Starting chemo January 2009?

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  • ddlatt
    ddlatt Member Posts: 448
    edited April 2009

    re: NEULASTA and what i wish i had known four months ago when i started chemo

    yesterday i had the neulasta shot (had chemo #7 - taxol -  two days ago) and told my nurse how awful i feel the morning after the neulasta shot and then how completely horrible i feel once the taxol bone pain kicks in 2 days later. she told me to take a whole lortab (hydrocodone) when i got home and keep taking a whole one every six hours for three days, even though the night. this is completely contrary to what my doc told me i should do, but to hell with him, i've been in such miserable pain for four months. so i followed her recommendations, and this morning i woke up with NO PAIN AT ALL from the neulasta. for the past four months i have been waking up and crying from the pain after neulasta. so now i'm anxious to see if this prevents me feeling the bone pain from the taxol. if so, i think i should take a full page ad out in the new york times! :)

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  • PLUTZ
    PLUTZ Member Posts: 133
    edited April 2009

    ddlatt-is that a prescription drug? After what I went thru last week, I'll try anything. I was in pain the whole week but was told the taxotere also can cause pain. This was the worst so far.

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  • ladyjane54
    ladyjane54 Member Posts: 192
    edited April 2009

    ddlatt:  I would also like some more info on the lortab where do you get it?   Is it prescription?  I did not have too much trouble with pain from the neulasta shot, but on day three after one taxol tx I was waking up all night with pain and been experiencing pain all day today.  Took some tylenol which seemed to take the edge off, but did not get rid of it completely.  I am asking for info now in case it gets worse with each treatment. Did you find that to happen?  Are you still getting neulasta with taxol?  My dr. said I would not need it with taxol.  I had three hospitalization because of low counts so that seemed kind of strange to me since Taxol also lowers counts right?

    Shockedat39:  So happy for you being done.  I could feel your excitement right through the computer. Can't wait to be there with you.   What's next for you?

    Catherine: Had the same problems eating as you mentioned during A/C tx .  Could not eat anthing because of mouth sores, thrush, metallic taste or just plain sick, but that has changed with the taxol.   I do not understand why because I had steriods with A/C also so even though we are calling them the steriod munchies Is it really the steriods???

    Lisa: Rootbeer floats sound good.  We usually do them at the lake in the summer so they bring up good memories for me.

    Well I am not feeling too bad but as I said some bone pain and I am a little tired today.  If this is as bad as taxol gets it should be a breeze!  Of course I am trying to not get my hopes up.

    Another beautiful day here but I have not been able to get out.  Too painful to walk.  Hopefully tomorrow will be a better day.

    God Bless.

    Patti

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  • jillyG
    jillyG Member Posts: 401
    edited April 2009
    Eadsla - I don't need rads, just chemo and Tamox.  I had a mastectomy and the tumour was not close to my chest wall, it was way out in the breast. 
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  • ddlatt
    ddlatt Member Posts: 448
    edited April 2009

    plutz and ladyjane - yes, lortab is a prescription drug. it's a heavy-duty pain med. it's the med i was given after my bilateral mastectomy. on the bottle it says "hydrocodone-APAP 7.5-500TA." taking it every six hours means i'm sleeping a LOT and feeling very drugged and high and happy. :)  but i have absolutely NO pain from the neulasta. it makes me want to cry with relief.  i just can't believe i lived with all that pain for four months unnecessarily.

    ladyjane, yes, i still get the neulasta with taxol to keep up the white blood cell count. i begged my doc to not give me neulasta once i got on taxol, but he said it's just as important during taxol as during AC to keep up that white cell count. and yes, when i started taxol, i would get serious leg bone pain starting day 2 after taxol treatment, unbearable pain. what has been the worst for me on taxol is the neuropathy - the horrible tingling and itching in my hands. my doc wouldn't give me anything for it, but when i was just too much to live with, i was given a prescription for atarax (hydroxyzine) by the doc on call (so glad my doc was on vacation). that took away the itching and tingling completely. i was taking it every four hours for weeks at a time. i still had numbness in my feet, but that never bothered me too much.  since this last taxol 2 days ago, i don't feel any neuropathy. i'm wondering if it's because of the lortab.  one thing that did help with the itching was to keep my hands under really hot running water. but the atarax really was the answer. 

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  • nandy1975
    nandy1975 Member Posts: 18
    edited April 2009

    HI everyone, i started chemo in January 2009 as well and wish i had seen this thread! I just came across it a few days ago. It would have been great to be going through this with someone else. Anyway, i had four rounds of AC (which sucked but is over!) and now i have had 6 out of 12 weekly Taxol treatments. I have to say i have had almost no reaction to the taxol at all. The big exception so far is have been NOSE SORES! I havent seen many people mentioning them-just wondering if anyone else has had a problem with this? I am in a clinical trial and may be receiving avastin-wondering if this is causing sores? I have tried prescription bactroban but it hasnt cleared them up frankly.

