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Comments

  • unique
    unique Member Posts: 209
    edited November 2008

    Hi, Donna ~ I think for me a steroid taper is really helping. Altho I didn't ever seem to do it quite the way I was told, especially the day before, I kept forgetting to get the script, etc. My onc said most people aren't helped by a taper, but I think I really am and I will emphasize it next appt. I did my own thing and did not have a crash this round (#3) - I mean I don't feel frisky, but it's not bad and I've been able for the most part to do stuff around the house without distress.

    This is what i did -

    1 dose evening before
    2 doses am and pm day of infusion
    1 doses following day
    1/2 dose am Saturday
    1/2 dose am Sunday

    I think it worked like a charm. Same amt of med, just drawn out a little so you don't crash. 

  • Wink
    Wink Member Posts: 476
    edited November 2008

    Thanks Annie - I'm not only going to ask - I'm going to insist on a taper!

    I swear - every thing I've learned about managing chemotherapy has been on this website!  I tell everyone about it (especially the chemo nurses).

    Donna

  • Katie2u
    Katie2u Member Posts: 43
    edited November 2008

    Hi Unique:

       I did the taper as well on round 2 and did well.  It was only the heart bounding and high blood pressure that was a problem but it could have been from the Decadron itself rather than the chemo. 

    Katie

  • unique
    unique Member Posts: 209
    edited November 2008

    Hiya all ~

    Doing fine over here, a little heartburn, a little dry mouth, really get out of breath walking up the little hill to my son's bus stop. Only other thing is altho I think I don't have a cold anymore, and feel pretty okay, there is just so much post nasal drip going on it's crazy. I'm assuming it's the last tail end gasp of last week's cold, and it's clear fluid, I just keep blowing and blowing it out or it rolls down back of my fuzzy, chemical tasting throat. Guess this can also be an SE, cold symptoms. I forget where I read this.

    Zantac took care of the heartburn, I guess licorice flavored tea is out for the moment, that seemed to set it off today. 

  • sherrie1964
    sherrie1964 Member Posts: 37
    edited November 2008

    Donna - I also did a taper as well.  It wasn't a big one, but seemed to keep me from being zombie like on the 2nd and 3rd day after chemo.  I would recommend it.  So you have pink peanut m&m's.  How cute - I have the regular multi-color ones leftover from Halloween.  I love peanut m&m's!  I have Reese's cups too.  Somebody has to get this candy away from me!!!  Oh I went for my rads planning session today and guess what they said?  "Don't lose any weight".  That's all I needed to hear!Wink

    Lani, it's only been a week and the metal taste is really strong.  It's nice to know there's a light! 

    Sherrie

  • birdsong
    birdsong Member Posts: 56
    edited November 2008

    Hi all,

     I've been out of town to the coast for couple of days before number 6. It is tomorrow and am soooo happy to see the end. It was asked about 4 vs 6. My onc said it is a must if you have positive nodes. I am hoping for just fatigue, since I never had the shots but let my count come back on its own. I also hope not to have numbness also. I must have more fatigue because of not having those shots. Let me say how much I have enjoyed having you, my sisters, to lean on during this time and for the wealth of information and courage you all show. Is there a site similar to this for the radiation information and support. That is the next step. I hear I am down for 7 weeks again because of 2 nodes, I'm guessing. Any comments on that ? How many weeks are you planning to have? I'd like to pass along a terffic book called "Breakthough" by Suzanne Summers.Book number 18 for her.. She had breast cancer and became proactive and really knows the doctors who have a wealth of great information who are on the cutting edge  of amazing information for the  future prevention and care to avoid reocurrence. It is a series of interviews and you learn a lot!!!  Love Birdsong

  • Wink
    Wink Member Posts: 476
    edited November 2008

    birdsong - I'm so sorry that I missed you (chemobrain?); I had to go back to the list and there you were at the very top. Congratulations for finishing your course of chemo! Laughing LaughingLaughing

    Donna

  • berrypatch
    berrypatch Member Posts: 55
    edited November 2008

    Hello Everyone!

