Starting chemo Sept 05

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Cheryl,

    Thinking of you today.....

    *susan*
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  • Pegk
    Pegk Member Posts: 389
    edited September 2005
    Hi all!
    I hope all of this week's starters are doing well, or at least improving. A bit of advice-keep brushing your teeth and using mouthwash after you eat and you should be eating lightly and often, with a lot of water.
    I had a lousy 17 hours after my treatment, but since then have continued to feel pretty good. I actually did errands on my own today, and while sometimes I felt like I was going in circles trying to remember what I needed, I think I got everything.
    My problem, now, is that I'm on the "death watch" for my hair. I guess I'm a little ahead of everybody-Day 17, since my first treatment. On other threads that seems to be when it lets go, but mine is still firmly attached. I'm not quite sure what to expect-waking up with it on my pillow? or feeling it wash away during my shower? and I already know I won't have a "cute" bald head-but a pointy skull and a couple of birth marks.
    I have two wigs standing by-the one my mother-in-law bought me, which is similar to the way my hair used to be before I got it cut, and a shorter one that I ordered from a catalogue, which is very comfortable, but a bit darker than I expected. Anyway, since I've gotten used to my new short hairdo, both of them seem like overkill-like alien animals on my head. I have some square scarves, but I haven't gotten the hang of tying them yet, and I feel like some kind of deranged gypsy. After my Neulasta shot yesterday, we went to the mall, where I tried to get some inspiration. I purchased a couple of inexpensive crocheted caps, but they will look a little weird until the weather gets cooler. I have checked out some of the head covering websites and those head wraps and turbans just don't seem like me. Have I mentioned that I never wear hats? I have been trying to be brave about this next step, but I admit as it is getting closer I'm starting to feel a little freaked.
    Sorry for venting, but that's what we're here for, right?
    Peggy
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  • monkey9cats
    monkey9cats Member Posts: 47
    edited September 2005
    1 down 7 to go! Went to my 1st treatment today..rather scared but once I met the nurses felt so much better. I was there 4 hours. They took blood, had it checked, put in the anti-nausea medicine, then the decadron then the big stuff. They explained everything to me! When I got home though I was so tired because I had been up since 4am drove the 70 miles to and 70 miles back so I layed down & took a 1 hour nap. I feel like I'm hung over (LOL) & I think thats the way I normally feel when I take my regular nap but maybe it's the chemo. They said I'd be fine today & most of tomorrow then the next 2 days would feel the effects. I'm hoping not to have any effects but I know I won't be that lucky!

    Cheryl =^..^=
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  • monkey9cats
    monkey9cats Member Posts: 47
    edited September 2005
    Tina
    Susans not kidding about the cost!! I was originally going to get a prescription from my doctor (which she did give me one) and try to find someone who could give me the shot in my town to save me from driving so far. After finding out the cost I decided there was no way I was going to be responsible to pick it up, store it in the frig and hope someone knows how to inject it. I'm making my long trip tomorrow to get mine at the Cancer Institue. By the way I ask the nurse what they recommend for the bone pain that you get with the Neulasta shot and they recommend Advil & Motrin. All I've seen is tylenol mentioned in here so I ran up to Walmart before I left town and bought me a box even though they have never worked for me. I guess I should have waited ha ha. I'm sure all doctors are different.

    Cheryl
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    yes I am feeling a bit better. I even held down a half a bowl of soup and some more meds!

    Tina
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    I am starting to feel like the resident novelist! Good thing this site doesn't charge by the word. :-)

    Peggy, thank you for making me smile. "alien animals on my head"... that is a keeper! So many women state that the hair is the hardest part of this. I have a wig [bought while high on the chemo pre-drugs, who knows what it looks like!], indoor and outdoor hats. I have not worn a hat since an Easter Bonnet in 1965. I have never worn scarves on my head. But... think of it this way. Three weeks you couldn't imagine yourself with short hair. Maybe by next week you will like hats? My hair at day 9 is already starting to loosen on other parts of my body. The hair will go soon enough. My understanding is that when it goes, it goes in clumps, and the loose hair gets caught in the attached hair and the process is, well, nasty. As I have mentioned before, I will shave before I get there. That I could not possibly manage.

