Starting Chemo in May 07

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  • pnpmary
    pnpmary Member Posts: 14
    edited May 2007
    Thanks for the information on avoiding the use of the affected arm. I'm surprised that no one has said anything to me. I do understand that lymphedema can occur at any time but figured it didn't apply to those of us who only had sentinal nodes done.

    Re chemo delays: I'm 2.5 months out of diagnostic surgery and will be 7 weeks after my nodal biopsy. Onco's say anywhere from 4-12 weeks post nodes is ok for chemo start, though all would have preferred me in sooner though without rationale. I am glad I dragged my heels, though as I had a late complication to surgery ( cellulitis 5 weeks after surgery which is still resolving). I'm seeing my surgeon on the 23rd and will start chemo on the 25th. If you start chemo before you are healed, it will only delay further healing.

    Mary
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  • ocinny414
    ocinny414 Member Posts: 123
    edited May 2007
    Good evening everyone,
    It's Day 4
    I've felt awful all day. Hungry but nothing sounded good, but forced myself to eat. My back has bothered me some and am wondering if its not from the neulasta shot, other than that no pain to speak of.
    Just really tired and ready for bed.
    Thanks for all the info posted today and yesterday on hats and wigs,
    CindyKS
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  • sherry35
    sherry35 Member Posts: 409
    edited May 2007
    Hey everyone, and welcome to all of our new girls. I'm glad you all found this board for support, but wish we were meeting under different circumstances.
    Jen ( in Germany ) i have had anxiety panic disorder for about 12 years and a slight form of OCD. I also have a nursing background and tend to self diagnose everything. Oddly enough I have been eerily calm through all of this. Don't get me wrong, i have my moments, i think we all do, but the anxiety has been under control.
    Kim, I too am in Ont. Had my surgery on April 9, Right mast., and am starting chemo on May 23. Wouldn't it be a hoot if we were close by. Good luck and let me know where you are, I'm in Orillia about an hour and a half north of Toronto.
    My husband and i are going away for a "cancer free" weekend before chemo starts. Untill next week, take care everyone.
    Sherry
    PS Did anyone else's port drive them nuts right after getting it in. (itchiness, feels like it's pinching something every time i move the wrong way, bruising?)
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  • MAGGIE26
    MAGGIE26 Member Posts: 5
    edited May 2007
    Hi I am Maggie and aged 35
    I am starting on the 30th May - I am having it every 3 weeks for 4 rounds. I am petrified that I will be very sick as I have a job that I love and do not want to be forced to stay at home - I think I would go crazy!
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  • chemo072
    chemo072 Member Posts: 682
    edited May 2007
    Quote:


    It's Day 4
    I've felt awful all day. Hungry but nothing sounded good, but forced myself to eat. My back has bothered me some and am wondering if its not from the neulasta shot, other than that no pain to speak of.
    Just really tired and ready for bed.
    CindyKS



    Cindy KS, only on day 2 of round #2 myself, but just wanted to say HUGS! So far this round is better but mostly I think because I'm pounding water while it still tastes decent (i know the window's short) and because my onc and I decided for me NOT to take the compazine, I think that was part of what was making me so sick. And I realized that the cytoxan pushes me into migraine land so I'm trying like crazy to get out of it. So far so good knock on wood.

    Last time days 4 - 11 SUCKED very very badly for me, so I hope it's better for you. If you can walk just up and down the block being outside might help you feel better - just not during the middle of the day because of photosenstivity.
    Last time life got better for me once I discovered icy milk shakes made in my blender. And rice pudding. Having 5 little meals a day in my tummy really did help, much as it's hard to do.

    This stuff is hard, hence my blog post this morning:
    http://imaginebrightfutures.wordpress.com/2007/05/18/ancient-wisdom/

    in any case, big big hugs to you my dear. Hope things look up. Sometimes a day can turn on a dime, KWIM? An hour at a time if need be.
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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited May 2007
    I'm on day 2 of round 1 and have a call in to the nurses for heartburn help - it's bad! Right on the verge of a migraine, too, and I don't want either thing to escalate. I was up every other hour last night but at least I did manage to sleep. I'm a little concerned because day 2 is supposed to be relatively easy - I felt cruddy within 2 hours of getting home day 1! What will day 3 and 4 hold...

