SCT Wisdom at the Midnight Hour

[SarahSmile]

OK. I go in tomorrow morning for my rescheduled SCT (I'm a week behind because of some sort of short-lived bug which might or might not have actually been allergy-related. Better safe than sorry, right? )

So here's my request: I'm getting "nervouser" and nervouser ....but still that ticking clock remains! Actually, I'm kidding. I really am OK, I'm just looking for some wisdom from the veterans who've travelled this road before me. What'ya say, SCT vets.....any wisdom to impart to an SCT newbie? This will help all the SCT newbies to follow, so please pipe up!

For specifics on my high dose regimen, please see below. Anything you contribute here would help not just me but all the folks who will, unfortunately, follow me.

I know I'm pretty much guaranteed a nasty bout of mucositis as a result of the esophageal strictures and scar tissue I've got as a result of a childhood lye poisoning; anyone with any mucositis-related issues is invited to sound in!

That aside, any and all tips and counsel are wholeheartedly welcome and mightily appreciated!

Take care, everybody, and please feel free to contribute to the Relapse 101 thread because you'd be doing this group such a great service. I'm working hard to demystify the SCT process!

[RayNat]

in addition to the original one for Brian (at the bottom)...

Busulfan is not too bad so I'd say count on feeling pretty good until it starts getting to you (in 4 days). I read the book Kim (izzydoesit) recommended and after hearing the advice from so many other survivors and those in the business I pretty much avoided all sugar, salt and caffeine(did honey instead). I also skipped dairy for the most part. And then from day -6 I stopped eating -- nothing appealed and I had major nausea so it was easier to stop.
Did you get a dental check and cleaning before? They say to never chew on ice (high risk to damage your teeth).
Really, you don't need to bring much when you are there - I had Internet just outside my door, TV with VCR and free movies from the volunteers, just bring cell phone and music/books if you like. I didn't use the hospital gowns - just made sure to wear 2 piece easy catheter access garments with no metals in case they need to X-ray or whatever. I did bring rubber slippers for the shower and used my slide in shoes around the room and the hospital.
Oh ... one little funny nugget -- when I was very nauseous and sick of being sick it really helped to wear a nice perfume (like Chanel 19 or the new Burberry's) - somehow it made me think I am again healthy and beautiful and not nauseous I also had a little mint roll on for tension and headache relief (and it also helped with nausea).
I brought my meds with me but didn't use any since my nurses wanted to monitor and track everything I took ... and they were pronto on getting the drugs I needed.
Finally, if you experience any reactions to any of the drugs - chances are, they are pushing it too fast. Even platelets caused me chills, and VANC caused me red man syndrome (rashes all over) so if you want to avoid just ask to slow down any antibiotic or narcotic they give.

These are just practical suggestions and very subjective -- your spirits are as high as they can be -- you are ready ready emotionally so I hope you just sail smoothly and quickly. Good luck!


-- get up, let nurses do your bed, get dressed and walk at least a mile each day - avoid being lazy as it drags you down; may be ask to see a physical therapist - they can give you a quick program to do every day to not loose muscle mass.
-- listen to your body; nurses are ready to load you with meds but they all have some kind of side effects so it's a vicious circle - the more you take the more you need and it never ends thus you stay longer in the hospital; I found less drugs was better for me - I preferred to be aware and awake and in control.
-- Do the salt and soda not every 2 hours as they suggest but every 30-40 mins as the folks here say -- it really helps better than anything else. Brush after every meal. What protocol will you be on? Malphalan kills the mouth and the throat. My nurses suggested I sucked on ice 30 mins prior to Malphalan and during and 20 mins after to protect the mouth. I think it helped.
-- Zofran is great (for nausea) but you may need some extra as you progress -- Ativan was great as it did multiple things (helps with sleep, tummy is peaceful, emotions are good and nausea is down)
-- don't eat too much at once, or don't eat at all (all pros: no diarrhea, no vomiting, loose weight etc); keep up with proteins, dairy is not the best choice.
-- stay positive - consider it your chemo resort and a get away from the world - read, sleep, watch movies - relax; too much company can easily tire out... after all, it will fly by before you know it. And it's once in a life time lucky ticket

[Moondoggie22]

One random thought - load up on candy. But when I say "candy," I mean candy candy. Like Skittles, Starbursts and the like. I guess you'd say fruity kinds of candy. For me, that was the only thing I could taste on the really bad tastebud days. And if you're a Coke fiend like me (the red and white kind, not the white powdery kind), you'll have to stay off for a bit and wean yourself back on when the taste starts to come back. For me, I started with fountain Coke or bottled Coke poured over ice. Pepsi was a good substitute too, due to the sweet sugary taste. I've only recently gotten brave enough to try Coke right out of the can, and it's finally tasting normal again. Yay!

