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March 2011 chemo-lounge

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Comments

  • Anniemomofthree
    Anniemomofthree Member Posts: 370

    Hey chemo lounge ladies - Just had my cocktail yesterday, a little bit 'o TCH  (#4 of 6).  All is well.  But then again, I am still cranked up on steroids. Love them!!!  

    Warm thoughts and prayers being sent your way...your cocktail will be sure to do its purpose.  Stay positive! 

  • divinemrsm
    divinemrsm Member Posts: 6,621

    lilylady, it's hard for our loved ones to wrap their heads around our diagnosis.  My siblings and various other family members all took the news differently.  The overly dramatic ones are hardest for me and DH to take.  But they mean well.  I like when people are not syrupy sweet or overly sad.  A cousin of mine who's a lot older than me but had ovarian cancer years ago sent me the perfect card with a short note, understanding and encouraging.  Loved it.  Not everyone can find humor where we're at and it's because they're not walking in our shoes.  I would react completely different now if I learned of someone's canser dx now that it's something I'm going through.  

  • supersally
    supersally Member Posts: 158

    I had my port put in yesterday.  My BS does it under general anasthesia.  I was a little groggy upon first waking up, but other than that, felt great.  I'm a little sore on that side, it's under my collar bone on the left side.  Other than that, no issues.  I couldn't sleep again last night, even taking Xanax & pain meds.  Ugh!  My therapist suggested writing for 10 minutes before trying to go to sleep, to get all the thoughts spinning in my head out on paper.  I'm journalling anyway, so I'm going to try that. 

    Going wig shopping today wtih step-daughter and BFF.  We are taking a camera.  I am hoping it will be a good experience.  I really appreciate those of you that have already done your first (or more) tx putting your day to day physical symptoms down.  I'm so glad to know what may be ahead for me, it helps reduce my anxiety.

  • mamaoftwo
    mamaoftwo Member Posts: 9

    Hi everyone - drifting over to this lounge from the Feb 2011 boards, hope that's ok. I started AC + T the very end of February (2/24) and then had to postone my chemo #2 another week because of a throat infection.   Tomorrow (3/16) is chemo#2.

    Hair is coming out fast and furious.  My friend's daughter cut my long hair into a pixie cut last Friday.  I loved it, though I haven't had short hair since I was 6 months old.  But now four days later, it's getting out of control.  It was good while it lasted, but I'm thinking of ducking into a barbershop on the way home from work and shave the head.  Surprisingly, I feel completely fine and at peace with the hair loss.

  • charlottesmama
    charlottesmama Member Posts: 36

    Hi Husker, and all! After my port "placement", I too had "a heaviness in my chest and feel like I can't draw a full breath, but it is just a sensation, not really a breathing issue." I still get that feeling sometimes when I bend over.

    Also read "Crazy, Sexy Cancer" and agree that it's a breath of fresh air. I share much of her attitude. My hat says "death is NOT an option". Have you seen the riff on"Keep Calm..." that says "Freak Out and Break Shit!"? LOL! I think I need that hat too.

    Cheers ladies. Bottoms up! Ooh... my port...

    Michelle

  • Huskerkkc
    Huskerkkc Member Posts: 471

    charlottesmama,

    I'm so glad  you felt the heaviness was just a sensation. I'm at work today and feeling okay-a little sore-but nothing that Motrin can't handle. But the chest pressure was starting to bother me (too quiet in my office right now and thoughts tend to drift to you you know what. So then I was worried maybe they had nicked my lung or something, even though they did a chest x-ray following surgery and all was fine. And I can take a deep breath without pain or passing out or anything, so I know I'm fine. Just good timing on the reply. Geez, every little ache or pain gets us going down that wrong negative path doesn't it?!!

