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-   -   Day 5 and I'm on my way (SCT) (http://forums.marrowforums.org/showthread.php?t=4428)

bailie Wed Aug 20, 2014 05:57 PM

Day 5 and I'm on my way (SCT)
 
I am at Day plus 5 and it is interesting. The Fludarbine (Day-4) was fine the first couple of days and then it hit hard in Days -2,-1 when combined with Melphalan. Since Day 0 (with addition of Methotrexate), I leveled off. It is a struggle to eat and drink in sufficient quantities. If I can maintain this feeling for about 10 more days, I will be happy.

I was walking 5 miles a day for Day -4, Day -3 then that came to a screeching halt. I do not have a lot of strength as my numbers drop. My chemo regimen is "middle of the road" from what I have been told. I did not have any radiation. I should be in the hospital for another two weeks depending on my numbers. I have greatly drawn on the information many of you have previously shared, and I thank you for that.

I wish all of you steady improvement.

Neil Cuadra Wed Aug 20, 2014 06:25 PM

It's no surprise that your strength faded, but it sounds like you are doing well overall so far. We've got our fingers crossed for you and we'll help you watch your white count and ANC most closely.

sbk007 Wed Aug 20, 2014 06:31 PM

You're doing great!
 
Good Job Baille - Keep up the good work!!

katgio50 Wed Aug 20, 2014 08:46 PM

It sounds to me like you are doing quite well. Try to keep walking if you can. My husband tried to walk even when he didn't feel like it. It was something he had control over and there weren't many things that you had control of . Keep on doing all the right things, and those two weeks will soon pass.

amyangel Wed Aug 20, 2014 10:15 PM

So wonderful to hear how you are doing bailie, Our prayers are with you that God continues to give you the strength that you need to get through the hard time . Looking forward to hearing more on how you are doing .

We will be next !!


Love and prayers
Sue and Amy

Whizbang Thu Aug 21, 2014 11:09 AM

bailie,

Walking is hard during these few days, try and at least get up a few times during the day... In 5-7 more days, you'll start seeing your counts coming up, and you will have the inspiration you need... Stay positive, even if not active, it will help with your recovery...

All the Best!!! May God bless us ALL....

DanL Thu Aug 21, 2014 12:27 PM

Bailie,

It sounds like you are doing quite well. As Dave said, get up and move around as much as you comfortably can without wearing yourself down too much. Once your white blood counts start to pick back up, the energy comes back with them. Eating and drinking is all about will power at this point, so find something you like and go with it. For me, it was peanut butter and chocolate - two things that I almost never ate prior to transplant. I also ate a lot of green chili because it tasted good, which is not generally advised due to the spice level.

Mseth Thu Aug 21, 2014 02:09 PM

Great news Baillie, hope you continue to do well!!

johnwc Thu Aug 21, 2014 09:35 PM

Oh, brother, am I relieved to hear from you. No word since your last email and knew you were "in it" and so happy to hear you are alive and still kicking. Keep up the posts.
John in Portland,,, probably 2 months behind you.:o:D

Whizbang Thu Aug 21, 2014 09:43 PM

Bailie,

I lived on 3 small chocolate milks and 3 small cans of ensure each day (during transplant) for at least 10 days; as DanL said, find what works for you...

This too shall pass.

May God Bless...
David

Birgitta-A Fri Aug 22, 2014 04:53 AM

SCT
 
Congratulations bailie!!!
Kind regards
Birgitta-A

joesmith Sun Aug 24, 2014 09:01 AM

Quote:

Originally Posted by Birgitta-A (Post 34944)
Congratulations bailie!!!
Kind regards
Birgitta-A

It is so good to hear that you seem to be doing really well. Keep up the momentum!

johnwc Wed Aug 27, 2014 05:25 PM

Bailie

How are your numbers?? Love to hear from you.

JOHN

bailie Wed Aug 27, 2014 07:27 PM

I appreciate the comments. My numbers are interesting and almost textbook at this time (Day +12). "Whites" bottomed out at Day 5 and have increased steadily. "Reds" have maintained at about 3.5. Platelets got down to 10 before bouncing upwards.

