Transplant Time

[PaulS]

Hi all - in the hospital and getting ready for transplant. So far feel fine - had my first chemo treatment with flurdarabine which was uneventful. Four days before the transplant....

Tracey - how are you doing? Still on schedule?

Paul

[Neil Cuadra]

Best of luck, Paul.

You told us that they found a matched unrelated bone marrow donor for you, after your brother was ruled out as a donor. What do you know about your donor? Did they let you know if it's a man or woman, what country they are in, or how closely they matched you?

[bailie]

Paul, we are with you through this. I can remember these first days very well. I felt fine the first two days and then it was Day-2 that I first felt the effects from the Fludarabine. I felt tired, but no feeling of any kind of pain. My suggestion at this time would be to keep your mouth/tongue as clean as possible and eat/drink as much as comfortable. Be very aware of how your digestive system is reacting to the Fludarabine and the other pills that you are/will be getting. Try to keep a good balance between constipation and diarrhea so either extreme is handled. Try to get as much sleep as possible. The next 10-15 days will find you tired so keep your mental stamina as good as possible.

It will be very important to find out whatever food(s)/fluids work best for you. It will probably take some experimentation so don't worry about not eating what doesn't work. For me it came down to a lot of tomato soup which served a purpose of food and fluids.

I wish you the very best! Let us know if there are any questions.

[DanL]

Strength and honor Paul! Oops, wrong reference, but still appropriate. Here's where the discipline kicks in. Eat as well as you can, even if it is ensure or ice cream, take pain killers as needed (usually a few days from now), get up and walk every day, even a few steps, shower time is a wonderful time once you figure out the tubing and poles - a chair in the shower is really nice to soak on. Best of luck!

Dan

[PaulS]

Hi - thanks for the support - I appreciate all the knowledge and support I've received from this board and will need it more than ever.

My donor is a 10/10 match - a 24 year old female I believe - that's all they told me. I don't know where she's from. She has agreed to donate marrow rather that peripheral blood - could mean a longer grafting time with less GVHD - as they couldn't do stem cell depletion or a fully meyeloablative conditioning due to my heart situation the marrow donation may work out better in terms of reducing risk of GVHD while still getting some benefits from graft v leukemia - at least that's the theory. In any event I'm very grateful to this complete stranger for going through this unpleasant procedure to save my life. Very humbling.

Thanks for the advice Bailie - I'm slightly constipated now and requested meds to deal with it - only been one day so maybe I'm panicking a bit. I happen to enjoy hospital food and have been eating like a pig - no problem with appetite so far - eating much more than I normally do. See what happens in the next few days, but so far I'm looking forward to each meal. Walking the halls while I can still leave the room - gonna try for a couple of miles today if I can stand the boredom - maybe try headphones.

Second bag of chemo just finished - 4 more days. Best to all
Paul

[HopeW]

So happy for you to find a perfect match. All the best wishes pouring upon you.
I might face a BMT too, and my heart is not very good, i have valve leaking. If If you don't mind, What is the problem of your heart?
Where do you get your transplant? What regimen do you use?

Thank you and blessings to you!

[traceyn11]

Hi Paul,
I was just thinking about you today and wondering how you were doing. Glad you are still in good spirits. That is great that they found a 10/10 match for you!

I just finished all my testing - that stress test was awful! Everything is still on schedule. The only thing that would change that is if the fungal infection is still in my lung. If so, they will delay it. I am still feeling good, just getting really nervous since this is my last week at home with the family for awhile.

Sending prayers and positive thoughts your way! Keep us posted when you can.

Tracey

[Cheryl C]

Thinking of and praying for you PaulS and Tracey, and also for those who are still waiting for donors.

[PaulS]

Dan - Strength and honor works for me - thanks for the good advice. I walked the halls for over an hour yesterday - only stopped because my infusion pump's battery ran out. Don't know how long I'll feel good for but after only two rounds of chemo I feel fine and figure I should do as much as I can while I can. I'll give the shower another try - I hated it the first time, but maybe sitting down will help.

Tracey - I know that last week nervous feeling well - A couple of days before going in I took a short hike with my son to a waterfall - it was awesome doing something I love with someone I love - I recommend doing something memorable with loved ones that you associate with being healthy before you go in as a reminder of the goal.

I'm feeling better in the hospital feeling like I'm finally doing something to get better. So far not especially scary Strength and honor! I'll do my best to be an inspiration for you. You will get through it.

