Starting Chemo July 2013

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  • RealityCheck
    RealityCheck Member Posts: 57
    edited August 2013

    Laughing I have a craving for maple and brown sugar oatmeal, or raisins and spice oatmeal with some apples added in...Thank you Villia..My dinner is going to be delicious!! Boston creme pie yogurt for dessert! Yummmm!

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited August 2013

    Realitycheck, loved your sexy, beautiful wonderful gifts to the world greeting.  Why thank you, you're right.  LOL.  Made my day. 

    So just when we think we have hit all the SE of this disease, I am noticing my fingernails are very sore.  Especially my thumb nails but all of them if you push on them.  I've been trying to not use them to open things, etc, lest I do damage or pull one off.  I'm ready to stop at the losses here - the hair, the sparse eyelashes and brows are enough for you, chemo.   

    Lark, had to laugh on the wig/dog.  How embarrasing.  Note to self, don't buy a wig that looks like a shih tsu.     

    Marsha glad you are feeling good enough to go to the beach.  I have done some walking also but I'm not sure if it helps me feel better or worse.  I just feel like I cannot forgo all activity for 12 weeks.  I tried "gentle yoga" today and it was surprisingly hard.    

    Vilia how old is your daughter that you are homeschooling?  We are doing the same with my high schooler - eek, scary. 

    Happy Friday everyone.   

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited August 2013

    Vilia - CBS America have a TV program called Survivor. Bern running for 25 seasons ( about 14years). Contestants are divided into 2 teams and each wears a different color 'buff'. Like a tubular scarf that can be worn on head, arm, round neck etcetera. I might change my avatar if I can get a decent picture of one. I have them in green, red and black. :))))

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  • puppymama09
    puppymama09 Member Posts: 77
    edited August 2013

    Hello Everyone, I haven't had much too say lately but I have been keeping up with you all everyday. Have been feeling really good the last several days, so not looking forward to my next treatment on Wednesday. Had dr appt today, counts are all good and found out I am not Brca positive which is really good news for my daughter and younger sister.



    I have gotten pretty used to going out with scarves now. But now my little stubbles are all coming out making me all itchy.



    Loved your story Lark. Got a good laugh picturing your wig flying off and across the soccor field too.



    Btw, I homeschooled my 2 older kids just for high school though, and i am thinking about starting earlier with my youngest who is getting ready to start middle school, Vilia, and twohobbies, what programs do you use? I used Penn Foster for my other kids but they only do high school.



    Nocompromise, I have a couple of buffs too and really like them



    Tomorrow we are going to pick my 11 year old son up, he has been staying with close family friends of ours that moved to PA. He has been gone for 3 weeks. I miss him alot but I am wondering how this next treatment is going to be with him at home. He is very sweet but is the stereotypical baby of the family, so he is not really into doing things for himself,lol, maybe he will be a good distraction. As a side note the familyy he has been staying with, the Mother just went through breast cancer treatment about a year and a half ago, she is doing very well now. We kept her son several times while she was going through treatments.



    Well anyway I have rambled long enough, hang in there everyone, you are all in my thoughts and prayers!

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Sue,

    Did you see the buff set on ebay?

    http://www.ebay.com/itm/Bundle-Monster-6pc-Multifunction-Seamless-Style-Buff-Bandana-Headwear-Scarf-Wrap-/171063240340?pt=US_Scarves_Wraps&hash=item27d429e694



    I ordered them, needed something new!



    Also check out www.buffusa.com. They are a lot cheaper than CBS Survivor...and only has the buff logo showing on 2 sides (not too noticeable, but I still wish it weren't there!)

    I have a few different ones, some have UV protection. Love to try and match them to my clothes if possible (and I am not a "matchy" type.



    Pat

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  • NLMMichigan
    NLMMichigan Member Posts: 19
    edited August 2013

    Hi

    My first chemo was in June 2013. Last one was July 29th. I have three to go , then Herceptin for 6 months and 5 year pill. I lost my hair In 16 days. First I cut it in half, then it just started falling it out very fast so I had to shave it as hair was everywhere. I got 4 cheap wigs totally 388.00 from this place in Michigan. They have highlights so they look pretty real. My problem is I tend to be hot a lot anyway so I don't like to walk around in the heat.

    Chemo is chemo. Trying to endure. There are about 4 days where I just need to sit and shut the world off.