  • mdg
    mdg Member Posts: 1,468

    Hey ladies...glad you are doing well and got adjusted to the ports.  I had weird sensations too but I have my port in the arm, not in the chest.  So today the hair "down south" started to shed (sorry if that is too much information but I checked my modisty at the door and we are all going through this right?).  So my question for the ladies that have already lost hair is where did it start?  Down south or your head?  I am doing cold caps to save the hair on my head and starting to freak out the hair on my head will start falling out!  This next week is going to be tough waiting to see if the caps do their job.  I did rinse my hair today with cool water and not one hair on my head came out (I have white tile in my bathroom and dark brown hair which is make the hair watching way too easy!).  Someone talk me off the ledge...please!  I am 13 days post my first chemo FYI.  I also had a small nose bleed this morning.  I read that can happen with chemo.  Joy :)  Other than that, I am good.  I actually took a aerobics class this morning too!

  • carberry
    carberry Member Posts: 997

    mgj yeah to the aerobics!! My best days were always the first and second day after treatment, partly due to the steroids, I would walk miles, then on day three and four I would crash.  All said I think the movement really helps.  I lost my hair "down there" after treatment #3.   I guess my leg hair really slowed down before that but I didnt really notice, hey its winter.  Did not lose hair until #3 either. The onco nurses thought I was a freak of nature and that I might be the first in the record books to not lose hair...but then it came out in clumps, never in the showere or on my pillow but when I brushed it.  It finally got very thin, so i had the hairdresser cut it in a 1in spike all over my head.  i never shaved it close cause my theory was "if I dont lose it all I would have somewhat of a start on the new growth"  I was right, never lost it all. So now it just needs to fill in and grow.  I am 3 1/2 weeks past last chemo. Found my first chin hair yest. and I may have to shave next week. lol

  • christine47
    christine47 Member Posts: 846

    mdj,

    I still have not lost all my hair down there, 60%, after 3 rounds of chemo, and have stuble on my legs.  My head is another story, only 10% of 1/4 nongrowning hair left and some fuzz.  Very curious about the cold caps, how often can you shampoo and style?  I wish I would have known about them prior to chemo. 

    carberry, any regrowth yet?  keep us posted, we need hope!  sorry about the chin hair, that will be my luck.

  • carberry
    carberry Member Posts: 997

    christine47 yes it think it is kinda filling in a little, but not nearly as fast as the leg and chin hair.  its also coming in very gray. I was hoping to have hair by summer...cant imagine wearing a wig when its hot....but i dont think its gonna happen. 

  • charlottesmama
    charlottesmama Member Posts: 36

    Hey ladies! Funny how we're all thinking about the same things. Just a few days ago I quearied my Fab Feb gals about my "default" Brazilian. Yeah, I've lost most of it down there, and it feels downright weird. I prefer my natural 'fro below.

    But let me tell ya about the hair up THERE. I had my head shaved last Friday, and I gotta tell ya, it feels great! Honestly. Well, a little itchy at times. Mind you, I'm not gonna keep it this way forever. When my hair grows back, I intend to keep it short, but not BALD! I really do feel good. I wear a baseball hat and that's it. And, let me tell you ladies, I had some MAJOR hair! I was as freaked out about losing it as any of us. And I can't claim any moral high ground here like, "Oh it's not as bad as losing a BREAST!". Pttthhhhh. Well, it's not, really. But hey, I adjusted quickly and it ain't so bad! I highly reccommend a light dusting of something sparkly in your stubble.

    xoxo

     

     

  • charlottesmama
    charlottesmama Member Posts: 36

    Oh for cryin in the sink! What happened?

  • Kymn
    Kymn Member Posts: 887

    Hi ladies funny the things that happen to us not funny haha mind you I mean seriously do we really need chin hair after all this REALLY and what the heck nobodies should come back grey we should all get beautiful glorious locks in the colour of our prefrence....just sayin...lol  well I am off to have a rye and diet....prolly more than a .....in the hot tub with DH . Thursday is chemo day so that should give my liver enough time to clear it out before I put it back to work lol . Hope your all haveing a great evening

    Kymn

  • supersally
    supersally Member Posts: 158

    So long as the hair DOWN THERE doesn't come in grey...I can color it anywhere else, yikes!  Does it itch?  Chin hair sucks!  I have had stray ones off and on for a few years, which my mom thought was hysterical - NOT

    Went wig shopping with step-daughter and BFF today.  I wear my hair from top of the shoulder and up length, haven't had long-ish hair since 3rd? grade.  Wig shopping was fun-ish.  I found 2 reasonably priced ones that I'm getting.  Both are longer than my hair cut now, which is growing out from last summer - "please cut it off, it's too hot" hair.  I'm going to get one in a reddish blonde and one in a dark blonde close to my current color.  They also had all kinds of hats and turbans (bleh) and sleep caps and stuff there.  It was actually fine, fun is possibly an overstatement but it wasn't too bad.  I'm thinking that perhaps the long wig is an aspiration for post-chemo hair growth.  Also, DH liked it in the pics that DD took, so we'll see if I have the patience for shoulder length+ hair.