    Getting the chemo yesterday was pretty darn easy. Triscuits tasted good, and I drank a TON of water. I love my port which made it all so easy. I have to figure out more foods that work. Nothing sugary or it exacerbates the heartburn, nothing very flavorful or I burp it later (GROSS!). I may have to send my mom for some rice pudding and see if that's my miracle.

    Any of you guys notice that your ability to write and be coherent is severely limited?

    Everyone hang in there... none of this is permanent... hugs to all,
    LeeAnne
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  • lwy
    lwy Member Posts: 153
    edited May 2007
    Hey guys,
    question for everyone. I had taxotere, carboplantin and herceptin for the first time on May 7th and went for blood work today. everything was normal except my SGPT (ALT) was 130, which is about 4 times the normal. It was 40 prior to chemo. Has anyone else had this problem with their LFTs with chemo and if so, did they continue the same chemo and did everything go back to normal after chemo?
    Leslie
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  • Bernadine
    Bernadine Member Posts: 49
    edited May 2007
    Hi LeeAnne,
    I had my first chemo April 30, I was sick when I came home til 10pm awful then the nausea stayed for 7 days, the 8th day in the afternoon when I went for exercise at the YMCA everything went away and I'm feeling now.I felt crappy and drwosy you name it I had it....

    I'm going for my second one may 22 hopefully they will give me something for nausea that will work... Hope for the best in the next few days and it will come to normal again.....I grave salt like you would never believe.

    IDC,3.2cm 19nodes-,ER/PR+,her2-,stage1,grade2,left mast.
    Still doing exercise for arm for lymphadema still no sensation under my arm and still 2 by 4 across chest,not really my plan for the summer.
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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited May 2007
    Well, post-chemo day 2 was pretty darn good! I got the kids off to school, took a shower, went on a 20+ minute walk with my mom, napped off and on for a few hours and had a Neulasta shot at 3 followed by a big trip to Walgreens for Zantac, Tums and more extra-strength Tylenol. I'm starting to feel like I need a lazy-susan in the middle of the kitchen table to hold all these meds! Haven't felt nauseated all day though, and I'm hoping to hold off on the compazine and just take an Ativan and a Zantac tonight.

    I find I can only eat a few bites at a time. I'm chugging the water and the ginger limeade like crazy though. Here's to tomorrow being a no-nausea day as well!

    Hugs to all,
    LeeAnne
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  • sherry35
    sherry35 Member Posts: 409
    edited May 2007
    You all sound so brave and courageous. I know that sounds stupid because we don't have a choice, but it's true. My first chemo is on thursday may 24. I'm scared sh@#less, not of the chemo itself, but of how i'll feel and react after.
    @ How do you not worry when your told you have a big blood clot. She also showed me 3 exercises that no one has ever showed me before that I have never heard of. Apparantly if I'd been doing these exercises I wouldn't have gotten the blood clot and would be able to move my arm better than i can know. I was so po'ed.
    I told my husband that today was the first time in 4 months, since I found the freakin lump that I actually thought things might not be all right. Seriously.
    Sometimes I can't get a straight answer, and I think I've figured something out and then I get another dose of reality. Do dr's conspire to keep things from you so that you don't worry when you really should be worrying??
    Sorry for ranting, but that's just the kind of day i've had. Need to vent and knew I could do it here.
    Hope everyone is doing well. Have a great weekend! TC.
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  • ocinny414
    ocinny414 Member Posts: 123
    edited May 2007
    Day 5
    Wow what a difference a day makes. I felt great today. Didn haev to take my nausea meds or anything. I ate and felt fine, I had energy so drove to moms (stole some homemade ice cream from her freezer ) and then went to work tonight. I haven't had heartburn or a migrain headache. I'm hoping the next week is the same as today. I'm worried about my next treatment since I will be getting taxotere and Cytoxan both instead of just the Cytoxan. The Nuelasta shot didn't bother me like I thought it would. They had said bone pain but I just had a back ache yesterday.
    Well I'm feeling better and am hanging in there. Sending big {{{{HUGS}}}} to everyone.
    CindyKS
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2007
    Hi,

    Sounds like everyone is either hangin' in there, feeling good or anxiously anticipating their first treatment - I think quite a few are due to start next week.

