Transplant time.....

[DanL]

Got the news on Friday that it is time to move to transplant. Doctor said that we are looking at 6 to 12 weeks to begin. I am considering pre-treatment Vidaza to work in 1 or 2 cycles to push down the blasts and reduce the disease. Although i know that it was inevitable at some point, still comes as a surprise when you are handed the sheet of paper saying that it is no longer watch and wait, especially after 3.5 years (almost textbook for median evolution).

[Whizbang]

Best of luck to you Dan, I hope that everything comes into alignment for you as you begin your next, in a series of adventures along the MDS path...

Might I ask if your married / have a caregiver...?

Best of luck and God Bless... I can and will be done...

[Susan L]

Originally Posted by DanL

Got the news on Friday that it is time to move to transplant. Doctor said that we are looking at 6 to 12 weeks to begin. I am considering pre-treatment Vidaza to work in 1 or 2 cycles to push down the blasts and reduce the disease. Although i know that it was inevitable at some point, still comes as a surprise when you are handed the sheet of paper saying that it is no longer watch and wait, especially after 3.5 years (almost textbook for median evolution).

I will be going to have mine on 1/09 - they found a 10 out of 10 match for me. I was shocked - it can happen. Do you have family? I have already done the Vidaza and Decodron route - I too have to rid the blasts before transplant or no use doing it. I am not sure which chemo will be use but that is what I will get. What at your blasts at may I ask?? Don't give up - have faith - this site has all kinds of wonderful people that will help give you support and advise. Take care and god bless.

[NLJabbari]

DanL and SusanL, happy that to know that you have found matches! Wishing you the best!

Sincerely,
Norma

[DebS]

Dan,

You are right. It is never easy hearing the words that you have to move to transplant. But you will have some time to digest this and get things prepared.

Look to these forums for some great advice and support before, during, and after.

Best of luck to you as you join us on your journey.

Deb

[tytd]

Dan, I'm sorry to hear that your MDS has progressed. You have been a big support to others on this forum. May I ask what your Hb was before the recent value of 10 and have your platelets dropped also?? It always bothers me a bit when the BM blasts numbers are borderline, i.e. when 4 % gives you a lower IPSS score and 5% puts you in the higher risk transplant category. (especially when there is variability in reading the BM from one hematopathologist to another). But I guess the fact that your cytopenias have worsened also is concerning. Sometimes I will have a few blasts reported in the peripheral count and then they go away on next count. I know that you have done your homework in researching this stuff and I wish you the best of luck. Tytd

[DanL]

Thank you for all of the responses.

@Whizbang - yes, i am married, so I will have my wife as a caregiver, and my insurance covers in-home nursing as needed for up to 100 days to give her the breaks she will need.

@SusanL - it looks like we will be starting at about the same time, taking the same strategy - improve the counts, go into the fight! Best of luck and we can check in on each other.

@Norma, thank you for the well-wishes

@DebS - i've been on the forums since initial diagnosis, but definitely appreciate the support and knowledge of the forums. thank you!

@tytd - My initial feeling was skepticism as well - are we sure this isn't just an anomaly? The problem is that the HGB dropped from 12.4 to 13.4, I suddenly feel tired, blasts have never been above 2.5% and the degree of dysplasia has increased. Platelets, my nemesis have been pretty darned steady at 31k, after spending 2 years in the 20k range. Marrow cellularity jumped about 15-20%, which also tells me that something changed. The peripheral blasts are new, we haven't ever seen those before. We have been lucky to have the same hemo-path on the last 4 marrows, so i think that I am probably covered on the consistency.

[Susan L]

Originally Posted by DanL

Thank you for all of the responses.

@Whizbang - yes, i am married, so I will have my wife as a caregiver, and my insurance covers in-home nursing as needed for up to 100 days to give her the breaks she will need.

@SusanL - it looks like we will be starting at about the same time, taking the same strategy - improve the counts, go into the fight! Best of luck and we can check in on each other.

@Norma, thank you for the well-wishes

@DebS - i've been on the forums since initial diagnosis, but definitely appreciate the support and knowledge of the forums. thank you!

@tytd - My initial feeling was skepticism as well - are we sure this isn't just an anomaly? The problem is that the HGB dropped from 12.4 to 13.4, I suddenly feel tired, blasts have never been above 2.5% and the degree of dysplasia has increased. Platelets, my nemesis have been pretty darned steady at 31k, after spending 2 years in the 20k range. Marrow cellularity jumped about 15-20%, which also tells me that something changed. The peripheral blasts are new, we haven't ever seen those before. We have been lucky to have the same hemo-path on the last 4 marrows, so i think that I am probably covered on the consistency.

First day here - had lots of test and am ready to beat this - finally - starting chemo tomorrow - fingers crossed.

[DanL]

It sounds like you are ready Susan. Remember to see the positive outcome every time it is tough. Btw, have you found out what you are starting with?

[Susan L]

Originally Posted by DanL

It sounds like you are ready Susan. Remember to see the positive outcome every time it is tough. Btw, have you found out what you are starting with?

Hi - I intend on staying with the positive - I don't know the name yet - will find out later - I believe it started with an E - and for 5 days - but will know when the pharmacist comes to talk with me. I love all the nurses here - this hospital is rightly deserving its rating as number 1! They are so focused and proactive with pain and patients needs. Best to you - how long is your Vidaza cycle going to be?

[Susan L]

Originally Posted by DanL

It sounds like you are ready Susan. Remember to see the positive outcome every time it is tough. Btw, have you found out what you are starting with?

Hi - Just started my first bag of chemo - here are the names Fludarabine IV over 30 minutes - then Idarucin IV over 30 minutes - then Cytarabine over 4 hours. Will be doing these for 5 days. Said it is an aggressive approach - I will let you know how it goes. Best wishes to you.

[Al's Wife]

Good Luck, Susan. You've got a lot of folks pulling for you. Nothing but positive thoughts (even when the negative ones try to creep in).
God bless,

[Susan L]

Originally Posted by Al's Wife

Good Luck, Susan. You've got a lot of folks pulling for you. Nothing but positive thoughts (even when the negative ones try to creep in).
God bless,

Thank you - how are things going for Al? I still have a problem with realizing how big of a disease it is that I have.. We are being positive thinking and will take one day at a time. :-)

[katgio50]

Good luck to you Susan. My husband is on Day +5 on his transplant and so far is doing quite well. I am sure that you will too!

[lindy]

My best wishes to you both DanL & Susan!

Hope transplant preparation is going well for you Susan.

DanL, hope you are doing well heading for the transplant. When will that be?

[DanL]

Lindy,

thank you for the well wishes. It is looking like middle to late january, possibly early february. i am due to get more information on Monday when i start my second round of Vidaza.