    BTW, heard from a stylist that Nioxin products can help with the hair.  I found some at my local beauty store that sells nail polish, etc.  I am using it preventively now. 

    Kymn, I'm with you, girl, having a glass of wine as I type.  Liver will just have to "man up". 

    I also had a fill today.  More sore from the fill than from the port surgery.  PS happy with how I'm healing.  Tape from bandage over port more itchy than anything.  If it's not one thing, it's another, right?

  • mdg
    mdg Member Posts: 1,468

    Christine47:  I can only wash twice a week in cool water, but it's not bad.  I don't really have greasy hair so by day 3 and 4 I just rinse with cool water and scrunch it and let the waves come out.  I can only dry it by air or on the cool setting of the hair dryer, but it's fine.  I am glad to have hair.  I am just hoping the caps work for me after all the effort. 

  • supersally
    supersally Member Posts: 158

    Maria,

    They have some great dry shampoos out there for the days you don't wash your hair.  It just helps it to feel fresher and the style actually holds better after a few days of not washing anyway.  You can probably find at local beauty store.  I don't wash my hair every day normally and have used it primarily in the summer when it gets so hot here in Dallas on the off-wash days.

  • Silia
    Silia Member Posts: 265

    If my hair didn't require dye, I might have considered the cold caps! The funniest things I've read here that I've happily repeated to others:



    You know you're a bc patient when you go into the dentist office and start unbuttoning your blouse...



    Yes, they're fake - my real ones tried to kill me! (this is someone's sign off with her diagnosis - isn't that great?!)



    I had a third one but it's slipped my mind (chemo brain maybe...)

  • mdg
    mdg Member Posts: 1,468

    Supersally:  I know there are dry shampoos but I don't think we can use them...I don't know for sure what's in them but we can't use any chemicals.  I have to use small amounts of organic, gentle, sulfate/paraben free shampoo.  As far as the hair dying...I too dye my hair but will use the colormark root touch up through chemo to cover the gray on my part.  I will just start to wear my hair back more so only the part is exposed so you can't see the rest of my roots.  I can deal with washing only twice a week...even working out I don't have greasy hair so by day 4 I am ready to wash but I will throw a hat on if I have to.  So hoping to keep the hair so I don't care if it's dirty.  Will keep you posted. 

  • Huskerkkc
    Huskerkkc Member Posts: 471

    Silia,

    I love the dentist joke! My husband is a dentist. I'll have to tell him that so he knows how to respond. "Honey, it's not a come on-the poor woman just forgot which doctor (of the 12 she routinely sees) she had an appointment with today!" He will love that.  

  • migallen
    migallen Member Posts: 46

    Hi Maria and ladies.

    I love reading these posts, so helpful.  I did get my chest port in last Thursday and it is uncomfortable and annoying.  I just want to scratch it.  I did a lot of shopping this week to get ready for my 1st chemo this Friday.  Got biotene, biotene gum, lubricating eye drops, immodium, popsickles, crackers.  Am I missing anything else.  If you could rate the worst day post chemo from 1 -10 with 10 being worst, what would you rate it?  I'm so ready to rock and roll and get this process started.

