Chemo starting in December 2010

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  • sammolisa
    sammolisa Member Posts: 180
    edited January 2011

    hd - it's DD taxol over 8 weeks - every 2 weeks,   right now the pain in my legs is making it hard to rest - vicoden not helping.....

  • LoriLS
    LoriLS Member Posts: 2
    edited January 2011

    I just started chemo and I am in the crappies!  Your post gives me hope.

    Thank you!!

  • joystars
    joystars Member Posts: 95
    edited January 2011
    angel- hope everything went awesome with the photo session.. please share one or two pics with us sometime. I remember so well last September, when my very best friend and talented "hobby" photographer, took a serie of pictures of my pregnancy AND my LMX. During the photo session I wore my foobie all times, however there's one or two of me without it... just like that: single breast, big belly, huge smile. Love them!  :)

    karebear- it does make sense. I feel the same way, no matter how much friends care and how much my mum and DH are supporting me... by the end of the day they don't know EXACTLY what is it like, YOU do. Every women on this forum does. And I'm thankful for having this place to share experiences and vent my fears.... Big hugs for you all my bc sisters  :)

    hope- friends are a bless. I'm very happy to read that you have VERY good friends around you right now. It's key, I believe, in order for us to keep fighting and re-charging energies.
    About the leopard print snuggie... wohaaaa! I'm sure it is... erm.. interesting :P Sorry not huge fan of animal prints ;) But what really counts here is what you said, that a friend took time for you! Hope you had a nice weekend.

    For me, I'm very happy these days. MY BABY IS 2 MONTHS OLD TODAY!!! HOORRAAAYYY!!I :) Aww, bless her! she is the reason I keep fighting. Every cuddle, kiss, nap, smile we share reminds me that there's tons of good things in my life... she is my star! :)

    I had a very nice weekend: dinner out with DH on Friday at our fav Italian restaurant at the harbour, Saturday  was super sunny and not too cold so we had a nice walk around the neighbourhood with our lovely baby, and today enjoying the family life with my mum and hubby at home :)

    On Friday, went home to pick up some new clothes (remember, currently living in another flat due the bathroom works at home) and while checking the mailbox, guess what I got between the hospital letters and the bills? I GOT A GAILA HAT!!! A beautiful pink and white dots wool hat :) To be honest I wasn't sure the ladies from Gaila would take me into consideration for not living in the US, but they did read my petition and sent me my beautiful hat!!! :) Perrrrrrrfect for the cold winter days here in Norway winterland!  So girls, I really encourage you to visit their website gailafund.org either to request a free Gaila (free for women who are living with cancer) or to buy one of their amazing hats.

    Hope everyone had a very nice (no SE) weekend too!
    Big hugs to everyone!
    Joy

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited January 2011

    Ok gals! I got some pics back, but in an email. my friend is supposed to give me a jump drive with them so I can do as I please. They came out wonderful! I really like them. as soon as i can get it loaded on here, i will post them.

    My BC sisters gotta see them first!

  • msjag
    msjag Member Posts: 416
    edited January 2011

    Angel, glad everything went great with the pics

    Joystar, you are such an inspiration to all of us.  Here you are going through the same thing we all are, and with a beautiful two month old to care for.  Your amazing.

    Today I was surprised with a "its your last chemo " party.  Friends that didn't even know each other called my work, neighborhood friends, because they heard I had been down, emotional. It was wonderful and certainly cheered me up and I am so grateful.  But like karebear said, its different than being here with all of you. Thank you all for your posts and support. It's what is getting me through the rough days.  Funny, everyone kept saying one more and your done, not realizing this will be on our minds longer than the last chemo or radiation. 

    I also recieved a beautiful gala, what a great organization.

  • spartina
    spartina Member Posts: 68
    edited January 2011

    I start my first Taxol this afternoon.  Will be doing weekly Taxol for 12 weeks.  Although everyone says Taxol is a cake walk compared to the AC, I still have my "before chemo" morning apprehensions. It's been really helpful to learn from the experiences of others since our December start.  Thanks.

  • joystars
    joystars Member Posts: 95
    edited January 2011
    3rd round of FEC tomorrow... here I go!
    *crossing fingers for a normal wbc*
  • sammolisa
    sammolisa Member Posts: 180
    edited January 2011

    They can have their Taxol back.  I don't want it.    Today is the first day since my infusion this past wednesday that I doesn't feel like my ankles are being ripped off up over my toes.    And to make matter worse - my dr didn't refill my vicoden Rx and I ran out of pain meds on saturday,   I honestly don't know how I lived through it.   (they wouldn't refill it because of some stupid policy of no drugs on the weekends) My DH was livid.  He went down there early this morning and gave them a piece of his mind.   I like my dr - but the rest of his staff are imbeciles I am finding out.

