorite thing to do, but necessary. # 16! I am impressed! I admit it, I am a wimp, no matter how many I get, It is still hard. Last time they gave me a some Fentanyl and it did help. Praying for good results for you!
Take Care,
Suzanne

Suzanne, it was amazing! Her dad looked good and she is so full of hope and has an amazing spirit ~ as it should be.
Good luck to you on Thursday ! I have blood draws Wed and possible top up (probable for platelets). Thursday is more work up for transplant, PFT's , echo and CXR. I still need the consult for TBI with the radiation team, hopefully early next week.
I can usually get past the pain of biopsy, its the waiting for results that makes me insane. I am like a kid, I need instant gratification sometimes.
Be well. Hope you are feeling better.
Andrea

Andrea,

You are a champ. I am jealous that you met TwoBoyz (she has 2 dogs). How did she ever know it was you? Does HUP, like Sloan Kettering, dispense with HIPAA laws and say your first and last name when they call you? I am so happy that you are doing well!! I can't believe how many biopsies you have had. I have had less than 10. LOL.

Suzanne,

Don't get uptight about the biopsy. I don't even find them painful, because I think of other things when I am getting stuck. So much of this is mind over matter. The more anxious you are, the more it hurts. Anyway, it is for a good cause! I think I will be getting one on Dec 18, when I go for my follow up and a kidney ultrasound (which will show nothing). Let's face it, all the stuff I got hurt my kidneys. The problem is mild and I am alive. No restrictions, except I was told to be on low salt. Good luck Thursday. I'll be thinking of you, but you will be FINE.

Cliff

Suzanne -- be sure you get the pain killer set up before the BMB -- there may be all kinds of red tape otherwise. But if you have done that before you probably have that down. One thing that I have found useful is when there is pain ... such as when they do the local -- start counting knowing that by the time you get to 10 it will be over. Most of the pains of a BMB are like that -- they do not persist. Counting gets your brain off the pain and onto the numbers. Some people can even hypnotize themselves and can block out the pain altogether. But anything you can do to distract yourself from thinking about how bad the pain is will help. I used to pop my pet beagle on the nose when the vet gave him a shot and he did not even feel it. I had a doctor once who would rub real hard with the antiseptic prep on the skin and would give the shot before you knew it. It just felt like more of the same, and by the time you realized what he did, it was all over.

Unfortunately, now they train them to say little things like ... this is going to feel like a little pinch. Sure, as they pull you off the ceiling. I think the next time I have a BMB I am going to tell them -- just do it, don't warn me. But that is just me. There are lots of gimicks to get around pain, especially the quick kind like at the dentist of in a BMB. Try different things ... attack it, don't let it get the best of you.

Hope this helps you and all who are going to need it -- which is just about all of us. Maybe we can get some feedback with how different people handle it. -- dave

Hi all,
Thanks for the advice on the bone marrow biopsy, I will try the counting method next time and focus on floating in warm water off of some tropical beach, without sharks of course. Last time went better, hopefully one day I will hit on the magic combo!
Thanks,
Suzanne

Dave,

When I was a medical resident and did a lot of bone marrow biopsies, my patients used to scream when I did the aspirate. I have had at least 6 bone marrows done to me and I don't find them at all painful. The initial numbing hurts but so does stubbing your toe. I never worry about anything that is done to me anymore, because after being through all of this torture, nothing really bothers me.

Dave, now that you have made me more spiritual, I doubt I will even feel the pinch. If I do, then it is the pinch of the Lord.

Cliff

Hi Suzanne,
I had 14 BMAs. The secret is not to use the drill, request 3 shots of Lidocaine and make sure they pull it slowly. A fast pull sends an electric shock through my legs. Since I started asking for these three requests, I have had no issues with my BMAs. :)

I will pray for you.

In His Grip,
Sami