    Cheryl, welcome home and so glad that you felt comfortable today. Sorry about the cost of the shot. Astonishing, eh? I have had almost NO pain from the Neulasta shot. The one day I felt something, I went for a short walk and the slight discomfort disappeared. Hope you tolerate it as well.

    Tina, that is good to hear! Two more days and you should start to rebound.

    Peg is totally right about the small and frequent meals. I have found that small protein snacks [hard boiled eggs and yogurt smoothies in particular] are working really well for me. Haven't gained weight in spite of the steroids. Staying well is really hard work.

    Hope to hear from Bubbles soon.
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  • prayer
    prayer Member Posts: 77
    edited September 2005

    Hi all I started AC last friday after much debate and waiting around as to what regimine I should pick. The first few days after my treatment I felt really bad. Couldn't get over how much like morning sickness it felt but add a really bad headach that went on for days and days and days.....I kept telling myself "oh it really isn't that bad, it's in your head." I have a high threshold...normally. I felt like such a whinner. So now it is 1 week past treatment and I feel normal. I look back and compare how I feel today vs how I felt last Saturday and I think....THAT WAS NOT IN MY HEAD! I WAS POISONED! Wow I hope I recover as quickly next time. On the bright side...it could have been a whole lot worse and I am counting my blessings. Love to all!

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  • tornadogirl
    tornadogirl Member Posts: 133
    edited September 2005
    Wow, i am back from first AC and it was not bad! The worst was when a nurse tried to hit a vein on the outside of my hand and missed. I told her to try the side and she got in. Then i spoke with the pharmacist all about the me3ds to see that i got what i needed. Pretty much they gave me what that other dr said was the standard except no aloxi and more steroids than the other onc said and no kytril. Aloxi and kytril are so "expensive" they dont use them. I told them i would pay! He said, it would run maybe $200.00! i said sure. He said it was $200 extra a month. Who cares! Geeze i am not on welfare.

    Anyhow he said if I did badly after this first round on the meds they did give, then second round they would give the emend. That is the best stuff I hear from you all.

    Without your support i could never get thru this at all!

    Thanks. Barb
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  • Pharmmom
    Pharmmom Member Posts: 300
    edited September 2005
    Hi Barb,

    I am a Barb too! I did A/C plus Taxotere in 2003. It all seems like a distant memory to me now. You will probably lose the hair after the second treatment. It will grow back and you will be "yourself". If you did great with number 1 chances are you will do well with the rest! It is so scary thinking about doing it. Once you start, I kept a calendar of my treatments and as I finished I checked them off. It was a good visual for me. You will do great. Hang in there. Anything I can answer please message me!!

    Take Care,

    Barb
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited September 2005
    Thanks! I am so happy that it was better than I thought. The next three days will tell me more about the nausea i may get. have none now.

    Thanks Barb and you all!
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    I wish I could say I did not have any nausea....quite the opposite and the meds are working part way...At this point I am not sure what is causeing what. Hopefully I will be able to get enough to drink (sure do not want to go in for an iv!).
    Tina
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  • monkey9cats
    monkey9cats Member Posts: 47
    edited September 2005
    Day 2 after my 1st treatment so far has been rather horrible. Woke up at 3:30am & felt like a truck ran over me. Managed to make it to the kitchen because I remember reading in here to eat a few crackers before even getting up. I took my medications after the crackers then & I think I feel a bit better. I have a pressure headache - doesn't hurt just feels heavy. Can someone recomment something? Tylenol, Advil? I go back to the Dr. this afternoon to see her and get my neulasta shot and will ask her if this is normal which it probably is. They told me yesterday that your normally not too bad on the 2nd day but as I read here everyones different. Hope I feel better on day 3 & 4. Was kinda holding off on my morning coffee but I just had a cup & still feel OK. (I love my morning coffee!!!)

    Cheryl
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Tina and Cheryl,

    I hate reading that you both aren't feeling well. It was my small hope that somehow we could all manage to avoid the worst side effects.

    Headaches are usually from the Cytoxin. A good friend of mine has those each time, and takes tons of Advil. My doctor told me to take whatever I would normally take for a headache. He didn't care what, aspirin, tylenol, advil, whatever you like. Obviously, talking with your Doctor about this would be a good idea.

    I do hope that you are bothing drinking tons of liquid even though your body may not be interested. The sooner you can pass this stuff through your body, the better I think.