    I saw my onc. today and my blood counts are good (Yeah!) so I am up for tx #2 on Tuesday. I have every reason to believe that this tx will go as well as the first (keeping fingers crossed). My hair isn't fairing so well though - I look like Woodstock from the Peanuts cartoons! I thought about shaving it clean off but I like to still have some hair sticking out at the sides and the very back under my hats so I don't look completely bald. I know I will be soon, but if I can get a couple of more days out of this fuzz then what the heck? I didn't relaize how grey I'd gone until the only hair I now possess are my grey roots! YIKES! I am only 42 and am about 50% (at least) grey!!! I've been colouring my hair since I was 27 (I started going grey at 19!!!) so it's quite a shock to jus thow silvery I've become. My plan it so let it stay grey when it grows back in! I knew I didn't want ot dye it for the rest of my life but I thought maybe when I turn 50 - however, I will have to go lighter and lighter to become eventually ash blond then let the grey grow through and it would take quite some time. This is the perfect opportunity to just start fresh! I think silver hair can be very beautiful and my face still looks young(ish) so I think it will look good. I hope I have the courage to let it go natural...it's hard to look 10-15 years older than you really are though. Anyways, it's just hair - how vain and shallow I am!!

    CindyKs - I am glad you're feeling better! What a relief to feel like yourself again hey?

    Sherry - I'd be scared too if I were you! I hope that blood clots dissolves pronto and that you're feeling better and ready to start chemo. I don't have a port but I've heard they are great for the actual administering of chemo - easier on your veins too!

    Nadola - be sure to insist on different anti nausea meds. I was told that they have something like 9 different meds for nausea so if one or two or even three of them don't work - then keep going until you find one that does!

    LeeAnne - I hope tomorrow is an even better day than today as far as nausea goes (thank goodness for gingerale hey?) Even at my krappiest, I always found that a walk in the fresh air seemed to help so much!

    Leslie - I have no idea what those abbreviatiosn stand for (in regards to bloodwork) so obvioulsy then I don't know my numbers. That's certainly a differnece I see between the US and Canada - I never get that kind of information (I'm sure if I asked it would be no problem) but I don't have a copy of my pathology report or anything like that. You American women seem to have so much more information. We barely have access to our medical files - guess it's because of universal health care maybe? We don't "pay" for our health care so we don't get as much info from the docs?? Anyways, hope someone more knowledgable can answer your question!

    To all newcomers to our ever-expanding May group - Welcome! We're all in this together - to complain, vent, ask and answer questions, share anxieties and fears and to celebrate successes!

    Well, I'm off to bed. Have a great weekend everyone!(There will be no planting any gardens this weekend - it is cold and rainy here where I live - typical long weekend weather here! Hope you all have better and sunnier weather!)

    Mandy
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2007
    Hi Sherry,

    I am just dropping in from the Chemosabe March group... I just wanted to comment on your experiences so far. Particularly to the fact that you feel like no one (the docs) is telling you anything.

    I must say that I have learned far, far more from the ladies on this cancer board than any doctor or nurse. This is where I have learned about all the side effects I might experience and what to do to prevent or help deal with them.

    I have also learned more about my own health here and what everything on the path report means, etc.

    It is enraging! No one told me to get numbing creme for my port and when I got my first infusion in it, it was terribly painful. I was just magically supposed to know to ask for the RX. No one told me to do any exercizes to prevent lymphedema. No one told me to wear a bra while I was healing from my lumpectomy. On and on it goes....

    All I can say is read as much as you can on your own and write down any questions to ask your onc.

    I hope things start to go better soon. You will get through this and your bc sisters here will help you each step of the way.

