Vidaza

1st day of Vidaza and Decitibane (or something like that) today. It's mainly a Myelodysplastic Syndrome chemo med, but it also used for ppl who are "incurable" without a bone marrow transplant. It was so weird to hear them go from the normal "our goal for you with this chemo is remission" to hearing "our goal for you is transplant, and chemo is supportive care only. You will not be cured by this medication." Got sick once during infusion. They did zofran through the medport before infusion, so that has been the only time I got sick so far. The main side effect right now is fatigue...like the "i can't life my head or hardly blink" fatigue. It started before I left the clinic today, and has gotten progressively worse. Also some pain in my back, but not sure if it's from the neulasta or chemo. Feels different from my normal neulasta pain. They are discussing throwing in a random cytoxan round every few months.

I'm having a real problem with keeping my head up right now. Please pray for me. When I get so tired and sick, it makes things very hard for me to get a hold of. Got to go see my very best friend, his wife and daughter for New Years. I miss them so very much. Coming back to where I live and practically sit in a room alone all day is really bothering me. I may go back there to help with the twins they are about to have. At least there, I can sit in the living room, help with dinner if I'm up to it (and they don't push me if I'm not), just be around them and not feel constantly alone. It's where I feel I need to be, but moving is going to be hard. I have enough to fit in a single car, but it's from Texas to Memphis...and I'm having to sell my car next week to afford treatment.

Just please pray for me. I'm doing 5 days straight of treatment, every 4 wks, for 8 months, or until a Bone Marrow / Stem Cell transplant happens. NEED A HUGE HUG RIGHT NOW! :-(

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Hey CS -- Hang in there. It really gets rough at times, but there is no alternative. I would really stay away from people -- get on some other discussion groups and use your computer for company -- you do not need people bringing you colds or the flu -- that is what will get you -- the chemo should not be too severe, but I am sure that you will be neutropenic shortly if you are not now. I know it is tough, but you need to hold out. I got a lot of comfort from a little iPod that my son got for me. I listened to hymns that gave me hope and inspiration. I know how you feel -- I was down and out about three times when I just figured it would be better to cash in my chips and call it a life. But I am glad that I just decided to let the Lord deal with that, and I was going to enjoy one day at a time. I did have my job that kept me busy -- perhaps you can get involved with some people on the computer or some games or something like that ... you need something to keep you busy, and then when you get tired just go ahead and sleep it off. Benedryl always knocked me out. We are praying for you ... just stay in the game and realize that it will get better. -- dave

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CS....{{{{{hugs}}}}}. I sure wish I could do it in person. I read your post yesterday and you wouldn't leave my mind at all. I'm pulling and praying for you. Just keep taking one step and one breath at a time.
Shirley

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Dave, as always, thanks for the kind words. The chemo is nowhere near as bad as the cytoxan as far as side effects, but just the vomiting and pain are really an annoying pain in the butt, as they always are. They gave me two different types of heavy duty anti-nausea meds yesterday and today before the chemo, but it's just not holding it off. They weighed me yesterday, and I'm down to 96lbs...my normal, pre-cancer weight is 135-140 range. No wonder my strength to walk won't come back. SOOO FRUSTRATED TODAY! Can't stand not being able to go out for a run, long walk, just something physical. Been doing a lot of writing trying to get some things out without having to vent to a person and be annoying, but it's just not cutting it. Sort of talked to my very best friend this morning and feel like i was being a total jerk. He says we are all good, and he's awesome and can handle me even when i can't handle myself, so i believe him. Just always worry I'm going to tick him off one day and lose him.

They are saying that in 2 wks, we will day a one-day, 6hr round of cytoxan. Not looking forward to it at all. Please keep up the prayers...my resolve is not bouncing back like it used to...not even enough to pretend I'm ok, and that's something I'm like a PRO at! Been so bummed since getting back to Texas and starting this chemo, I'm even annoying myself...

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CS -- this is what they gave me to stimulate my appetite and I can assure you it did work. Ask your doc if you can have some on account of you need to gain back probably at least 10-20 pounds. Reading from the bottle it is Megestrol Aced 40 MG/ML SUSROX (whatever all of that means). It is a white liquid and you chug down just two teaspoons in the morning -- not very tasty but hopefully it will stay down. I usually chased it down with some fruit juice to get the taset out of my mouth. By lunch time you should be ready to start putting on some pounds, although it will take three or four days to really start taking hold. See if they can prescribe some for you. Things have to get better when they cannot get any worse, so just keep on keepin on and you will start to pull out of it. Just stay away from those germy people. Please let us know how it goes -- dave

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CS....I think it's totally understandable that you are going to have some down moments. Vent here! I have been venting quite a bit on grief sites since my son died in August. It sounds like you have a "rare" friend in that he's able and willing to be there for you.
Another suggestion to stimulate appetite is Marinol. It's a derivative of marijuana (but doesn't get you high) used to stimulate appetite. I'm not sure how it tastes but we used it when necessary on our pediatric patients who needed it.
Shirley

