Starting Chemo July 2013

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  • lark
    lark Member Posts: 61
    edited September 2013

    Dreadlx- so sorry that you have to go through this, especially when you're caring for your parents. I hardly ever took even a Tylenol before all of this started. I find myself gagging whenever I have to take all these pills. But I have learned that i have to take meds sometimes to help my body get through this. If you need to take something for nausea or a Pepcid for indigestion - just do it. It will be harder on your body if you start vomiting or can't eat. Some of our side effects, like constipation, can get SO MUCH WORSE if we don't take the pills so don't avoid the meds. Some people have said that sinus meds have helped with the headaches. Not sure if you're getting cytoxan, but that can effect the sinuses. And remember that you ARE doing the right thing to get treatment. So now use your defiant powers for good and fight hard girl! Feel free to vent here whenever you like. It's kind of therapeutic. I'll be praying for you and hope you have someone to help you with everything.



    So glad to see the progress we're all making. Many of us are halfway through! My first Taxol starts tomorrow and I'm scared. My mo and the nurses make it sound like its unusual to have severe pain. I sure hope they're right.

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  • Mellie289
    Mellie289 Member Posts: 156
    edited September 2013

    Dreadlx - my heart goes out to you. You have so much on your plate with caring for your parents too. 

    I second what lark said. I've never been one for popping pills, but I learned my first cycle to just take them! I was trying not to take too many meds and waited on my nausea pills (Zofran) - by the time I realized it was getting worse, it was too late and I was throwing up. This was 7 days after chemo when I figured I should be getting better and not be so wimpy about taking meds. My second cycle, I just took the pills for the week after chemo (day 2-9) and didn't have any problems. I also was more proactive with the stool softeners and laxatives (plus paying close attention to amount of food before, during and right after chemo) and I didn't have the discomfort of the bloat and constipation in cycle 1. I consider taking the meds as part of the necessary evil that is chemo. They aren't separate! The meds are there to get you through so you can be well enough to care for your parents. I'm sorry about your hair. I can't imagine how long it took you to grow it that long.

    Starting Decadron today for chemo #3 tomorrow. I'll be happy to say that I'm half way through soon. I don't think I'll consider it half way tomorrow when the infusion is done - more like when the symptoms from this round passes and I'm ready for #4. I woke up last night around 1 AM and couldn't fall back to sleep without help - I think I'm stressing, but I haven't really slept well since my diagnosis. I thought things would change by now. I hope when this is all over, I can sleep through the night again.

    Good luck to those getting treatment today - Rambo with the last AC and angelanature with taxol! And good luck with your taxol tomorrow too, lark. 

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  • Hannariggs
    Hannariggs Member Posts: 137
    edited September 2013

    Hi All, 

    Angela and Lark, I think we are on the same Taxol regiment(12).   I ususally would start today, but onco was on vacation so postponed it until tomorrow.  Then next week will return to wednesday.  From what I have heard, the 12 low dose treatments are suppose to be easier. I guess we will find out.......started my B-6, B-12, L-glutamine, shallacked fingers and toes and will be icing.  So I guess I am ready.  Tonight starts the massive steroids.  Blah!  

    Does anyone that has had a lumpectomy get breast pain?  It has been 4 months since the removal of my 1cm tumor and just yesterday started getting stabbing pains in my breast.  Surely can't be cancer because after the AC I don't think anything can be floating around. Will ask the onco tomorrow but was just wondering if anyone else was having issues.  

    We are on the downhill side of things sisters.....Hang tough......

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  • momx2
    momx2 Member Posts: 109
    edited September 2013

    hannarings , I have pain every and then but nothing that s opted me to bring to drs attn

    hope all are doing well {hugs}

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  • LanaM
    LanaM Member Posts: 142
    edited September 2013

    OK - now I'm wondering why I'm going to be doing 4 DD tx of Taxol, when it sounds like so many r doing 12 weekly taxol??? Don't get me wrong I'd much rather do 4 & get it over with, but if the recurrence rate is better with 12 I'm wondering?? Anyone else doing the 4 DD T after 4 DD AC? Anyone know why either is chosen? I know I mentioned this before, but I'm also really worried about reaction to T, steroids and neuropathy. I got thru AC pretty easy comparatively. Trying to stay positive and strong and just get through this! Lana

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  • 2bluestars
    2bluestars Member Posts: 89
    edited September 2013

    Lana, I asked my mo that same question.  He said I am getting the same amount of medicine as the 12 week ladies are, just in a larger doses; dose dense because my cancer is triple negative.  I'm scared to death.  AC was pretty easy on me, I'm scared that the 4 dd taxol's are gonna make up for my not so bad ac.  First taxol is on 9/13.

