SCT Alumni

[jeannetta]

So tell me.. when does it get REALLY bad? I am Day -4 so I know it is coming for me. Just trying to get prepared... I have got TONS of tips from you guys.. anymore last minute stuff you want to throw in for me for this stage (or the future stages) of the game.

THANK GOODNESS FOR THIS WEBSITE & FOR ALL OF YOU!!! THANK YOU THANK YOU THANK YOU!!!!

[Michael]

Jeannetta, here's a prayer that things do not get REALLY bad for you. God will give you all the strength you need to get thru this. I hope you are able to keep any anxiety at bay..........
Wishing the best for you.

[ag2006]

Jeanetta, in my personal experience, things got a little challenging during the middle of ICE treatment when my counts were dangerously low and I was hospitalized for fever and infection. After the SCT transplant, I would say it was about +4 or +5 days which were difficult for me due to an engraftment infection. The SCT process is a delicate one because it could take up to one year before our immune system returns to normal and we need to be careful and stay away from ill people as much as humanly possible. (My family got both their flu and pneumonia shots).

Many SCT patients get SCT/chemo related pneumonia and there are other side effects which you may or may not get. Everyone is different and will respond differently. You may be the one who can breeze through this. I think what you should look out for is fever as it can be sign of an infection. Perhaps other SCT alumnis can chip in.

I wish you well and I am impressed by your bravery in doing this at home. I am a big baby and required 24/7 attention so I was glad to be hospitalized. You go girl!

Best Wishes,

Anne

[jeannetta]

Thanks for the replies. My family also got flu shots but I am going to have them check into the pneumonia shots. I also had a flu shot. Believe me, I ask everyday if a bed is still available for me if I feel like I need it. lol So far, so good, though. I am really enjoying doing this part (the BEAM chemo) outpatient but I am going to ask for a bed immediately if I ever feel like I need one.. or of course, if I do get sick.

I would like to hear from more SCTers about when it got really hard for them. I didn't have to do ICE so I guess that is a good thing.

[1speeder]

Jeannetta,

This applies to anyone doing high dose or reduced intensity chemo prior to transplant or not. Be vigilant about neutropenia precautions. You are right in flu season and keep in mind that even if you weren't, people around you are carrying bacteria and viruses that your non-existent immune system will not be able to deal with on its own. Take your temperature often if your nurses don't do it automatically (they should). A fever of 101º or more is serious and should be reported immediately. Wash your hands often. Wear a heavy-duty 3M N95 type mask (or equivalent) in the presence of others. Require people around you to wear face masks. Don't go near children under 12. And remember to smile every day because life is good!

[AMD45]

DRUGS DRUGS DRUGS! Don't be afraid to ask for them and they can make it so you don't even remember the worst of. That is my #1 recommendation -- induced amnesia.

[AMD45]

Keep rinsing and hopefully your throat won't get any worse than it is now. I was fanatical about it and was very lucky and didn't get mouth sores at all. Getting your stem cells is really going to be anti-climactic compared to the rest of your SCT -- it's a blip in the timeline of the whole SCT.

I was going through the stations on my radio and happened to hear that song. The lyrics were so on the mark for how I feel about this whole HD experience. People often ask me "how do you do this?" and my answer is always the same "what else and I going to do -- you just have to go through it and get to the other side."

[SarahSmile]

For me, the worst were the 2 days I got cytoxan (I don't think you're getting that in your high dose) and Days 4-9 I think. It's kind of a blur, but there was a little lag between the transplant and when I really got slammed. Gotta be honest, it still sucked after the worst, but on the bright side, the worst didn't last forever.

I love it when Anne-Marie gives the "Do the drugs" speech! Just say YES! Seriously, I went into it not intending to be a hero or a martyr and totally open to playing it by ear, but I also didn't want to just "check out" if I didn't have to and leave my partner Lorraine to be witness to it and deal with all of it alone. I wanted to be present for the experience and able to support her to the extent that I wasn't suffering too much, you know? I ended up losing the cytoxan days because of the high dose morphine/ativan combo -- the pain was pretty bad. Later on when I had a lot of pain again (lots of mucositis in my GI tract was the worst for me so I had a lot of abdominal pain) I opted to forgo the ativan during the day and just kept self-dosing with morphine, then I'd get knocked out at night so I could sleep.

As for the oral and esophageal mucositis (sores/lesions) I too was religious about the mouth care (I rinsed at least 30-40 times a day) and I still got them, which my onc said wasn't that uncommon -- he said that some folks just aren't going to avoid them no matter what they do. I say that just so you don't feel bad if you end up with them despite your best efforts -- I was disappointed and confused when I still had them when I'd expected not to if I was proactive and good! That said, because I WAS so good about my mouth care, my mouth wasn't NEARLY as bad as those of some of the other folks I met there who didn't do all I did. So do the mouth care! Just know that the other areas are just totally NOT under your control, and they WILL need to slough off -- it's inevitable: your esophagus, your GI tract, and your urinary tract.

Also, once they start you on the high dose antibiotics, keep your eye out for signs of candida on your body. I have had an awful yeast infection (and it's in different parts of my body, wherever skin folds over skin, like under the breasts, under the arms, etc.) for over a month now. I have open, peeling sores that we're having a hard time getting rid of. The antibiotics can clean out all of your body's flora, and if that happens, candida can result. Sorry, don't mean to scare you -- just want you to keep an eye out, because I didn't catch the early signs in the hospital and by the time I was aware I had a problem it had become really hard to control. I was told today that I'm probably going to be dealing with this for a few months.

Just keep reminding yourself that THIS IS ALL TEMPORARY. And COUNT DOWN THE DAYS! Every night before going to bed, I'd write on the dry erase board in my room the next day's number, so I felt like I was always another step closer to my goal.

You are strong and positive and loved, and you will get through this and move on steadily. You're already kicking ass, Jeannetta....just keep doing what you're doing and keep up your wonderful attitude, and you're going to do just fine.

We're all here for you and holding you up in our thoughts and prayers.

Love,

[robli]

Hey Hon,
My worst day was actually day -1, my cytoxin day. Cytoxin reeaalllyyy didn't like me. I remember asking one of my nurses if it was going to get worse after my counts dropped and she told me it would. I was pretty nervous about what was to come and even though it wasn't pleasant, the after was not as bad as the cytoxin. You're not getting the cytoxin (right?) so you don't have to think about that. Afterward, if I can remember right, it was worst around +3 - +8 or so. I asked for all the nausea and pain meds whether I needed them or not...I didn't wait for it to start. I'm with Anne-Marie on the drug thing. Just remember to take it day by day. You just might suprise yourself. Oh yeah, don't forget that you are a BAD ASS CHICK!

Love ya!

[SarahSmile]

Robin I hear you on the Cytoxin thing -- that stuff was EVIL! I had 2 days of it! Those were the days where I just said, "Just knock me out and wake me up when it's over."

I hear it works though!