    Just look at it as a means to an end. You will get thru It. I hope you have lots of friends and family support



    Keep in touch

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  • Vilia
    Vilia Member Posts: 30
    edited August 2013

    TwoHobbies and Puppymama09, my youngest daughter is 12.  We didn't like the middle school she was assigned to, so this is our second year of homeschooling. We changed this year to our local online public school which offers a good balance of at home learning and meeting on their campus.  I'm impressed with it so far.  They're pretty new and innovative, so the teachers are all enthusiastic and helpful.  My daughter has some learning disabilities, though, so I can't just leave her to it and have to closely monitor and supervise.

    I guess I'm out of the loop, Nocompromises, 'cos I never did watch Survivor.  The only reality shows I watch these days are "So You Think You Can Dance", "Project Runway", "What Not to Wear" and "Long Island Medium", so I guess you can tell where my interests lie.  I used to dance and was in the garment business.

    Sorry to go off topic everyone!  Talk amongst yourselves, ha, ha!

    Keep on truckin' and stay strong!

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited August 2013

    Oh pAttysmiles - naughty , naughty. What have you started? . I am not going to beable to resist

    Think I shall spend the weekend trawling the Internet for buffs. Those look cool. Thank you

    :)

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Sue....Happy Shopping!

    I happened upon the ebay post because I was trying to see if I could find buffs cheaper than $20 a piece. I sure did! Lol. They aren't my favorite colors, but it does present options for wearing different things....I could always wear them when I work out at the gym, who cares then!



    I need to order the white buff for a christening (I'm the godmother). I figured it should go with the baby! Lol. I will have to see what is is like though, don't need to be looking like a nun! I would also like red, for Christmas. Though maybe my hair will be growing in by then?



    Pat

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited August 2013

    Love it !! White fir christenjng and red for Xmas

    Funny how coordinated we can be when we want to And I reckon we will be wearing them during/ after ?? Hair grows back so we have a good 6-12 months at least and then hubby needs one too. Good for Aussie summer sun



    Gotta change it up a bit here and there.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    how do you wear the buffs?  I feel at a loss.  I have some but ... V

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited August 2013

    Hi HVV

    There are some videos on the buffusa website. Although we are fairly limited



    I have worn mine the obvious way ( plonk it on and have the spare down the rear or like a beany - turn it inside out twist in the middle and turn it on itself - watch one of the videos for the original buff ) and also used it under other headwear /hats as layering - it's all trial and error I guess and after awhile I get soooo itchy with anything on my head today - grrrr

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  • angelanature
    angelanature Member Posts: 179
    edited August 2013

    Hi All,feeling a bit better today,still with the headache from hell but able to eat alittle. I'd really like to go see the beach this weekend,usually by now i've been half a dozen times being we r only an hour away from the Jersey shore. I'm just worried about Adriamycin and sun,maybe i'll talk hubby into going late in the day tomorrow.It's too bad chemo had to be in the summer,right?Puppymama I have an 11yr stepson who we have 50/50 custody of,his Mom has him now for August,we had him for July and it was really hard to take care of him ,its the age. He has no concerns but his own,and no compassion. Don't feel bad letting friends,neighbors,schoolmates having him for the day.I used to worry about too much videogaming or tv with him but during this time just let him.Hugs and kisses to you all,Angela

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    HVV

    I put on my buff like it is a kerchief, all the excess in the back,then I use a ponytail holder and make myself a pony tail with the extra material! I like that better than just letting it drape (I used to hate my hair on my neck!



    You could also tuck the excess under the back near your neck, I haven't done that.



    I agree with Sue, look at the video,not here are a few ways to wear them. I usually just I'd the "pony tail".



    For those who missed the link.... http://www.buffusa.com/sports/

    If it is still on the cover page I have the one that is half "pink and half blue with the flower...it is my absolute favorite. Depending on the color of my shirt I just turn it around on my head. I also have a blue print shirt that sort of matches the blue part of that buff so I look coordinated!



    Pat

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited August 2013

    Good morning everyone.  Well I'm not sure what time it is in Australia, but G'day Nocompromises!

    Thanks for the Buffs talk ladies.  I just watched all the videos on the website and these seem like a good option, plus they'll be useful after hair too.  I bought a straw fedora but I found it scratchy, so I could even wear one of these under it.  I even might get an "infinity" buff for work when its cold there.  Those are so cute!  Patty, put some bling on the white one for the Christening.  You won't look like a nun that way! 