    I saw the onco today and found that I will be having 6 rounds of TC starting 12/2.  My plans are to read as much of the pages of this board as I can for information, and get to know you ladies.  I can usually be found on the "Illinois Ladies Facing BC" thread.

    Since being diagnosed in Sept., I have found so much support, friendship, and information on these boards.  I had a right uni-lat mast on 11/3.  Healing is going well so far.  Because I had congenital heart defects corrected by surgery as a child, Dr. did not want to risk giving me doxorubicin.  I'm glad because I was worried about that prospect.

    I am 51.  I quilt when I am feeling better, and whenever my muse will decide to return to me.  I live in the Chicago area with my DSO, Jim.  My 3 children are all adults, and I have 2 beautiful grandchildren.  I am employed as an office manager, but I am now on short term dis.

    Looking forward to getting to know you all.

    Carol    (berrypatch)

  • hopefullady
    hopefullady Member Posts: 102
    edited November 2008

    Hi all, and welcome to Carol. 

    Just wondering as I read about the taper, do most of you get decadron before and after your treatments?   I only get it in the drip right before my treatment, nothing to take at home.   Just curious.

    Chris 

  • dlb823
    dlb823 Member Posts: 2,701
    edited November 2008

    Hi, Carol... Welcome!   Sorry you have reason to be here, but you'll find lots of smart, caring women here, and support unlike anywhere else!

    Wow, 8 ladies are finishing up this week!!!!  WaHoo!!!

    Teena... "Bald, fat and tired!  How alluring is that!  My poor husband."  LaughingLaughingLaughingLaughing  That is so funny, but so true!!!!!!!   I am 4 weeks post my last tx, and my DH tells me my skin still has a metallic taste to it!  And don't forget the lovely yellow-ish-grayish skin tone.  My sister described it as "you don't have any color," and that was in spite of a good amount of Bobbi Brown blush stick!

    Deanna

  • kathimdgd
    kathimdgd Member Posts: 84
    edited November 2008

    Chris,i also only get decadron in my drip before the chemo.I'm glad about that so far.I get my 2nd round this thursday.

    Kathi

  • rickster
    rickster Member Posts: 16
    edited November 2008

    I had round #4 last Thursday and am going thru my 'usual' SE's, but one new one has popped up  -  my right eye has been twitching like crazy all day!  This comes on the heels of some really bad tearing at the end of the last cycle, so don't know if they are related.  If anyone has any ideas on a fix or remedy, please let me know . . .I have a day full of meetings tomorrow and would love to get this resolved or find some relief! 

    As always, thanks a ton and stay strong!  Rickster

  • dlb823
    dlb823 Member Posts: 2,701
    edited November 2008

    Rickster...  Sorry you've had these SE's hit.  I had the same thing, the tearing and twitching, as did some others on the August 08 chemo board.  Luckily, they're SE's that seem to be infrequent and don't last long.  Wish I could tell you what to do, but unless you can tie them to an allergy (at times I wondered if my wig was causing the tearing to start, so was careful to wash my hands after handling it), I don't think there's much you can do.  The twitching seems to be a muscular thing.  I also got it in one of my knees towards the end of tx's.  Maybe someone else will have more practical advice, but all I can say is, you're not alone, and those are weird but not uncommon SE's.    Deanna 

  • unique
    unique Member Posts: 209
    edited November 2008

    Rickster! Someone on here or the October Chemo list mentioned some eyedrops - maybe call your onc office and see if they have a specific recommendation. At the time I thought if you are tearing why would you be adding more fluid but maybe it settles down whatever irritation?

    Guess that's what we have to keep telling ourselves - it's TEMPORARY, TEMPORARY, TEMPORARY.

    Carol ~ We have so much in common! I'm 51 too, my tumor was 4.2 cm!!! I also had a single mast on the one side (I'm Unbalanced Woman, hear me roar!) I lived in Chicago for 10 years and would love to return to that area. I do beading instead of quilting, but again only when I have the energy! Welcome! This is a great list where you will get tips, solace, friendship. I've posted after my doctor's office closed and gotten an answer in an hour or two that eased my mind about something.