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  • Rambo50
    Rambo50 Member Posts: 140
    edited September 2013

    Dreadlx - I'm just blown away by the huge burden you're facing on top of BC :(

    I'll be praying for your strength and that you get some assistance while you fight YOUR own battle {(hugs)}



    Lana - I'm also dong DD ACT then DD Taxol. I heard/read the combo, full regimen DD, yields a slightly lower recidivism rate - at least my fingers are crossed!!!



    Spoke with my MO today about reduced efficacy of my DD treatment plan since I'm now a week behind (3 weeks b/n AC #3 and #4). He said it was hard to say, but likely minimal :):):)



    Got last of the red devil today - hallelujah!!!

    AND, got my brother's BRCA results today - he's negative! Such GREAT news since he has two daughters. Whew! Major relief! Now we wait on my son's results - he came with me today and had blood drawn. We should know in two weeks...



    Soriya - just hate you're still having lack of appetite and fatigue issues :(. Hang in there girl!!!



    Taxol ladies - I noticed some of you are "icing" hands and feet... Details, please?



    Oh, and I saw my gyn today for an odd vulval symptom - turns out its nothing serious - AND to schedule my ovary removal. SO excited this can be done in conjunction with my prophylactic mx, in December, during my break :)



    Whew!!! Time to try and rest this steroid-loaded body ;-)



    Love to all,

    Lynn

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  • Cherri3
    Cherri3 Member Posts: 31
    edited September 2013

    Hi Hannariggs, I am also experiencing the same stabbing pain at breast where the wound is. I had a lumpectomy three months ago. Glad that I am "normal", I was thinking too, if it is the cancer.

    Congrats Rambo(Lynn)! Yeah...that's a milestone, last AC. Thanks for sharing some good news in your family.

    Hi 2bluestars, please do update on after your 1st DD Taxol. I am one of them who has just started with my 12 weekly Taxol.

    Hi Karkar06, hello and it is not great to meet you here but we have each other in the same time zone. My 1/12 weekly started on 2 Sept. I am having the tingling feeling on finger tips and toe tips. Is that neuropathy? My two thumb nails have stripes of black now.  I am worried that nails will start to fall off?

    So far I still my lashes and brows after my 4 rounds of AC. Read that they will drop with the weekly taxol :(  As if it is not already bad to have a bald head.

    Hi Mellie, I am also on pills. I told myself...eat whatever pills, just to get over this ordeal and be well again. The only thing is I have high anxiety issues.  And I will start pacing at night.  Sometimes I feel that my heart is going to jump out from my mouth.

    And for umpteen times, I cry and cry since my diagnosis. 

    Hi Dreadlx, my heart aches for you. You are a brave one! Hang in there strong ok. We are all with you. Its already so difficult, please do update us here. The support here is great!  I often do feel better reading.

    Hi Hannariggs, Lark and Angela, are we on the same treatment regime?  As mentioned, I have just started my first session of taxol on 2 Sept (Mon). Another 11 to go.

    Hugs to all...

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  • soriya123
    soriya123 Member Posts: 662
    edited September 2013

    Hello Ladies,



    Had another herceptin today, I told my nurse that I have tingling fingers, since my #3 TCH. She said if by my #4 TCH, my tingling still there, I can't coninue with TCH, they mite switch to something else. Texotere cause this tingling fingers. I have 2 more weeks till I have my #4 TCH, I hope it goes a way. She told me I can take Vitamin B complex to help with that....

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  • Cherri3
    Cherri3 Member Posts: 31
    edited September 2013

    Hi Soriya, I certainly hope the tingiling goes away. I am on paclitaxel, today the tingling feeling is much lesser. Take care...