     I received Neulasta with AC-again no problem (i know i am very lucky)! I am sorry to hear how bad it has been for so many of you. My doctor does not give me neulasta with the taxol. My counts have been fine.

    I believe hydrocodone is just Vicodin?

    I have 6 more treatments to go! I have to have rads too but at least this phase is almost over!!

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited April 2009

    Nandy1975-Glad you found the Jan. Jewels. The thread has been a great support to me. You're right about AC! I'm also on the Avastin trial and just did Taxol #8/12. I've had a bit of increasing neuropathy in feet, and my "bad" arms seems to be swelling more. Since my premeds have been decreased I've had less body aches and depression on the 2nd day after tx. My nose has been bloody when I blow (TMI-sorry), but no sores so far--I hear that may be an SE of Avastin. So far I feel like I'm probably getting the placebo. There's another thread here on the trail under Just Get Me through Treatment.

     Anyhow, good luck with the rest of the Taxols! I'll be doing the rads too I hope by the end of May.

    kim

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited April 2009

    Hi Jewels--Lots going on!

    LadyJane-Glad your 1st Taxol went ok. Hope the leg pain goes away. My body aches kick in on Sunday (tx on Friday), but hasn't been as bad since they reduced my premeds. I was thinking the same thing about the steroids--never had the munchies during AC. Also, I'm going on one of the ALs after chemo, but don't know the difference between the different ones.

    Plutz-Hope you're feeling better. This last tx was the 3rd in a row where I've shared the row with a woman who's recurred. The last one has had mets for 10 years. I felt both inspired and scared.

    Eadsla-Great to hear from you. How many more rads do you have. Hope the fatigue gets better.

    Ddlatt-Get news about the video. How exciting! Glad to hear you've hit on the right drug combo for the Taxol pain. What a relief that must be.

    Lisa-Glad you got some rest this wkend. Heard from my family in San Pedro it's been beautiful there. Warm up north too--I need to get some ventilated hats. I haven't been able to figure out the scarf look.

    Well--DD is kicking me off computer to finish a report for tomorrow. I'm doing ok after #8/12 Taxol. Had ups and downs this weekend. Long story. gotta go daughter peering over shoulder.

    love, kim 

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  • YearoftheHat
    YearoftheHat Member Posts: 243
    edited April 2009

    I would post in response to everyone but do not have the mental energy to right now.  I am feeling a little better after an evening nap.  I felt like c-r-u-d yesterday.  Had no energy, my sight was impossibly blurry and my memory is for poop.  I was starting to wonder how I would make it through the next 5 weeks.  Early in the day I was determined to do some things and just ended up sitting in a stupor most of the day.  Maybe it was those damned peaches.  I did not take hydrocodone and maybe I should have.  I'm going to eat 8 work hours and stay home and have a Nancy day today.  Brent and I did clear out a room where I could stretch and workout.  I suppose moving all that stuff early in the day wiped me out.  Getting tired of the limitations!  But I have that nice little space now and plan to sprawl to my heart's desire.

    Another wknd down.      

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  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited April 2009

    Year of the Hat---sorry you feel like c-r-u-d.  When do you have tx?  I hope you have a nice Nancy day.

    BKim-  I almost went bald on Saturday.  I was in a gymnasium in the morning and it was hot all that day.  I chickened out at the last minute.  Good luck on the ventilated hats.

    I hope everyone has a nice week.

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  • PLUTZ
    PLUTZ Member Posts: 133
    edited April 2009

    good morning ladies. I'm almost back to normal. The diahrea is about gone but I still have the stomach cramping. I'm going off the augmentin today and see if thats the problem. It said it was a side effect. Still not sleeping well. Been up since 3 this morning.  I am trying to get the fluids in me, still not much of an appetite. Well, gotta run some errands. All of you have a nice day.

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  • ladyjane54
    ladyjane54 Member Posts: 192
    edited April 2009

    Checked out my medicine cabinet and Nandy you are right.  Hydrocodone is vicodin.  I had some left over from surgery and it worked like a charm last night.  I slept like a baby with no pain.  I hear it is addictive though so I will only use it when absolutely necessary s I have an addictive personality.  So far this a.m. I feel okay.  Slight pains but nothing I can not ignore.

