July 10, 2010 at 2:07 pm #22740
Well what a turn of events. I tell my wife I am tired, she calls the doctor, and makes an appointment (in Philly at Temple Jeanes Clinic). I have been going there since my diagnosis in Feb. I get there and the Doctor finds there are 24% blasts in my peripheral blood and says I have AML. She tells me I have 2 choices: 1) stay now and start chemo or 2) come back in the morning. I went home and returnedd in the AM with my belongings. They put me on Cytarabine and Idarubicin. I am 32 and felt like I was in prison for a week. So now I have to wait to see if the blasts come back in a week. Hopefully they locate a donor soon. I will keep you posted as much as I can. The type of AML is Inversion 3.July 10, 2010 at 7:55 pm #22741ZoeMember
What a blow that must have been, are you still reeling? I am sure you really needed that night back home, I am glad you took it for yourself. Take care of yourself. Pamper yourself, let your wife support you, she needs that as much as you need the support. Keep us posted. You are young, that will help your recovery during and after your transplant.
ZoeJuly 12, 2010 at 3:59 am #22744
I will pray that they find a full match donor for you and that you can get all of this behind you. Once they find you a donor, it is just a matter of following it step by step…..it will all be layed out for you. Stay strong, both you and your wife. You two will be in this together…..it will become "we" not "I" when you talk about this. Thank the Lord that you have a wife for support.
Take care and keep us up to date. You will be in my prayers.
MaryJuly 12, 2010 at 2:00 pm #22747
1st thanks for the support and 2nd I spiked a fever last night and had to drive 1hr and 20 min to the hospital. They admitted me and now I am stuck in this prison. I can’t wait until they find a match so I can start this process. Has anyone ever heard of going through Chemo and never being neutrapenic?(sorry for spelling) That seems to be what is happening to me so far. Makes me a little nervous to the point where I don’t think they gave me enough to kill the AML. If anyone has any knowledge of this it would be great.July 12, 2010 at 2:59 pm #22748
Neutropenia is very common with chemo. My husband was hospitalized several times because of fever and low white counts. The chemo isn’t going to kill the AML. It will hopefully put you into a remission (bring down blasts and raise your blood counts) while you are waiting for a donor. Any news yet on a donor? Do they give you any kind of time line?
MaryAugust 19, 2010 at 2:59 pm #22800
Well folks it has been hell for the last 5 weeks. I would get let out of the hospital and catch a fever right away. I would be out on a day or two tops. The fevers continued to push my transplant date further a further away. Now everthing is set. I will do chemo again next week and the transplant is set for the 31st. My donor is a 9 out of 10 male who is 41. My doctor said he is basically a 9.5 because our chromosome A is the different and that is not a big deal. Hopefully all goes well. I know I have a long road to recovery but I am ready now. Ready to fight! We only get one of these lives so we have to try to preserve it as long as we can. Hope everyone is doing well and I will keep you postedAugust 19, 2010 at 3:09 pm #22801
Also not sure if I let you know but my MDS turned into AML.August 19, 2010 at 4:41 pm #22802Kenneth_In_VaMember
Good Luck, Jersey Guy and stay mentally tough-you are in contol of that part. Let the Drs and support folks take care of the rest of it!!
Gene in VirginiaAugust 19, 2010 at 7:09 pm #22803simplistic007Member
Jersey Guy, everything will work out. Remember there is a God and he takes care of all of us. Have your faith and leave it to God. You will do great. My thoughts and prayers are with you.
simplistic007August 20, 2010 at 2:49 pm #22809
Thank you for the words of support.August 20, 2010 at 5:15 pm #22811
It sounds like you have a good perspective on this. The fact that you have such a close match, a young donor, and if I remember correctly, you are young, all are in your favor for a good outcome. Where are you having your transplant? Will you be able to keep us up to date while you are in the hospital? If you have a lap top, I am sure that they will have WiFi or they may even have a computer that patients can use in a common room. That is what they had where my husband has his transplant. If you have questions, don’t hesitate to ask. I hope that you have strong family support and that you trust your doctors. It sounds like you do.
You will be in our prayers. That is where your true hope lies.
All the best and we are here for you.
MaryAugust 21, 2010 at 12:16 am #22815
I will be having it at Temple Jeanes Clinic in Philadelphia. I will have my laptop and hey do have internet for it. I will keep you posted as much as possible. And yes Mary I am 32 years old. I really have only one choice and that is to beat it. I only have one life so I will have to fight for it and thats that.August 21, 2010 at 11:57 pm #22816
I Googled your transplant hospital and they sound top notch. It saddens me that you are so young to have to go through this so early in your life. You seem to be on top of this and believe it or not, you will be looking back on this before you know it. It seems like this has all happened so fast, and it has, but be glad that the date is set and that you don’t have to sit around waiting to get the ball rolling. Try to think of it as an adventure. I am not trying to be flip about this at all or diminishing the seriousness of your situation. You will be in our thoughts and prayers. Glad that you will have access to a computer while in the hospital. Use it when you can.
Remember, one step at a time. Is your induction chemo low intensity or full ablative? Also, will you be having total body radiation?
Keep in touch!
MaryAugust 22, 2010 at 1:19 am #22817
I did not have radiation at all. I had the 1st set of chemo already. They called it the 7+3. I think one of them was Citaribine and I forget the other. My MDS turned to AML so they had to put te AML in remission. It all happened in a month. I got the 1st set of chemo and it put it into remission. I then got fevers alot and that put off my transplant. Now everything looks like a go and I should be transplanted on th 31st. I will try to keep you posted when I am there.August 22, 2010 at 7:47 pm #22818ZoeMember
Wishing you the best. Your age should help you through it. Words always sound so trite in situations like this. Nonetheless, please know I will pray for you. Love your attitude, keep up the fight!
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