    Vilia and Puppymama, we don't have good options for online school like some states.  I am so jealous when I see what other states are doing where it seems you can pretty much go to online school or local school.  We just started last semester and my son is in high school.  We use University of Missouri online program. It's been a little bit of a struggle - time management, and I'm not sure if that's because of my situation or if he will do better next time. 

    And puppymama, my 16 year old isn't into doing things for himself either, but he has been very helpful through this.  I've noticed for several years he does stuff at his grandmother's but at home he wants mom to do it for him.  So even at 11 they can do more than they let on.  Just explain that he is going to have to step up and do some things you usually do, and then think of a reward for doing so, or a special celebration/event when you get done.  I feel bad that my son is spending so much time hanging with me/taking care of me.  I want to do something special for him when we're done. 

    Angela, i think you can go out in the sun with sunscreen, can't you?  Buy yourself a 50 SPF, take a hat and enjoy.      

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  • Vilia
    Vilia Member Posts: 30
    edited August 2013

    Thanks Pattysmiles for the video!  Now I get it, it's a tube top for the head Laughing.  As I mentioned before, I used to work in the garment industry and I remember another patternmaker telling us she'd been offered a job with a tube top company.  We all got a kick out of that ... I mean how much patternmaking is required to create a big rectangle?  Anyway, someone obviously got smart and decided they'd do something similar for the head and are making a bunch of money at it! The simplest things seem to be the most successful.

    I wore a knit cotton hat this morning to Pilates class.  I actually found it to be as hot on my head as the wig, but then I had been working out.  I still have some hair, too, which makes a difference I'm sure.

    Hugs to all!

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  • honeybunny96
    honeybunny96 Member Posts: 120
    edited August 2013

    I looked at wigs, but haven't bought any yet. I am having too much fun with all my scarfs.  I even bought a new purple on yesterday.  It's my favorite color.  I also am playing with dangly earings too.  In all the madness around I thought I'd have some fun.. I call it pirate dressing up! LOL  So far I have had nothing but compliments on them all.  I picked mine up cheap at the dollar store or second hand store.  Best places to go. I also had a friend make me one out of a tshirt (purple of course) Perfect for when I need to wear those under my scarfs for the cold/rainy days that we seem to have so much here! 

    Round 3 AC yesterday.  was good most of the day, then later in evening hit and WHAM! HUGE migraine hit with the upset tummy part.  Tried to ice my neck but that did no good.  So I just took 2 gravol and went to bed.  I feel not too bad today, but am tired.  I think it's getting on nap time for me.  So far so good.  Crossing fingers it says this way.  

    Nocompromise.. I love love love those buffs.  Have fun wearing them!! And I love the new motto to go with them! 

    Villia... I had severe ache from my first chemo too. I used L'Oreal Paris go360 clean Deep facial cleanser and it came with a little rubby face scrubby.  I was clear in 2 days!! I am one not to use creams on acne if possible because I am a believer that creams on our ouchies sometimes drive them deeper and tend not to heal.  Now my face is clear and looking good.  For my head I used a product from passion parties.  I LOVE it and the scent.  Its one I can handle.  Its call salt glow body scrub. I use it all over to get rid of excess dead skin and when I used it on my head it was like a head massage.  Oh it felt soo nice!!   Another one I use is from the Body shop. It's called Cranerry joy body polish, with real cranberry extract.  It's got seeds and stuff in it as a gritt, that ohhh I love the feel of it.  And again, it gets rid of dead skin too with a special scalp massage.  

    Hope everyone has a good weekend and SE... semi SE free weekend! I think it's nap time now.  

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  • puppymama09
    puppymama09 Member Posts: 77
    edited August 2013

    Well I think I just cleaned out BandanaWorld.com.  I have been wearing mostly scarves and bandanas and have several but have been having a hard time matching them to my clothes.  So I  just ordered a bunch of new ones and some in  more nuetral colors.  You all should check out that website they have a big selection and they are cheap.  If you order 12 or more they give you a discount.  

    Twohobbies, we don't have the online schools here either, I see comercials for them.  They seem like great programs and free.  The middle school program I looked at for my 11 year old is around $1800. a year, that is a bit steep.  All of highschool for my other 2 was less than that for the whole program.  I would need something very structured for him so that is why I have been looking around.  My 18 year old son has been stepping up a bit around here too, so I am hoping the 11 year old will too.  I know he is capable.  

