November 2014 Starting Chemo Crew

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  • Leslienva
    Leslienva Member Posts: 489
    edited December 2014

    I actually WAS a chemo angel several times--for a breast cancer patient and for a little girl with cancer. It was very rewarding, but extremely heartbreaking when my little cancer patient passed away. Her mom wrote me that my cards and gifts really made her happy, so I was so glad I could help make her last months special.

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  • bonnied
    bonnied Member Posts: 74
    edited December 2014

    Dee, Thanks for the info on chemoangels. I just signed up. I will post it on our FB group too. How cool.

    Marcela, The port will actually make your life easier with chemo. It is a little pain at first because of the procedure but once it's in chemo will be a breeze. I hope it will go smoothly from here on out.

    Sheeba, you look so pretty! You and Dee are ahead of me and a few others in hair loss progression. My neighbor made me lunch yesterday and shared her wig (from her chemo days) and all her scarves. I was actually excited! I am taking the Look Good Feel Better class this saturday so will tote my two wigs and a scarf or two and learn some new tricks. I gotta figure out how to put the wigs on and make the hair look natural. The variety will be fun. My tree guys at work are supportive. One day I will walk in and sit down and pull my hat or scarf off and bare my soon to be bald head and watch the looks around the room.. hahaha They all just want me to be OK.

    Leslie, that is awesome that you were a chemo angel patient and mentor. It sounds bittersweet..fulfilling and loving to be a part of a group that cares for others.

    and I want all of us to be OK.

    xoxo

    bonnie


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  • cc3373
    cc3373 Member Posts: 100
    edited December 2014

    Hi Dee :)

    I'm still holding onto the thin layer of hair I have left :)

    Mine hurt and itched for several days but for me I just gently brushed it out, cleaned brush and kept in topknot on head to sleep and in ponytail days (with some brushing in between). Those hurting days passed. I am not shaving, I just can't let go of it :( so I comb over and wear hats outside. Sunday we went out for lunch and I did go hatless in the restaurant. If it were me I'd go wigless, oops don't have one still, but however you feel comfortable warmth wise and setting wise ... I'm hoping you can hold onto your hair too :)

    Thank you, am much better now I can get healthy foods in I'm feeling better energy too :)

    How are you doing, where are you in your rounds???

    I didn't know about the chemo angels - that package sounds awesome!!!

    Love and hugs to you :)

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  • Dee4C
    Dee4C Member Posts: 27
    edited December 2014

    Leslie, oh that's so nice that you were an Angel! What a nice program. It's the little things that can bring a bit of joy to someone's day. So sad about the little girl though :(

    Bonnie, glad you got yourself signed up for a Chemo Angel! I had went to the A Look Good Feel better class and the makeup was cool. We didn't learn anything about wigs or scarves though so that was disappointing. But I know others have reported that they learned a lot in their class so they must be different. Hope yours is informative. I don't know how to make my wig natural looking either! Have to play around with it. I think that's why I prefer to wear the hat hair, cuz the hat hides the hairline!

    Chris, Glad to hear you are feeling better and able to eat healthy! I am still doing well, other than the hair issues. Round 2 for me is on Monday. First time wasn't really so bad so I'm hoping it all goes smoothly and the SEs aren't any worse. Have to gear up for remembering to do all of the little things like the mouth rinses, water drinking, Claritan, etc...been a few weeks since I've thought about that. My vein is still black and blue and swollen. We are going to avoid that area this time and try another. If the new vein ends up looking this this one, I'll get a pic line for the last 2. I don't think most people are getting pic lines on this forum, mostly ports. Love and hugs back at you!

    Take care all. Going to go watch a Christmas movie with the kids :)

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  • Janiner
    Janiner Member Posts: 58
    edited December 2014

    So this might not be the best to say to all depending on how they feel right now. But, second round se on ac was much worse. With that being said...  Tonight I went out for a steak dinner and a side of pasta. I ate the whole thing and my taste buds were so pleased. I gained so much energy from a good full dinner. Ah.. so content tonight. Hugs to all and hopes to all have a tasteful meal.

