Starting Chemo in December 2013

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    Good morning ladies!

    I couldn't sleep last night due to various SE, so I wrote some haiku poems.

    I am dedicating these poems to my loving husband of 20 years to this very day!!!!

    Here it is...

    CHEMO HAIKU

    Hot flashes, cold sweats.

    Moonless night passing by.

    Sleep escapes me.

    **************************************

    Dexamethasone.

    Constipation, my new mate.

    Will you leave or stay?

    **************************************

    Body aches and pains.

    Temperature soaring high.

    Boo hoo, I cry.

    **************************************

    Chemo's welcome sign!

    Hydration is essential.

    Drinking ditch like water!

    **************************************

    Painful, itchy scalp.

    Hair falls out like autumn leaves.

    Liberating bald!

    *************************************

    Haunting side effects.

    Chemoland scares me so much.

    Crying a wolf's cry.

    **************************************

    Severe nausea.

    Mouth sores decorating tongue.

    Glistening like pearls.

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  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    Brioche, gorgeous!!!

    Terri, Have soooo much fun!

    Amazonwarrior, Love it!

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  • kimie06
    kimie06 Member Posts: 215
    edited January 2014

    hey gals...I too am feeling pretty down these days, Im not happy to see I am not the only one but comforted to know I am not alone.  I've never felt out of control with my emotions the way I do right now.  I know better days have to be ahead. 

    I think we are all starting taxol around the same time, am anxious to share stories on that. 

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  • kjfromca
    kjfromca Member Posts: 283
    edited January 2014

    Amazonwarrior - Your Chemo Haiku - So True, thanks for sharing.

    I have my blood draw and appt. with MO this morning, if my numbers are good, I will start Taxol tomorrow.  Not looking forward to it, but want to get this over with.  For all you ladies going through the chemo in this crazy weather, I will be sending a prayer up for safe travel.  

    Kim

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  • Brioche78
    Brioche78 Member Posts: 37
    edited January 2014

    Amazone-your poem is so true! Are you feeling better us the fever down?

    Thank you for the compliments on the wig!

    Going for taxotere today at 2. After that I will only have 2 left. Hope I don't get too many side effects and that its easier then FEC. 

    All the best

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  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    brioch - great wig. Gorgeous!!

    Keep the faith - have a great trip!!

    Amazonwarrior- love the Haiku!! They are all so true

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  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    Ahhh love the wig picture, and the poems are so true!  I'm normal today Thank You Lord!

    I went to our ocal LGFG class last night, received a great bag of makeup, and awesome brands.  Only 5 in our class and most Iof the ladies just starting chemo so they had their hair, and I felt like the senior advisor with their questions, but glad I could help answer them.  Bit disappointed in the class, most of the time we all put on makeup.  I questioned the waterproof stuff because I been avoiding that due to wanting to keep my brows and lashes through all of this, and have been very careful on what I use and wash with.  One instructor said Oh it will scrub off, I said well so will my hair in doing that!  Also asked about false eyelash applying in case I need that, I was hoping to learn how to do that, they said not to apply any and just use eyeliner, which iI have always done anyway.  I said it's our loss of facial hair that will make us look sick, so I would want to do something for lashes.  They did show how to draw on brows, although the instructor had hers tattooed on.  Honestly, I think they should have ladies who have gone through this run the class, because many questions people had I felt were not answered as I would expected, I can say I have learned allot more here than anywhere.  I did learn one great new trick, making a turban out of half of a cotton T Shirt, it looked great.

    Happy Hump Day ladies, and my best wishes to all!

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  • lorreymom
    lorreymom Member Posts: 149
    edited January 2014

    hi again! 

    I just had my blood drawn & am waiting for the doc, so have some time to tell you all my adventures with chemo. 

    I was doing very well around Christmas & enjoyed this time with friends & family.  Then New Years found me in Emergency with cellulitis of my mastectomy incision...yes, 2 months after my surgery.  After 11 attempts at an IV, they finally got one in me and started me on IV antibiotics.  The next business day I phoned my oncologist to get a PICC line.  I love my PICC!!  Not as big of a PITA as I thought it would be.  And after 11 attempts in ER, I didn't want any more IV starts.  

    My cellulitis turned into an abscess about 2 days later, which had me back in ER dealing with a rather pathetic doc. He wouldn't palpate to see if there were any pockets of pus or examine me in any way whatsoever.  When I asked him if it needed to be drained, he just said "nature knows what she is doing".  I dealt with the abscess myself, along with my home care nurse, seeing my oncologist as soon as Zi could.  It is healed now, with not too much extra scarring.  Not bad! 

