SCT Mid Sept 2010 [Archive]

Flamingo Jim

Wed Sep 8, 2010, 10:45 PM

Greetings all, I am preliminarily scheduled to start the Stem Cell Transplant process around Sept 15 at Barnes Siteman Center in St Louis. Wondering if anybody on this forum has been treated there and advice on what to bring for hospital stay beside the usual stuff recommended.

squirrellypoo

Thu Sep 9, 2010, 08:17 AM

Congratulations, Jim! I don't know anything about that center so I can't comment, but I'll be thinking about you. It sounds like you might be undergoing your conditioning regime while I'm at the altar! Have you got details on what conditioning you'll be having?

And learn from my experience - don't get too hung up on the day they tell you because you can get delays and date changes right up until the second you're admitted (I had one change the day before and then another the night before).

There's a thread here on what to pack (http://forums.marrowforums.org/showthread.php?t=1590) which might help you.

Have you got any other questions? There are several of us who had our transplants last year (and unfortunately Vera isn't with us anymore, but her thread is still very helpful).

Flamingo Jim

Thu Sep 9, 2010, 02:25 PM

You are psychic, my date has changed already to Sept 21.

I am all checked out ready to go. My brother is getting final tests Friday..we were waiting for insurance approval.

As far a chemo regime when I am admitted, I know it is two more powerful drugs for up to eight days before the actual transplant. I will lose my hair.

When I was first diagnosed, I was on Decitibine for a week..but once they found a match they stopped the rest of those treatments. Right now, all I am getting is blood or platelets once a week.

crpa

Thu Sep 9, 2010, 03:42 PM

Hi:
Just writing to wish you good luck on your SCT.
My husband is in his last days of hospital stay for a sct mud donor, he was diagonosed in Feb, 10.
He is doing well with most counts now up ,we are waiting for his wbc to come up more so he can be released.

During his hospital stay he enjoyed his own brands of toothpaste, good reading materials, dvds and a laptop commuter is helpful in passing the time.
Very comfortable lounge pants and shirts.
I brought along a brand new comfortable throw that was his favorite thing while resting, bring items to make it more like home.
Keep in mine new unopened due to the germ factor, each hospital is different
in what they allow, so it is best to ask.

Best wishes for a quick recovery.
Christine

Laura

Thu Sep 9, 2010, 05:04 PM

I echo Melissa's post.

If you read threw some of the other posts you will find very useful information.

Best of luck and keep us updated.

Laura

Debbie W

Thu Sep 9, 2010, 05:37 PM

Good luck and keep us posted, my husband is scheduled for 9/21 as well.

Best wishes,
Debbie

Flamingo Jim

Thu Sep 9, 2010, 10:06 PM

Thanks for ideas. Is it better to bring in "old" clothes that has been laundered multiple times or buy new things, from a germ/infection factor?

Laura

Thu Sep 9, 2010, 10:56 PM

I am assuming that if the clothes are washed and clean then they should be fine. Because even if you buy new clothes they will still have germs on them from the store and people touching them and trying them on. Your germs on your own clothes are probably safer then other people's germs on new clothes.

Laura

Flamingo Jim

Mon Sep 13, 2010, 05:16 PM

flyguy

Mon Sep 13, 2010, 07:46 PM

Thanks for ideas. Is it better to bring in "old" clothes that has been laundered multiple times or buy new things, from a germ/infection factor?

Hi Jim,
Good luck with the SCT. I know you are anxious but am so glad you have a sibling match. Re clothing, I spent 12 days getting ATG last year and went thru the same questions re clothing. I went to K Mart or Target and got sweat pants and shirts and it worked very well. I got the shirt a bit large and could pull it down for access to the port and could lounge, sleep, and walk the halls with the same outfit. I agree that I'd wash them well before wearing them though. I'd also recommend sandals so you can get up when you need without finding sox to wear.
Best of luck!

Flyguy AKA Ron

Laura

Mon Sep 13, 2010, 09:52 PM

Thanks for the info, looks like I should get some more warm, front opening shirts :p

Is there a page on the forums that has an explanation of all the abbreviations, especially the ones people use in their signatures?

Not sure about that. But which abbreviations are you wondering about? Maybe I can help out?

Laura

Laura

Mon Sep 13, 2010, 09:53 PM

I echo the comfy clothes. I brought lounge pants and tshirts. Much more comfortable than the huge hospital gown!

