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Posted 10/19/2005 12:52 AM (GMT 0)

Hi all, I had my first treatment yes. The A/C and Cytoxan. I did pretty well, and so far haven't thrown up. However they have me loaded up with anti-nausea meds, because of the treatments and the Crohns flare, ostomy, etc. The port is a life saver for me, cause I have only one vein left that you can get into. In the elbow bend of my arm. And as usual i always have one "little know it all nurse" that knows it all, and will listen to nothing. I ask her if she was a good sticker, when she said most of the time, i knew it was on then. Before I could get the words out of my mouth, she lidocained me, and went ahead and put a huge needle in that small vein anyway. Within secs, i told her it wasn't in, cause a cold goose egg was already there, as if i wasn't in enough pain. Then she tried to start rolling it around to try to get it into the vein. They had to call the Cheif of Anesthesiology up to pre-op to get it in. If it hadn't been for the mastectomy, the crohns pains, the port pain, i would cleaned her clock. yeah .. Ladies I think I have "PC brain" now   as well, I had "Crohns brain" before,which is not a real term, but couldn't remember anything at all then, "chemo brain",  but this is the 4th time trying to get this mess typed in, so if anything is wrong, just over look it. LOL.You all gave me good advice, about the unknown being the worst,  your insight, that I had no idea about, hope, and support. I thank you ALL. This is a great place to be, when you need support, friends, well you all know. I am grateful to have "bosom buddies" now. Keep me in your prayers, as i will all of you. Love and Huggs to you all, May God Bless, Carol

Posted 10/19/2005 1:17 AM (GMT 0)
harley26,
I am so glad it was not as bad as you were expecting. I am glad that the port is working for you. I did not have a port and even now doing the Herceptin we are just going to keep trying until we can't do any more. I still have 13 treatments to go. Before you know it you will be done.
How are things with your crohns, is that under control?
Rest and take care of your self
My best to you.
Donna
Posted 10/19/2005 1:31 AM (GMT 0)
Carol

So glad it well with your first chemo, it really isnt that bad. Dont you love it when you get a nurse that cant get a stick!!! When I had my lumpectomy she tried 3 times, had blood everywhere and then finally called for someone else to do it. The other nurse came over and stuck me and put the IV in another spot without lidocain OUCH. My hand was bruised for 2 weeks. Well congrads you are now part of the chemo gang!
Posted 10/19/2005 2:02 AM (GMT 0)
I absolutely hate it when a nurse will not listen to you. Even though I have a port, they always try to put the iv in my right arm. I'll move my arm out of the way and tell them that they cannot use that arm either. Then, they tell me they'll use my hand.

I used to warn them about not doing that, but now I don't bother. It's worth watching their faces when they put it into a nice vein, let it go, and it blows out and sprays blood on their face. I know it's bad karma but I figure they deserve it.

How do these people survive thinking they know more about your body in 15 minutes than you do? I hated the idea of having a port inserted, especially when the surgeon showed me what it looked like before my mastectomy surgery. I P&M'd about it for the three weeks it took to calm down. It is now my very dear friend.

I hope your meds will keep away some of your side-effects. They have a lot of good meds today that do that. Let us know how you make out.

Hugs, Jo-Ann
Posted 10/19/2005 8:23 AM (GMT 0)
Grammy, my crohns hasn't been under control since the day I heard Cancer. For the most part it stays that way. I also have a small drainage in the vaginal area. My onc thinks that the chemo could possibly help throw it into remission. Its just aggravating to have. about the port, did you just not want one, or couldn't have one? And yes soon I will be where you guys are. I'm already counting down the days. I have another question, I have woke up the past 2 morns, with swelling in my face. Is that normal? I know taking decadron will make you swell and i think the emend will as well. Just not sure. I do have swelling under the affected arm which the doc knows about, he says it's normal, but the face is new. Any info will work for me. Love and prayers to you. Carol
Posted 10/19/2005 8:39 AM (GMT 0)
Bernadette,Its always funny to see them try and then they are not as smart as they think they are, what gets me though is when you try to tell them and they still won't listen. Then she kept saying I'm sorry honey,. You know I wasn't in no mood for all that. When the anesthesiologist came up, she was all up in him, as I had already told him what she did. She kept saying, oh he loves me, BLAH, he didn't even look at her or even respond. HAHA, Love to all Carol


Jo-Anne, If I had good veins i would do just that,LOL, When she saw that vein she says "oh I can get that one. My brother was with me,and said OH NO HERE WE GO AGAIN! Cause I was not nice and had nothing to say to her. Anethesia even told her she couldn't get into it. He watched when I showed him. It was basically in the same place, just a little above it where she stuck me OUCH2. He made her go get some smaller needles. LOVE AND PRAYERS TO ALL, Carol