    Maria, I decided not to do the cold caps after all.  Thank you for sending me the info I appreciate it.  I'm just gonna go with it.  Got a nice wig today and have to learn how to rock a scarf!

    min

  • mdg
    mdg Member Posts: 1,468

    Hi Min, sounds like you are ready to "party"!  On my worst day I just felt like I had horrible body aches like you get with a bad flu.  For me the body aches started on Saturday (I had chemo on Wed) and continued on Sunday and lessened a little on Monday.  On Tuesday at 2am I started with the bone pain and that was the worst.  Later that day it just turned into more body aches and the intense bone pain (shooting pains) were gone.  When I woke up on Wednesday it was like I was a new woman - no pain and felt great.  Despite this stuff, I did workout Mon-Fri since chemo.   I think that helped.  I was lucky no - nausea at all.  I did not take anything post chemo other than the decodron the day after chemo as instructed.  Constipation was an issue for me..so plan for that.  We will see what the next cycle brings.  Even with the body aches, I managed to make dinner for my family each night and did have an appetite though nothing sounded good to eat.  I was eating bland - pasta, mashed potatoes, toast, pretzels, soup and popcycles. 

  • divinemrsm
    divinemrsm Member Posts: 6,621

    Something that bothers me are smells.  Different food smells, certainly even the faintest of bathroom smells, and random fragrances.  No cinammon or vanilla or cookie candles burning as they turn my stomache right now.  The other day my husband sprayed lysol in the kitchen and it put me over the edge for the rest of the day.  Thank goodness the weather was mild enough to open many windows in the house to get rid of that smell and I told him 'never again please!'  I'd like to find some mild background fragrance that's tolerable but indiscreet.

  • kriskat
    kriskat Member Posts: 116

    Had 1rst TCH Monday. So far, so good with the se's! I know as the week progresses it'll probably get worse. Drinking at least 100 oz of fluids so far!!! Ate like a piggie yesterday!

  • ckelly4181
    ckelly4181 Member Posts: 5

    So I'm sitting in the chair for my first cocktail and it looks like it's going to be an all nighter.  I will be here for about six hours while they slowly monitor my reactions to each different drug, TCH.  I have a ton of homework to do today, but I'm procrastinated by reading through everyone's posts and possibly downloaded a movie from netflicks (I'm so lazy).

     For the ladies having chemoport discomfort:  I had mine in about two weeks ago and I hate it.  I wasn't able to raise my arm above my head for far too long.  I am a active person and I like weight lifting, running, and yoga.  Two weeks later it's finally feeling better, still looks like an alien laid an egg in my chest, but the bruising is finally going down.  I starting to do yoga again about 5 days ago and it was tough and ungraceful, but I'm getting there.  Last night yoga session was much better and stronger.  So my advice is to hang in there, vent to a few people, and you should be feeling better (not normal, but better), in about a week.  

     Good luck everyone, I'll let you know how my Hot Butter Rum tasted in about 6 hours, or whenever I give up on my homework.  :) 

  • MIchelle67
    MIchelle67 Member Posts: 42

    Migallen: I've done one TC infusion so far. For me the 3 and 4th days were the worst due to pretty severe fatigue and bone pain from the Neulasta shot. My body felt better by day 5, but my mouth then dried up despite drinking constantly. Constipation was also an issue by days 5 and 6.

    By day 8 I felt myself again, although I found I tired out a little more easily than before chemo started. That's the day I cut my long hair. I now have a very short pixie cut. My head tingles and itches occasionally and I know my hair is due to start falling out tomorrow, day 14 post-first chemo. 

    I opted to not do Cold Caps. I bought some pretty scarves yesterday to be ready. There are some great YouTube videos on tying head scarves. 

    My advice to add to a chemo prep list: Gatorade (my onc recommended it when drinking 90+ ounces of water a day still left me with a dry mouth and constipation. I kept drinking all that water but added one or two 32-ounce bottles of Gatorade a day and felt better pretty quickly. Onc said water flushes your system but the electrolytes in the sports drink restore the balance in your body. I will always keep it on hand now.

    Also, Colace (stool softener) and a gentle laxative (Miralax or Sennakot) because the anti-nausea meds can cause constipation in some people.

  • maxineo
    maxineo Member Posts: 199

    Strangely, my first day was the worst. Nausea and tired.  Both abated with each passing day, and I'd say I felt pretty 'normal' 6 days post-chemo (I've only had one, mind you). More tired than usual, but workable. I agree with the exercise...totally makes me feel better. All I'm doing is walking.

