SCT Roll-Call -- Come on Down!

[SarahSmile]

C'mon SCT'ers, announce yourselves! (OK, so is it just me, or does anyone else actually hear Pomp and Circumstance? )

I'm approaching my own little pocket of SCT hell, and I was wondering who else had been through it. Any pearls of wisdom to impart? Gimme anything you've got -- it's all appreciated. What was your treatment, how did it go, what would you do differently, what worked/didn't work to manage the side effects, what the hell were the side effects anyway...you get the drift.

I'm of course going to research the thing all to death, but some real life experiences beat the heck out of anything I'll read from anyone who hasn't lived it. (Hey, and hats off to the living part!)

Thanks in advance for the help -- and thank you also for paving the way for those of us treading now in your great footsteps. You guys rock!! I'm praying someday to walk in your midst, looking back on this and sharing my perspective with others who find themselves facing the same road. Here's to a day when none of us have to go through it at all.

Love,

Frightened but determined Sarah

[JonP68]

No wisdom. No experience. Just plenty of support, hugs and love for you and your love one....ones! You, Mary, and Anne Mare are my heroes!

You Rock! (JAM insert guitar solo here!)

Jon

[Sherril]

Sarah I am so sorry you have to go through the gauntlet. My transplant was in January for a relapse after 5 years in remission. I had 2 rounds of ICE and then changed to GND when what was thought to be new disease was found in my left lung (I now know it is TB) ICE was pretty harsh. All the side effects were notched up from ABVD. My hair fell out completely within 10 days of starting. GND was much easier to tolerate, hair even started growing back. The transplant itself is a foggy memory. I guess I was pretty sick. I was put on TPN at day 2 of the high dose chemo and pretty much put to sleep for the duration. I remember very little betwwen day 3 and day 19. I would be glad to get more specific for you and answer any questions, just PM me and I'll give you my email address. I will tell you that 6 months after the fact, it all seems like an impossible dream.

[Moondoggie22]

Hey Sarah - welcome to the SCT club. Well, I guess I can't officially welcome you to it yet, since I'm still not quite there. I had an appointment with SuperCoop today and my BEAM chemo starts on 7/6 with the SCT following six days later. So feel free to ask me again when you get through the salvage chemo stuff, 'cause I'll probably be on the other side by that point.

Other side of the SCT, that is - not like, posting from beyond the veil or anything. At least I'd better not be, or SuperCoop is going to have some tough questions to answer.

A word on the ICE if you get that one - drink more fluids than you can stand. The first time we tried as total outpatient and the ifosfamide wreaked holy hell on my bladder. The next time we tried the modified ICE, they kept me in the hospital for a few days so they could force IV fluids upon me and I had no problems that time. That's my best advice for the moment. We'll see what else I come up with in the ensuing weeks.

And back into hiding I go. One more week with my head in the sand! Maybe that's my second piece of advice - the sand is cool and comforting and very hard to hear through. Feel free to stick your head in there too whenever you need to. Well, in your sand, that is. Don't need to be getting Barb and Lorraine all jealous, right? They might not drive us to our appointments otherwise!

[PookiePeck]

I'm sorry to hear that you have to go through SCT. I pray each time that I have scans that that procedure won't be my fate as well. You are a strong, informed woman and I'm sure all will come out for the best. God bless.

[angie62172]

Well, Sarah... I won't lie. It's not easy, it's not fun, and it's not something I ever want to do again. But it is doable!! You have a great support system and that will help you tremendously.

Most of my tx stuff is in my siggy, so I won't repeat it here. Like A-M said in your other post, ICE sucks. Ask for and take whatever mind-numbing, stomach settling drugs you can get. The only thing worse than ICE for me was DHAP. That knocked me on my butt for weeks. It seemed to mess with my mental abilities a lot more than any other chemo too. The good part of it was that it made the high-dose chemo seem tolerable!

Really, once it got to the high-dose chemo stage, things were pretty under control. I did SCT as an outpatient. I think it really helped to keep my spirits up. It sucked having to go to the clinic every single day, but it was soooo nice to sleep in my own bed every night. I had a benadryl/ativan pump during the high-dose chemo that helped a lot with the nausea.

Drink TONS of water. You won't want to, but you need to. Fluids are your friend.

Try to stay as physically active as you can. Again, you won't want to, but the more sedentary you are the harder it is to recuperate.

You mentioned in the other post that you won't have disabiity insurance for this. I didn't have it either. Be sure to talk to the financial counselors and let them know your situation. We were put in contact with so many wonderful organizations that gave us everything from money to prescription assistance to simple comfort items. There are a lot of places that will help you out. Would you qualify for social security disability?? Since I don't pay into SS (I have a private state pension), I didn't qualify, but if you pay SS you should be able to access that.