Cheryl - I'm sorry you have to go through this - I too have valvular disease - along with pulmonary hypertension - some of it relates to the MDS and the heart working harder due to low hemoglobin - and also the increased volumes associated with frequent transfusions. My cardiologist thinks it will improve when the MDS is better - and skiing in March is still the goal.

I'm on a reduced intensity chemo regime - I think its the conventional drugs but at lower doses - my regime is also influenced by the donor donating marrow rather than stem cells. I"m at Sloan in NYC - I had hoped for a t-cell depleted transplant but they wouldn't do it with reduced intensity chemo - and the marrow donation is associated with less GVH. They are also having a cardiologist follow me and are being careful not to overload me with fluids. I'd be happy to talk to you via email or private message - I don't have a great grasp on all of the conditioning and anti GVH drugs I'm getting and wouldn't want to confuse the entire board. The number of blasts and cytogenetics also influenced my conditioning regime I think. It seems like each transplant is a little different depending on the doctor and situation. The most important thing is to find a very experienced doctor/hospital you feel comfortable with and can trust. At the end of the day you will have to rely on their experience and judgement. I don't think the valve problems should not rule you out for transplant. My thoughts and preyers are with you.

Paul

[traceyn11]

Hi Paul - So glad you are still feeling well after 2 days of chemo and that you are walking so much! Thanks for being my inspiration! I love the idea of doing something memorable with my family before going in. Sorry to hear about your heart issues, hopefully that will get better after the transplant.

Cheryl - Thanks for your prayers.

[Cheryl C]

PaulS - I think you got me mixed up with HopeW who has a heart problem. Doesn't matter - just as long as you keep coping as well as you are now!

[PaulS]

Oops - I was posting for Hope about the heart stuff - thanks Cheryl for your thoughts and prayers.

[traceyn11]

Hi Paul - How are you doing?

[PaulS]

Hi Tracey - still feeling good - they are giving me a new chemo drug today (melphalan) so I'll see how that one goes. Otherwise I'm OK. Transplant in two days.

How are you doing? When do you go into the hospital?

p

[traceyn11]

Glad that you are still feeling good. That is the same regimen I will be on - Fludarabine first, then Melphalan. Still praying and sending positive thoughts your way!

Transplant is on the 23rd, I go in on the 14th to start chemo. I will know tomorrow if we are still on schedule. It all depends on the CT scan results.

Tracey

[PaulS]

Hi Tracey - you can definitely handle the chemo. Thanks for the prayers and thoughts - you are in mine too. Let me know how it goes tomorrow.

Paul

[marmab]

I too had marrow, not stem cells, for my transplant, and I have had no GVHD whatsoever. It's been over a year now since my transplant, and, though there were some bumps in the recovery road, I am feeling great -- at 100%. Hang in there! My thoughts are with you.

[PaulS]

Thanks Marmab for the encouraging words. I'm glad you are feeling so good!
Paul

[bailie]

Paul, I appreciate your "blow by blow" updates on how you are feeling. I think it helps all of us even though some of us have gone through the SCT. I hope you are still doing fine. The Fludarabine hit me pretty hard (no pain, but tired feeling) at Day -2. Sounds like you are doing better than I did.
Wishing you the best.

[PaulS]

Hi Bailie - I'll keep going if its helpful - don't want to scare anyone if things get rough - then again adds some pressure for me to do well.
My chemo is non-myloablative so perhaps that has helped. Nevertheless, after the fourth day of chemo and feeling good - yesterday was a day of rest - and I felt really tired - head ache and neck pains - didn't walk the halls much. Today my neutrophils are too low to leave the room so I'm confined for a while. I still am eating reasonably well but without as much enthusiasm. Feeling better than yesterday but still somewhat woozy. My doctor tells me the next few days will be the hardest - so we shall see. Thanks to everyone for their support.
Paul

[traceyn11]

Hi Paul,
Glad to get your update. Sorry you are confined to your room. Hopefully you have something to read or movies to watch. Glad you are still able to eat. I never eat hospital food with enthusiasm!

My transplant has been delayed. The CT scan I had on Sunday showed the fungal infection in my lung is still there - smaller but still there. It also showed a small abscess in my colon. They admitted me on Tuesday to treat with IV anti biotics and anti fungals. I was released today to give myself IV treatments at home. The dr. said for at least a month. So you will be way ahead of me!

