Starting Chemo July 2013

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    I'm back home and the first infusion eventually went alright, although it had a very late start. Got there 20 minutes early since it was my first (10:10 AM) and was finally called and placed in a room at 10:35 AM. I had my period start this morning and was nearly doubled over with cramps. I asked the medical assistant who took my BP and temp if I could take Tylenol or ibuprofen (brought both) and she said the nurse would be bringing me Tylenol anyway. Didn't see a nurse for another 20, so my boyfriend went looking for one to get me my Tylenol! I can't believe I was left suffering that long without some stupid Tylenol - I could have taken my own if I knew they didn't have time to get me started around my 10:30 AM appointment time.

    The infusion itself was fine - no adverse reactions - but I was left groggy from the Bendadryl. I'm not sure I'd be able to drive myself home afterward, so I hope I'll have someone to go with me each time. I've very happy that the nurse very easily got into a vein with the IV. Only five more to go, so I'm sure I don't need a port.

    I've been trying to hydrate and get lots of fiber in the last day, but I think I'll start on the stool softeners preemptively too from what I'm reading above... and maybe some pruins tonight! 

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  • lark
    lark Member Posts: 61
    edited July 2013

    Oh, I just remembered, my doctor said fresh cherries are almost as good as prunes for constipation and they're in season so that might be another alternative! Be careful not to go overboard cuz the diarrhea is misery too!



    Mellie- sorry you had to wait. I'm finding that the earlier I can get my appointment the faster things move along. Otherwise the lab gets backed up then the dr, then the nurses. I was in at 8:00 today and done around 12:30.



    Just went for a walk and am going to try to keep moving a little each day. If nocompromises can play 18 holes of golf I can certainly walk for 15 minutes! Thanks for the motivation!!

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Hi ladies,

    Yes biker girl a sportster, no I haven't ridden it since Mx 5 weeks ago. But my excuse is it is winter here so pretty chilly and wet plus not sure I would have the strength to stop it falling over down our gravel drive !!

    An HD -hummer. Sounds different :). Good on you



    Day 16 and Hair coming out in clumps today in shower. Cos it's Friday can't decide whether to bite the bullet and go to wig shop/ shearing shed with hubby today or wait till after weekend when I could be really patchy and have no coverings except for beanies . Don't want to buy or get wig fitted till hair is shaved.

    Either way with DD 16th birthday on Sunday it's gonna be an emotional weekend

    NC xx



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  • momx2
    momx2 Member Posts: 109
    edited July 2013

    Mellie glad you finally started.

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  • JeriGrace
    JeriGrace Member Posts: 128
    edited July 2013

    Think I'll call Day 4 "I Just Got Hit By a Truck Day." Adding insult to injury, I now have the opposite of constipation! Thinking of all of you - hope your day was better. ;)

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  • 2bluestars
    2bluestars Member Posts: 89
    edited July 2013

    Thanks for the cherry tip Lark.  I LOVE cherries but haven't been buying them because I was told no fresh fruits and veggies, but may just risk it.  :-)

    Also, I've been trying to do some research on the premeds for anti nausea, both Emend and Aloxi cause constipation, Emend also causes hair loss, which suprised me, but it can't cause more hair loss than chemo, so it's a moot point.  Anyway, is there anyone here who has taken Emend but not Aloxi, or vice versa? How'd you feel?  Anybody know which is better?  I don't want to be vomitting, but (almost)prefer to the constipation I've had.  I'm going to be asking the dr. tomorrow about dropping one or the other and adding benefiber or the like as well as Miralax to the day before chemo treatments.

    Thanks in advance!

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  • lark
    lark Member Posts: 61
    edited July 2013

    Bluestars - maybe just use the cherries (washed well of course) during the 1st week when constipation is the worst, then stop during nadir?? I think I had both emend and aloxi, so not sure how to advise. I asked my dr about starting benefiber before tx. She said unless you've already been using it she wouldn't advise it. Can end up causing you to have to push too much until your body gets used to the extra fiber. She said to keep working on the right combo of senakot-s, miralax and diet. Curious to know if others have started benefiber after beginning treatment and what their experience was.