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  • m1970
    m1970 Member Posts: 337
    edited September 2013

    Hannariggs, I got the swabbing pains for 6 years. It was more frequent in the beginning, and then sometimes would happen more when I'm under stress. The worst was my node dissection under my arm, but I haven't had any trouble with it since my scar was revised in May and they cut out all the lumpy scar tissue. I now feel it in my breasts and hips, they say its the nerves regenerating.



    Lana, I had the 4 AC and 4 taxol regimen. It's probably decided based on your diagnosis and which study protocols your doctor is following. 6 years ago they did weekly herceptin for 12 months, but now they do it every 3 weeks for 12 months because they did a study that said it was just as effective and is a lot less hassle. I don't know If I get more herceptin at one time. It may put your mind at ease knowing the science behind it.



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  • angelanature
    angelanature Member Posts: 179
    edited September 2013

    Hi All,I had my first DD T of 4 yesterday. I asked my onco why the dd?He said it has slighty better results like 2% over the 12 weekly but if i experience bad neuropathy or joint pain i can switch to the weekly prodical. I have serious arthritis in my knee from an injury(that's required multiple surgeries) and in need of a total knee replacement at 48!So joint pain is a concern as well. As far as infusion yesterday,ugh! i haven't slept more than 2 hours in 2 nights thanks to the steroids. My doc gave me Ambien but that didn't help a bit and the nausia,headache,just the same yucky feeling as the ac.They said i wouln't need zophran as the nausia is usually not an issue with taxol,well maybe it's all in my head but i totally have it.Hannariggs,i had a lumpectomy and just started having breast pain too,not awful but uncomfortable all the same.Congrats Rambo! To all getting your first Taxol good luck may your experience be better than mine ;(. Hugs,especially to Soriya and Dreadix. Angela

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited September 2013

    Dreadix I can relate to your situation. My son has a chronic disease and was in major flare when I was diagnosed. It was hard to turn off my 24 caretaker brain and concentrate on myself. Take help wherever you can get it whether it is for you or your parents.



    I went tto RO yesterday and got some conflicting info from what breast surgeon had said. So stressful. Sometimes I feel like a ticking time bomb and I'm not sure which wire to cut. Is it the red one or blue one.

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  • lark
    lark Member Posts: 61
    edited September 2013

    LanaM - I'm also triple negative and did 4 dd ac and now 4 dd T. I think the others are right that its just slightly more effective.



    So the first taxol is done and it went smoothly. Long day though 8:30-2:30. No allergic reaction so that was a relief. The nurse said she hasn't seen anyone have a reaction for a long time. The benedryl made me sleepy and a little light headed, also got Decadron, Pepcid and zofran through the IV.



    Rambo the icing is supposed to help prevent neuropathy in the hands and feet. I brought ice packs and kept them on almost constantly during the taxol drip. The problem was taxol takes 3 hours and my ice packs didnt stay very cold after the first 2 hours. Next time I'll bring more and keep some in a cooler and switch them.



    Feel ok so far. Just the typical tiredness and brain fog. My dr came in and said "you're tired aren't you?" She said my RBC and hemoglobin had dropped significantly after the last AC, but she didnt do a blood transfusion since taxol won't lower it any further. She said we should see it climb back slowly. She also said if I have neuropathy she'll want to know exactly when it starts and how long it lasts. If its just a few days we'll continue as scheduled. If its longer she'll lower the dose. I think I'm feeling just slight tingling in my fingers and toes or maybe its my imagination since I'm so aware of it! That's how my mind works. She also said to start with advil if i have any bone or muscle pain but gave me a prescription for oxycodone just in case I need something stronger over the weekend. I don't like just sitting here waiting to see how this effects me, but I don't have the energy to do much else. Gonna try to get myself out for a very short walk now.



    I'm thinking of all of you in your various phases of treatment. Especially Angela, Hannarigs and Cherri3 since we just started together. Keep me updated and I'll try to do the same. Angela I hope this gets easier for you!