Laura

Flamingo Jim

Fri Sep 17, 2010, 10:32 PM

Neil Cuadra

Sat Sep 18, 2010, 04:41 PM

Jim,

When patients are just home from the hospital after a transplant, they might want to have other people around as much as possible, "just in case", but it's not always necessary. What I think is important is that you have a way to get to your doctor's appointments when you don't think you can drive yourself. You can call an ambulance for a real emergency (probably unlikely) but it would be reassuring to have somebody you could count on to help you with routine transportation.

Flamingo Jim

Sat Sep 18, 2010, 09:27 PM

Laura

Sat Sep 18, 2010, 10:37 PM

For my transplant my center would not allow me to be alone. If they knew I was alone they would admit me until I would have a caregiver with me 24/7. Thankfully my husband is a teacher and has summers off so it worked okay for us. But honestly, I feel as if there were moments that I could have been alone and okay for a little bit. The funny thing though, is the one time I was by myself (my husband had an apt at the clinic), they called and said I had positive blood cultures and needed to come ASAP to the clinic. Of course I had to tell them I was alone and had to wait until my husband came home. They were not too happy :) Oh well.

I think as long as you are feeling good you should be okay by yourself. It is nice to have someone around to help you with things if you don't feel good or are not strong enough. But if you feel okay, there is no reason to have someone with you.

Like was said, for an emergency there is always 911.

Laura

Neil Cuadra

Sun Sep 19, 2010, 03:03 AM

I definitely have people that can take me for appointments, that is not a problem. I was more wondering how much I can do for myself in my house...people are worried I need someone around all the time. From what I understand from talking to some people who have gone thru process is that I will be able to get around my house, cook some simple things, etc while my caregiver is out working.
You may be rather tired, so it's not as easy as you might think to manage everything yourself. The key is to do what's necessary (like getting proper food and rest) and not worry about things that can wait. If the house is messy, so be it.

If friends offer to help, take them up on their offer and let them help. Let them cook for you or bring you meals, for example. That's what we did and it helped, and they felt better that they could do something for us.

flyguy

Tue Sep 21, 2010, 11:51 AM

Thanks for the advice. My hospital admission date is Sept 22. Another question, I am single and normally live alone. When I get out of hospital, will I need someone with me 24/7? My girlfriend will be with me a lot, but she has to work during the day. I have other options, like staying with family or having someone stay with me, but curious how independent I can be for first few weeks post-SCT. Any thoughts?
Hi Jim,
I am afraid I can't give you first hand advise but one of the ladies in my Wellness center had a SCT this year and she definitely needed her husband's help. Some things you don't think about that she used him to do was open doors for her and answer the telephone so she didn't get contaminated. I'm sure you will be on immune suppressant therapy and I can definitely tell you that they wipe you out (in addition to SCT). I'd line up the help you can get and cancel if you don't need it. Wish you the best of luck and hope all goes wonderful for you.
Ron AKA Flyguy

Flamingo Jim

Tue Sep 21, 2010, 12:26 PM

Thanks for the advice! I guess each case is different. I have talked to some people who were alone a lot of times during day because spouse had to work and others who basically had 24/7 caregiver. Bottom line is work with my coordinator on post recovery scheduling.

Flamingo Jim

Mon Sep 27, 2010, 05:42 PM

I am in the hospital on day -3 going through conditioning regimens. Bulsafan up to this point and today first of two treatment of cytoxan. I have had no side effects other than loss of appetite and a slight burning/runny nose right after getting cytoxan. My brother is getting his shots in preparation for his donation on Thursday.

So far, the biggest issue has been boredom and lack of sleep...let's keep it that way :D

mausmish

Mon Sep 27, 2010, 06:35 PM

Sounds great so far, Jim! Hope everything continues to go well for you.

Laura

Mon Sep 27, 2010, 09:40 PM

Jim,
Glad to hear things are going well for you. Thinking of you.
Laura

starz

Tue Sep 28, 2010, 05:51 AM

Hi Jim,
I wish you a very boring transplant. Boring is best.
Gem

Flamingo Jim

Wed Sep 29, 2010, 12:53 PM

Chemo done, I am on my rest day now, day -1. Last day of chemo was the worse, but only nausea and general run down feeling.

Flamingo Jim

Mon Oct 4, 2010, 02:29 PM

On Day +4 with not too many issues. My appetite has been spotted, but I have been using the exercise bike and walking around hospital floor. My White and ANC counts are way down but not really causing any problems for me. Mainly it is boring...hope to keep it that way :p

mausmish

Mon Oct 4, 2010, 05:15 PM

That's very good news, Jim. Hope you continue do do well!