    After recovering from this, and a 1 week delay for my 3rd & last FEC dose, I was given the ok for chemo.  A week after this, I had a sudden sharp arm pain...long story short...I threw a blood clot to a superficial vein in my arm...not associated with my PICC, but in the same arm.  I now have to give myself injections of anticoagulant daily for the next 3 months.  So far so good with that.  And my chest CT scan was clear of clots.  

    And now I sit waiting to see if I can start my weekly doses of taxol.  My first dose is scheduled for Friday.  Oh....doc here...more later...

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    Holy smokes Lorreymom!!! So glad you are okay now!!!

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  • Brioche78
    Brioche78 Member Posts: 37
    edited January 2014

    Lorrymom...

    Glad to hear you are ok!

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  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    Lorrymom, I hope you have no problems from now on.  That sounds awful. My rash is the worst it's ever been and spreading down my arms.  So now it's my whole chest up to y neck and half way down my back.  I am taking Benadryl every 6 hours.  The itching is driving me batty.  :{ Miserable right now.

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  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    Lorreymom, so glad you're ok.  So sorry you went through that.

    JackJeak, I already lost most of my eyelashes so I've been doing fake eyelashes.  I find that they are a pain in the butt!!!!  It now takes me longer to get ready for work than when I had hair. I learned how to do the eyelashes by youtube videos and then I practiced.  I then found a site where a woman with Alopecia "eyelineher" does videos on putting on fake eyelashes, eyebrows, eyeliner.  She does a video on how to recreate bottom lashes with make-up, love it!  Her eyeliner video gives tips on how to make it look like you have top lashes. Yesterday I went to work with my fake eyelashes on, and at lunch went to the gym, then back to work without lashes with the tips I learned from the eyelineher videos and nobody could tell.  I had to point it out to my co-workers and they said it was amazing, that it looked like I had lashes.  I will use my pain in the butt fake eyelashes on my occasional night  out with friends and the tips I learned from eyelineher for work.  Here's the link:

    http://eyelineher.blogspot.com/

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  • lorreymom
    lorreymom Member Posts: 149
    edited January 2014

    thanks everone!  Yes, I am okay now.  Doc didn't get the blood results this afternoon, so still don't know if I start Taxol on Friday.  Results last week were normal & I am feeling good this week...so suspect all will be okay.  Looking forward to moving on to the next phase (closer to being over).  

    I do like going to the Cancer Centre tho.  Every time I go someone tells me how young I am.  LOL. 

    Now I just have to catch up on how you all are doing!  Hope all is well with the December Warriors!!  

    Fight on!! 

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  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited January 2014

    lorreymom - I relate too much to what you've been through!  it's been a rocky road for me, too.  it can start to feel like there are no waking hours that don't involve the hospital, dr visits, blood draws, pharmacy, phone calls, deciding whether to call the dr… or trying to catch up on house chores, etc…  

    SOOO sorry about all the IV attempts.  I'll confess that seeing the needles come out now gives me more anxiety than anything else.  Are they using the ultrasound for you?  As soon as my nurse explained that I could refuse any IV attempt without a STAT nurse/ultrasound, things got easier.  I would have to wait half an hour or so until one was available, and it was a little more painful sometimes, because sometimes they would go for deeper veins, but they only had to do it once.  

    Good luck to all you ladies starting Taxol today and tomorrow.  I have TAC #3 tomorrow, and will raise my glass (of water!) to you all.  

    Mary

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  • kimie06
    kimie06 Member Posts: 215
    edited January 2014

    lorreymom - that's a lot on your plate, glad to hear things are better.

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  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    DJJ, great video on eye makeup, I the liner tricks are very good.  I hope I keep my lashes, but I want to be prepared.  Makes me thankful I don't have alopecia now, and I know what I lose will come back!  So I need to quit whining and be thankful for that!

    Lorry mom, what an awful ordeal, I hope you are on track now, and I can't believe that doctor didn't examine you thoroughly and you were left on your own to heal yourself.  When I had my scans before chemo started they wouldn't or couldn't use my port for the contrast injection because they weren't authorized and that ticked me off because I too have bad veins to access and I have this port for that reason.  

    Who is all starting Taxol now?  With my break till 2-13 I'm feeling behind but grateful for the break.  I'm going to do the glutamine and vitamin B, even tho my MO didn't have much info on it.  Crazy my nails are growing strong and long I think it's my multi vitamin I take, but keep them short for this next poison.  

    Had one milestone yesterday, my last temp implant fill, the right is now caught up to the left, so now I keep the rocks on my chest until at least a month after chemo is finished, at least that is done!  The metallic mouth remains this week and makes me crazy, the biotene is as bad to me to taste as the metallic, the soda water rinses help but not for long.  