    Best of luck to all you May ladies!

    Miss S
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  • NeoPat
    NeoPat Member Posts: 102
    edited May 2007
    Quote:

    Did anyone else's port drive them nuts right after getting it in. (itchiness, feels like it's pinching something every time i move the wrong way, bruising?)



    I wrote a long response and it didn't send and I have to do it over. Anyway, I said that I got a port yesterday and it feels very bruised and hurts with movement.

    I am taking Percocet and that controls it very well, but last night I slept for 6.5 hours and when I sat up to get out of bed to go potty...YOWIE! I took a pill and watched TV until it took effect. Then I went back to sleep and luckily woke up in four hours.

    I have the numbing cream to use on Wednesday for my first chemo, but I just read not to use it on broken skin. I'll have to see how healed I am by then. By the way, I did have to ask for a prescription for the cream.
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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited May 2007
    Day 3

    I got my port a week ago Friday, and had first chemo the following THursday. The steri strip is still on, just above the port, but I put the lidocaine (Emla) cream on just below the strip and it worked GREAT. I didn't feel a thing and I'm a huge pain wussie. The port is down in my cleavage almost, and doesn't really show, or hurt anymore, but where it goes into my jugular vein is a little uncomfortable. That might just be from the chemo drugs though.

    I agree with reading everything here to become educated. The nurses have always been surprised when I know exactly what they are talking about. None of the drugs or side effects is ever a surprise because I've done my reading... I think it helps.

    Also, if you are having pre-chemo nerves, ask if you can get your Ativan or sleeping pill scrip filled early. I LOVE LOVE LOVE the Ativan and it gave me 2 lovely full nights of sleep last week when I was so anxious over starting.

    Stomach is telling me that half a cup of coffee is all I can do. My cheeks are flushed so I'm going to take my temp and go back to bed and start a new book. Kids are at their dad's house for the week so it's just me and mom - heaven!

    Hugs to all,
    LeeAnne
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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited May 2007
    I got
    my port yesterday. Am typing one handed cause the D@#$ thing hurts so bad. I think it is infected its kind of red. they gave me decadron begore surgery to help with nausea, and i think it has caused me to have areally red , hot face today. has anyone else had this experience? kinda freaking out a bit.

    gracie
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  • chemo072
    chemo072 Member Posts: 682
    edited May 2007
    Quote:

    I got
    my port yesterday. Am typing one handed cause the [Email]D@#$[/Email] thing hurts so bad. I think it is infected its kind of red. they gave me decadron begore surgery to help with nausea, and i think it has caused me to have areally red , hot face today. has anyone else had this experience? kinda freaking out a bit.

    gracie



    Gracie - have you called your surgeon? They sent me home with dilaudid and told me to call if it got red. My surgeon's office always has someone on call.....Better to call than freak out. Hugs!!
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  • lwy
    lwy Member Posts: 153
    edited May 2007
    I got my port 2 weeks ago, and the part that bugs me the most is where they stuck my vein. they put in a stitch that should dissolve by itself, but the ends were long and rubbing against my clothes. the area around it became slightly red so I had to have my oncologist clip it down. The port itself doesn't hurt at all.
    I am now day #12 out from my first chemo. yesterday my blood work showed that I'm severely neutropenic so I"m just hanging out at home. I didn't get neulasta this time because my oncologist said not all people on TCH need it so she wanted to see how I did the first round. I imagine I will be getting it with the second round. I know I can leave the house, but kind of scared to with my low WBC so just bored at home. hope everyone else is doing well.
    Leslie
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  • swimfan
    swimfan Member Posts: 81
    edited May 2007
    Hi Girls, I've been hanging out on the Lobular and Triple Negative Boards...but since I got my first AC dose yesterday...I thought I'd pop over and join the May Chemo Cruise.

    So far so good, I love my Onc, he sent me home with 3 different nausea meds just in case and I didn't even ask! So far the Kytril is working. They dripped Kytril with the decadron pre-AC and I only took a preventative pill this morning. I still don't really have an appetite but have been drinking my fluids.

