Congrats Lora!

That is quite a treatment plan. If I read it right, it sounds like they are giving Ryan's NK cells a week to do their thing before giving you your new cells, so during the 23rd when you get Ryan's NK cells and Oct 1, do they just give you transfusions?

I will keep you in my prayers.

Karen

Well they mentioned giving me something for a few days. I can't remember what the name was it was Bio-something. But my understanding it that it would help Ryan's cells stick? Or something? Can you tell I have no idea what I'm talking about. And then transfusions too I'm sure.

Thanks

I'm so glad you are excited! How great to have a plan! The medical advances that are being made all the time are just fascinating. We have our consult with U or M tomorrow. I am feeling good about Julian going there for transplant, but I will be glad to have a plan too. Things feel so up and down right now. I do better when I am with him. When I am away it is hard. Right now, my husband is staying with him through chemo, and I am working and caring for our 16 month old daughter. I am pregnant, expecting in late October or early November, so I will be with him through most of everything after induction.

Thats ok Lora it just be scary if you knew everyhing they were talking about.

It sounds like they have it figured out and since they know what their are doing thats all you can ask for.

Karen

Lora- congrats on the date set! This is such an interesting protocol to me. It seems like they are really on to something with the NK cells, I've done a ton of research on this stuff, it's exciting that you will get to benefit firm these warrior cells!
Best of luck you'll do great!!!

Lora -- sounds great. And, don't get scared of the fact that you are not scared -- that's OK. Excited? GREAT -- enjoy the ride. It is quite an adventure you are going through -- you might as well enjoy it. There has to be a little fear -- don't let that worry you either. Thanks for keeping us up ... have to admit, never saw such a detailed plan before. Inspired great confidence in your team -- dave

Thanks everyone for your kind words. Yes, the fear has begun as I see all the appointments popping up on my MDA calendar this morning. I knew the excitement would be short lived. :-) Now I guess it's just an anxious feeling.

jandrew, I can't imagine how you feel with your little son going through this. My heart goes out to you. My mom has been all over my treatment and hospital stays and I'm 44! When I tell her to calm down, she asks me how I would feel if this were happening to my boys. I can't even imagine and I pray for strength and peace for you.

Once I get closer to the treatment plan, I'll post more details about what they are doing for those interested. I just got a high level run down in the initial calls.

Thanks again to everyone.

Best wishes Lora. May this be the path to a long, healthy life.

Lora,

Thank you for your kind words. It is heart-breaking to see my son go through this. The silver lining is the fact that we are going to a top of the line facility! After our consult today, I am feeling very optimistic! The doctor told us that the risk of relapse with transplant will be lower than the risk of relapse was with chemo alone. It will not be an easy process, and I was also very sad to learn that it could quite likely cause infertility problems for him later in life, but he deserves to have a life! I know this is the best place for him to go for transplant. Every question had an answer, and I am very impressed!
I wish you the very best! I am at the excited stage now, though I know there will be some back and forth before we actually get to transplant. I pray for peace and strength for you and your family as well. It sounds like you have a fabulous medical team as well, and your positive attitude can only benefit you!

Jacki

Thanks Jackie for your kind words.

I've spent this week doing the basic testing I mentioned in my post. I got a call from the Stem Cell Coordinator yesterday that my donor will require further testing though, so my schedule above is out the window now. I didn't take the news well b/c I liked having the plan and was looking forward to getting started (and over with). And now I have no plan again. But I will. Just need to go back to waiting and being patient.

I hope the wait isn't too long, and if it is, I hope I don't have to redo all these preliminary tests. Sorry if I sound pouty. :-) I'll let everyone know when there is a new plan.

I do have more information on my protocol. Here it is in these links:

http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2012-0819?OpenDocument&ExpandSection=7%2C5#_Section6

http://clinicaltrials.gov/ct2/show/NCT01823198

Thanks for all the support!

Lora

Lora

I am so sorry to hear that they have to do more testing on your donor, but it is for the best that they make sure everything matches up good.

I will keep you in my daily prayers.

Karen

Lora -- Karen has it right all the way around, and our additional prayers for you will be good. Think of it this way -- your team could rush into it without all of the facts that they need to make the best possible decision. Alternative, they could keep doing research on your case for years to come to be sure that they do not make an error. These are the extremes, and as Aristotle said: "Virtue is always in the mean between the extremes." It is what the math people call an optimization problem. Taking the time it needs to get a good decision, but not taking so long as to further endanger the patient. I feel like your med team understands all of this and they are trying their best to be sure they are right before moving ahead. So hopefully that will put you at ease and give you the assurance to be patient, since it is for the best. -- dave

Lora
I'm sorry to hear about the delay, I know how frustrating that can be. If more tests are required, it is only for your benefit, I'm certain.
Best of luck for things to get moving bavk in track soon

Lora

Any word on your donor and do they have a new plan for you Yet?

You are in my prayers.

Karen

Hi Karen,

yes I just posted on another thread. Thanks for asking! Here is what I wrote:

Here is my SCT update... I originally posted that my transplant date was OCt 1, however that donor fell through in the physical exam stage. I have new dates for my second donor... admit to the hospital on Oct 15 and transplant on Oct 29. I have a long protocol due to an NK cell clinical trial they are performing on me.

I'm really hoping that this donor works out. I've really benefited from reading everyone's progress lately, those who have recently had transplants and also those from older threads. I'm really looking forward to getting on with the transplant. Feeling like my life is on hold right now.

Lora