    Chris ~ Ask about the Decadron, I get some in my drip but also 10 tablets 4mg each to take home to reduce side effects for the first couple days.  Well I think. Maybe they just put it in the drip when I forgot to take the Day Before dose. Anyway, the typical way I take it is 2 tabs nite before chemo, 2 tabs morning of chemo, 2 tabs that night, 2 tabs next morning, 1 tab Sat morning and 1 tab Sunday morning. I hope that adds up to 10. Now if you get it all in your drip you may not need any more, and as a steroid there can be contraindications but most of us are getting it. Ask your oncologist about it. They almost forgot to give me a script the first time, so it's not critical - I think. Well, most of us are after our onc's to taper the dose after the first couple days because it seems to help with our side effects (SE's we're calling them) not to stop all at once. It's a drug that you do better with if you finish it slowly.

    What else helps with SE's? Drink GALLONS of water. This protects your body from effects of chemo also. Get lots of sleep. Some of us find a little Claritin and Benadryl helps too with all the strange little SEs that bug you.

    The great news is most of us do pretty OKAY with this chemo, basically the 3rd and 4th day you may feel like you have the FLU, but you can hack that, right? You should have Ativan, Compazine, Zofran and/or Emend for nausea and you shouldn't have much trouble with that. Tylenol for body aches and pains. Pop a Tylenol, get a good book, and crash on the sofa. I'm catching up on my reading finally. 

    We're also always having HAIR conversations, the minor detail of LOSS OF, but always figures large because it affects how we look. I mean when I have a moment to post all my Hair and Hat Fun Experiments up on the web, but I have to some paying work right now, heh heh.

  • unique
    unique Member Posts: 209
    edited November 2008

    I forgot to mention coffee. Many of us find a cup in the morning really helps with everything. The caffeine gives a little lift? It's warm and comforting? Some may want to do tea instead, I find some of the herbal teas give me heartburn though. The Earl Grey (usually may fav) also was not quite right for some reason ... but coffee seems to ease and aches and pains, soothe, give me a tad more energy if I'm feeling logy, and put me in a good mood! Since most of us are not having stomach issues (I think that's right) more the heartburn type issues the coffee is not a problem in terms of nausea. Is that right girls?

  • hopefullady
    hopefullady Member Posts: 102
    edited November 2008

    Annie, thanks for the advice, but I have my last treatment Monday so I don't think I'm about to ask them to do anything differently at this point.  I just wondered why so many of you seem to be taking so much decadron.  Especially if you are finding the need to taper it.

    And, I'm glad that most of you aren't having stomach issues but I really have, all through treatment.  The very thought of a cup of coffee isn't pleasant. For more than a week after my treatments it feels like something is burning a hole right through my stomach, which I guess it probably is!

    Chris 

  • unique
    unique Member Posts: 209
    edited November 2008

    Hi, Chris - had a chemo brain moment so I was thinking you were just starting.

    My hubby had a brain tumor, he passed in '00, but he was taking way more Decadron than this. It's only a little bit for a couple days. I think I didn't convey this well in my post, but it seems oncs have a variance in what they recommend, based on their own philosophies. Much of the time there may not be a hard and fast answer, so they go based on their personality or inclination. Some are more into preventing SEs, others may be focusing more on not overmedicating. For ex., my onc doesn't do prophylactic antibiotics, I know some do. I did get prophylactic Neulasta though. So you have to talk to your onc, feel comfy with her or him, realize that there may not be a hard answer to some of these things.

    That said, I've done well so I want my Dex!!!

    It may be that we on Cytoxan and Taxotere are having fewer stomach issues but more twitchies and bone pain. I haven't had any nausea but definitely some rather awful heartburn. 

  • Wink
    Wink Member Posts: 476
    edited November 2008

    Sherrie - for some reason the big bag of pink M&Ms were a dollar cheaper than the regular mix - I can be thrifty at timesMoney mouth.