    Well, I am hoping to go to the beach tomorrow, it is probably the last chance i will get to go this summer, except maybe Labor Day, but it is notoriously bad weather on labor day around here.  Oh well next summer will be here before we know it, and we will all have nice new hair!  We can put this hard year behind us!Smile

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  • Vilia
    Vilia Member Posts: 30
    edited August 2013

    TwoHobbies and Puppymama, this is the program we used last year for homeschool: http://www.k12.com (can't get the link to work, but it's the right address, so copy and paste if you're interested).  Ours, of course, was Georgia Cyber Academy.  It was a good program; we just changed for more socialization.  If your state doesn't offer it, I believe you can purchase it but don't know what it costs.

    Honeybunny9, so sorry you're feeling crappy today.  Glad you were able to knock the migraine out.  In a way I envy you because you're further along with all this and therefore closer to the end!

    I will look for the cleanser you recommend.  I do cleanse pretty thoroughly, but I've been very depressed today because this stuff just doesn't seem to be going away.  Every time I think it is a new one comes up!  I think I'm going to ask my mo for prescription topical acne meds instead of the antibacterial he gave me.

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  • Rambo50
    Rambo50 Member Posts: 140
    edited August 2013

    Had a post written, but it timed out??? Oh well ;-)



    Those of you talking about Buffs - what do you wear underneath them? I'm finding even my softest hats require me to wear something under to keep my few remaining sprigs from hurting when they're rubbed the wrong way.



    HoneyBunny, I LOVE the "pirate dressing" :). I've found myself - even with my wig since it's not really like my traditional pixie - experimenting with new fashion. I got so many compliments on my "hairstyle" this week at work from folks who didn't know me before and don't know I have BC - I stifled a few giggles :)



    Feeling WAY too good and eating FAR too much junk food - it's what tastes good right now - but I did get in a 2-mile walk this morning. No Neulasta-related bone pain this round!!! Yahoo for minor victories :)



    Prepping for round #3 of A/C this week along with a possible blood transfusion for low RBCs and hemoglobin. Has anyone else had this issue???



    Still thinking of you JeriGrace as you prep to start with your new kiddos!!! My first class starts on the 20th - hope I can hang!



    Reading about everyone's aborted summer plans is making me sad :( I, too, wanted at least a brief beach or mountain getaway - alas, no cigar!!!



    One more Q: Have any of you ladies had a therapeutic massage since starting your battle? I'd love to know if it's safe, and how I might manage laying on my tummy with my port!



    Weekend hugs from GA :)



    ~Lynn

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    Thank you NC, and everyone forhte buff advice.  any acne advice? Do most people get acne?

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  • Gma04
    Gma04 Member Posts: 62
    edited August 2013

    I go for round 3 Wed the 14th. I will have to get the NULASTA shot I'm told because my blood count is low. Does anyone know what the effects of it are. My hair is falling out but I can't bear to shave it. I'm not that brave. I have two wigs and I have been wearing those. All of my friends thought it was my real hair. Please let me know about the shot please.

    Hugs for all u brave ladies.

    Gma04

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  • LanaM
    LanaM Member Posts: 142
    edited August 2013

    Good evening BB friends! (I still love the Breastbook comment). Haven't checked in lately. Feeling good - I've really only had 2 semi bad days so far, and those were days 4&5 after round #2. Super exhausted those days & overall "blah" feeling. Back to normal now though & seem to have a bigger appetite lately. Love all the wig and scarf stories - I wore my wig to work one day but it was one of the days I was feeling bad and I had a headache and the wig was just making it worse. I've been doing scarfs, turbins, buffs and hats. Last night we had a surprise birthday party for my brother - it was at a bar & the Packer game was on so I wore a pink Packer baseball cap! Today our neighbor had a trapshoot & I wore a grey cap & was told I looked "mod"! Had to chuckle. Went over to my sister in laws yesterday & hadn't seen my nieces/nephews in a little while - my niece did a couple double takes, and my nephew (3) came up to his mom & repeated 3 times "mom is that Lana?" Love the animal stories too - didn't even think about that! One comment on the hair loss - if we have to lose it during chemo I think there should be a law that the first hair to go is any unwanted facial hair! Hoping everyone has good days ahead & limited or no SE's! I've got 2 down & 6 to go, but half way through the red devil!