Debbie W

Sun Oct 17, 2010, 01:24 PM

Great news on your release!

Best regards,
Debbie

Flamingo Jim

Sun Oct 17, 2010, 04:37 PM

Thanks, my doctor said I "cruised" thru it with little complications. My WBC jumped from .7 to 7.4 over my last 4 days. I had not been above 2.5 for many months. Now at home for recovery :)

Debbie W

Mon Oct 18, 2010, 11:04 PM

My husband is doing the same, his diet is still very limited, but hopefully that will increase in the next week or so. He had his first follow up visit today after being discharged on Friday, doc says all going according to schedule. They'll recheck him on Thursday and then again the following Tuesday. Neupogen worked well for him after induction therapy and then again this time.

Debbie

Flamingo Jim

Tue Nov 2, 2010, 12:27 PM

I am coming along with no major issues so far as of day +33. WBC 4.2, ANC 2.2, Platelets 100, HG 11.8, HT 32.7 :)

Bone Marrow Biopsy scheduled for Nov 12.

squirrellypoo

Tue Nov 2, 2010, 01:20 PM

Great news, Jim! Keep it up. :)

launch

Tue Nov 2, 2010, 09:38 PM

Congrats Jim! I'm very very happy for you!!!! keep it up!

Hugs, Cindy

Flamingo Jim

Sat Nov 20, 2010, 05:33 PM

BMB showed that I am "completely" donor cells. Now, doctor did say medically speaking "completely" means 95% or greater, but whatever, things are looking good. Still no major issues, no graft vs host, still waiting for hair to start growing more, just a lot of fuzz/stubble on top but more in back of head. I am at day +51 now :cool:

Susan L

Sun Nov 21, 2010, 09:53 AM

That is great that you are doing so good. Have a Happy Thanksgiving - it really is a thankful one for you!! Take care

mausmish

Sun Nov 21, 2010, 10:30 AM

Happy Thanksgiving, Jim! Super that you're doing so well!

Flamingo Jim

Wed Nov 24, 2010, 04:02 PM

There was an interesting show on PBS Frontline about end of life health care. You can watch the video online, seems like most of the patients and doctors from this story were on the Bone Marrow Transplant Unit.

http://www.pbs.org/wgbh/pages/frontline/facing-death/

Now remember, this show is about very serious end of life health care issues, not a story about Stem Cell Transplants. It just happens all the people involved have had Stem Cell Transplants as treatment to aggressive disease.

cathybee1

Thu Nov 25, 2010, 11:14 PM

Thank you for the link. It was a rather discouraging piece, all in all, though it raised some very important issues, and the commitment of the doctors involved was evident.

Flamingo Jim

Sun Jan 9, 2011, 11:20 PM

Just a little update. I am just past day 100 and have not had any complications to speak of - No GVHD, no infections, no post transplant admissions to hospital - and my two Bone Marrow Biopsy's since transplant have been clear.

Plan right now is to return to work on Feb 1, 2011 (I am computer guy, so I also have ability to work from home if fatigue becomes an issue).

Question for those who have gone through day 100 to day 365...what kinds of restrictions did you continue to follow?

squirrellypoo

Mon Jan 10, 2011, 05:34 AM

Congratulations, Jim! That's great news!! Let's hope this keeps up, you're the model patient!

Let's see, thinking back to post-100:
- I still kept away from public transport at busy times (so no crowded tube trains or buses at rush hour)
- If someone in my small office was ill, either they worked from home or I would (I'm in IT, too)
- I kept away from small kids as much as possible, and DEFINITELY not if they'd just had vaccines or chicken pox (we had a 3 week quarantine period to observe before we could visit friends whose kids had just had chicken pox!)
- I still couldn't eat sushi or raw egg products

Hmm, I'm trying to think of what else, but mostly I remember that period as a whirlwind of hospital visits every single day without much else, but slowly returning to the outside world - I remember we celebrated my Day 100 with lunch in a nearby restaurant, and that was the first I'd been in public that wasn't the hospital!

tserdogan

Mon Jan 10, 2011, 08:49 AM

That is very good Flamingo Jim.
Returning to work is very important.İ suppose risks are minimum for you at home.
We have still infection risks,so you take care yourself at the moment at outside.i waited 12 months for working and i still work parttime.

I advise you dont cut your contact with your transplant team.

Flamingo Jim

Tue Jan 11, 2011, 01:32 PM

Definitely will be working with my transplant team for quite a while still. Right now I see the doctor twice a month and have labs once a week (still have central line in, hopefully get that out this month).