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  • Astarte
    Astarte Member Posts: 45
    edited December 2014

    Thanks for the well wishes ladies! My second round of chemo went quickly and uneventfully. I pestered one of the docs to look up my recent breast MRI and tell me more about it. I was told the tumor had not changed in size, but I wanted to know if it changed inside/compositions-wise, and it had. So that's good news. I have been feeling pretty good for the most part, especially compared to last time. Last round I spent this whole week and all of the next week with my head in a bucket.

    I did get a new nausea med, phenergan, and it works better than the Zofran, but I'm still vomiting some. Haven't called them yet as I can still keep some food down.

    I hope everyone else is doing well too!



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  • Redhead01
    Redhead01 Member Posts: 47
    edited December 2014

    Sooooo relating to the bad moods/vibes thing.....was just telling hubs that I need to snap out of it and remember to be grateful for a warm home, food, loving dogs to snuggle with, over a dozen encouragment cards from friends.....we all get it.  Even each side effect isn't all that bad.....but combined and for days on end....takes it toll.  Week one over....its uphill from here now.  Seems like the big D was worse this second round, and yes....doing little chores are fatiguing.  Expecting and planning on doing barely nothing after the next two remaining ones.  There's plenty of nothing to do in February so I'll catch up on whatever then.  I don't have children at home anymore, but I would suggest those that do, start making good on accepting the help of anyone who offered.  It will bless them, and you.  Hugs to you all.

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  • Cookies
    Cookies Member Posts: 41
    edited December 2014

    hi everyone - started chemo 11/19 - scheduled for dose dense AC every 2 weeks for 4 cycles then 12 weeks of weekly taxol - I am triple negative 41 year old with a 4 and 7 year old. I hVe metaplastic (not metastatic) breast CA - very rare - 1 in 1.3 million cases of breast CA - my ki67 proliferation rate was 90% and they say my cancer is chemo resistent - responds only 30 to 40% of the time. I have 4 small lung nodules of undetermined significance - have to repeat the CT in 3 months - my hair has fallen out - I am constantly nauseous - very tired - trying to stay positive- what the mind believes the body can. Achieve - right

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  • TallyLassie
    TallyLassie Member Posts: 56
    edited December 2014

    Hi Cookies! Welcome to the club no one wants to belong to. You're one in a million! I wish you the best as we go on this journey together. Hugs.

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  • knittingPT
    knittingPT Member Posts: 156
    edited December 2014

    hey everybody I haven't been on here in awhile because I've been onfacebook! I just finished my third ac last week and the fatigue is catching up with me!! A little bit of yummy ache too but not too bad. Thanks for telling us about chemo Angels. I just signed up. At first I was getting a lot of cards, texts, phone calls ftom friends but they have slowed down quite a bit recently. I can't wait to get my round 4 done because then I get two weeks off before starting taxol. I cannot wait!!!! For those with SE hang in there! We are all going to get through this!!

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  • Cookies
    Cookies Member Posts: 41
    edited December 2014

    how is everyone dealing with constipation? I am taking miralax and 2-3 colace per day plus tons of water - diet could be better but food is revolting besides white carbs - which I have tried to limit. My husband shaved my head tonight with the help of my 4 and 7 year old - my 4 year old told me I look like a zombie and I think she may never cut her hair again but my 7 year old son told me it looked "cool" and that I'd save a lot of money on hair cuts. Did anyone else have a constant stuffy nose with chemo/nuelasta? I am taking the Claritin so bone pain not so bad but I am softly of clear boogers!

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  • bonnied
    bonnied Member Posts: 74
    edited December 2014

    Cookies, Constipation can be a pain for sure…You can try adding ground flax seed to your protein smoothies, chia seed also provides bulk once it soaks overnight. I found that drinking prune juice twice a day (those little cans) works pretty well too and is all natural. Eating prunes as a snack works too. Drinking water is a must. Bone broths might help too with nourishment when you don't feel much like eating. Welcome to the club!