[MaryIN]

Okay, gal. Time to cowboy up. Your inner goddess will carry you through this with strength, courage, grace and aplomb. I'm certain the SCT staff will have a new favorite patient starting today. :-)

Giant hugs and all good thoughts,

Love you - Mary

[thislifeiluv]

Sara,
I'm from the other side of the board, but I wanted you to know that I'm thinking about you. My husband is at Day+61 of an auto transplant and he's really coming around. The first 30 days were the toughest (just like they said), but the daily walks were the best thing. Even now, activity is the best way to get his appetite reved up.

I like to note, mostly for the caregivers out there, that MAJOR neutropenic precautions are essential when you come home. I call it "Cootie Watch", and I fully accept the fact that I've been known to go overboard.
Here are my top 5:
A new pillow
Change the cases every day and the sheets every other day
Follow a low-bac diet (even before your counts drop)
Disposables wherever possible (everything else in the dishwasher)
Clorox wipes in every room and everyone uses them befroe they leave the room. Don't leave it to the patient, they're too tired!

I'll be thinking of you,
ghio

[Bennie]

Sarah good luck, I know you will do fine. Here are my pearls of wisdom.

1. First of all it is not going to be as bad as you think it will be. I had nightmares about the sct. Don't get me wrong it was bad, but not that bad.
2. The week after you finish your chemo is the worst. I felt so sick. I didn't eat for 6 days. The doctor who was in charge for the time I was there, said don't worry about eating. The only thing I can tell you, is just get through it the best that you can. I have no secrets that made it better, I just took every day as it came.
3. Get up and walk around. Get out of the room. Just walk around the floor 3 or four times. This will help you greatly.
4. When you can eat don't eat too much, It will make you sick later.
5. Get in a routine. Do the same thing day after day. I always got up at 7:00am ate breafast watched t.v.etc.
6. Bring a calendar to mark the days off.
7. Make sure you take care of your mouth. One of the main reasons I could not eat, was I developed terrible mouth sores from the Melphalin. I had BEAM.

You will get through this. Count on being in the hospital 3 weeks. Don't rush trying to leave, because you don't want to have to come back to the hospital because you left early. Sarah I will be praying for you.

I was thinking the other day. Those of us who relapsed are in a special group. We have survived cancer twice. I said to myself that is something to be proud of. If we can get through cancer twice we can do anything. Take care
Bennie

[ag2006]

Sarah, I made it to +106 days and I am feeling great in spite of some minor setbacks which I got through. I had many good days too and overall, it was not as bad or a traumatic experience as I thought it would be. It was doable, plus I had a great medical team that took good care of me.

ONE thing I did not do enough was walk when I was hospitalized. I did a few laps but not every day and it is so important to keep the circulation going. Because of an engraftment infection I got during the SCT, it slowed me down, but it's important to try to make that effort of walking. If you're too ill, don't do it, but if you have the tiniest bit of strength, do it because those 3 weeks in the hospital, you will need to rebuild your strength from being in bed all day.

On days I could eat, I ate the basic low bacteria nutritious diet. On days I could <u>not</u> eat, I had the TPN hooked up to me. I do <u>not</u> recommend eating a lot of sugary stuff because cancer cells just love sugar. The taste buds will take some time to return as you know from previous chemos. What helped me are ice chips and sugar-free popsicles.

What also got me through the SCT was putting my mind off of it by watching comedies on DVD and listening to inspirational music and audio books. Having my room decorated to make it look more like a home environment made it bearable because 3 weeks is much too long to be away from home and it kept my sanity.

Overall, each day was different. Some days were good and some days were tougher. On those tough days, I asked for pain relievers and sleeping pills. On good days, I ate nutritious meals in spite of not being able to taste and on bad days, I asked for the TPN. Drink lots of water to flush all the toxins out. Do your mouthcare, too. Also, sooner or later, you may need a portable commode next to your bed. I had mine only at night.

Sarah, hang in there. YOU can do this. Think POSITIVE thoughts and listen to those guided visualizations CDs.

God Bless,

Anne

[MaryIN]

Where is Anne-Marie with the "do the drugs" post? ;-)

[Sandy_T]

Sarah,
I'm not sure that I have anything new to add, except that since you'll be attached 24/7 to an IV pole - and pumped full of fluids, you may want to ask for the lovely port-a-potty to be placed by your bed. I had a heck of a time getting to the bathroom sometimes...

Oh, and I remember the doctor at some point recommending that I not try to eat (this was once the chemo side effects kicked in). It was good advice, and it was even better when I didn't have to smell the hospital food!

I'm prayin' for ya!!!

-Sandy

[izzydoesit]

Sarah,

No wisdom from me, just all the encouragement a gal could need going into battle. Think of yourself as Dorothy in The Wizard of Oz and your cheering team as the Tinman, the Scarecrow, and the Cowardly--scratch that!--Courageous Lion (as he was in the end :-).

Go kick some SCT ass, Sistah--if there's anyone who can do it, it's YOU!

Hugs,

Kim