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  • DJJ
    DJJ Member Posts: 229
    edited January 2014


    Good luck to those starting Taxol today, I believe Kim is in the hot seat!  JackJeak you will enjoy the break.  I start Taxol tomorrow, as well as Perjeta and Herceptin.  I'm happy to get on to the next step and closer to being done, but I'm nervous about dealing with all new side effects.  My mom comes into town tonight and will be here for the first two Taxols.  It will be so nice to lean on someone for a while.  It gets exhausting dealing with the emotions of this by myself. 

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  • Leealice
    Leealice Member Posts: 87
    edited January 2014

    Sorry for the rough road for so many.

    I feel like I've been hit by a truck today. Flu like and body aches from that nasty nuelasta shot. My first 2 chemos when I started to feel better, I ended up catching something. One of my boys is home sick today. My mother in law is taking him to the doctor. I pray I don't get whatever he has.

    count it all joy- You deserve a normal chemo with minimun side effects. I hope you get that this time

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited January 2014

    getting premeds for last AC rx, will be starting taxol 2/13.  I already ordered L glutamine  from Amazon and will be getting B6.  The neulasta must be working my counts were up for. 1.5 to 11.7. I was afraid the Claritin lessening the bone pain would lessen the effectiveness but it doesn't

    Good  luck to the others getting chemo today and tomorrow 

    Barbara

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  • kjfromca
    kjfromca Member Posts: 283
    edited January 2014

    Mikesgirl - What about an oatmeal based lotion or calamine lotion?  Rashes are miserable, sorry you are going through this. Sounds as bad as poison oak.

    Lorrymom and count it all joy - I am hoping the rest of your treatments have no complications.  You two have gone through so much.

    I had my first douse dense Taxol today.  I went in at 9:30 am calif. time and got home at 3:00.  Long day.  First I had an IV with Zofran and Decadron, then I had an IV with Benadryl and something else (I can't think of the name) it works to help keep you from having an allergic reaction to the Taxol.  The IV Benadryl makes you really tired and  kind of spacey.  Then I had the Taxol.  I did not have any allergic reactions, thank God.  My stomach is not bothering me, but I did take a compazine as a precaution.  My fingers are a little tingly and warm.  My legs feel tired, like I went on a long walk.  However, I am a little anemic, and it is the end of the day, so the leg issue could be from that.  That is it so far and I will post tomorrow after  I get the Neulasta shot.  I am hoping that we all have an easier time with this next half of our chemo treatments.  

    I am going to order the L glutamine and B6 if my MO gives me the okay.  I forgot to ask her yesterday.

    DJJ - I hope tomorrow is easy on you and I hope that you have a good visit with your mom.  

    Take care,

    Kim

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  • lorreymom
    lorreymom Member Posts: 149
    edited January 2014

    the problem with your eyelashes falling out is that they don't actually fall out...they fall in...and are driving me crazy!  Is anyone else continually fishing eyelashes out of their eyes???  Or is it just me?   Grrrrrr! 

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  • beths1
    beths1 Member Posts: 44
    edited January 2014

    Mikesgirl 17:  Me too!  My rash is the worst its been so far, all over my face,  arms legs back, fiery and bubbly.  Can't stand it!  I am using Benadryl and a steroid cream...It just seems like it needs to run its course.  I am very worried about AC # 4 next Tuesday with this time being so bad.   I also  hear that the Taxol can cause rashes as well  UGH!   

    Lorreymom~   you have been through so much already and all sound scary.  I wish you smooth sailing ahead....you deserve it! 

    Beths1

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    crazywabbit, kjfromca & others: Do you know what doses of B6 and L Glutamine to take to be effective for neuropathy?

    What about Benadryl? Who prescribes it? What's the dose?

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  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    Hi girls.  I called my MO and asked if I could take a steroid pill to see if it helped my rash.  I had a fairly bad rash before my last a/c and I took a steroid pill that night.  The next morning it was better.  I'll let you know if it helps.  I have been putting calamine lotion on it and that helps some.  Aquaphore lotion helps a little as well, but SOOOOO greasy.  Might as well be vasaline.  Sorry you also have a rash Beths1.  It's an awful feeling :{  I too feel like it's just got to run it's course. 

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited January 2014

    B6 50-100 mg, never more then 100 since higher doses can cause a neuropathy 

    L glutamine 30 gms at day either 15 2x day or 10 3x daily. You need to get the powder since it would be way too many capsules to get that dose, mix in juice or something. I bought mine on Amazon but the local health store probably has it. I just did not want to go driving around looking for it. This is what I ordered

    http://www.amazon.com/gp/product/B00024CSPY/ref=oh...