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  • amylsp
    amylsp Member Posts: 188
    edited December 2014

    Sorry I've been missing in action. I've very behind in the posts and it's hard to catch up. Just had my third THC yesterday. Three down three to go! On my gastroenterologit's avice, i started senekot with slool softener the day before chemo. I ended up waking up every two hours last night with bad diarrhea, but if it means my heartburn will be less intense than it will be worth it. My bad days are usually Sat night through Tuesday morning. Will see how it goes this time around.

    Starting to get used to wearing my wigs in public. Still feels weird! Got a nice shoulder length wig through my insurance and a cute pixie cut wig through Paula Young.

    Good continued chemo journey to everyone!



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  • Leslienva
    Leslienva Member Posts: 489
    edited December 2014

    Amy, Senecot was the only thing that worked for me. Miralax did nothing

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  • TallyLassie
    TallyLassie Member Posts: 56
    edited December 2014

    Hi all: I, too, have been going back and forth from Facebook to here. It is so much easier and organized to post per topic on Facebook, but I want to stay with the original crew here. I'm so excited to be entering my "good" week of feeling almost normal before my 3rd infusion on Dec. 22. I'm going to get all my Christmas stuff done this week and celebrate the Solstice on December 21, since Christmas will be Day 4 and I know that is about as bad as it gets.

    I'm finding that the old fashioned simple stuff works great. I use baking soda in water as a mouth rinse. The other day I took a warm bath in epsom salts (helps my sore bum and muscles) and read the package. What do you know, if you drink some in water, it is a laxative! I think I put a teaspoon in 8 ozs. and it tasted horrible, but it worked pretty gently in a few hours to clear the decks. I think prune juice is a great idea as well. When I was a kid, my grandmother always made us drink it, and it works.

    Hope you are all feeling OK or better today!

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  • Leslienva
    Leslienva Member Posts: 489
    edited December 2014

    My grandmother made me drink prune juice once a week. Probably why I can't stand it now! lol!

    I'm having my normal week--no SEs, feeling like I used to, but back for Round 3 on Monday!

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  • Cookies
    Cookies Member Posts: 41
    edited December 2014

    is anyone having constant nasal stuffiness? Not sure of its the nuelasta shot or AC - is constant and dripping - trying nasonex and Claritin

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  • Leslienva
    Leslienva Member Posts: 489
    edited December 2014

    I heard when you start losing nose hairs, your nose can get runny...

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  • Mrshq1
    Mrshq1 Member Posts: 20
    edited December 2014
    Just checking in. Sounds like I'm on par with everyone else and the side effects. Constipation week one and the big D, week 2. No side effect totally overwhelming yet. I'm taking my doctors advice and have had 100 oz of water every day since before treatment 1 started. She assures me that is key. Sure wish I had time to drink something else like a tea :)

    Any Clemson fans on here? I have a pretty cool opportunity next week that I hope I'm up for. Here in Orlando we get football teams that come here and play Bowl games at the Citrus Bowl. I am going to be the police lieutenant assigned to the team and assist with the police escorts and getting the coach to all the charity events, Disney parade, Sea World event and booster fund raiser dinners he's invited to. I will stay with the team at a hotel for a week. Hope I have the energy. Was chosen to do this before diagnosis official. Then the day the team leaves, I'll have treatment number 3. Wish me luck. If any of you watch the bowl games, this one airs the night of 12/29. I'll be the police officer on the field with the awesome wig.
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  • thrifty1
    thrifty1 Member Posts: 67
    edited December 2014

    I' d m with you Marcella...I'm day 4 post 2nd chemo. Chemo brain setting in and finding it hard to focus once again. Hopefully fluids tomorrow morning will help. Praying you feel relief soon. Cc3373 and Dee thank you for the compliments. The cut only lasted a week unfortunately. Ended up shaving afterall. I'm having horrible hot flashes so hopefully this will help. Dr said chemo might put me through menopause. .joy joy haha. Well here is after pic of me and my hubby supporting the new trend. :) hugs to all!!

    image

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  • Shayne36
    Shayne36 Member Posts: 15
    edited December 2014

    I'll be praying for you... Going for my 2nd treatment Friday tch he recommends 6 round I can't wait til this is over.....