[DanL]

Paul,

I am keeping good thoughts for continued smooth sailing. These next few days when your neutrophils get to zero are they hardest until you start to see them come back up. Once they start coming, you will feel better, energy will return, and the crumby feeling will slowly go away. I am very hopeful for your strong recovery.

[traceyn11]

Hi Paul - Just wondering how you are doing. Hoping things are going well.

[bailie]

Tracey,
I sure don't have any idea how Paul is feeling, but I was feeling very tired at his stage. There was no pain or anything like that. It was tiring for me to carry on a conversation, watch TV or be on the computer. I had my caregiver (daughters) answer emails for me. It was about Day +12 when I started feeling more energy. It is during this time when a person needs to be as patient as possible. I hope Paul is doing well and working on passing the time the best he can.

[traceyn11]

Tracey,
I sure don't have any idea how Paul is feeling, but I was feeling very tired at his stage. There was no pain or anything like that. It was tiring for me to carry on a conversation, watch TV or be on the computer. I had my caregiver (daughters) answer emails for me. It was about Day +12 when I started feeling more energy. It is during this time when a person needs to be as patient as possible. I hope Paul is doing well and working on passing the time the best he can.

Thanks Bailie. Hopefully we will hear from him in a few days then.

[PaulS]

Hi - Tracey, sorry about your delay - hopefully they'll fix you up and you'll be good to go - my transplant was delayed a few times for donor and heart issues - sitting in limbo can be tough - but try and enjoy your reprieve. Thanks for asking about me.

Dan - the shower advice was excellent - No matter how bad I feel going in, the shower always makes me feel better - just letting the warm water run over me is somehow very therapeutic.

Well, everyone was right about the days following transplant being difficult. The last few days have been hard - I've been indescribably fatigued, not much of an appetite and generally feeling miserable. I feel a bit better this morning and hopefully it will keep up. Paul

[traceyn11]

Hi Paul - Glad you were able to post this morning! So sorry the last few days have been so hard. Glad to hear you are feeling a bit better today. Hopefully you will continue to feel better every day. I am going to remember Dan's advice about the shower too.

I didn't realize your transplant had been delayed a few times. I did finally get a little bit of good news yesterday - the bmb I had 2 weeks ago showed my blasts have gone from 14% to 10% since the last one I had in March.

[PaulS]

Hi - Tracey I'm sorry for your delay - hopefully they will fix you up and get you back on track. I was delayed for several months - waiting in limbo can be tough.

The last few days have been difficult for me - extraordinarily tired, not much appetite, miscellaneous pains (more related to the bed then anything else I think). My counts are still down around zero and I'm praying to engraft. Meanwhile pain meds help somewhat but I'm still quite exhausted most of the time.

Dan's suggestion about showering was a good one - although it takes all my energy to get into the shower, I always feel good with the water cascading down my face.

I'll try and keep you posted as things move along. Its been one week since the transplant!
Paul

[traceyn11]

Hi Paul,
Will be praying for engraftment! Thanks for posting. It's good to know what to expect. Hope you are feeling better every day!

I don't really mind the delay. It gives me more time with my family. I do have to give myself IV meds - but I am getting used to that.

[PaulS]

Tracey - that is good news about your blasts going down -are they doing anything get them down further? I understand that blasts below 10 improve the outcomes - so maybe you'll be able to get them down some more.

Sorry for posting twice - I didn't realize there was a second page and though I had messed up my initial post. Did I mention that my brain is very fuzzy?

I started nuepogen tonight - its supposed to speed up engraftment - I'll feel much better when I see signs the transplant is working.

Best to all
P.

[traceyn11]

Hi Paul - No, they aren't. I think it must have been the only good thing that came out of the 2 rounds of Vidaza I had. I was just relieved to find out that they had not increased - especially with all my infections.

I am not surprised your brain is fuzzy. I know chemo does that to you. Hope you continue to feel better and that the neupogen helps speed engraftment.

[HopeW]

Paul, you are in my thoughts and prayers.

[Cheryl C]

I'm reading your posts with interest, Paul, and am really happy to read that things are going to plan so far. I'm continuing to pray for you, along with the other BMT/SCT friends on this forum and those who are struggling for answers.

[DanL]

Paul,

Just wanted to pass along some positive thoughts and strength. Those few days prior to engraftment are really difficult sometimes. I was a little bit of a late bloomer on the neutrophils and was around day +26 before I hit 1000. Even getting on the positive side of the neutrophils helped my energy level and overall well being.

Dan