    Ddlatt:  Meant to tell you I order a couple of those Buffs and I love them.  I am going to go back and order a few more.  They are very comfortable, light weight and EASY.  I also ordered one of the cancer survivor ones and I feel like people don't stare at me as much.  Might be my imagination.  Anyway if you purchase the survivor ones the $ goes to cancer research so that was also a plus.  Anyone looking for head covering for the summer should check these out.  They have UV protection even.

    One week back to work and I have had a stuffy nose and cough all weekend.  I guess my DH is right that place is not good for me.  Only 6 more weeks of school though so I think I can make it. 8 more weeks of treatment so they will both be ending about the same time.  Suppose to go to a conference this weekend with the staff from school in Ocean City.  I have treatment #2 on Thursday and we leave Friday come back Sunday.  Hope it is not a disaster.  Going to be doing a lot of sitting in lectures so should not be too bad...

    Yearofthehat:  Sorry you felt so awful this weekend.  You have 5 more treatments right?  What day of the week do you have your tx?  Does anyone know if you are doing weekly treatments it is possible to miss one or postpone it a few days?  Gonna ask my doctor on Thurs. but just wondering as I want to fly to Texas again at the end of the month and I would miss a Thurs. treatment but could have it on Monday instead if he'll let me.

    Was out walking on Sat. and it was warm and I started to sweat under my hat so I pulled it off and let my head cool off.  Not as brave as it sounds though as I was in an isolated area.  Just me. Went to get pizza with DH and DS after church on Sat. night and their was a "sister" their doing the bald thing.  I was very proud of her.  Might try it myself one day. 

    Well gotta go. DS just called and forgot his Gym uniform so I have to run to the school with it.  Always something.

    Have a great day Jewels.

    Patti

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  • YearoftheHat
    YearoftheHat Member Posts: 243
    edited April 2009

    Patti and jrgolomb - Thanks for thinking of me.  tx is on fridays.  Yes, I have 5 more.  I think I'll just have to accept the slow pace until I am done.  I am not sure if it's OK to postpone chemo a few days but I was so fatigued last time, I was tempted to reschedule just because I didn't feel up to it.  I just have to focus on getting better and get through the days as well as I can. A walk might help if I can get up and out.  It's gorgeous here today.

    Patti I hope you get to go back to TX.  

    PLUTZ - sorry you aren't feeling well but it's good to hear the diarrhea is better.  Hope you can get some rest.

    I checked the mail in a super short platinum wig Saturday and my neighbor looked then just looked away, as though she did not to see me.  Oh well. It's what I had on and I didn't want to change head gear just to walk to the curb.  I am going to get some false eyebrows (nu brow) and some better lash adhesive.  The false lashes help a lot if I can just keep them on somehow. 

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  • ktym
    ktym Member Posts: 2,637
    edited April 2009

    Jewels: picked up the worst cold this weekend.  Those aches and pains don't help the residual taxotere neuropathy and pains.  I'm walking around like an old lady.  Feel like I'm on chemo day #5 right now.  Brings back some very bad memories.  So, wanted to stick my head in and say I'm thinking of you all and very sympathetic to those still doing this.

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  • nandy1975
    nandy1975 Member Posts: 18
    edited April 2009

    LADYJANE-glad to hear the vicodin worked!

    Kim, funny you mentioned being depressed on 2nd day. Do you think this is a SE of the taxol? I feel extremely depressed the day after tx. Obviously we have a lot to be depressed about but i feel like this is something more. My husband says i am definitely not right the next day or two and i feel like that too. I also thought maybe it was a SE of being pushed into menopause? i am only 33 so i wasn't anywhere near menopause but now my cycles have stopped, so i can only imagine what that's doing to me!

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  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited April 2009

    I feel depressed about a week after tx.  Then, even though the decadron gorge has worn off, I eat.  I need some sort of cleanse and I don't like gaining weight at the rate I am gaining. 

    Berkeley Kim-you mentioned some sort of cleanse on this thread but I can't remember what it was.  I wonder if I should try that-as a way to get me ready for the next tx.....

    Nandy-I was just the opposite for a while.  My cycle wouldn't stop.  I had to go on provera for one week and that slowed down me down to a gradual stop.

    Hope all had a great Monday.

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  • Renrel
    Renrel Member Posts: 497
    edited April 2009

    I am on Taxotere not Taxol but the are closely related.  I also get the munchies.  I thought I was doing better this round, at least eatting stuff that was good for me like peanut butter or cheese instead of candy and cake, but I made brownies yesterday and they are all I want to eat now.  At least I did doctor them a bit with Hemp Power, Flax Seed and Wheat Germ, so its not all bad.  And I definately feel there is a depression aspect to the treatment.  I get what I describie as a sadness inside me which does not feel like it is really attatched to anything.  It helps to know or at least believe that the symtoms are chemical rather than "real."  