    I talked with my MO today and he said definitely the B6.  The glutamate would not hurt and a lot of people take it but he dd not have enough data to 'recommend' it. I also asked about b12 and he said the same could not hurt but doubted it would help much.  I may take some b12 since it will not harm me. 

    Benedryl is over the counter, 25 mg every 6-8 hours. Will make you sleepy so good for sleeping pill as long as not too groggy in the AM. Careful driving since you may have slow reaction time and could get a DUI if in accident. 

    Barbara

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  • RobinLK
    RobinLK Member Posts: 840
    edited January 2014

    Started my Taxol/Herceptin today. Can't really tell you much about it. Slept almost the entire time. Arrived at 8:15 am and left at about 2:00 pm. Benadryl, one of my pre-meds, knocks me out. Came home and took another 2.5 hour nap. Had Ativan and compazine before going in. Felt totally sedated, but it was actually beneficial. My hot flashes and night sweats are coming in about 2 hours waves each night. 

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  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited January 2014

    beths1 and mikesgirl - sorry about the rashes you are dealing with.  yuk, yuk, yuk.  I have a recurring, very itchy rash that I get on my neck and torso (usually when I am stressed, so I'm amazed it hasn't shown since chemo), and I know that constant discomfort and difficulty getting sleep.  hope you keep finding the things that make it manageable, and that is clears up soon.  it's got to drive you crazy knowing the next treatment is coming and the rash hasn't cleared yet.  :(

    Leealice - what did your mother-in-law find out at the dr.'s today?  I do hope you don't catch your son's bug, whatever it is.  Sickness in the house makes things so complicated, and steals away that down time between treatments that we all hope for.  

    Kim & Robin - I'm glad your day went well today, and no allergic reaction to the Taxol.  Yay!!  Kim - what do they have you do to combat the anemia?  

    This has been my best day since I started treatment!!  Why??   I woke up early and emailed with friends I've needed to catch up with.  I had great fun visiting with my sister who is in town and went with me to the dr and then treatment (until I passed out from the Benadryl!)… a friend sent along amazing Lindt chocolate with orange and pistachios…  came home to a beautiful vase of flowers from a friend, which I put beside my bed... had leftover chicken and dumplings for lunch that was the perfect comfort food… my husband did the driving to take my daughter to school and back and do a CVS run for me… My younger daughter gave me a foot rub when I first laid down (ahhh!)… then I heard her playing with a needle and bandages at my feet doing blood draws on her bears (!)… then the absolute BEST part: I fell asleep and slept from 2:30 to 9:00 tonight!!  Didn't even wake up for hot flashes or potty breaks.  It was HEAVEN!!  I haven't slept more than a couple hours at time, or more than 4 hours in a single night since chemo started.  Thank you, Lord, what a blessing!  And it didn't hurt to wake up to my husband telling me there was a Chipotle burrito waiting for me in the fridge, and an email from a friend from church saying we had meals coming for the next 4 days.  Seriously, this is a red letter day for chemo!   :)

    Those of you using Benadryl for sleeping… does it dry out your mouth even more?  I want to sleep, but I fear making my mouth any drier than it already gets.  The MO also recommended something called SleepTime (OTC) that I could try, but my hubby couldn't find it at CVS or Walgreens.  Anyone heard of it?  His next recommendation was a prescription called Temazepam.  Anyone have experience with that one? 

    Hope you're all having a comfortable night.  

    Mary

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    yay for your wonderful day Mary!!!   Hope you poor rash ladies feel better soon <3

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  • lorreymom
    lorreymom Member Posts: 149
    edited January 2014

    They told me it was ok to drink coffee the day of chemo.  But I am not so sure now.  One study showed it increased Taxol chemoresistence in lung tumors.  

    http://www.mdpi.com/1422-0067/13/5/6236

    I am not going through all this crap just to have it not work!!  Guess I have to forgo my morning coffee.  What I don't know is for how many days???  For the entire 12 weeks?   Don't know if I can do that.  

    Bonus though...2 cups of coffee per day has been shown to increase the effectiveness of tamoxifen, which I will be on after chemo.  Woot!  I love my coffee.  

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  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    Morning.  My rash appears to be getting better.  It seems less angry.  However, it usually gets worse as the day goes on.  If it gets better and better I will let you know.  I just took another steroid.  If that helps me hopefully it could help other rash sufferers:)  I would love to hear more about Taxol from the ladies that just had it.  I start Monday.  My husband and I leave on the train for Boston tomorrow and come back Sunday.  So looking forward to some fun time.  I'm hoping this rash is under control so it doesn't ruin our good time.  Have a great day ladies.

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