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  • Shayne36
    Shayne36 Member Posts: 15
    edited December 2014

    constant nose bleeds anyone

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  • leftyloo
    leftyloo Member Posts: 23
    edited December 2014

    Shayne36

    yes! i got 2 big ones 2 consecutive days (one was embarassingly in public), and blamed it on the claritin (for the neupogen shot resulting bone pain) and the dry winter weather where i live... i stopped the claritin (with my nurses permission - switched to regularly taken extra strength tylenol), turned on my humidifier, cut off a bit of my aloe vera plant, coated the gel with 2 slightly damp cotton balls and stuck those up each nostril :), then the next day i broke down and bought some vaseline and have used that ever since (3 days now) with only a minor bit of blood once. good luck!

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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited December 2014

    Cookies ... yes, I've had constant runny nose. I've had 2 rounds of TC and consistently runny/drippy both times. Nose hairs are still intact so I don't think the loss of those are contributing. Oddly though, my nasal passages became super irritated/itchy/painful from about days 5-10 post treatment.... almost like they are dried out but that doesn't make sense w/me being so drippy. These drugs do a wonder on our bodie - no question!



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  • Cookies
    Cookies Member Posts: 41
    edited December 2014

    what can we do about the nasal congestion - I can't breath out of my nose and I mouth breath all night - which makes my dry throat unbearable

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  • MarcelaBR
    MarcelaBR Member Posts: 34
    edited December 2014

    Hello ladies!!

    Glad to say that I am feeling much better...my mind is getting back to normal!

    Thank you so much for all your kind words of support, it really meant a lot to me.. with that said I decided to post the ragging text that I wrote last week just so in case any of you need to know, even the worst of bad moods will eventually go away

    here it goes:

    I want my hair back... I want my life back. I want my early 20's back...this is not fair. I want to go out, not worry if I'm gonna live or if I'm gonna die and I wanna fall in love like a normal person. I want to meet and kiss a new guy, not worrying about my hair or my wig or talking about cancer or even my breast scars. I just want to be a normal 25 year old. I dont wanna die. I want to go back to being stupid. At least for a little bit. I want to truly believe I'm immortal like most people my age do. I want to be reckless. I want to be free enough that I can decide I'll move to a different country tomorrow and never come back. But I cant, cause I have chemo. And after that I have periodic tests. So I'm stuck. Time never stops and I feel like I'm stuck. I'm not special, I'm not different from any of you...but I just wish I could do anything I wanted. I'm not wishing for tons of money, or fame, or lots of knowledge. I just want to be free, free from this disease. Free to do anything I want. I just really, really don't want to die.
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  • MarcelaBR
    MarcelaBR Member Posts: 34
    edited December 2014

    I've been away for a few days so I'll respond to whatever I can remember I read...

    Nose bleeds - haven't had any yet, but when I was on ACTH I had a lot of them. Tried a lot of different stuff but unfortunately it only got better when I was done with chemo... :(

    Runny nose - Mine is a little, but I'm managing...don't know what I'll do if it gets worse though... I really believe it is due to the lack of nose hair, at least that what it feels like...

    Constipation and Big D - I think I'm like everyone else.. week one constipation, week two big D, week three back to normal.. I try not to take medication and regulate with what types of food I eat... not very successful I'm afraid. But I think that if I keep hydrated I'll be ok...

    Chemoangels - I've never heard of this before!! I will def look it up... I wonder if it even is a thing here in Brazil... I hope so!!!

    Facebook group - I want in!!!!! my e-mail is ma.acr@hotmail.com


    Sooo glad to be done with chemo #3... halfway done... now I have the port surgery to look forward to (I've made my peace with it.. didn't want the scar but I guess I'll just get a tattoo over it later!) and then NEW YEARS IN NEW YORK!! yayyy

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  • Redhead01
    Redhead01 Member Posts: 47
    edited December 2014

    YO Mrshq1...... the 100 oz does NOT have to be all pure water.... gag!  I've added a bit of POM fruit juice to mine to flavor it, used herbal teas....soups count.  Have a blast on the 29th!