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  • PLUTZ
    PLUTZ Member Posts: 133
    edited April 2009

    Renrel-I'm also on taxotere. Can you taste anything you eat? I lost all my taste buds. Nothing tastes good. I was eating a lot of chocolate this last week. Now it tastes terrible. I don't bother eating much. Its a waste of time. I'm just keeping the fluids in me.

    By the way ladies, I am feeling much better. I took a sleeping pill last night and slept all niight. My stomach cramps are gone. I quit taking my meds. I think that was causing the cramping. I don't have a lot of energy today, but I'm going to clean my house as much as I can do.

    Hope all of you have a good week.

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  • Renrel
    Renrel Member Posts: 497
    edited April 2009

    Plutz - My taste buds have gotten worse with each treatment but I can still taste a bit of somethings.  Dark chocolet , licerice (though that is a bit of what my mouth tastes like), and hot sauce all make it through to some degree.  But really sweet, pure sugar tastes, like a snickerdoole cookies taste like total crap.  I have finally trained myself to put to down the snack that tastes like nothing after a bite or two rather than just finishing it. 

    I have gained 10 pounds in 12 weeks and my onc and nurse seem to feel that is no big deal or even good.  I was not overweight before hand, though like most I would have liked to lose 10 pounds.  I hate this rounded belly I have developed. It looks so nice with those two round hard lumps on my chest.  I am grateful for it on nuelasta day though.  I take the shot in my belly and it barely  hurts at all, at least with me doing my deep breathing while they give it.  

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  • shockedat39
    shockedat39 Member Posts: 252
    edited April 2009

    Hi Jewels,

    Day 5 after last treatment and I'm feeling pretty good.  It took me until the end to realize that if I drink lots and lots of water it helps ward off some of the more prominent SEs.  The only thing different this time is that I've had a few dizzy spells, mostly when going from laying down to sitting.  Other than that, I think I'm over the worst of it and looking VERY forward to moving on.  The port comes out a week from Friday and I'll probably start Tamoxifen on that day too.

    I thought I'd be very nervous and scared to be off chemo but I have an overwhelming sense of relief and hope.  I'm looking forward to getting myself together this summer, losing the weight I gained since chemo, getting my hair and eyebrows back (not to mention the toenails that are about to go).  Just feeling and looking better by the end of the summer.  I can't wait for everyone on this thread to get here with me.

    I hope everyone is ok today.  Feel good!

    Diane

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  • kt57
    kt57 Member Posts: 425
    edited April 2009

    Renrel: Your words - "A sadness inside of me which does not feel like is attached to anything" -- me too .. kind of a hollow disconnected feeling.  Have thought about support groups or therapy -- just to reconnect in my head...   I have friends/associates in the mental health field - who have offered to help -- seems that would be hard to do with someone I know well -- might seek out someone at the cancer center where I get radiation -- heaven knows, I'm going to be there often enough...

    Re: weight gain:   Taxotere cause fluid retention - Some of you might be experiencing that.  My ankles have disappeared into puffy balls every round beginning with the third.  Think the steroids help get rid of the swelling during the chemo infusion time, but then two weeks later --- balloon time.  I also get "central" retention -- means exactly what you think -- I look five months pregnant.    Oh and my knees look pudgy too.  What a pretty siteI am ---- did I mention my ckeeks!!!   If it happens this time ( my LAST!) I think I'll ask for a diuretic to get rid of the fluid,    Told my onc, I didn't care about the hair loss, but am really quite fond of my ankles! 

    I have a Dexa Scan on Fri - to check bone density before deciding on tamoxifen vs. AI.   

    Weather here is cool and damp -- Spring in WI !    Supposed to get better tomorrow.  Hopefully I will be too - Day 6 after FINAL chemo -- crawling out of the hole has been a little slower this time.

    Hang in their Jewels -- it has been a long road since January -- each day we are closer to the end of all this.....  

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  • misty123
    misty123 Member Posts: 242
    edited April 2009

    Hi Ladies,

    When do the s/e finally end. I also have the central retention kt57 spoke of and I am 1 month post chemo, i look like I am pregnant and I have never had a noticeable stomach, not washboard hard but no protrusion, how long does that take to go away or should I be asking for a diuretic to lose it, all other places are still in pre chemo stage, kinda funny

    I am glad i don't have the munchies anymore and I find myself eating much more healthy mostly trying to keep my body in top shape for this recon bit. I had prop mast 4/9 with t/e placed and it is wierd to see the work in progress, i think I look like Frankenstein but the PS says they look great so far, not to much pain if I keep my meds going in on schedule which I do and rest as much as possible which I am enjoying for the moment, I want to heal up as soon as possible so I can return to work i miss the daily grind of it all and the friendships I have there. I really don't like my coworkers to visit me at home while I am sick, being in the nursing field they want to come and treat me like a patient instead of a friend so that is a little to much for me, phone calls will do just fine.