    Cheryl, do you have someone helping you get back and forth to the hospital today? May the day bring with it some stomach calm. Take care of yourselves.

    *susan*
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  • hopeful1
    hopeful1 Member Posts: 54
    edited September 2005
    I'm sorry to hear that some of you are having some bad days! I am on day 9 since my first A/C (assuming that I am counting correctly and that treatment day counts as day 1!) and it really has not been so bad for me. I realize that everyone is different and I guess I am one of the lucky ones. I felt a little "icky" late day 3/early day 4 - but I could still do whatever I wanted. I don't know if it helped, but I followed the advice I read here and drank HUGE amounts of water the day before, the day of, and day after treatment. When I was feeling bad - the only food that I wanted to eat was cold green grapes - and I ate plenty of them! For me - they were refreshing and filling. They also seem to be alleviating any of the constipation problems I heard about ...

    I did try and keep something in my stomach and tried to eat a little something every 2 hours or so. I am working through this and my co-workers pop in my office every so often to make sure that I am keeping up on my 2 hour feedings!

    I too am on the hair watch and trying to figure out what to do. I have a wig - but I agree with the "alien animals on my head" feeling. (Thanks for the laugh Peggy!) I am not a hat person either - but I think I may become one. I am planning a hat shopping expedition with my sister this weekend. I'm thinking some flashy hats might make this more fun. I'll check back in next week and let you know if I had any success!

    Once again - thanks. You ladies are amazing.
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  • jlpd
    jlpd Member Posts: 54
    edited September 2005

    You all are an inspiration! I went to see my oncologist Wednesday, and was given five prescriptions for meds to take...five!!! I was shocked. I was given a prescription for emend...to take one 30 minutes before treatment...and then one the next two days...good thing I have insurance--even then it cost 50 for three pills! I'll start my treatments Thursday afternoon with the hopes of going back into work on Monday (fingers crossed)...Cheryl, did you have anyone to drive you after all? My 'other half' was told by my mother that he "had" to be there...no if's and's or but's...He hates hospitals! (Ha!) No sympathy here! I can tell you I'm nervous. More nervous, perhaps about my veins not being good enough. I had a whole list of questions for the nurse and the doctor, but one question still plagues me... I asked the doctor 'how can we know this cancer isn't anywhere else?" His response...we can't. He said that with stage II, blood tests are the best indicators...but it's scarey. My poor mother has lost a couple of friends to cancer...and she is so worried. I try to reassure her that this was caught early and we're going to beat this...but I guess Mom's are always worrying about their children (even when their children are 49 years old!!)...what 'assurances' did your doctors give you? Or did they take the approach...'let's hit this as hard as we can and give ourselves the best odds we can'...this next week will hard waiting for my first treatment...but reading your experiences has been reassuring that I'll get through this okay. Thanks to all of you for being here and sharing! Janet

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  • monkey9cats
    monkey9cats Member Posts: 47
    edited September 2005
    Susan - Yes I do have someone driving me to my appointment today. The way I feel there is no way I would even attempt it. I'm having enough trouble focusing on this computer screen let alone driving. Yesterday I made it OK alone. I've eaten some tapioca putting and think I'm going to have a bottle of "boost" then more water. Is apple juice OK to drink for fluids? All I have in my house is gatorade & water.

    Cheryl
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  • jlpd
    jlpd Member Posts: 54
    edited September 2005

    I would think Apple juice would be fine...it's not as acidic as orange juice...Is your mouth sore? Chicken broth might be good too (although when it's 90+ degrees out, it's hard to think 'soup'!). Milkshakes...smoothies...icey's (partially freeze your apple juice!). I hate the taste of our water (city water)...so I plan on splurging and buying bottled water...

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Cheryl,

    Apple juice should be just fine. Whatever tastes okay is fine. I find straight water, ummmmm, unpleasant now, so I am doing 1:3 mixtures of ice tea/water, spritzer/water... Just enough to add some flavor without increasing my intake by 1000's of calories.

    And gatorade is supposed to be good too. I just can't stand it! So glad that someone will drive you today. Don't forget to bring snacks in the car with you. 70 miles, two ways will add up to more than that magical 2 hour window of time.