I have lost taste for almost every kind of food, so that is difficult. Not much energy now.

Whizbang Wed Aug 27, 2014 08:22 PM

See what kind of shakes you can get, and possibly ensures, you need to keep up some calorie intake, it will help keep/get you numbers up...

Sometimes liquid intake is easier to stomach than solid foods...

Keep up the good work, your almost there... Keep it positive (I know it maybe hard), you'll be looking back very soon and feeling/eating really well.....

All the best, and may God Bless!!!

Quote:

Originally Posted by bailie (Post 35009)
I appreciate the comments. My numbers are interesting and almost textbook at this time (Day +12). "Whites" bottomed out at Day 5 and have increased steadily. "Reds" have maintained at about 3.5. Platelets got down to 10 before bouncing upwards.

I have lost taste for almost every kind of food, so that is difficult. Not much energy now.


maggiemag Wed Aug 27, 2014 10:41 PM

Keep up the good work, Bailie! Stay determined.

Margaret

rar Thu Aug 28, 2014 02:01 PM

Quote:

Originally Posted by bailie (Post 35009)
I appreciate the comments. My numbers are interesting and almost textbook at this time (Day +12). "Whites" bottomed out at Day 5 and have increased steadily. "Reds" have maintained at about 3.5. Platelets got down to 10 before bouncing upwards.

I have lost taste for almost every kind of food, so that is difficult. Not much energy now.

You are about where I was at day12. About that time I had enough energy to walk a mile and a half, not nearly as much as pre transplant. Eating and taste were problems for about a month. I lost 18 pounds to less than I weighed in high school. They are not concerned. Barring relapse or GVHD the worst is behind you.

I am at day 55. They are pleased with my progress my numbers improving but are not consistently in range. They are talking about letting me go home at day 80. Energy level very slowly improving with ups and downs. Some of the energy drinks taste better than others so try a different ones to find one you can drink. Exercise is important. I do some every day.

Ray

bailie Wed Sep 10, 2014 09:21 AM

Well, it is Day 26 and I'm feeling fine. Taste is maintaining. It helped when I did a major scraping of my tongue. I am eating fine. Numbers (whites, reds and platelets) close to normal range. Energy level is good. Getting daily drips of magnesium at home. Naturally since this is not a linear recovery the future is hard to predict, but hoping for the uneventful.

johnwc Wed Sep 10, 2014 10:04 PM

Dude, you thrill me every time you post and especially when the news is good. Yes, expect a rocky road but I think you are doing great.

JOHN

Cheryl C Thu Sep 11, 2014 06:17 AM

Your path results look great Baillie. I'm sure your positive attitude is contributing to your success. Well done!

bailie Thu Sep 18, 2014 10:12 PM

Day 30 bone marrow biopsy showed 100 percent donor which doctor thought was great. Whites at 7.26, neutrophils at 4.7, reds at 3.73 and platelets at 205. Long way to go and waiting for GVHD. Feeling pretty good except when they load me up on magnesium.

Whizbang Thu Sep 18, 2014 11:39 PM

GVHD, we don't need no stinkin' GVHD....!

bailie, glad to hear that things are looking (really) good...

Hope everything continues in the right direction...

WBC 0.7 & ANC 0.1 for me, will be going home soon... for another 10/31 transplant...

All the Best, and may God Bless!!!

amyangel Fri Sep 19, 2014 12:13 AM

bailie,
We are following right behind you Oct 1 2014 starts Chemo 7th day BMT prayers to you bailie...

God bless all of you new friends
Sue and Amy

bailie Tue Oct 7, 2014 10:05 PM

I am at Day 53 and everything seems fine. Blood counts almost all normal with platelets steady at 190 and 100 percent donor. Just got the gene mutation report from last BMB (Day +30) and I am clear of any mutations. Sense of taste has returned. No GVHD so far. I realize it is still very early and many things can/will happen later, but I'm giving it my best. It has been an interesting experience.

Cheryl C Wed Oct 8, 2014 05:22 AM

Great news again, Baillie! Love your attitude.


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