Post Edited (harley26) : 10/19/2005 2:44:24 AM (GMT-6)

Posted 10/21/2005 2:35 AM (GMT 0)
Carol

Dont you wonder about some of the people in the world. I cant understand why she didnt listen to you! Of all people you should know your body better than anyone. I have been lucky with my chemo nurses they are all very sweet and good to us. They make a point if one nurse starte with you she spends the entire time that day with you. I like that it gives you a chance to get to know all of them.
How are you doing? are you still feeling good? Have you had the metal taste in your mouth and the heartburn? My first chemo the worst part was the awful taste in my mouth, but know I dont have that anymore. I just feel tired no other side effects. It will go by very fast and before you know it you will be done. Take care.
Posted 10/21/2005 6:56 AM (GMT 0)
Hi Bernadette, Yes spending time with the same nurse in chemo would be nice. I hope that is the way they do here. I was in pre-op for the port when know it all was like a vampire bat. I do have a bland taste in my mouth, but, since I have only had my first treatment, I really don't know what to expect. I am feeling tired as well,and heartburn, but with the Crohn's and this , I expected that. I can't sleep tonite so i thought I would get up and see what you guys were up to. How far along are you in your treatments? I think I read it somewhere, but, I'm not sure. This is the first nite i have not been able to sleep, and i fell yesterday morning. OH BOY!!!!!!!! Don't need that. I got up to fast, i think. They have me on a lot of anti-nausea meds to keep the chemo sick down, and the throwing up from Crohn's as well. After 4 months of A/C, and Cytoxan, 3 wks apart, I start on Taxol and Herceptin, it appears, then i have 12 wks of radiation, 5 days a wk, then finish a year out with Herceptin. That's the way my calendar reads now anyway. I'm not so sure, cause my doc wasn't there my first app, as is the norm. You meet with a chemo nurse, who takes all your info, well goes over it with you, cause the doc has already seen me, then she takes it from there. I am doing it on an outpatient basis at the hosp. The nurse I had in chemo was very nice to me too, made sure i was warm, wanted anything to drink or eat, and even had lunch. However, hosp food for me isn't much on the appetizing side.LOL((((((HUGS)))))) back at ya, Carol
Posted 10/21/2005 2:54 PM (GMT 0)
Carol

I started out doing TAC Taxotere plus AC but got very sick and was down for a week so they took the Taxotere out of my regimine. I did 3 more AC every other week. I start Tuesday with Taxol for weekly for 8 weeks Then radiation for 6 weeks. I have shots after each chemo I had Neulasta twice and Neupogen twice are you scheduled for those too? I meet with my DR every time I do a treatment I think it is because she wants to check my lungs. I got bronchitis after the 1st treatment and had a cough for over a month. I have asthma so anytime I get a cold in goes into my lungs. Hope all goes well for you.
Posted 10/22/2005 2:02 AM (GMT 0)
Carol,
Hope this finds you doing well. I am so sorry you are having trouble with your crohns. They say that chemo helps crohns because of the decadron. I had a lot of trouble during chemo. I spent a week in the hospital in between my first and second treatment. Then my seventh treatment was canceled because I had a drainage in my vaginal area. In fact my gyn took care of my crohns during chemo because my gastro was being a pain and did not believe all of the issues that put me in the hospital were due to the chemo. He did not want to see me when both my gyn and my onc spoke to him. So later my gastro and I had a talk and he now listens or knows he is hitting the road. I don't really care if I see him or not, waiting until something better comes along. They say that it is unusal for the crohns not to calm down with the chemo because of the steroids but I always have to do things the hard way.
As far as the port goes I did not get one at the start of chemo and it did cause a problem being in the hospital and they were using up my veins but then I finished and all was well until I started to do the Herceptin now we are just trying to get through without a port. I started doing the Herceptin 11 mos. after chemo and with the treatments being every three weeks I just want to forget all of it as best I can in between treatments.
As far as the swelling of your face I do not know for sure but I think it is the steroids I did not have trouble with my face but a friend of mine had trouble the whole time she did chemo.
I hope you do well with further treatments and if I can help in any way just let me know.
Stay well
Donna
Posted 10/22/2005 2:06 AM (GMT 0)
Carol,
Helps if you reread before you hit submit. When talking about my gastro he never believed any of my problems were because of my crohns, not even when I had a drainage in my vaginal area. I'm sure your crohns will settle down with the chemo, I told you I just like to give them a hard time.
my best
Donna
Posted 10/22/2005 12:46 PM (GMT 0)