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Janet,



    Good for your mother telling your 'other' that he needs to be there. I bet you don't like hospitals either, and you are going! :-)



    My markers [CA 29.27] are slightly elevated and so the doctors chose to add some scans to my life. I had a CT and Bone Scan to look for mets. Nothing was found, but I haven't been given 'assurances' that I will never have them. Just that they aren't visible now.



    The waiting is horrid. Treat yourself well, do something that you find special, and before you know it, you will be fighting back with two fists!



    *susan*
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited September 2005
    Tina and Cheryl, compare your meds with my lists that great oncologist gave me! Make sure you are getting what you need and drinking lots of water and gatorade to flush it out the days after. They even gave me compozine in supository form in case i have trouble swallowing it.

    My Med list from Kaiser:

    20 MG DEx with infusion
    100 MG Azamet with infustion (a brother of Zophran)
    1 MG Ativan to calm me down and reduce nausea

    Then, to take home and take:

    1. 29 Ativan to take as needed
    2. 25 MG Compazine to take the next morning then as needed
    3. 100 MG Anzamet to take the next morning, second day
    4. 4 MG Dexamethazone to take 2, the second day
    5. Day 3-10 inject myself with Neupogen shots (or get my H or the nurses on our street to do it)

    Most of these meds are for any nausea but the Ativan doubles as a nice all around anxiety and sleep drug. I asked for Marinol (since i wanted to experiance those side effects) but they did not give it to me.

    So far, I slept like a baby and this morning no nausea even though i forgot to take a midnight compozine. At 8AM i will be taking some Dexamethazone and Anzemet and compozine too. I have to eat something first since cannot take on empty stomach.

    Anyone with nausea or vomiting, I suggest calling your Dr and getting more medication. You dont need to suffer. And we dont wnat you to suffer either!
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited September 2005

    Susan lets hope your markers are just "off" due to the treaments...;!

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  • spookybob
    spookybob Member Posts: 2
    edited September 2005
    Quote:

    Cheryl,

    Apple juice should be just fine. Whatever tastes okay is fine. I find straight water, ummmmm, unpleasant now, so I am doing 1:3 mixtures of ice tea/water, spritzer/water... Just enough to add some flavor without increasing my intake by 1000's of calories.

    And gatorade is supposed to be good too. I just can't stand it! So glad that someone will drive you today. Don't forget to bring snacks in the car with you. 70 miles, two ways will add up to more than that magical 2 hour window of time.

    *susan*



    Just want to add a quick suggestion. Try "Vitamin Water" if you can't stand regular water. It's flavored and just a tiny bit sweet -- not gross-sweet like gatorade. I developed an aversion to water while on chemo -- my husband thought I was nutz when I admitted the thought of water made me gag. In fact, there wasn't much I could stand to drink by the time I switched from AC to Taxotere. I finally tried Citrus Vitamin Water and didn't have any problems. It's available in most grocery stores now (at least in Oregon) and runs about $1.25 a bottle. Before I found that, I was getting really dehydrated from my disinterest in drinking, so it was worth the money for a couple of months. --mimib
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    I did not get all of those drugs. I was supposed to get emend (they gave me one at the time of treatment) then sent me home with just compazine! I had to get some suppositories of Phegegran.

    I do not know if it is due to the fact that I am at the "free/low income clinic" or not.

    THey are getting most of my meds at the actual doctors donated through the pharmacy companies. THey should have the emend for me to take home next time.
    They gave me decadron, ataivan and emend before infusion. THey gave me no warning so I was not drinking more water then usual. That in itself may have made a difference. I also have stomach trouble anyway so this did not help it.
    Tina
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Hair Update: Day 10

    Though I am shocked to be discussing such things, my armpit hair is gone. Guess the head is just days away.
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    Susan...

    Now that is something I would not mind to be permanatly gone!...LOL Gotta look at the bright side of things ...no more shaving them for a while!


    Tina
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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    I cant wait for my leg hair to go!

    Day 4 today, feel good..