    Donna

  • Wink
    Wink Member Posts: 476
    edited November 2008

    Rickster - I have right eye twitching & left eye drooling - go figure!  I'm hoping these SEs will go away after chemo is complete.

    Annie - I was having horrible headaches after #2 tx - decided to have a cup of coffee (didn't appeal to me at all) and wa-la, bye,bye headache!  I only drink 1 or 2 cups a day, but I guess it's enough to spur an addiction.  I also had horrible heartburn after #2 and my onc gave me Protonix - helped big-time.

    Donna

  • robichson
    robichson Member Posts: 26
    edited November 2008

    Hello ladies

    I made it through. I finished my last tx on yesterday and I'm glad. I got a certificate from the chemo nurses and they made an announcement in front of everyone and I got to ring a bell that was outside the clinic that I was done. It really felt good. I don't have to get the Neulasta shot today my wbc counts were good. Feeling ok right now won't over do it for the next few days. I only gained 3 pounds whole tx. I want to thank you ladies for your words of encouragement and suggestions on how to treat side effects. I will be keeping in touch. I have my breast implant surgery on Dec 22 and I should be back to work in Jan. Love yon all and will try to download picture of me ringing bell soon. Stay strong everyone because we are all survivors.

  • rseaw22
    rseaw22 Member Posts: 59
    edited November 2008

    Pinky - big congrats!  I'll do my happy dance for you...best left unseen, but imagined to be beautiful. Cool

    Rickster - I've finished tx 3 and have had left eye twitching for over a week...drives me nuts but haven't found anything that stops it.  I wonder if people can see it, but then realize I just don't want to know.  It's certainly not the worst SE, but there are moments when it's hard to think about anything else.  The other irritating one is the nose drip - sometimes I resemble a coke addict - twitching, sniffing, and mumbling....aaargh.

    On the weight gain side - I have to say I think it is luck of the draw.  I've had 3 tx - total lost of 15 lbs - have eaten differently each tx but keep dropping.  I forgot to take decadron as prescribed on tx 2 then on tx 3 took about half of what I was supposed to...I normally have to fight with weight issues.  I'm on Tamoxifin for 5 yrs after rads, so figure this is just a temporary gift....

    I'm in the middle of the metal mouth section - coffee works fine but water tastes gross. 

    best to all

    Ruth

  • Margaret1102
    Margaret1102 Member Posts: 25
    edited November 2008

    I have no idea if this might help or not, but I was told that the postassium in a banana can stop the eye twitching.  For what it's worth...

    Meg

  • unique
    unique Member Posts: 209
    edited November 2008

    Hi Ladies,

    Feeling all right - made my appt. with Dr. Fox at UPenn today - I meet with him on Dec. 18th. *If* he felt I should need 6 rounds of TC, I could do that the next week and pretty much stay on my schedule. I'm so happy!!! The only freaky part is they want me to bring my slides and films by hand down to the appt.

    Still have the drip and runny nose, no fever, feel okay except for fatique and a bit of low back pain, am taking Tylenol for that, it is prolly the Neulasta or a bit of constipation.

    How are all of you? 

  • peeps1111
    peeps1111 Member Posts: 70
    edited November 2008

    Chris:

    I also get decadron the day before the chemo, the day of the chemo and the day after.  There were also two refills on the bottle so I tapered myself with one pill two days later.

    Birdsong:  I had a micromet in one sentinel node, may have had other positive nodes but refused the 2nd axilla surgery but I am only getting 4 rounds of TC. 

    Peeps

  • bobcat
    bobcat Member Posts: 526
    edited November 2008

    Hi Everyone -

    I also have Dr. Fox at UPenn as my onc - he's awesome and funny.  I start 4 rounds of TC starting Dec 5 and have found alot of good info on this board.  I had a double mastectomy in August with expanders and having my new boobs installed next week.  The expanders are a real trip!  - found one top that looks great with all my neck scarves and bought 3 of them!  Sort of did this backwards because of the Oncotype testing.  I get anxious as each new milestone approaches but mostly about the approaching chemo and the SE's.  Seems everyone handles it differently.  I check this board daily to see all the new posts and information.  Thanks for sharing all your experiences - I'll let you know how my first treatment goes on 12/5.