    Twohobbies - I hate that you're getting conflicting info! This is so hard without the added stress. I just want to shake these doctors when they do that to us! Can we help in any way?

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  • Hannariggs
    Hannariggs Member Posts: 137
    edited September 2013

    Hi Sisters.

        Completed my first of 12 Taxols today.  All wents smoothly.  No allergies, a VERY good thing.  Have felt pretty good all day.  Not feeling tired even after the benedryl.  Came home, cleaned and went for a walk with the dogs.  Lark, do you have to take any steroids tomorrow?  I had some last night and today and was just wondering if they wanted you on more?  Checked on the breast pain and the doctor advised that it was regeneration and it may last for months to years. Exercise using your arms will also cause pain. So it could have been both, just glad it wasn't anything serious.  I am hoping to start my radiation after 8 taxol infusions, that way I could be done by Thanksgiving or Christmas.  Would also be nice to be done by the end of the year to prevent having to pay another huge deductable starting in Jan.  Would be a great start to 2014.  Always hated the number 13 now I know why..........Hope everyone is doing well.   HUGS to all....

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  • honeybunny96
    honeybunny96 Member Posts: 120
    edited September 2013

    checking in and sending love n hugs to all of you! I too finished my DD AC and now i get to start my 12 weekly Taxol tomorrow.  Scared, nervous.. you name it.  Made sure to get my Ativan all filled upWink.   Tis late and I can't think.  Very big day for me it was.  I'm, in limbo for rads so I don't know if I have to do them or not. So.. well.. because I can't think and just had an attack cat try to catch a moth in my bedroom, I think I am finally settled down that I can sleep at least for 6 hours.  Bring on the Taxol!! 

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  • momx2
    momx2 Member Posts: 109
    edited September 2013

    hannarings so glad to hear youre feeling good and that your first taxol tx went well.

    I start taxol and herceptin next week , after reading I feel less anxious .

    I too share your feelings about 2013 , its been a rough year cant wait for 2014 .

    Hugs n health to you all

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  • momx2
    momx2 Member Posts: 109
    edited September 2013

    honeybunn good luck tomorrow , hope all goes well and is uneventful .

    hugs

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  • lark
    lark Member Posts: 61
    edited September 2013

    Hannarigs - glad it went smoothly for you. They didn't tell me to take any more steroids. Just what was in the IV. Did they say why you need more?



    Do you feel anything different in your fingers or toes? I was surprised to feel this so quickly. Mine is very mild, but I do have some slight numbness, tingling. Dropped a popcorn bag twice last night without even realizing that I wasn't holding it tightly. I'll have to be careful when carrying breakables. Theres a weekly taxol group on here that I was browsing through. They talk about taking L glutamine, b6 and b 12 for neuropathy. There's also mention of Gabapentin which I'm not familiar with. Has anyone talked to their mo about these?



    Good luck today Honneybunny. Hope the attack cat let you sleep!



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  • Hannariggs
    Hannariggs Member Posts: 137
    edited September 2013

    Hi Lark, 

        I did ok the B-6, B-12, and L-glutamine.  I started taking all of them a week before infusion.  I did ok with Onco.  Have not heard of Gabaptentin.  I will have to do some research on that one and of course have it okey.  Have not had any tingling or numbing.  Just no sleep last night(yawn).  I am heading to work this morning.  Tired, but can't sit still.  They did not give me anymore steroids but nurse asked before I left if the onco had given me any for follow up days.  But he did not tell me I had to take any so I haven't.  My taste and appetite have gone with the first infusion.  Not that I mind.  I have gained 10 pounds since the start of all my treatments.  Now with all the steroids I can't imagine how much more is to come.  Still walking and planning on starting a yoga, or belly dancing class.  I know we dont have alot of control over what is happening to our bodies at this point, but have to do what we can.  Thus far, I have to say Taxol has been alot easier but will see what the next few days brings.  

    Good luck honey! I was scared too, but actually it was alot easier than all the others.  The only issue I always have is them accessing my port.  Hurts like crazy when they access it.  I use the emla cream too. I make them take my labs through vein.  Everyone says it gets easier with more infusions. Mine get worse.  Have someone go with you for the infusion and strike up a good conversation and you will forget that its the Taxol your getting.  Its just like any other infusion except it doesnt make you sick.  