Please feel free to PM me with any questions that you may have. SCT is a scary thing to think about going through, but it has good results. With all your spunk I'm sure you'll breeze through it with flying colors!!!

Angie

[AMD45]

I will say again what I've said to every question about an SCT: tell your nurses you want to remember as little as possible of the bad part of your SCT. I found that a BMT ward is probably the best place for a drug addict who wants drugs because they'll give you whatever you ask for to make you comfortable. I saw no reason to remember being really sick and I told my nurses the day I checked in. I don't remember 6 days from my second SCT and every time my mom tries to tell me what happened I tell her I don't want to know.

The other thing that I think is really important is to follow the mouth care regimine they give you. I was a fanatic about it because I've lived with cancre sores my whole life and didn't want to suffer what I heard was 10 times worse.

And finally, and this probably sounds strange, but I turned my experience into as much of a social event as I could. Once the chemo was over and I'd gotten my stem cells I started to feel pretty good. I kept my room very cool (hot flashes you know) so it was where the nurses, aides, cleaning folks, all the BMT regulars came to hang out. It kept me occupied, and helped me get through the time in the hospital. It really helped me not feel like a sick person the whole stay in the hospital. Plus, by forging those relationships with the staff, I had people who I could ask to go down to the hospital Starbucks and bring me back a latte .

And walk, walk, walk. I tribute the fact that I was known as "the walker" on BMT ward and that I walked more in that time than I have in the rest of my 46 years to my getting out early from both my SCTs.

[lovelife]

I'm very sorry to hear that you've relapsed and are scheduled for a SCT Sarah. I had mine in January of this year after relapsing after 8 months. In my personal experience it was absolute hell, but as I said to someone the other day, in retrospect I would do it again if I had to (and 6 more times if I thought it would save my life) and while that may not sound like a significant statement now, believe me it is. Basically all I mean by it is that you CAN get through it. My tips:

- try to get a private room if at all possible (my roommate's family and friends were in the room ALL day long - about 10 of them at all times and I couldn't get any rest)
- BRING YOUR OWN FOOD!!!! even now when I think about the hospital food that I ate I get nauseous and gag a wee bit - I just wish I never had to eat boiled haddock while going through an SCT...
- buy lots of brand new jammies! (totally psychological - I just felt like I was stylin' in my Gap Christmas tree jams...)
- as per Anne-Marie, become a drug addict! Morphine is your friend, even if you're not in that much pain...
- ASK the nurses each time they give you a drug whether it causes diarrhea (it's bad enough on its own and then when they give you a drug that causes it on top - learn to run in slippers)
- ah yes, bring very fuzzy slippers & a favourite stuffed animal (yes, I know we're adults but for some reason my stuffed cat brought me comfort in the middle of the night)
- fluids, fluids, fluids, fluids
- as Anne-Marie also says, you will make friends while in the hospital (although they are all difficult to tell apart wearing the same hospital gowns, having the same bald heads and lugging the same intravenous pole around with them - watch those corners!)

And we're all here to listen if you need to vent, complain, yell, snarl, cry, be furiously optimistic, cry again...

Take care,
Maggie

[Sherril]

It is interestimg reading the replies. I was at MA General Hospital in Boston. I had a private, pressure negative room. I went in Day 1 and was not allowed out until Day 19. Anyone who came in had to wear a mask. I was also allowed no outside food...I would have killed for a frapuchino! When your white count is down to zero you don't want to take any chances. It does seem that different hospitals have different protocols.

[JudyK]

Sarah - I am 10 months post SCT and doing pretty OK. I had high dose BEAM. No problems till my cells were returned, actually 2 days later. Mouth sores - AVOID IF POSSIBLE- diarehha - ask for a standing order of immodium. I was barely strong enough to get to the toilet. My taste buds were shot, and I didn't worry about eating cause I was getting so much thru IV's - fluids, blood, etc. On day 12 I was well enought to go home. Since then I have had some high dose chemo related side effects. For 5 months I would vomit for 6 hours every three weeks. My lung capacity was significantly dimished. It will never be the same, but I have learned to adapt. I still need to nap in the afternoon, and my energy level is aroud 60%. My knees and hands are very arthitic. My vision was diminished somewhat, but my new glasses correct that. I had a really nasty case of shingles two weeks after stopping my acyclovir. But the good news is I continue to be NED, so all the whining and pain and inconvenience is well worth it. If I had to make the same decision today i would. Best of luck to you - Judy K