Transpalnt Date

[Data]

Well, I have a date for my transplant. I am scheduled for pre-transplants tests on Feb 3rd, 4th, and 5th. I have a doctors appointment on Feb 12th and pre-admission (whatever that is) on Feb 15th. I am to be admitted on Feb 16th and start Cytarabine which will continue until Feb 20th. I start Cytoxan on the 21st and that continues till the 22nd. The 23rd is listed as a "day of rest". I have a sneaking suspicion I am going to appreciate that day. The 24th is listed as TBI and transfusion.

Anyone have any comments on these two drugs and the TBI?

Wish all of the folks on the forum the best of luck in their individual battles.


Data

[Neil Cuadra]

Data,

I'm glad they've got everything scheduled for you, and I wish you the best of luck as you head into this major phase of your treatment.

"Pre-admission" may mean an orientation tour, perhaps some paperwork to fill out. I hope they'll give you reading materials with transplant logistics, everything from hospital diets to personal comfort to visitor rules.

Some people sail through TBI and some find it hard to take. Everyone gets symptoms later, since various tissues have been zapped.

Your schedule sounds a lot like the schedule my wife had, including the day of rest before the transplant. I hope your transplant is as effective as hers was, and your recovery is twice as fast!

[bailie]

My "pre-admission" was when I got the three-lumen Neostar. I was apprehensive at first about it, but it really made life easier. I wasn't "poked" for about five months.

I wish you the best for a very successful transplant and recovery. I think you will find that the transplant itself is very uneventful. I slept (10:30 p.m.-2:00 a.m.) through almost all of mine.

[Data]

Neil & Bailie,
Thanks. I appreciate all the comments and encouragement on this forum. It has been a tremendous help in both information and encouragement.

Cheers

Data

[PaulS]

Hi Data - good to have some certainty about the transplant date - I had a low intensity conditioning regime so I can't help with any insights with what you'll be getting - but I think generally they'll want you to use a mouthwash, stay hydrated and eat if you can - also exercise as much as you can tolerate - at least get out of bed and keep moving. You sound in good spirits and ready for the challenge. Stay positive!

All the best,
Paul

[Data]

Paul,
Thanks. I am having Reduced Intensity Conditioning (RIC) also. I was in the hospital for ten days last year with a neutropenic fever and walked the halls as much as possible. I was curious if I will be able to be up and about while I am in for the transplant. It sounds like I will. I can't fathom staying in bed for a month.

Cheers

Data

[bailie]

I have been surprised how differently the experience of the RIC. I was fine (walking 5 miles per day) for the first two days. Then the last two days prior to transplant I was really tired. That stayed the same until I got out of the hospital fourteen days after transplant. Others have sailed right through the RIC.

[PaulS]

I guess what I had would also be called RISC although we used different chemo drugs - what is TBI - I though it was total body irradiation but maybe I'm wrong - I didn't have any radiation...

I was walking the halls through the chemo and I think the transplant - until my neutrophils dropped and i was isolated to the room. After a brief stint in intensive care from an infection I was isolated again on the transplant unit - during that time I was out of bed and trying to move around as much as possible in the small space - when my neutrophils finally rose above 1 they let me out of the room and I was walking the halls again - listening to music through headphones and very excited to be walking - I was up to five miles a day (with Bailie as inspiration) - when they finally let me out after 5 weeks. I was told there were others on the floor who were much more tired and barely got out of bed - sounds like you will be up and about - going for the five mile challenge as soon as possible!

Best,
Paul

[Data]

Paul,
You were correct on Total Body Irradiation (TBI) - at least that is what I thought it meant. I guess the TBI scares me because it can cause cataracts. I am a self admitted geek so I plan to have my laptop with me to pass the time.

Best wishes to you!!

Data

[Cheryl C]

Wow! That's serious news Data. All the very best as you go through the preparatory process and the transplant. Will be watching for news from you.

[DanL]

Data,

I am glad to see that you have a transplant date and conditioning regimen setup. The couple of pieces that I can comment on 1) with the cytoxan, be sure that you are well hydrated the days before and the days after. Cytoxan can cause cysts and bleeding and good hydration going in and for a couple of days after usually takes care of that problem. My doctor gave me more saline, but I did not take any chances and drank all I could stand. As for the exercise and walking, my team would get up and cheer us on when we got out of bed and would walk down the halls. Getting out of bed has several positive side effects starting with limiting depression, but also it helps keep everything in your system moving. I started off walking 3-4 times per day and would walk just until i was starting to get tired as I did not want to be worn out. This method worked well for me until about 5 days after transplant - basically you hit rock bottom when your neutrophil count gets the lowest. When I reached this point I only had the energy to get out of bed 2 times per day - but once I was moving around, it felt really good.

As for cataracts - my understanding is that low levels of radiation - which it looks like you are scheduled for, have low incidences of cataracts. I did not have any radiation but have been on prednisone and hydrocortisone, and have developed cataracts at 42 as a result of these treatments. Cataract surgery isn't that big of a deal from what I have heard and what the doctor has said - I will let you know in early february what the reality is as that is when I am scheduled to have mine removed. . I really do hope this info helps.

Good luck. We are cheering for you from the sidelines.

[Data]

Dan,
Thanks for the advice and information! I think that was excellent information on exercising an staying hydrated. I will definitely remember your advice.

Cheers

Data

[Data]

Cheryl,
Thanks for the encouragement! I plan to take my laptop and will also have my phone so I plan to keep in touch. I don't think I am good about posting but I am going to make a effort to do better.