    Marcela - Onc said the Big D can be helped with pro-biotics, instead of meds...since you prefer that.  We are all entitled to a good rant and/or pity-party....just don't pitch a tent and stay there.  I must remind myself of my blessings constantly.

    My new adventure:   A skin rash on face and scalp.  Actually...a combo of red bumps, flushed areas, and flat scaley patches here & there.  My 'watch'   list says only need to call the doc when 50%+ of the body is covered....Gawd, hope not!

    2nd Facebook request please:  My email is GinnyCU2@aol.com... Muchas !


     

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  • MarcelaBR
    MarcelaBR Member Posts: 34
    edited December 2014

    wowww Redhead01!!! That sounds scary... don't mind the watch list I would def call now!! Hope you feel better!! :)

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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited December 2014

    Ok Ladies ... i feel somewhat like a fraud. Here goes .... i've been quite vocal about my desire to embrace my baldness and go without hats/wigs/turbins, etc. on this board, the Hair board and esp. on the FB page. This, as I always add, might change as I go through the awkward growing out phases, but for the most part, I am contentwith my baldness and my family (my two little boys, included) have acceted it 100%. I have gone out to the store uncovered and although a few people may have *looked* my way, I haven't felt stared at and have only been given kind well wishes and nice comments. No pity parties. I do wear a cute hat alot because it's cold, but the wigs & wig hat that I have just don't look like "me" and I feel more like a "cancer patient" never mind look older in a turbin or the like.

    All that said ...... on to the "fraud" part. I *have* been covering up (in my cute gray hat) for the good part of a week now because I have apparently had, yet another, reaction to the lovely taxotere and now have a horrific case of folliculitis!!!! 😪. I cannot tell you how angry I am. As someone who was ready and willing to accept my baldness, I will not go w/out cover now!! My Onc's PA thinksit could be a reaction to shavingmy head (but I didn't use a blade - we used electric trimmers & didn't even go to the scalp so I'm not buying that). I was up until 2am last night researching and I'm convinced it's from the Taxotere crap. Now to add insult to injury, I'm reading that a severe case of folliculitis can result in balding!!!!! I'M PISSED!!!! On Fri, the PA Rx'd Cleocin (aka Clindamycin) ointment to no avail (which alone has its own host of poss SE's). I have a call into my Onco again and took it upon myself to get my PCP to refer me to a dermatologist .... thankfully I was able to get an appt for this afternoon!

    Seriously considering stopping treatment (at least until this clears up). Wondering if 2 doses of TC bought me anything & does it make sense to stop?? Questions I plan to ask when my Onco calls back. I'm early stage cancer and Onco-dx score was (low)-intermediate. Imjust know I will aways worry I didn't do everyting I could if I stop now. That was my entire arguement for doingit in the first place ... i didn'twant to walk away w/ammo on the table.

    Thought, anyone? Thanks for letting me vent here. Very frustrated ... and itchy!! 😕

    ***** Update ****

    First off, sorry for the many typos! I really was on a rant, wasn't I?!?! I was and still am very frustrated by this new development. Derm does not think it's due to the Taxotere, but not certain and she's definitely seen worse cases (which makes me feel only a little better because my case seems pretty bad!). She spoke w/my Oncologist to make sure everyone was on the same page w/treatment (glad for that!) and they put me on a 14-day cycle of Doxycycline (antibiotic used for acne ... and preventing malaria! crazy!!). Now I worry about all the SE's associated with this antibiotic but am going to think poitive and just hope it clears up this mess! She took a culture to better define what's going on . Results should be in by the end of the week. And if the antibiotics don't work she will do a biopsy to determine what's caused it ... and if it was indeed the Taxotere. I still haven't spoken to my Onco myself but am stillvery hesitant to continue treatment until this is cleared and I'm off the antibiotic. Next infusion is scheduled for 12/26 so we'll see.


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