     Bobbi

  • unique
    unique Member Posts: 209
    edited November 2008

    Bobbi - It would seem most of us tolerate the SEs pretty well. For me the most difficult part would be Days 3-5, feeling like I have the flu, but not the worst flu I've ever had that's for sure. I'm encouraged Dr. Fox is doing 4 cycles for you - I do my 4th the day before Thanksgiving (will enjoy Turkey Day and the day following but will prolly be crashed that weekend, oh well) and I'm hoping I'm done then. I didn't do Oncotype testing because I had a teeny weenie 2mm cancer cell in one of my lymph nodes. Who knows maybe Dr. Fox will want to do it to see if I should do 6 cycles. Talk about backwards!!! My local oncologist is WONDERFUL. Actually I have two wonderful oncs, one who is treating me and one I went to for a second opinion. I did a third but didn't like her as much. Good doc, we were just not in sync.

    Interested in what you say about expanders. I did a unilateral mastectomy but didn't do recon because it was just too much emotionally. I figured I could do it later, and I may as I feel so lopsided! Of course the other breast may need to go at some point as well. I am wondering though as my surgeon (and plastic surgeon) said I didn't have enough skin they didn't think for the expanders (my tumor was on the outside close to the skin). But I don't see why we can't use some skin from the other breast, make two small breasts out of one big one? Well anyway to be continued LOL. They were suggesting TRAM flap for me but you can only do that once, so if the other breast went I'd be lopsided again. I have plenty of stomach flab but it's such a big operation, I'm scared of it. 

  • unique
    unique Member Posts: 209
    edited November 2008

    Bobbi - the very biggest thing I think we all can tell you is drink GALLONS of water. This helps an incredible amount, helps your body process the chemo and protects your stomach and organs from the toxic chemicals. I just have a little water bottle I keep with me always, just sip continuously, so I don't get the bloats. If I drink 8 oz all at once, it's too much.

    The other thing you'll see if you scroll back a page or two is most of us feel MUCH better on Days 3-5 if we get Decadron to take at home and taper it. What this means is you take the normal dose the day before, the day of your chemo, and the day after, then half a dose on the next two days. Decadron keeps you from reacting badly to the chemo, but when you stop it suddenly, there tends to be a crash. Suddenly you feel JUST AWFUL. My onc who I adore said most people don't seem to benefit from a taper, but I noticed a huge difference. You're not taking more of the drug, just stopping it more gently. 

  • nursekim
    nursekim Member Posts: 11
    edited November 2008

    Finished number 6 today!!!! Got my sweet tats too, ha, ha!  Start my round of 39 radiation treatments on Monday. Hope everyone is having minimal side effects.  Oh, and I went to the eye doctor today also because I have had cloudy vision in my right after getting dust in it at a baseball game this summer and just now have decided to deal with it.  I have a cataract!  I just turned 42 in May, what the heck?  It's not ready to be removed yet, so I go back in eight months and just live with it til then.  Enough is enough!! Take care everyone and God Bless!

  • nursekim
    nursekim Member Posts: 11
    edited November 2008

    typo, meant 30 radiation treatments, sorry.

  • Wink
    Wink Member Posts: 476
    edited November 2008

    YAY - last tx - done!!!!  I got my taper too!  I had an appointment with my onc, but only saw him in the hall while I was having tx.  His nurse practitioner examined me - said everything looked good, no swelling, no swollen lymph nodes, and she said that my skin looked good (seems on the crinkly side to me).  When I asked her about the decadron taper she said that they usually prescribe it to patients to have a dose the day before and three days after - guess I fell through the cracks on that one Frown.  I'll let y'all know how the taper goes - hope it helps!

    Love,

    Donna 

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