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Hi Lori,
I will be in Church, on Sunday and will pray and light a candle for you. My prayer will be that you get your fighting spirit back, and with that the strength to hold on until you get a bone marrow transplant. (note I said UNTIL) you have to keep thinking when, not if, and with all the prayers and positive thinking you will soon asking us to thank God for your good news. I don't know if you have a facebook page, I am on face book, Marie McMahon, we could chat any time or my email is mariemcmahon888@gmail.com. Please write any time if you want to vent, cry, talk, ask questions about Ireland, or just make small talk. I know the next few days will be tough for you but it will be worth it in the end. There are so many people rooting for you,

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Hi Lori,
I will be in Church, on Sunday and will pray and light a candle for you. My prayer will be that you get your fighting spirit back, and with that the strength to hold on until you get a bone marrow transplant. (note I said UNTIL) you have to keep thinking when, not if, and with all the prayers and positive thinking you will soon asking us to thank God for your good news. I don't know if you have a facebook page, I am on face book, Marie McMahon, we could chat any time or my email is mariemcmahon888@gmail.com. Please write any time if you want to vent, cry, talk, ask questions about Ireland, or just make small talk. I know the next few days will be tough for you but it will be worth it in the end. There are so many people rooting for you,

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thanks all. feel like the whiniest woman on the planet right now, but just can't get my mind to settle lately. sorry for the griping. dave, i've been on the appetite stimulant before in the hospital and actually am prescribed it right now...just didn't work that well in the hospital, and i don't have the bucks to spend on something that hasn't shown to work yet. i think if the nausea was gone it would work, but since i can't kick that, there's no way i'll b able to make myself eat. they keep trying to talk me into the feeding tube / tpn, but i've done the tpn before and it made me feel really weird. they had to stop it after a few hours, plus it ended up clotting my line.

shirley, u r right...that friend i have is one amazing person. wouldn't have made it this far without him. still feel terrible when i vent to him. God put him in my life for so many reasons, and i guess letting me vent to where i don't implode in on myself is one of those. he's the best. his family (wife and daughter) are just as awesome as he is, and i'm so thankful for all of them. i've heard of the marinol before, but haven't asked about it yet. eating in general seems so weird right now...think being sick so much lately is the big culprit behind the lack of appetite. sort of goes hand in hand.

marie, thank you for the prayers...they are appreciated. it's getting harder to say "when" the transplant happens. they told me if it takes more than 3 months to find a match, it's probably not going to happen period...it's been a month and a half now. always tend to beat the statistics, but am just very tired of everything right now. need some serious uplifting to get back to the fighting pace.

been feeling really nauseated the past few nights...tonight is getting especially bad. i think getting a good night's sleep would help everything a lot, but even the ambien isn't helping anymore. it's raining tonight, and that usually helps me sleep well. just getting to sleep in the first place is the problem. praying tonight will bring some sleep. going in on tuesday morning for labs. bet my counts r pretty low...that's probably why i feel so ick. if they do a blood transfusion, i'm betting it will kick some energy back in. too tired to lift my head or even think today.

thanks to all of you for taking the time to be kind...things seem to b just bouncing off me lately, but it means a lot to know that there are people who really care. at the end of the day, it's just good to know that some people get it...that i don't have to sugarcoat how it really is. (((hugs))) to all of you.

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CS -- I can recall three times when I just wanted to give it up and get out of it. It is a terribly distressful feeling. I can recall resolving to stop worrying and to let the Lord take over that part of it. Whatever He wanted was OK with me. That sort of got me just appreciating waking up in the morning -- or in the middle of the night -- whatever, and being able to do whatever I could. I realize in your case that is not much, and being nauseated all of the time is just miserable. Hopefully Tuesday you will get the transfusion that will hold you over until your system starts to get your blood numbers up. I hate that the appetite stimulant did not work ... it is kind of horrid to take when you are nauseated, but it you have some left over and there is any way you can keep it down, I would give it another try -- it takes about three days for it to kick in. Please keep us up on how you are doing -- we are praying for you -- dave

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Hello I had no appetite and was put on Mirtazapine 15mg. After a few days I felt like I could eat a whole pizza. I only took this medicine for 3 weeks while I was in the hospital. It really helped me. This medicine is a depressant. I took it at bedtime. I was already on another depressant so getting off of it was very easy. I had no side effects with it. When I couldn't sleep the nurse gave me Ambien. I no longer take this pill as I wanted to get off of so many other medications. I had been through it all too. I am in remission now for 2 yrs and I still need blood transfusions. You will get better. It just takes time. Just know that you will have allot of support on this site. Dave even helped me too.

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Hey CS....how are you doing? Hope all is well with you.
Shirley

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