I have been out and about at restaurants and stores (usually go when it's not busy) and walking around park when weather is ok.

How about springtime things like gardening, mowing lawn, and bike riding/hiking? What are your thoughts for things like that? By then, I should be around day +170.

mausmish

Tue Jan 11, 2011, 03:35 PM

Congratulations on passing your 100 day milestone, Jim. That's fantastic news, and it's great to hear you're enjoying life.

Marlene

Tue Jan 11, 2011, 04:02 PM

Great news!!!! It's good to see you planning for the spring. Regarding the yard work and gardening. I would proceed with caution when working with dirt because of potential molds. Mulch, leaves and dirt can have high levels of mold and I would stay away from that for the first year if you can. You can always wear your mask but breathing gets difficult.

I have also stopped using chemicals on the lawn. If you use them, have someone else apply them.

Flamingo Jim

Fri Jan 14, 2011, 04:23 PM

I may have jinxed myself a few posts earlier by saying I had no problems. My liver enzymes started rising and looks like I have liver related GVHD. They put me on prednisone. The transplant team is not worried, they say this is a common complication.

Anybody have any thoughts on being on Prednisone (40g Daily)? I know it is a rather powerful steroid and you have to be weened off it once the regimen is done.

tserdogan

Sat Jan 15, 2011, 04:34 AM

Prednol is needed for decreasing the liver enzymes.i use prednol 4 mg also but now 15 months from transpant.i remember high dose prednol using get some side effects like moon face,to get fat at upper body,musle weakness and be care of your diabets.i advice you measure your diabet score.i had some diabet problem when i use 32 mg nearly for three months.
Do not afraid prednol but take extra care.When prednol dosage decrease to 8 mg everything is come back to normal.

riccd2001

Sat Jan 15, 2011, 04:58 PM

My taper-off rate was down 5 mg per week when it was down to 50 mg and that was OK for me. But my initial dose of Prednisone was quite a bit higher than yours.

Flamingo Jim

Tue Jan 25, 2011, 05:15 PM

The latest is they bumped my Prednisone up to 120mg/day. I have been on that higher dosage for about a week and my ALT (>1300) and AST (>245) liver enzymes are still high but Billirubin is very low (.5). I have not had any side effects to Prednisone other than a very slight dry mouth.

Doctor is now putting me on 2000mg/day Mycophenolate (CellCept) in addition to Prednisone.

Has anybody gone through that similar combination?

As I mentioned earlier, other than these liver test I feel great. The high liver counts don't seem to be bothering me :confused:

Mary4Mike

Thu Feb 3, 2011, 08:51 PM

My husband's transplant was exactly one year prior to yours. He experienced elevated liver enzymes also. They did a liver biopsy because they suspected his was due to elevated iron. He had had over 140 units of packed red blood cells prior to transplant for his MDS symptoms. This turned out to be the case so they began phlebotomy once a month. His HGB was over 16 so they went for it. They said that they don't usually do phlebotomy on a transplant patient until one year out, but his counts were good and they really wanted to get the enzymes down. His enzyme levels are normal now, but he is still doing phlebotomy to bring his ferritin levels down further. They never ordered steroids for him.

You asked about what you should or should not do. I guess it is common sense; what you feel you can do, and if in doubt, ask your doctor or transplant team. I don't know how your center is set up, but our doctor is an email away with almost immediate responses. I believe the sooner you can return to normal life the better your revovery. Mike attended Christmas Eve service at our church and in January of 10 began attending Sunday services again. He was just careful about shaking hands, etc. We always carry hand sanitizer.

I am sure that it is the same with most transplant patients....Mike says he has a feeling of well being now. It has all been worth it.

All the best to you and we are here if you have anymore questions!

Mary

Lori Patrick

Fri Feb 4, 2011, 07:12 AM

Jim, I am Day +24! Hard to believe!

I had some kidney issues that is being dealt with well with my fluid intake. Yesterday my labs showed some fluxuation with my liver, however he is not concerned at the moment. The staff mentioned prednisone to a lady who has liver issues. Probably pretty common treatment.

Hey, maybe it will help fertilize your scalp? lol I don't think I lost hardly any hair this time.

Hang in there and keep us informed. Blessings to you. Lori

Flamingo Jim

Sat Feb 5, 2011, 05:39 PM

So far, I am doing pretty good on the liver problems. My ALT is now below 900, another lab next week. I post the lab results online at my blog:

http://jimschmitz.wordpress.com/about/

Hope things keep improving, Lori. I am following you on the carebridge site also :)