    Will be praying for you and all the sisters for their infusions and as always minimal side effects....

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  • honeybunny96
    honeybunny96 Member Posts: 120
    edited September 2013

    I take gabapentin at night for the pain I have in my chest area.  It really does work to nerve block and help the pain.  without it, I wouldn't be sleeping when my swellin/pain gets so bad.  I don't take it during the day as it can make you sleepy.

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  • angelanature
    angelanature Member Posts: 179
    edited September 2013

    Hi All,this Taxol is horrifying! Every muscle in my body is in agony.I'm not kidding, i would take the red devil over this anyday. Honeybunny,i'm going to ask my onco about this gabapentin because im taking 2 oxycodone every 4 hours since wedns night and have slept very little,i just can't get comfortable.I'm glad you r doing ok Lark. I really didn't expect this,it's not neuropathy because the pain is in my shoulders,neck,and back,i have very slight tingling in my hands.I certainly don't want to scare anybody but i've been floored by this reaction,wasn't the taxol part supoosed to be easier?Angela

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  • Mellie289
    Mellie289 Member Posts: 156
    edited September 2013

    Well, TC #3 went alright yesterday and I was so sleepy, went to bed before 9 PM. Woke up to pee around 1:30 AM and all the sleepy meds had worn off and I was just feeling the steroids. No more sleep the rest of the night. Decadron again today, but I'm definitely taking an Ambien tonight or I will be staring at my ceiling all night. To me, insomnia doesn't help the healing process so I'm going to medicate it!

    I'm glad to see the taxols have started for some of you - lark, hannariggs and Cherri. Good luck today, honeybunny!

    soriya - I hope the B vitamins help. I'm scared to death about neuropathy. I hope it stays mild and is just a temporary thing.

    Sorry about the muscle aches, angelanature. I have a few days of the with the taxotere, so maybe similar to your taxol symptoms. My first cycle, I didn't sleep the night between day 5 and 6 because I was so uncomfortable and achey. I was feeling it all over, but especially in my lower back which is already prone to some muscular pain. Last cycle, I used the dilaudid prescribed to me for the neulasta bone pain and it helped a lot. I'm not sure how similar that is to oxycodone, but (as I've said before) it helped to take the edge off so I could function and sleep with help from Ambien too. Definitely didn't completely relieve the symptoms and I just had to ride it out a couple days. I hope this passes in a day or two for you too. {{{hugs}}}

    I haven't had the stabbing pain from my lumpectomy this time yet, but I did my last one over a decade ago - when the nerves started regenerating. I now have some sensation again in the area. My BC surgical site and armpit are completely numb still. I hope I get some feeling back at least in the armpit so I can feel my razor or deodorant when I 'm putting it on.

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  • honeybunny96
    honeybunny96 Member Posts: 120
    edited September 2013

    so far the Taxol went good. no reactions during and nothing other than being dopy for the day, so I slept.  I actually slept 90% of the infusion, which wasn't long enough in my book.  LOL Anyway. after I got home, I just went to bed.  I'm up because I want to be able to sleep tonight.  Will see what the week brings.  If I'm feeling better, then I'll be one happy camper!! 

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  • LanaM
    LanaM Member Posts: 142
    edited September 2013

    Boy I have a lot of catching up to do! Rambo congrats on finishing red devil & glad there was great news on your bros test! Dreadlx - sorry out have to be going through so much on top of BC - stay strong! Honey bunny - good luck with T tomorrow! Lark - hope your neuropathy doesn't get too bad! Angela - I'm sorry you're having a tough time with T - I still find it amazing how our bodies all react so differently. Don't take this the wrong way, but I hope my luck is a little more like Hannariggs! I do hope things improve for u Angela! 2luestars - u and I begin our T on Friday the 13th - let's pray for an easy time! Like Rambo I'd be interested in more info on the "icing" with T - did MO suggest this? Just hear about it somewhere? Any studies on the effectiveness? Sorry I didn't catch everyone - I have to get caught up on reading posts! HUGS to all! Lana

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  • lark
    lark Member Posts: 61
    edited September 2013

    LanaM - I originally heard about icing from a friend who went through bc and I saw it somewhere on here. I asked one of the nurses about it and she said yes, some patients do it. So I asked my mo and she said it doesn't hurt to try it. She said the ice prevents the drugs from working in that area. That's why she does not want people to use cold caps because you don't want to prevent the chemo from working around your brain. But she said she's never seen a problem with metastasizing in fingers and toes so it should be ok. I'm not aware of any studies, anyone else know more?



