August 2011 chemo, anyone w/ me?!

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    G' morning all. First off let me just say "ugh".Yep, I have been struck down a bit by the aches and pains of I assume to be the taxotere. Right calf was achy night before last, then last night the whole shebang kicked in. Both legs, arms, back. The "flu-ish "feeling I have heard about. I would like to point out that Aleve did not cut the mustard. And ativan wasn't doing it either. Just plain hard to get comfortable. Bareable during the day, but if it's still going on tonight, I think I'll drag out some of the oxycodone or whatever it was I got ( and didn't use) after lump.

    I am going to head up the hill w/ the dogs shortly, though. I think that exercise and keeping going is key! On the constipation front, I would have been fine if I had been taking the correct amt. of the senekot. Didn't read the label, and only was taking one 2xday. So, I recommend starting that stuff the evening of chemo, and carrying on for a few days or at least until...

    I just finished a good book about a laughing class- "The Man who Died Laughing" by Tarquin Hall. I love yoga, but laughing yoga, not sure about!

    Also, I have not been given any of these scans you guys are getting. We addressed cardio issues, and onco said taxotere wasn't cardio- bad. Also, I was told w/ a 1.4cm lump and a 2.2mm SN mass, that scans were not necessary. hope I'm getting what I need? Shoot.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Hi justmejanis.... Thanks for the kind words, I sure hope you don't need the chemo but if you do, we are here with open arms.... I'll keep my fingers crossed on a low score for you!!!



    Ellen, I wouldn't worry about the scans, every doctor seems to follow their own protocols. I know my heart is being checked if I end up getting the "red devil" Adriamcycin. And than the other stuff I had for staging, before my BMX and before I knew about my positive node. Just something my onc does, especially with me being under 40 is what I was told.

    I'm getting taxotere too... I have a lot of anxiety over it....because of all the nasty s/e I've heard. But than again, they all seem to have them huh?? I hope you start feeling better soon. Hang in there!!!



    Mary, I just noticed how similar our diagnosis is.... Which chemo cocktail are you doing?



    My local cancer center has the "laughing" class.... I was told about it, that it's a big group of people that do a bunch of laughing exercises and big belly laughs.... I was told they start laughing pretty much uncontrollably and mostly for no reason. I passed on signing up for that one, I love to laugh (even though it hurts with my chest lately) but I didn't see myself just laughing and laughing like that, for no reason.....I don't think it involved yoga at my center?? That would be interesting....

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  • jeanena
    jeanena Member Posts: 3
    edited August 2011

    Hi there all. Just had my first t/c chemo on aug 4th. Not feeling too good today. Bad headache and lots of achy pain. Grumbly stomach, too. I had the nuelesta shot the following day (Friday). Just took extra strength Tylenol (generic) in hopes it will help. I felt fine the first two days. I am wondering how many days this will last. I enjoy reading all of the wonderful posts and I am so scared. My cancer is triple neg so all I think about it after all this it's going to come back.

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  • Chava
    Chava Member Posts: 50
    edited August 2011

    Justina- I also start this thursday and like you a/c +t. I also had had all of the pre tests. I had them a while a ago since by chemo was postponed a couple of times. It was reassuring that they were negative and that the chemo is there to get any little c guys that may have escaped by lymph nodes.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Hi jeanena... Glad you found us. Sorry you are feeling crappy today. Hopefully the Tylenol helps you. I've seen other ladies mention ginger ale has helped for their stomachs. And it seems like most are only experiencing the "flu like" aches and pains a day or two when they've had them?? I hope they subside soon. Hang in there!!!!

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  • edoyrest
    edoyrest Member Posts: 55
    edited August 2011

    Hey Ellen,

    I'm feeling the same as you last night and today, muscle aches, foot cramps, grumbly tummy, but I'm not going to let it stop me either, going to niece's bday party this afternoon.  Wig shopping went better than expected yesterday, Mr. Paris talked me out of getting my hair cut, which I was fully intending to do.  He said the thinning will be all over the head, not in clumps as I had imagined.  He said when I start to feel panicky about it, call and they will fit me in right away to make the "transition" to the wig.  I will walk in there looking like myself and walk out looking like myself.  I liked the sound of that!  Had dinner at a little Italian restaurant and came home.  Didn't eat much at dinner, but it did bother my stomach all night, or was it the "flu-like" symptoms coming on?  Thinking of keeping a journal of this so when round #2 comes, I'll remember what SEs I had first time and be better prepared.