    My son Maillol is doing better with his new liver and begging to come home (good sign) he is bored to death in the hospital now that he is awake and alert, hopefully it will only be another week, 2 at the most they are giving him rehab trying to build his strength back up and improve his nutrition so he can heal better and faster, thanks to all for your prayers and support when I was worrying myself sick over his condition, this board is the greatest thing that came out of my BC dx and i do appreciate the caring and sharing we all receive here, good healing to all Melissa

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  • Alo123
    Alo123 Member Posts: 308
    edited April 2009

    Great news Misty123!!!!! 

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  • shockedat39
    shockedat39 Member Posts: 252
    edited April 2009

    Misty123, that's wonderful news!

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  • rsben70
    rsben70 Member Posts: 137
    edited April 2009

    hi all

    great news misty123

    i am finally feeling better after my first AC tx. i don't know if i was so worn down from taxotere and gemzar that it hit me harder but for a week i was nauseous, even with meds.  i just felt horrible. i am really dreading my next dose on 4/29.

    hope everyone is well, hugs

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  • ktym
    ktym Member Posts: 2,637
    edited April 2009

    Misty, I wondered how he was doing, happy to hear that he is doing so well.  This summer sure will be better then this past winter was for both of you

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  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    Great news Misty!!!  on all fronts! 

    I, too, wonder when the "bloating" will go away.  Even my ankles are fat at this point.  ack!  I really only gained weight this last cycle.  I have eaten so much this last week!

    Today is my son's b'day and we're going out for dinner (his choice) and tomorrow I start eating healthy again!

    Alot of us Jewels are finishing chemo but let's stick around and cheer on our fellow jewels as they finish up!!!!
    Lisa

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  • nandy1975
    nandy1975 Member Posts: 18
    edited April 2009

    Diane, thats wonderful news! i cant wait to say i have had my last treatment and my port is coming out! I will be curious to know how the tamoxifen is-it's my next step too.

     Renrel, i have the exact same problem with the taste. Basically no taste or gross taste and its definitely worse with sugary sweet things. I feel so moody though and frustrated.  My husband made a sarcastic comment about something this AM and i just started to cry. Probably an overreaction. I feel like breaking something sometimes. Then it goes away, for some reason it hasn't occured to me until lately that maybe its chemical or hormonal.

    rsben70-A/C was tough. Taxol is definitely easier. How many rounds do you have to do? The only advice i can give is to see if you can get something like ativan to help you "deal with the dread", then take it as much as you can! Especially the day of treatment, it also helps with nausea. This is a short-term problem and there is nothing wrong as far as i am concerned with medicating yourself right through it if necessary. You can be in a chemo fog or you can be in a drug fog. I would choose the latter ;) Also, what premeds are you getting? Maybe you need to change something. For each A/C i was given premeds as follows:

    Emend, decadron, zofran at home the morning of and also in my infusion.

    Same thing on day two and three following infusion, compasine and ativan as needed. I didnt feel that the compasine worked though so used zofran a few times during the day-very constipating though so you really have to stay on top of that. Also, not sure if you are getting emend but i understand its extremely expensive (i think about $600 per round) so might not be a doctor's first choice but you might get it if you ask for it. Despite all this there were still a few times i just stayed in bed all day but overall i made it through with these drugs and just planning letting myself off the hook. Like i said-it's temporary and all things pass. I got to the point where i knew if i got treatment on Wed i would feel a lot better by Monday and basically "normal" on Wed again. Then i would get a week off and do it again the following Wed. Despite not feeling well i thought it helped to at least know what to expect of myself. I will be thinking about you.

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  • rsben70
    rsben70 Member Posts: 137
    edited April 2009

    nandy1975 thanks, i am taking the same premeds as you,  i had 8 tx of taxotere and gemzar before i started AC and the gemzar made me so sick the week b4 my 1st AC my wbcs dropped.

    so i still have 3 ACs to go.

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  • nandy1975
    nandy1975 Member Posts: 18
    edited April 2009
    rsben70-1 down 3 to go. That's all you can say. I don't envy you but hang in there. i think it was much easier to get the A/C out of the way so to speak, then to do the easier Taxol. I will keep you in my thoughts :)
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