So far I have had 2 treatments and the vein in my hand has held up. I've had the same nurse except this last time when I went the day after to get my Neulasta shot the other nurse gave it to me and I swear she was trying to stick the whole needle in my arm. Then I went the other day and she gave me my Zoladec shot too which is given in my abdomen and that hurt! mad   I think she just doesn't know how to give shots. They're both very nice. I have to go next week again on Wednesday this time because my nurse will not be there on Thursday. Thank goodness, I don't think I want the other one trying to put the needle in my hand for the cocktail. nono

I haven't had any metal taste in my mouth, it's just an awful dry, yucky blechhhh! The corners of my mouth are sore and I'm having a hard time trying to get it to heal. I hate this whole thing and I don't think I will ever do it again once this is over with.

Posted 10/22/2005 1:45 PM (GMT 0)
Donna, I think all gi's can be a pain in the butt, pun intended, when they want to. I have had them do me the same way as you. I also am having fis prob, but I think I will see if the chemo will through it for a loop first. It is not painful at the moment just irritating. And I don't understand why they don't just shut up and listen. This stuff if bad enough w/o a doc who wants to have an attitude. I am looking for my gi not to want to see me my next app either, cause i had to cancel the prev one on count of B/C, and the need for biopsies, then the mastectomy. There are lots of things that can pop up with Crohn's, and i have told them they have no idea. They get mad at me and try to tell me not to be the doc. I wish they could have it for just a little bit, but, they couldn't handle it. I too give them a hard time.
And have told all nurses and docs that a Crohns patient did not make a good patient, i don't anyway. Cause personally, if i am hurting or what ever with this or the B/C, I want something NOW!!! not later, very impatient, and I don't take crap off them. And you sound like you wouldn't either. The port is very vital to my chemo treatment now, as they have already used all my veins. I must have slept on the wrong side last nite cause this am i have a very bad sore throat and the thing is hurting. I hate all of this. After all these years, I never thought I would be here, but, we never know what tomorrow holds. I am just not feeling up to par today. I feel like my whole body is in limbo or something, like every thing is out of whack.I hope the best for you as well. HUGS, Carol
Posted 10/22/2005 1:56 PM (GMT 0)
Bernadette, I haven't had any shots scheduled at this point in my treatment. Right now it is just A/C, Cytoxan. The onc, the way i understood him from the beginning was he wanted to start me out on Herceptin as well, but, from what I have read they can't give that to you with the A/C, am I correct? All this is so confusing to me now anyway. They have me scheduled for a year of treatment is all I know for sure.I have 2 docs app, back to back next wk, then my next chemo is Nov 7. Seems like such a long road to travel right now, but, I guess it will be over before I know it. HUGS, Carol
Posted 10/22/2005 2:05 PM (GMT 0)
Kattbird, I have had those shots in the stomach too. They do hurt. They told me I couldn't rub it or touch it until the pain stops. I was told they were for the blood clots that get into the legs and move to the lungs, heart, but, I have never had them until my last hosp visit. When my mouth gets sore in the corners, I use a little bit of Campho Phenique, and that usually dries them up. Mine always want to split open, and that is all that helps them. Hope this helps, Carol
Posted 10/22/2005 3:24 PM (GMT 0)
The shots I'm getting in my abdomen are to stop me from ovulating. But when my regular nurse gives it to me it doesn't hurt. I have been using Neosporin lip treatment and vaseline on mine. Mine was actually bleeding a little in one corner. 