    Eileen

    P.S.  Does anyone know how to edit the "Diagnosis" section of the profile?  I can't seem to get into it.

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  • edoyrest
    edoyrest Member Posts: 55
    edited August 2011

    Madismommy,

    Didn't anyone tell you that whining is a requirement to be in this club???  Rock on.

    Your last surgery was only a month ago, and your body has been through so much, another couple of weeks and you'll see alot more healing.  My last surgery was 6/8 andmy scars look so much better now. Do look into in-home occupational therapy, mine gave me great exercises I could do in my bedroom, they were hard at first but got easier every day and I feel really great in that dept now.  Usually insurance covers it due to the surgery.

    Eileen

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Eileen....did you go into "my home" at the top, I think there should be a tab to edit your diagnosis there??? Unless it's not working today for some reason?



    Lol... If whining is required than I'm not only a member but probably the president? Ha ha.... Ask my husband, he'll confirm!! :0)

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    Eileen, Zofran is good stuff. I wallowed around all morning, then finially got tired of feeling sick. Took a zofran, and am now happliy typing away here post bacon, avocado, tomato sandwich. I still have the achy, random pain in legs,etc stuff. Also, my mouth is becoming increasingly wierd feeling. Despite gargling w/ salt 3 times a day. To change diagnosis, I go into "my home" click edit "my diagnosis" seems like I always have to fudge around though at that point. Sort of relieved in a strange way that you weren't totally good w/ the Italian restaurant- because I am not at that point, yet. The appeal of food is a wambly thing right now.....

    Madismommy, your attitude is just fine. Whine away, you have the right- we all do! At last, I get to really hone down one of my best talents! Ha!

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Janis, welcome to our group. You're right...everyone here is wonderful and helpful and it makes dealing with this crap so much easier!



    Jeanena, I am also triple negative and it's hard to ignore everything you read about the higher risk of reoccurrence. I'm trying to ignore all that and focus on the fact that research has shown that TNBC responds better to chemo than other forms of cancer. I have faith that the chemo will zap it all! Did you find the TNBC thread on here? You may want to check it out.

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  • Leighsa
    Leighsa Member Posts: 63
    edited August 2011

    Hello ladies! Welcome to the newbies!



    I hope those of you that started last week are feeling better each day-you rock! To those starting this week-you can do, we all can!!



    I agree that we have every right to complain! I still get pain from my lump and SNB and tried telling my younger sister about it. She said, "that's nothing, when I had my breasts done...". I was thinking, is she seriously comparing my breast CA to her boob job!!! She also thinks she knows more then me about BC because her friends have friends/family members that went through it. It took everything to bite my tongue.



    Laughing yoga sounds interesting,but like madismommy, my chest hurts still when I laugh.



    Looking forward to Date Night with my dh tonight. Going to see Train & Maroon 5 - FRONT ROW!



    (((Hugs)))



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  • MaryjRN
    MaryjRN Member Posts: 130
    edited August 2011

    Jenn...I am on the A/C every 2 weeks x4, then Taxol 1x/wk for 12 weeks. Then rads/tamox.

    Jeanena...hello and welcome.   You should start to feel better soon.

    Eileen...I actually have a journal packed in my 'bag' that I take with me to anything bc related.  I haven't even opened it up! LOL  Too lazy!

    VtEllen,...your sammy sounds wonderful.    just discovered avacado 3 1/2 years ago when I started working with hispanic ladies.  They still think it's funny that I went my first 50 years without. 

    Leighsa...you are a better woman than I.  It makes me furious just reading about it!  Have a great date night.  My dd29 is in Sturbridge, MA.  Is that anywhere near you?

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  • musicalmom
    musicalmom Member Posts: 78
    edited August 2011

    Wow the thought of all these aches and pains on top of my regular aches and pains doesn't sound encouraging. You all have great spirits and I hope to remember this is only to be endured for a season. Hang in there. You are an inspiration. Keep the suggestions coming for what works. When you get the flu like systems is it without the fever? I am guessing so. I understand your chemo nurse who does the infusions is usually a great help. I truly hope I get a good one.

    Peace and Rest.