    Praying next one is better.

  • karebear76
    karebear76 Member Posts: 288
    edited January 2011

    Sammolisa: So sorry taxol didn't go well for you. (((HUGS))) That is crazy that they didn't get you meds cuz it was the weekend. My DH would be livid too!! If I lived closer I would totally give you some of my left overs from other things! I know that is wrong but hey if you are in pain!!

    I have my LAST A/C on Thurs!!! I am actually excited to have the A/C done!!! Not looking forward to the SE but will be glad that 1/2 is done!!! Then on to 8wks (every other week) of Taxol. Not crazy about seeing how that will treat me but at least I will be 1/2 way to done!! 

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited February 2011

    starting 8 weekly taxols tomorrow.. gosh, i am way more nervous than i was yesterday or the day before! I guess it's just cause i don't really know what to expect or how i will react. at least this chemo crap is halfway over!

  • nolaa
    nolaa Member Posts: 76
    edited February 2011

    sammolisa -  So sorry to hear Taxol was bad for you.  Was the feeling in your ankles the peripherial neuropathy they talk about? My oncologist told me to take alpha lipoic acid and l-glutamine powder. Go rush out and get some too in case it can help!

    I've been kind of worried about this phenomenon -- all the medical people say, "Don't worry, Taxol is much more mild than AC."  Since they've never been through it they fail to say something like, "If AC feels like your soul was sucked by the devil, Taxol only feel like one of his demons stabbing you in the heart."   Gosh that sounded way more pessimistic than I wanted it to.  I guess I just mean that the side effects do sound like they can be miserable.  Nausea and vomiting are included!  And since I had such a terrible time with the AC I'm worried that Taxol won't be walk in the park that they seem to promise.  

    My first of 12 weekly Taxol's start tomorrow morning.  I'll find out soon enough.   

  • sunflower71
    sunflower71 Member Posts: 130
    edited February 2011

    Hi Ladies!  Just wanted to wish those who are starting Taxol/Taxotere good luck.  My chemo regime is 6 rounds TC plus Herceptin, then 17 rounds of just herceptin.  Don't forget to ice!  Also, it maybe a good idea to check with onc about taking B vitamins, glutamine, and acetyl-L, to ward off any neuropathy.  It started for me after round 3 and it sucks (I did not take anything to help prior to now). 

    Sammolisa- I have had joint/muscle pain since round one that lasts for a few days each round.  It is hard to determine if it is the neulasta or the taxotere or a combo.  I have learned to stay on top of it with pain meds when its really bad (I am glad your husband ripped them one, to run out of pain meds during this time is unacceptable.)  Yoga, light stretching, hot baths with epsom and heating pads also help.

  • spartina
    spartina Member Posts: 68
    edited February 2011

    hdangelbaby--I had my first taxol yesterday and I was like you, very nervous even though I'd been told the Taxol would be easier.  It was just the unknowingness of it. But it really wore on me before the treatment.

    The treatment went mostly smoothly.  They gave me benadryl by IV as well as dexadron by IV and i think Zantac for the stomach.  Of course the benadryl would have put me to sleep if I let it but I was with a good friend and we were talking and laughing, so I pinched myself to stay awake. 

    I didn't get any allergic reaction to the Taxol but shortly before the IV bag was emptied, I began to feel nausous--not like I was immediately going to throw up.  The nurses came in and asked if I wanted something for the nausea, and I though of waiting for 5 minutes to see how it went.  I sat up and did some deep breathing and in about 5-10 minutes is passed.  

    Went home and sleep the benadryl off, then ate some dinner and to bed again.  During the night i must of had 20 hot flashes, like I was on a conveyer belt.  The covers came off then on again, then off. And my bald head was a good surface area to dispel the heat!  I also felt a nauseau about 3am and breathed and put more pillows under my head and back to keep me up.  Nothing works so I took the trusty Ativan.  After a while, the nausea left and the Ativan put me to sleep. 

    I don't feel hungover from the Ativan this morning and if everything continues like this I should be able to get some work done despite the snow predicted for Long Island.  