    I'm supposed to be okay by Monday which I need to be because High School students are very exhausting in May/June...but they've been helpful too...I teach in a theme based school which happens to be Health Science...so I studied "nodes" with my students who have anatomy class and my classes volunteered to "paint on my eye brows" for me or buy eyebrow stickers for my moods...anything at this point for a laugh!

    Hang in there everybody!
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  • cinrae123
    cinrae123 Member Posts: 419
    edited May 2007
    Hi girls,,,,,,,,,,,,,,,ok got some questions for you all. I am doing weekly TCH,,,,,,,,i just finished my second week on Monday. First week,,,,,felt like crap for 3 days. This week,,,,,,felt like crap for 3 days again. The indigestion is a killer and the over the counter stuff just isnt doin the trick for me........on monday I will ask the dr for a prescription med for that. I still feel kinda like in a fog,,,,,,,,,,is that how it will be the entire time? I am considering going on the every 3 week thing instead of the every week thing. The thought of feeling like crap 3 out of 7 days every week for 6 months is exhausting me. Those of you doing tch or any kind of chemo every three weeks,,,,,,,do you just have the first week that you dont feel well? Or does it continue on into the two weeks after that? Only reason I decided to do every week was to possibly save the great follicular fallout,,,,,,,,,but since both weeks so far I havent felt so good for 3 out of 7 days,,,,,,,,I'm just not sure its worth putting myself thru this every darn week just to possibly save me from my hair falling out (even the every week thing isnt a guarantee). Do I just buck up and do the every 3 week thing and accept the fact of losing my hair? Its also just emotionally draining,,,,,,the not feeling well, not sleeping for two days, the not feeling like myself in the head (I hate that feeling, like I am hung over or something, like I'm here but not here, its weird). I have always been in great control of myself and feel so out of it. Any information you all can send my way I would appreciate it. Hope you are all doing well.
    Cindy
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  • ocinny414
    ocinny414 Member Posts: 123
    edited May 2007
    Day 6 was awsome for me. I volunteer at the local human society dog shelter and I went out this morning for the first time since this all started back in April. We have a Chow mix puppy so I walked him. It was alot of fun and I got some good exercise as well. I also worked in the shed a little. Just moved things around. We are rearranging the living room so I helped my son with that. I FELT GREAT!! I sure hope this feeling continues at least until my next treatment.
    My port doesn't really bother me at all, where it is. I do feel a pokey feeling sometimes if I move just right and I wonder if its not where the tube goes into the vein. I call it my stab wound cause when I first got it they glued the incesion and it looked like I had been stabbed. I don't have any cream but the onc nurse gives a little shot of numbing stuff before she puts the needle in. I dont feel a thing. Just wish the Lab where I get my blood work done could use it for bloodwork. They say you need special stuff and to flush it before and after and its a small town hospitol. But to go where they could use it would mean an extra 40 mile round trip and with gas at 3.40 a gallon I'll suffer the stick in the arm.
    Well hope everyone is having a good weekend.
    {{{{{{HUGS}}}}}
    CindyKS
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  • susanmary
    susanmary Member Posts: 137
    edited May 2007

    Good luck and my thoughts will be with you during this trying time. Just hang in there and make yourself No. 1. Take care

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  • lwy
    lwy Member Posts: 153
    edited May 2007
    cindy, i'm on the every 3 weeks TCH and so far it is difficult for me to pinpoint a pattern because I was hospitalized almost that first week for something else unrelated to the chemo. I would have to say that I was the most tired on day #7 and #8 and otherwise feel fine. I did not have much nausea, but took the zofran scheduled twice a day for the first 3 days as instructed by my doctor. I personally don't think I could do chemo every week because of the time commitment and also the emotional drain. My only chemo has been on the 7th and I still have all my hair, but I'm sure that it will go at some point. I know the hair loss is traumatic, but other than that, the 3 week regimen so far doesn't seem so bad. Also, cindy, just wondering if you got neulasta with you chemo or not? I did not get it, but I'm now neutropenic, so i wonder if I will get it the next round.
    Leslie
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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited May 2007
    cindy, did you get the pm i sent you?

    gracie
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  • cinrae123
    cinrae123 Member Posts: 419
    edited May 2007

    no gracie,,,,,,,,,,,,i didnt get a pm from you.