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  • TSB1
    TSB1 Member Posts: 46
    edited August 2011

    Justmejanis: have you called and talked to customer service at the lab? They can tell you when they should have results and when they'll be faxing them to your doctor. When they called me once they got the specimen they told me they average eight days. It was exactly eight days for mine. If you don't have the phone number, let me know.

    Theresa
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  • EllasMom
    EllasMom Member Posts: 7
    edited August 2011

    Hi ladies.  Just went through my first round of A/C on Friday, then received my Neulasta shot on Friday.  Besides being extemely tired, I haven't felt too bad until today.  All of sudden this morning, my jaws feel all clenched and hurt terribly.  I called my onc. and he said it was likely the shot.  Anyone else have this?  Thanks!

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  • Vivie
    Vivie Member Posts: 52
    edited August 2011

    I hope you all feel better soon..to be  honest , you're scaring me a little with your aches and pains...And I don't know what nausea medicines are in circulation in Greece.Guess I'll have to ask.

     I have a question though - do all the chemo treatments to be rigid or can they be played around ? I start on the 14th Aug , then every three weeks , and on 17 Sept and 25th Sept I have weddings to attend.I plan to attend at least the ceremonies - close family the first , close friend the latter. For the receptions , I warned them it might be dicey , we'll see how I feel after the ceremony.I'm planning to tell the onco nurse that so I can get my treatment earlier or later , depending, so I can be away for a week  or so.I'm not very good with the math , unfortunately.

     Also , SE's show up on the 2nd day or so ? That's a relief , sorta , as the 15th is a public holiday in Greece and I'd like to go out and celebrate and attend the Dormition of Theotokos.

    Hope you all get to feel better , and yes , you're right , don't stop your life in account of the chemo! 

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  • Dogmom
    Dogmom Member Posts: 14
    edited August 2011

    Hi,

    I'm finally posting. Been lurking for awhile now. Part of me doesn't want to admit I am about to go through this although I've already had a lumpectomy and got my port on Friday. Already bought some hats and one wig. I start chemo on Wednesday, August 10th. I'm scared to death. I keep trying to stay postive and I know I'm a tough woman but this has really knocked me down. Got lots of support but I'm independent and not use to depending on anyone! I've got months of this to look forward to. I'm so grateful for this group, hope you'll will have me!  Laughing

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  • Amelie_Rose
    Amelie_Rose Member Posts: 106
    edited August 2011

    Dogmom, welcome!  I know just what you mean about being independent.  Try going to the 'getting ready for chemotherapy' thread.  They have a lot of advice about things to do to prepare.  I tried that and it made me feel a bit more in charge.  Also, a good idea might be to prepare food ahead of time and freeze it, for the time when you'll be hungry and not able to fix things for yourself.  I prepared a big pot of soup the day of my treatment while I was still feeling pretty good.  It was a life saver for the rest of the week when the SE's started.  And finally, one thing my onco nurse said to me that made think was that 'we show love to others by allowing them to help us'...  

    Hugs to you.

    Amelie 

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Hi Dogmom, sorry you have to go through all this but welcome!! No worries on your feelings, we know exactly what you mean. My life has been completely turned upside down and I'm dreading the next few months too!!! People keep saying the old adage "you will never be given more than you can handle" and I want to scream "who chose what I can handle than??? Cuz this is a bit much!!"



    We're all going to get through this, one day at a time....and have a big @$$ cyber party when the last of us is on the other side of the mountain safely!!!! :0)

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Hi Dogmom -- I start August 10th as well. Welcome!

    I had a big BBQ party with family and friends yesterday to kinda see everyone before I start treatment. As a surprise, my best friend from NH was supposed to arrive today, but arrived YESTERDAY at the party as a surprise with her husband and son in tow. I was so touched! My son and my sister were in on the surprise.  I have a whirlwind of activity with them (NYC tomorrow and Philly on Tuesday), so I guess I'll be going in to chemo blind on Wednesday. I better remember to take my steroids on Tuesday.

    It will be here soon enuf - I guess I should enjoy things while I can. Undecided

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Welcome Dogmom! You're just a couple of days behind me. I have my first A/C treatment today. What regimen are you getting? I can totally relate to what you say about being independent. I've been looking after myself since I was 18. It's tough to accept that you may need help from others. We will get through this!