    Hope everyone has a good restfull weekend
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  • monkey9cats
    monkey9cats Member Posts: 47
    edited September 2005
    Susan
    My medications are:

    Chemo - Epirubicin/cytoxan 4 doses
    - Taxotere 4 doses

    Medications are:
    - Zofran 3 times a day every 8 hours for 3 days
    - Compazine 10mg every 6 hours when needed
    - Decatron 4mg 2 pills in am - 2 pills in pm

    Boy yesterday morning I felt soooooo horrible!! Had my 1st treatment Thursday morning at 9am and felt pretty good after that but wow yesterday was terrible. I had my friend come pick me up about noon to go get my stitches out, Dr. appt with my oncologist, then my neulasta shot. By the time we got to town I wasn't feeling too bad. Had to stop drinking my water because of the travel and I was afraid of peeing in my pants!!! Not too many gas stations between towns! I felt a little sick every now & then but no big deal. When we got there she kinda chewed my out for not taking the compazine as well as my other pills. She said nausea is easier to control if you nip it in the butt!! I'm not a pill taker & I guess a little scared of taking too much. I took the compazine and did feel much better. Every morning since my husband passed away I get a tingling and light headed right above my eyes. My regular doctor a year or so ago told me it could be stress or maybe sinus. Well yesterday when I woke up my head felt like it was going to explode from the pressure so I told my Onc about that & she gave me some pills for sinus. Seems much better this morning. Actually I feel pretty good this morning but I'm not holding my breath!!! She said it can be off & on for up to a week. I guess now I'm going to wait until the bone pain from the Neulasta shot to kick in. I asked her what to take for that & she said anything for pain. In fact she said I may have to resort to my surgery pain pills. She said it's normally in the sternum & lower back. Like the chemo she said everyone is different. Boy at least I can read the letters on my computer this morning...yesterday morning I couldn't.

    Cheryl
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Cheryl, I am so glad that your doctor helped you figure out how to feel well. [laughing here about the bathrooms along the highway- hadn't considered that problem!]

    This taking drugs all the time is new for me as well. But, I am being a good doobie and taking whatever they tell me to. Did make the mistake of reducing the stool softener after a week, and let me tell you, I won't make that mistake again!

    Tina, good to know that you too have come out on the other side.

    Would be nice to get a few more updates... have we heard from bubbles or prayer yet?

    *susan*
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited September 2005
    Hi all! Well, on the third day after AC chemo #1. Still feel fine, no headache, nausea, tiredness. I drank about 1.5 liters of water last night so I was up all night urinating but it cleaned out my system anyway and i am no more tired from the experiance.



    I have been faithfully taking my meds, drinking and eating what they said to do, and taking Senna and Citrucel powder or Benefiber in my water and soups to prevent any constipation.



    Had to have my morning coffee but started to get acid stomach so I fast took a TUMM and ate some oatmeal so I could take my DEx and Azamet and Compozine and Ativan (have to take em with food).



    Can you tell I want to avoid nausea no matter what!!!??? lol.



    I am in good spirits because after all my countless hours of grueling research and hours talking to and paying several outside oncs to give me more information, plus my fears around how the chemo would affect me, I can now simply "relax and ride the chemo train" experiance and no longer feel I have to beat my brain anymore trying to scrounge for "more and more and yet more" information.



    Also I was able to do all my research and this led to finding I had made the right choices for myself regarding the type and timing of my chemo and this takes a huge burdon off my mind. My poor mind is able to relax now.



    Being able to make informed choices based on my research, clinical trials, and oncs opinions, was the key for me.



    Therefore, now, actually doing the stuff is not as big a deal.



    We will all get thru this and I thank you wonderful people on this board for your help.



    I offer all my support to you, my hard won knowlege, and help if you ever need me. just ask and I will respond to anyone here. I will share everything I learn to make it easier for you guys to get thru this.



    You are all beautiful people and I love you all! (and it is not just the Ativan talking either!!!!LOL)
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  • marg1
    marg1 Member Posts: 73
    edited September 2005

    Hi there, 38 year old. I started chemo on 9/9, 2.5cm left breast, had a bil mascetomy (my choice), tissue expanders 1/18+, ER/PR+, Her2 +, I am being tx at MD Anderson in Houston. I am also having AC x 4 doses every 3 weeks, then taxol, herceptin for 12 weeks and then Herceptin for 1 year after that. It is nice to know that someone is getting the exact tx that I am. I was suprised at my first week after. Only some nausea, fatigue and consitpation. No problem. Nothing compared to morning sickeness. I hear that it gets worse as your progress it that true? When does our hair fall out? Freaking out about that. How do the kids take it? Any suggestions for that. I have a 5 and a 8 year old girls that love to do stuff to their hair and mine.

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