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  • Gma04
    Gma04 Member Posts: 62
    edited August 2013

    Hey puppymama seems that our infusions r on the same day Wed. I too am dreading it. It seems I feel great now but then we have to get the poisons back into our bodies it's just not fair. Please let me know how it goes for you.HUGS

    GMA04

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Lynn,

    When I am going to work out I like to wear (if I can remember to put it on!) a yogitones headband. Here is a similar item (I can't find the link for the one someone gave me)

    http://www.amazon.com/neutral-tone-stretchy-headbands-Absolute-Yogi/dp/B005341WIW



    I really use it to absorb sweat, but they are comfortable under the buff....I have worn it when it was just plain hot out under the buff. However, I have not lost all my hair as of yet, it is still coming out...and is probably about one inch long all around.



    Sorry I can't answer if the buff would work on shorter hair.

    Pat

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  • JeriGrace
    JeriGrace Member Posts: 128
    edited August 2013

    Gma04, the main SE with Neulasta is bone and joint pain. Not everyone experiences it though and it seems that some people who had pain the first time they got the shot didn't the second time. I did have a lot of bone pain and needed to take hydrocodone with my first round. I'm hoping to be lucky when I get my second one next week. The good news is that it really works. Your white blood count will go way up and that will keep you from getting sick. Also, if you haven't already heard, many people take Claritin on the day of their shot and for a few days afterward and it helps with the pain for some. Good luck!

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  • Gma04
    Gma04 Member Posts: 62
    edited August 2013

    Jerigrace, thank you I need all the advise I can get.good luck to you too.HUGS



    GMA04

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Gma, if you haven't read about the Claritan it is .claritan 24 hour.

    Take one morning of Neulasta shot and one each morning for the next 7-9 days.



    Some have taken it the day before Neulasta and all the rest of those days above.

    Some take an Aleve along with the Claritan.



    Please remember to check with your oncologist prior to following "our advice".

    My MO had never heard of it, but didnt deny me taking it.

    The nurse who gave me Neulasta said I was the only patient they had that did not complain of bone pain and could tolerate the full dose of the shot. I credit the Claritan.



    Pat

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited August 2013

    Gma04 ... JeriG and patti have nailed the advice for you

    I had the neulasta shot for round 2 and was anxious after hearing all about bone pain on this forum.

    I decided to take nothing and see what happened .... I read the literature and it only supposedly happens in 25% of patients. And even then as Rambo has demonstrated the second time round the pain ( if you even get it first time) isn't nearly as bad ( if at all)



    I had a few weird sensations in thighs and lower back on 5th day after the jab - wouldn't call it pain but felt like my skeleton didn't fit together properly for a few hours - went to bed and next day it was gone :)

    I will look forward to having the jab for round 3 and 4. Cos the benefits for me definitely outweigh any potential bone pain



    Patty. Usabuff are 6 SIX !!!! Buffs lighter now !!!! Can't wait to get them

    Rambo I haven't put anything between buff and skull .... I have itchy times and non itchy times and was considering using the buff as my underwig lining or any heAdwear lining ...

    Does anyone find their wigs,or buffs make them shiver ???



    Day 10 #2. and I felt so good I have spring cleaned ground floor of home !!!! Didn't feel mad enough to attack the kids rooms upstairs - those pig stys can stay - goodness knows what I might catch in those rooms :)))))))).

    NC x

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  • angelanature
    angelanature Member Posts: 179
    edited August 2013

    Hi All,so I felt pretty good yesterday and was planning on doing something fun,like beach,or just walk inthe park but a warning to you all,I hadn't had a bm since wedn,and stupidly wasn't really worried,was taking stool softener and 1 overnight gentle laxative,well I almost had my hubbie take me to the hospital last night. I had horrible stomach cramps,bloating,and felt like vomiting after dinner,I couldnt even keep the miralax(which i hadnt been taking)down. It was really frightening,I had the sweats and chills(no fever),I thought a few days can't be that big a deal,I swallowed 2 more laxatives,had a terrible night but finally with alot of pain went alittle this morning. A couple of days is a big deal, after i read some scaring stories of bowel impaction,i won't make this mistake again. Thank God i was able to turn things around before it got too bad.I know constipation is an issue but stupidly didn't take it too seriously,everything related to this chemo(and meds)is serious. I wouldn't want this to happen to any of you. Hugs Angela

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