    Best to all,

    Maria 

  • lindaa
    lindaa Member Posts: 119
    edited February 2011

    sammolisa - sorry the taxol is giving you a hard time.  I found the benedryl they gave during infusion really made my legs crazy.  Restless and achey, but not painful.  I found walking around during infusion really helped.  Also, that drug is to help with allergic reaction, and since I clearly wasn't having that, the onc nurse cut the ben dose in half.  I don't think she even checked with doc.  The decodron is for the same thing, and although they still gave it to me on treatment day, I was able to get off the pills.  They told me for taxol these drugs are for allergic reaction, for AC they help reduce SEs.  As for pain, vicoden doesn't do much for me but put me to sleep, I find 2 Aleve work better.  To fend off neurophathy, I take L-glutamine powder (15g, 1 or 2x day is dose).  I only take it a few days here and there, but some ppl have to take the full 30g. I also take vitamin B6 to help with finger/toes issues.  There is another drug/supplement that I can't really remember but I haven't needed it.  Lycira??? 

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited February 2011

    just had my first of 8 taxols today. it went better than I thought! the benadryl really knocked me out though, at the infusion and again at home. i was nauseous too at the beginning and they gave my kytril for that.

    i don't need to have neulasta for this unless my counts go too low, then i can have neupogen. keeping fingers crossed they don't dip too low, onc said taxol isn't as harsh on the bone marrow as AC.

    my onc put my mind at ease about doing the 8 weekly vs. 12. vs dose dense. he said i am getting the same amount as he 12 weekly, but in 8 doses. this will get me done faster, so i am excited for that. of course i asked him bout the b6 and l-glutamine. he said it doesn't work, but later in the week i'm going to go get some anyway.

    anyways, still a little benadryl groggy, so gonna go find something to eat!!

    hope all is well! -angel

  • karebear76
    karebear76 Member Posts: 288
    edited February 2011

    Hey ladies.

    I have a question about your cycles. Is it gone? Heavier? lighter? I had mine at first treatment and then was a week late so I thought ya I am not going to get it, well I got it and I am on day 10!!! Plus I have had a LOT of clots and floods of pads. I have to see my GYN on Thurs before my chemo appt. Just wondering how it is treating all of you. 

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited February 2011

    karebear 76, i do not have a cycle anymore cause i am on ovarian suppression in addition to chemo. will be on suppression for 5 years

  • karebear76
    karebear76 Member Posts: 288
    edited February 2011

    I will be on that AFTER surgery and radiation. So I have time before that.

  • nolaa
    nolaa Member Posts: 76
    edited February 2011

    karebear76- I'm similar. I had mine right before first treatment, was hoping second would disappear but instead it was late and VERY VERY heavy.  It's been another month so now I'm waiting to see what happens.  I went pee during my Taxol infusion today and there was blood, but now it seems to be gone.  Not sure what that is all about.  My body still seems very confused.  My onc said that chemo doesn't stop everyone's periods, only some people, so you might be one of those "lucky" ones that has to deal with them until it's time for official ovarian suppression. 

  • msjag
    msjag Member Posts: 416
    edited February 2011

    Anyone been told to take melatonin supplement to help with sleeping?  I'm bracing myself for my last chemo tomorrow, I never get any sleep, primary doc said it might help w/ativan.  Just wondering if anyone knows anything about this?  thanks

  • nolaa
    nolaa Member Posts: 76
    edited February 2011

    msjag - I haven't heard anything about melatonin, but Ativan should work.

    I've also had problems sleeping.  Basically no sleep the last 4 nights.  Not sure why since normally I love sleep and can't get enough.  I think part of it is the hot flashes.  Any else getting those yet?  I lay in bed shivering and then a few seconds later I'm drenched in sweat and then the cycle goes round and round all night long.  For some reason it seems to happen primarily at night. 

  • Sharon789
    Sharon789 Member Posts: 56
    edited February 2011

    Hi Nolaa,

    I totally understand about sleep problems and hot flashes. I'm into my 3rd round of TC and my hot flashes are getting worse and have now affected my sleep.  I don't have the shivering part but certainly have the sweating part and haven't had a solid night sleep after this chemo round.  I do notice it in the day as well.  I've been told I may stay in menopause but the severity of the hot flashes should decrease after my chemo is done.  I'm hoping.....

    If anyone has any pointers about how to get a good nights sleep if this is your issue, I would apprecitate hearing about it.

    Thanks,

    Sharon

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited February 2011

    msjag, i take ativan with melatonin. there is one out there that has "thiamine" in it. it is supposed to decrease the anxiety insomniacs feel when laying in bed thinking all night. (hello! that's us ladies!), i tried 1 mg of ativan and i melatonin with thiamine. seems to work, except that i still wake up with hot flashes and chills. i don't think anything helps with that!!

    hope this helps!

