15 replies to this topic

[cpsn0000]

Hell everyone,

Its been awhile since I posted on this board, I have transitioned over to the stem cell board. I am getting ready to go in at the end of the month pending no problems occur with my pre-admission testing. So far, my pulmonary test came back good, my muga scan shows 60% pumping rate for my heart which is good, just waiting on the blood work to see how my other organs are functiong and making sure no viruses are sitting in my system. They have located a 10/10 match for me and the nerves are high but I am confident this will work out for the best. As some of you may know, I was unable to stay on any of the current TKI's due to long low counts and severe thyromcompentia (low platelets) where I had to take 2 and 3 months breaks from my treatment. I know, I misspelled the fancy word for low platelets. I reached CHR in 6 months but still have 100% Ph+ but read a very low PCR. CML acts so differently it seems from person to person but maintains the same general concepts if that makes any sense?  I just did my 4th BMB on Friday and I pray that I am still in chronic phase as my report stated in Mid-April of this year.

Please think of me and keep me in your prayers as I begin this journey. My blood type will change to A+ where I am currently B+. My donor is a 18 yr old female and both of my siblings were only a 5/10 match. I hate being too positive, I am very superstitous right now after reading so many success and devestating stories on various boards.

Thanks

[Marnie]

Best of luck, and I'll be sending good vibes your way.  A 10/10 match makes things look very optimistic, I would think!!  How bizarre that your blood type will be changing. . .never heard of that!  I'm A+, so if you ever need a transfusion, I am there for you!!  Oh yeah. . .you probably don't want my blood.  Dang.

Please continue to post in this area so we know how things are going for you!

Marnie

[Trey]

The donor looks good, so you could not have any better chance of success.  We are expecting to see an "A+" result.

[cpsn0000]

Thanks guys. Only concern I have thus far is my AST came back at 89. The highest its been was 55 and the range max is 66. My PA said initial blood numbers look good but the 89 stood out since that shows your liver function.

Any thoughts on this? I did email my doctor about this since he wasn't at my visit for all of my testing. I will see him on the 16th.

[cpsn0000]

Sorry, ALT is at 89, not AST. AST is 59.

[Happycat]

Best wishes to you!  I'll keep you in my prayers - I know it must be scary and exciting all at the same time.

Traci

[grannyd]

I will be keeping you in my prayers, may God bless you, keep the Faith!!!  granny d

[momruns]

My thoughts and prayers will be with you every step.  I will say your name in my nightly prayers (may I have your first name).  Please update this board so I may follow your journey.  Best of everything.

Loreta

[hannibellemo]

Good luck with your transplant! I don't think that 89 is considered particularly high, just something to watch. It could also be a mistake and be normal on your next test. Thoughts are with you!

Pat

[Susan61]

HI:  A 10/10 match sounds good to me.  I wish you the very best on your new journey with CML.  I will pray that all goes well for you.  Keep us all up to date on how you are doing.  Your experience can help someone else.  I am also A+.  What a shame none of us can donate who are A+

Susan

[cpsn0000]

Hello everyone,

Momruns, my name is Sal. I thank you and everyone on this board for putting me into your prayers and I want to wish all of you and those who are fighting along with us who don't come to this board, much success in becoming cancer free or for long term remission.

[nathaliece]

Sal,

I will keep you in my prayers and look forward to your post advising all of us that you are cured!  Sending positive, healing thoughts your way!

Nat

[Trey]

The real issue is what the transplant docs require.  If ALT must be brought lower, then if you are still taking a TKI drug, then you should ask about stopping it soon.  The TKI drugs appear to elevate the liver counts for short periods, and often liver counts reverse quickly when stopped.  That is why it appears they do not actually damage the liver in any significant way from what is known about the issue.

[SunNsand]

I am also an A+. A+ is better than B+ anyday!

How brave and thoughtful of this 18 yr old young lady. You both will be in my thoughts and prayers. Do you have a caringbridge account or blog?

[Tedsey]

Best wishes.  You will be in my thoughts and prayers.  I read somewhere that if the donor is younger, the better the result expected.  Here is to a cure for you and no complications whatsoever!

Tedsey

[cpsn0000]

Thank you everyone for your kinds words and support. I do have a caring bridge website which is almost ready to launch here soon. Once it is up, I will post it here and let everyone daily how I am doing on that website as well.

Trey,

I haven't been on any TKI drugs in over 2 months but my PA doesn't seem concerned about my ALT. COunt isn't too high and all my other labs came back normal so that is much more positive sounding then back on Friday.

Thanks again and I will update everyone on how my BMB camer back on the 16th. I pray I can hold onto chronic phase for 3 more weeks is all I need.