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  • Doodlebug12
    Doodlebug12 Member Posts: 35
    edited August 2011

    Hi all



    Love to michelleo13 today. I hope that you are ok. I am on countdown to tomorrow. Making

    final visit to the shops to stock up on necessary nice things. Feeling very shaky today, dreading tomorrow!!!!



    Hope everybody is keeping well



    X Michaela

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Good luck Michelle!!!! I hope it all goes smoothly for you! {{{{hugs}}}} to you,,,



    And {{{hugs}}} to Michaela...i hope the anxiety subsides. Everyone that's started already said the experience was way calmer than the anxiousness leadin up to it!!! I hope that's the case for you too!

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  • capinva
    capinva Member Posts: 138
    edited August 2011

    Hi,

    I had my first treatment in July with t/c but had an allergic reaction to the taxotere. Originally was going to have 4 treatments but since the reaction I will now have a/c. Felt really bad the first go around but I am sure that was because of the reaction. Now I have to do 4 rounds with the a/c then 3 rounds of taxol and cytoxan. What can I expect with the a/c combo? The onoc nurse said this would only be 1.5 hours compared to the 3.5 I had first. Just very nervous starting a new drug. Has anyone else started this combo and how are you feeling. I will have a treatment on Thursday.  

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  • aimska
    aimska Member Posts: 68
    edited August 2011

    wow I didn't check this site for 3 days and look at all this activity!  happy monday pretty ladies! 

    Musicalmom - are you going to be on TCH too?  or did you finish already?  I'm confused :)  yes, I'm having TCH every 3 weeks for 6 cycles, so far 1 down, 2nd infusion is this Thursday (aug 11).. I'm kind of looking forward to this ..

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    Whoa, capinva! You had the allergic reaction? What happened? I asked chemo nurse what would happen if I reacted- did I have to take a different drug? And she said, "No" that they would do something called re- something and gradually reintroduce taxotere again. Interesting. I am on T/C, but others here, in fact it seems like most, are on or will be on a/c. In fact, michelle starts today! Yipee! 1 down ( soon) Michelle!

    The leg achiness was pretty intense last night. Apparently, I was snoring at some point, but I was up and awake a lot:( Tonight I am for sure taking the hydrocodone. Cannot wait to start the accupuncture. Otherwise, I actually feel pretty OK today.

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  • summergirl1
    summergirl1 Member Posts: 182
    edited August 2011

    Hi everyone, hope you are all doing well, I am getting more and more anxious about tx dont start till the 18th though kinda wish it would just start now as the waiting is making me worse , I had a good weekend and once I keep busy Im fine, just get a little weepy when Im on my own as its so overwhelming , Have to say I live in a small village and everyone knows what I am facing and are so good to me , I think this will really help me get through this,

    I have also made a vow thats after Im feeling better I would love to look into why not more research is being  done so no women have to lose their hair through this, I think I can deal ok with the other SE's but find this very demoralizing as Im sure many of you do too.

    Michaela, GOOD LUCK TOMORROW, will be thinking of you and hope it goes well for you, please call me if you need to chat I gave my number on a previous post, xx

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  • capinva
    capinva Member Posts: 138
    edited August 2011

    vtellen,

    My reaction didn't happen for a week which confused the doctors. But looking back at the intensity of the normal side effects I think my body was reacting right after treatment. On the 3rd day I started with sharp stabbing pains in the upper thigh and then I was in bed for 3 days. Started feeling better on the 4th day after treatment, went to work on the 5th day post treatment and while I was at work broke out into a raised rash on neck, hands, arms. Then I started swelling. Called the doctor. They had me come in, took pictures of the rash and put me on presidone (steroids) plus take allegra twice a day. That did the trick and took a few days for the rash to go away but the itching stopped very quickly. Since that happened, I am nervous about the a/c combo and hopefully will not have any reaction to it.

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  • aimska
    aimska Member Posts: 68
    edited August 2011

    yeah summergirl.. losing hair was the worst part.. it was worse than the SE's from chemo and worse than the surgery.. I think chemo would be completely manageable if only we got to keep our hair :(.  

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  • brca1babe
    brca1babe Member Posts: 75
    edited August 2011

    you can try penguin cold caps to keep your hair.

    it doesn't always work perfectly - depends on your chemo and likely on individual factors, but it has worked great for some. 

    check out the cold cap thread under "help me get through treatment"

    it is used fairly often in England, New Zealand and similar methods in Scandanavia.

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