  • msjag
    msjag Member Posts: 416
    edited February 2011

    Thanks angel!!! I will get some right after chemo tomorrow~ I will try anything!!

  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited February 2011

    Haven't checked in for a while.  One week out from my 3rd A/C, have my last A/C in one week, so I'm beginning to get nervous about Taxol, like the rest of you.  This last treatment really knocked me out fatigue-wise.  I have been sleeping and sleeping... helped by the fact that we are totally snowed in right now, and were without any electricity for most of last night with this crazy blizzard. 

    I am worried about the fatigue for next weekend, right after my last A/C.   Two of my children have a music recital on Sunday, we have two sets of family coming in to see them from out of town, so we are hosting family, and I need to make it to the performance!  Since it's family visiting, they will help, I am lucky to have a very easygoing set of family members

  • lindaa
    lindaa Member Posts: 119
    edited February 2011

    HD,  too funny about the onc saying no to b6!  I give up on expecting a good answer from the oncs, because vitamins and supplements are just not their thing and they always say no.  Actually my old onc did say yes to glutamine, and the nutritionist even had a flyer with the info on it.  At my new center, the nutritionist here also confirmed - she said yes to glutamine, b6, mushroom complex, vit D3, IP6/inositol, magnesium. I couldn't say if it helps or not.  I did take it, i didn't really have any issues with tingling fingers and toes, but I am not going to risk stop taking it to find out. I take the b6 daily, but I only take the glut around 3x a week.  I never take any supps on treatment day, just to make sure there is no conflict. For more info on supps, the alternative thread has some great info, and I also always check at Sloan Kettering or Dana Farber (or any good center) because they keep good lists of these things and will say if they feel it will help or work again the chemo. If I ever get to NED (prayers!) I have a bigger list that includes Vit C and others that I will start.  Most ppl seem to agree that Vit C can work against chemo so I avoid that one.  And I was just reading on Amer canc site, that folic acid is good to prevent cancer, but if you already have it, there have been some studies that show it could increase tumors.  So great.  My cereal has 25% of daily, which I hope is not bad because I love my cereal in the morning. 

  • sunflower71
    sunflower71 Member Posts: 130
    edited February 2011
    Round 4 tomorrow!  I just got done re-reading our post since the thread started (Thanks again Sammolisa!).  It is amazing to me the gamut of emotions we have all gone through in such a short period of time.  We were all so anxious before we started!  Ahhh... after this 2 more rounds of TCH then just Herceptin 17 more times.  Next  December: PORT REMOVAL!Laughing
  • sammolisa
    sammolisa Member Posts: 180
    edited February 2011

    One week out from taxol and I am feeling so much better.  Doc put me on neurontin today also, the first round of taxol left the soles of my feet numb and tingly.

    -- for the sleep deprived,   I slept well last night for the first time in a week.  Took 2 -1mg of ativan and 3 benadryl.  Slept like a baby.   Literally -  lol woke up at 2am and then went right back to sleep after some water.  

    Have diahrrea (sp?) with taxol however.  - No wonder - its mixed with castor oil and some other alchohols to liquify the tree bark.   Looking forward to a whole week of feeling good before my next round.  Yay!

    Hugs to all

    Lisa

  • lindaa
    lindaa Member Posts: 119
    edited February 2011

    I posted this in the TN thread but wanted to share here too:

    last weekend I attended a memorial service for a friend of my DH and myself who just lost her battle with BC after recurrance mets everywhere. Because of her 2 daughters (11 and 13), she insisted on a family oriented, upbeat, life celebration.  The church was packed full, lovely stories were read (the 'Waterbug and the Dragonfly' was one), a childrens choir sang, it was really touching and she did get her wish because it was not as sad as i thought it was going to be. 

    The night before I went out to dinner with DH and daughter/SIL.  An older couple were seated next to us.  I wear a cap instead of a wig, and my shoulder still hurts from port surgery, so i had a little of the patient look going.  As I got up to leave, the woman patted me on the back.  When I turned around she took my hand and said, 'me too, 25 years ago today'.  Then she got up and hugged me. We exchanged a few more words, but when I left, I couldn't help but feel that the meeting was not random.  She could have been seated anywhere, it was a big place.  And I had never been to that restuarant before. It was encouragement I needed to hear before going to the memorial service the next day.

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