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  • cinrae123
    cinrae123 Member Posts: 419
    edited May 2007
    Leslie,,,,,,,,,,,,,I have my third chemo tomorrow which will finish out my first cycle since I do it every week. And am scheduled for a neulasta shot on Tues. Do we always have to get that shot or only if our counts are off? I will find out tomorrow. Yeah,,,,,,,Im thinking of changing to the every 3 week thing,,,,,,,,,its just too emotional for me feeling like crap for so many days of every week. Funny thing though,,,,this week I have been nauseated. That didnt happen the first week. Seems weird to me. Lets hang in there all,,,,,,,,,,,,but I think I am resigning myself to the hair loss. I think I would rather feel better more days and just bite the bullet with the hair loss issue.
    Take care all,
    Cindy
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  • hlreeh
    hlreeh Member Posts: 3
    edited May 2007
    Hi guys,

    Sorry I have been out of the loop guys. Starting my chemo DD AC on Mon 21(tomorrow). Just got back from my doctoral degree graduation which I begged to be released to travel to and made it. Can't believe I got another degree at 50! When I finished my comps in March, I thought I would finally have time to relax and be stress free. Two days later I started the whirlwind I have been on as all of you have: Mamo,Ultrasound, Biopsy, Left mastectomy and port insertion. So will just have to put with another 4-6 months of stress and THEN I will get to relax.

    Just wanted to express my thanks to all those who have "gone before" for sharing their experiences. It has really helped reduce my anxiety.

    I am sure things will go well tomorrow and will post after.

    Hilary
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  • b445
    b445 Member Posts: 1,325
    edited May 2007

    Hi ladies Looks like I will be having one in May and then really going forward in June! I've domne this before only I did CMF from Dec '05 to May '06 and here I am a year later starting all over with a stonger one. Hope you all respond well and never have to do this again. it's the pits looking at this agin in just over a year. Be vigalant with any new feelings and bug the heck out of you Docs. It's the best way!

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  • DebbieK
    DebbieK Member Posts: 116
    edited May 2007
    Hi All. I am still a couple weeks from my first chemo. I will get the exact date this week and will have my port put in next week.

    I have seen a lot of comments about the lack of information given to us as we go through all of this, and I too have struggled to find information. Even the doctors don't give us the same story. I have done a lot of research on the internet which has helped, but I too agree that all the letters on this site have really helped me greatly. Before my mastectomy I read about a SOFTEE camisole written about by one of you ladies. I ordered one immediately, and was I ever glad I did. Basically, what they gave me at the hospital was a mastectomy bra that was very snug and hurt a lot!! I got home and simply could not wear it at all. I was in that Softee for the entire first two weeks after surgery. It really was a lifesaver.

    Hope you all have a great week! Debbie
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  • ocinny414
    ocinny414 Member Posts: 123
    edited May 2007
    I had another great day today and I worked for 7 hours. My muscles are a little sore and I'm wondering for thats a delay from the Nuelasta shot I got on Wednesday. My shoulders are kinda achy as well. I took 2 tylenol and that seems to have helped.
    Another question. I was on the depo prevera shot (birth control every 3 months) for ovarian cysts before all this started. I don't have periods while on the shot. Low and behold last night my body decided hey lets have a period. Its very light but I'm wondering if its the cytoxan, steroids or what. I'n not due for my next shot until the beginning of June and the onc told me to go off it so will not be getting my next one.
    I will be calling my onc tomorrow anyway, I had issues with constipation and (ok sorry to be icky and candid) that caused a flare up of my hemrhoids and now I've had a couple of bloody stools, taking a stool softner so the constipation is not an issue, no pain, or fever or anything its just worrisome. Sorry to be candid but if anyone else is having this problem let me know.
    Thanks
    CindyKS
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