Cheers


Data

[Neil Cuadra]

Originally Posted by Data

Paul,
You were correct on Total Body Irradiation (TBI) - at least that is what I thought it meant. I guess the TBI scares me because it can cause cataracts. I am a self admitted geek so I plan to have my laptop with me to pass the time.

I wouldn't worry much about cataracts, since they are correctable and lots of people get cataracts even though they haven't had TBI. I don't mean to discount something that worries you, but my wife and I considered the increased incidence to be one of the lesser worries as we headed to transplant. And as it turned out, my wife had 11 TBI treatments and has never developed cataracts.

[Data]

Originally Posted by Neil Cuadra

I wouldn't worry much about cataracts, since they are correctable and lots of people get cataracts even though they haven't had TBI. I don't mean to discount something that worries you, but my wife and I considered the increased incidence to be one of the lesser worries as we headed to transplant. And as it turned out, my wife had 11 TBI treatments and has never developed cataracts.

Neil,
Thanks for the input. I understand that TBI doesn't always cause cataracts but that there is the possibility. When I was treated for prostate cancer with High Dose Rate Brachytherapy (HDR), i.e., radiation, they said there was a small chance it could cause another form of cancer. Two doctors have now told me my MDS was likely caused by the prostate cancer treatment. So I traded one disease for another. I guess I worry about anything that is going to cause problems down the road. I do appreciate your insight, however.

Cheers


Data

[GoodDay5150]

Data, it appears that you're well informed about everything which is good. There are a lot of tests before your admission date. I remember having to take two days off from work because I had so many tests just to make sure that I was able to handle the transplant ordeal. You're probably used to that already! The temporary port that you will get before your transplant does make everything a lot easier and I got used to having mine pretty quickly. My experience was not that bad, but I felt really run-down for a week or two afterwards. I had a reduced intensity regimen w/ both chemo and total body radiation. They will encourage you to move around and that does seem to help. In my instance, I was so anemic for so long that I felt a big difference soon afterwards. I was not getting any blood or treatments before my transplant. Please keep us all posted as to how you are doing and many of us here are also happy to answer any questions.

Good luck

Mario

[Data]

Originally Posted by GoodDay5150

Data, it appears that you're well informed about everything which is good. There are a lot of tests before your admission date. I remember having to take two days off from work because I had so many tests just to make sure that I was able to handle the transplant ordeal. You're probably used to that already! The temporary port that you will get before your transplant does make everything a lot easier and I got used to having mine pretty quickly. My experience was not that bad, but I felt really run-down for a week or two afterwards. I had a reduced intensity regimen w/ both chemo and total body radiation. They will encourage you to move around and that does seem to help. In my instance, I was so anemic for so long that I felt a big difference soon afterwards. I was not getting any blood or treatments before my transplant. Please keep us all posted as to how you are doing and many of us here are also happy to answer any questions.

Good luck

Mario

Mario,
Thanks for the reply. I have three days of tests scheduled in the first week of Feb. I don't know what all they will be - they are just three days blocked out for "tests". I have already had the lung and heart function test and the coordinator said those results were fine. I am retired so it is easier for me to make my appointments but then that means I am probably older which isn't good. My MDS is considered secondary which from what I understand is harder to treat and has less favorable outcomes.

I worry about everything. If I don't have anything to worry about, then I will worry that I missed something. Ha Ha. I am just trying to keep busy until I am admitted.

Thanks again for you insight.

Data

[PaulS]

Hi Data - are you still on schedule for admission tomorrow?
Scary and exiting time -but I know you'll do great - you're in my thoughts - stay strong and positive -
Best,
Paul

[Data]

Originally Posted by PaulS

Hi Data - are you still on schedule for admission tomorrow?
Scary and exiting time -but I know you'll do great - you're in my thoughts - stay strong and positive -
Best,
Paul

Paul,
Thanks for inquiring about me. I am not on schedule for the transplant. The bone scan (that the doctor ordered two days before my pre-admission ate) showed that I had possible (emphasis on possible) metastatic prostate cancer in several places. Now he want me to see another doctor and inevitable more tests. In the discussion today he said given my monosomy 7 and the gene mutations, I had about a 30% chance of cure and if that was successful my median survival time was 3 years. My thoughts are I am going to go through with all this crap to extend my life 3 years when probably one year of it will be fighting GVHD. I am just not sure the benefits outweigh the problems and limited success probabilities. I am considering bailing on the whole process.

Data

[Cheryl C]

Sorry to hear this news, Data. It must be very disappointing for you. My thoughts and prayers are with you as you make these big decisions.

[bailie]

Data, you are recognizing the difficult part of these situations. If only we could see the future to make these decisions. You just never know about GVHD. I have had almost no GVHD while others have had a significant amount. It certainly is a personal and very difficult decision with no right or wrong. I wish you the most comfort as possible while you decide.

[PaulS]

Sorry to hear the news - when will you find out about the bone scan?

GVHD is a scary thing - I think in most cases its manageable or goes away - but we all know its sometimes doesn't - I'm still scared of my relatively mild GVHD never going away or getting worse - and then there is always the fear of relapse... But in my case, I was on a downward spiral and staying the course really wasn't an option - i was slowly dying anyway.

There are so many variables I think its difficult to predict who will be on the better side of the curve - Hopefully you have a doctor you can trust and talk to - or maybe a second opinion would help. Hang in there -
Paul