    Angela I'm so sorry you're in such pain. I hope you can find relief quickly.

    I hesitate to say this, but day three after taxol and Im still doing pretty good. A little achy this morning, but so far not bad. No neuropathy so far today either. Just want those starting taxol soon to have hope that it might be better! Hugs and prayers for all.



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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited September 2013

    I mentioned icing to the nurses at one of my Tx and she said my onc doesn't allow it at all because if you are going to do chemo you don't want to then try and take short cuts .....thus potentially making it less effective. I agree with lark this would be especially true for capping.

    Day 17 and went to the theatre today. Probably luckily it was pretty empty so no germs anywhere near us -yay.

    Angela sorry to hear of your rough time with taxol

    Hunnybunny glad to see you are posting again - you had gone quiet :)

    Good luck to all this week

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  • 2bluestars
    2bluestars Member Posts: 89
    edited September 2013

    Lark, I'm glad you didn't hesitate to tell us you are doing well on taxol.  I get my first on Friday, as does Lana...I know I'm glad to hear you're doing ok on it.  I'm really scared, to me it sounds worse then the red devil, which really wasn't that bad for me.  I'm hoping for more of the same.  My mo says my hair will start growing back after 2 or 3 infusions of taxol.  Really looking forward to that!

    Lana, I'll be holding your hand in spirit on Friday.  We got this!  :-)

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  • Hannariggs
    Hannariggs Member Posts: 137
    edited September 2013

    Hi All, 

        Still hanging in there with Taxol 1.  Sorry to hear your having such pain Angela!  My only complaint is having my sore throat back(which I had with AC), and being tired.  I attribute being tired to the steroids and no sleep the night before the infusion.  I went out and mowed the lawn and took a walk today ,so trying to keep active and sweat the drug out.  I did take an advil mid day but thus far am feeling much better than with the red devil.  I just hate thinking about going back again for round 2 in 4 days!  At least with the AC there was a week in between.  Seems like a pain in the butt to go in every 7 days. Grrrrrrrrrrrr.  Seems like the weeks have been dragging with the AC but now with the taxol the days are going by fast.  I think thats a good thing????  Bring on Thanksgiving.  Will have a lot to be thankful for.   Keep the faith sister we will "get er done"

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  • honeybunny96
    honeybunny96 Member Posts: 120
    edited September 2013

    I hear ya there hannarigs... wish it wasn't so soon! I liked having that week in between.  But I also like having an easier dose than 4 HUGE taxol treatments.  

    Nocompromise... sorry, I haven't been around much.  That last dose of AC took me out and threw me for a loop then I was out of town for a few days.  All caught up now.. I think.  Even though my brain reads things, sometimes I have a hard time keeping everyone seperate.  

    Had my first dose of Taxol on Friday.  I must say, that I slept through it.  If I had any allergic reaction to the drug I have no idea.  The benedryl threw me out cold.  I came home and slept the day away.  WOW! Today I was able to go out, and got some pretty toes painted along with a nice pedicure.   I sure enjoyed that.  Then I took a walk in walmart to get some groceries.  Too wet today to do anything else.  Now I'm up late because I forgot to take my bed time meds on time! OY  I must say, I like this round of chemo with the little meds that I have to take.  I'm only taking meds 1 hour before chemo to help with any allergic reaction.  And nothing after.  Whoo hooo!! Less drugs I have to take the better.  11 more to go! 

    Everyone is in my thought's and prayers and hope you all have an easy and restful weekend.  Take it easy and rest, I know that's what I'm doing tomorrow.... except we start our bowling league up again.  I'm excited for that, yet nervous.  Not many know what I have been going through.  

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