    I went and got a wig yesterday.  A local spa has an arrangement with the American Cancer Society...they fit you (with what is in stock or can try to get another) and it's free!  Check around. Frankly, I don't see myself wearing it much except when it's important to the kids (school functions?).  But it's good to have it. I will have to check out scarf tying...I am completely clueless on that one.

    Michelle67: good idea on the gatorade. I drink a lot of water, but I actually think I might be overdrinking it...that swimmy head feeling (hard to distinguish from chemo brain).

    charlottesmama: you make me laugh! I love the default Brazilian...

    Kymn and supersally: have a drink for me, please. Man, they say you can't drink during chemo...I've never needed one more!

  • lilylady
    lilylady Member Posts: 478

     I just came from my first Onc visit and was certainly surprised to find out  I am not a TN. Pos for Her2. He doesn't know how that info got to me but he apologized and said he would look into it. I liked him and do not think I will go get another opinion. He gave me 2 treatment options and listed pros and cons for both. I have elected to go with the TCH X 6. I am going to have to look up the Carboplatin-not very familiar with that. He also said they do not give the Nuelasta routinely-if I cannot keep my counts up then I will have to get it. I am thinking that this is all good-no AC and no bone throbbing Nuelasta.

      It finally feels like I am starting the fight. Getting my port on Monday and first chemo on Weds. Scans this Friday at 7am. I will be an official member at last!!

      Tomorrow is going to be 70 degrees and sunny here in Ohio so I am going to plant some pansies and mulch the 400 tulips I planted last November. They are up about 4 inches. Gardening is my passion especially in the spring and on my Bucket List I have always wanted to take the whole spring off-getting my wish-guess I can't quibble on how I got here.

    Now it's off to the knee doctor for my 5 day post-op visit. Walked 3 miles this morning at 5am with the dog so I think all is well. Some swelling and stiffness in both knees but heck it has only been 2 weeks.

  • timerdog
    timerdog Member Posts: 51

    Add me to your lounge Maria, I like my drinks like I do my sex, dirty! 

    I just had first infusion of 4 rounds of DC, most women getting DC get 6 rounds so I feel lucky on that front. I was told in January that I wouldn't need chemo but I requested an Oncotype DX and the number was 27, they also found fault with my original pathology so it was smart of me to request extra testing. I trust the people that do the Oncotype DX. THe odd thing is I just for my FINAL pathology report and it still states the tumor is less then a cm, Oncotype DX says it is just over 2 cm. Regardless, I am now in chemo until May 15th. Got a short hair cut today and plan to go shorter as I lose my hair.

    The chemo nurse says I have good veins so no worries there. I am hoping to continue with my exercise and diet as healthy living is very important to me.

    Maria, if you can do it so can I!! You inspire me!

    I am scared, and cry often but I know I will be "just fine".

    Trish 

    Just reading through the post and see that nobody else is on DC which I thought was pretty common.

    Here is the medical name off of my chart "docetaxel" and "cyclophosphamide" as best I can read the Dr.'s writing anyway. 

  • mdg
    mdg Member Posts: 1,468

    Timerdog:  Welcome to the lounge!  I added you up top...what is your fun "cocktail"?  I am drinking pinot grigio although I am considering ordering something stronger like a shot!  Glad you found us hanging in the lounge.  I get done with chemo the first week of May so in May we both can be finished with this crap!!!

    Lilylady:  I guess you are making me think I should get off my butt and plant some flowers too.  I am in MI so it will be warm here too.  Where are you in Ohio?  Are we close or are you south?  It is nice here today...I got ready for spring and didn't wear the winter coat today...just a jean jacket!  That was nice.

  • Kymn
    Kymn Member Posts: 887

    Hi ladies, well tomorrow is D day, tried on my wig for DH today and he really liked it , got my scarves, hats should be here tomorrow or next day I guess Im as ready as I am going to be. Still havent cut my long hair yet. Not sure if I should just wait prolly will feeling scared to do that but really what is a couple extra days right. Going to head to bed early tonight with a sleeping pill. Dont want to be fretting all night long time to just get this show on the road. I guess I wont be finishied unitl July :( hopefully before my birthday July 31 that would be a great birthday gift. Good luck to all who are starting tomorrow with me when were all done we will meet in the lounge and have a real drink not just a virtual one lol

    Kymn

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