Posted 10/22/2005 11:50 PM (GMT 0)
Carol,
I'm sorry your not feeling to well today. What day did you have your treatment? I never got sick from the chemo, I was just sick those two times that I went in the hospital. I lost 16 pounds during the a/c but was hungry on the taxol. A dear friend told me to make sure the first few days to never let my stomach get empty. I would nibble on crackers and bread or snowflake rolls they were so good. This really did work. My husband always made me mashed potatoes and they always helped. I just never let my stomach get empty. I hope this passes quickly for you. Get lots of rest. Sometimes just laying down felt good even if I did not sleep.
What crohns meds are you on? I take colazal, Bentyl and protonix.
Take care and rest.
Donna
Posted 10/23/2005 8:07 AM (GMT 0)
Hi Donna, My first treatment was Oct 17. So far the chemo hasn't made me sick unless that is what is going on now, or as far as throwing up it hasn't. I am loosing weight too, w/D. I try to keep something on my stomach, cereal, crackers, something not to heavy. I am trying to rest, but, even laying still, I get so stiff it is very uncomfortable.. I take 6-MP, for the crohns, and pentasa, but, it comes thru whole cause of my digestive system. So for now I am drinking sprite, and sucking ice to try to get rid of this nasty taste in my mouth. Trying to cough up this lump or drainage i seem to have started having. I remember someone else saying something about that, i think Kattbird. I also take prilosec for the stomach. Thanks for the info, and I hope you have a good day too.
Posted 10/23/2005 2:58 PM (GMT 0)
Carol,
I'm sorry your feeling so bad. Sorry but the bad taste in your mouth will be there for awhile, try gum or suck on hard candy. There was jars of candy sitting out where we did chemo and it did seems to help. Just not a good idea if your laying down. ( sorry I sound like a mother )
I nice longggg soak in a really hot tub helps ( check into a hotel that has a jacuzzi, just kidding but I thought about it ) with all the aches and pains. Is this part of your crohns or is this new for you? I barely had time to figure out all the junk with the crohns when I was dx with the bc. ( Crohns in Feb. and bc in May )
I was always carrying around dinner rolls and would just keep pulling tiny bites off and putting them in my mouth because opening my mouth and trying to take a bite would gag me. Have you ever found Mrs. Grass noodle soup, all it has in it is noodles and broth and that seemed to help if I just sipped on it. In fact I am sipping on the soup now, I have a cold and feel rotten today.
I know you might not think so right now but this will pass and you will have good days in betweeen treatments just make sure you do a lot of drinking. Water was always best for me, but a lot of people say ginger ale works really well.
I hope you feel better soon and let me know if I can help in any way.
Keeping you in my prayers
Donna
Posted 10/23/2005 3:29 PM (GMT 0)
I'm glad it went okay.  My "good vein" is in the arm that can't be stuck.  I absolutely hate that!

 

I hope you're still feeling okay.  You sound really up.

 

take care and keep posting.

Posted 10/23/2005 4:34 PM (GMT 0)
Donna & Carol

I had to write to you abot the Mrs Grass soup I lived on that after my first 2 treatrments it was the only thing that I could stand the taste of. I have had some wierd things happen to my taste buds. After my 1st chemo I stopped to buy a water and accidently got a lemon water and since then I cant stand anything with citrus, not even the smell of it. Did either one of you had a super sensitive nose??? Mine is still that way, if I smell something I dont like watch out! I only have 8 weeks of chemo left and then onto rads. I hope the Taxol is kind to me because we are going into our busy time at work and I cant afford to be sick. Donna are you done with all of your treatments? Carol hang in there it does go by faster than you think it will.
Posted 10/23/2005 6:25 PM (GMT 0)
Bernadette,
The Taxol was so much easier for me there was a lot of pain but they gave me something for that. I found if I kept working it was better because I was not going to give into it. I am pig headed I only missed work the day of chemo ( except when I was in the hospital in between my first and second treatment because of my crohns ) I am doing Herceptin, I have 13 to go I will finish up next summer sometime.
I have had trouble eating meat. I think it is the texture of the meat I could not do it during chemo and almost a year later I still eat very little which is fine with me. I really don't miss it.
The 8 weeks of chemo will fly by. Take care of yourself.
Donna

Carol,
I hope your feeling better as the day goes on.
Take care
Donna
Posted 10/24/2005 8:54 AM (GMT 0)
We have hard candy too. I haven't tried the Mrs Grass soup, but, the Ramen Noodles seem to do the trick for me. That is when I feel like I can eat something. I will check into the other to sip on. Sometimes the Chamomille tea will do the trick as well. Just haven't gotten around to it this time. The crohns is always a prob, but, I usually know what to expect out of it. I live in chronic pain with it too. But, the b/c, like I said is a whole different ball of wax. Since the chemo, my taste buds and definitely my nose has changed. It seems everything stinks. Especially this morn. It is a bit more sensitive than usual, as is the stomach. For now I guess I will stick to my sprite and ice, and try to get some rest before this afternoons doc app. Wouldn't you know, when you're down, its always an app, or chemo. I guess i'll check you guys in the wee hours of the am. Love and prayers
Posted 10/24/2005 10:20 AM (GMT 0)
HEY sis .........ya gotta beep me when you are on lol .I dont see you on here so ......am better today but still in rough shape and sounds like you are doing ok eh .......was in bed all wknd and I didnt call but hopefully I will be able to tonight or Tuesday ........You be well .........love ya sis ......God Bless...........Lyn
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