    Gma and others interested in probiotics- I asked my dr about taking a probiotic to help with all the digestive issues and avoid the yeast and urinary tract infections. She agreed that was fine. Yeah!! Finally feel like I can give my body something to help it work through all of this. Always ask your own doc though.



    Here's a smile....My 15 year old daughter was making cute little hair bows out of scraps of fabric when I got home from treatment yesterday. She said she wants to sell them and donate the money to breast cancer research. For a teenage girl who is usually focused on herself, this was very touching. I hugged her and cried.

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Any of you experience Neulasta-related bone pain later in the cycle - Day 8+ ?  I know it's supposed to be out of the system by the first week, but... ?

    Lark, my children and others continue to amaze me with their compassion and desire to DO something for me.  I'm overwhelmed by the support - of course I couldn't get my hubby or son to agree to a head shave with me Wink

    Today's the shave day! I'm not sure how I feel about it right now Undecided will let you all know later!

    My best to each of you wonderful firecrackers Smile

    Lynn

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  • LanaM
    LanaM Member Posts: 142
    edited July 2013

    I'm on day 8 and consider myself very thankful as I really haven't had any SE's. my onco said "the meds are doing their job". I'm not sure if I'm on different meds than others or not. I don't remember exactly the meds they give me pre-chemo @ infusion (i know they give me emend 125, but not sure the others) but besides those I'm taking Emend 80 only day 2 & day 3 for nausea, acyclovir to prevent ulcers, ranitidine to lower stomach acids, SMS/tmp sulfa antibiotic (M/W/F), lorazepam as needed for nausea, anxiety & sleep (I just take one before bed), daily stool softener and my regular meds (metformin 4 diabetes & Taztia 4 high blood pressure) & multi vitamin. I also took Claritin day before, day of and day after neulasta shot. I also try to drink plenty of water & eat healthy. I was diagnosed with diabetes just a month before my cancer dx and ive lost 65 lbs since late April. I sometimes feel a little guilty when reading problems others are having - I wish I could take everyone's pain away. I am a big believer in the power of positive thinking - hugs to all firecrackers :) we will get through this together! Hang in there ladies - one day at a time!

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Rambo. I just had my hair cut to a no 4. Today And bought a wig and a couple of pieces of headgear



    Good luck with your cutting today :)

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  • RealityCheck
    RealityCheck Member Posts: 57
    edited July 2013

    7th day since chemo infusion of T&C. Have mouth sores. Anyone had these yet? RN said to just rinse a lot with baking soda and water. I am a type 1 insulin diabetic and I can't keep eating ice cream.

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  • encyclias
    encyclias Member Posts: 302
    edited July 2013

    bluestars, I was given only Emend in the form of a pill as they unhooked me after each infusion, along with two lesser-dose pills to take over the next two days.  Never had a minute of nausea, as my MO had promised me from the beginning.  The only real side effects I had from A/C chemo (x4, 3 wk intervals) was fatigue toward the last two infusions, and a lowering wcb during the third for which I was given a Neulasta shot as a precaution.  No SE from that either.  Since I take Metformin for my diabetes which generally gives me the daily D, I didn't have constipation problems, LOL.

    Carol

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  • angelanature
    angelanature Member Posts: 179
    edited July 2013

    Hi troupers,on day 17 and Marsha you really know ur stuff hair coming out in clumps,my beautiful,natural curly red hair going going gone.Even being prepared doesnt really help,I still cant stop crying,its just hair right? I have a wig,supposed to be red but nothing like my real color,times like this i wish i was brunette or blond at least i would look like me. Reality there is a prescription med called nystatin swish and swallow that might help with ur mouth sores.Kiss Starting to get chemo brain,i think? or maybe its just emotional overload. Marsha if my hair is falling out now ,when do eyelashes and eyebrows go? stupid chin hairs stronger than ever! Hugs to all! Angela

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Reality Check - I'm too early in to have mouth sores yet, but if the baking soda rinse doesn't help, there's a tip to use a liquid Benadryl/Maalox mix to help in the More Tips (and a Shopping List) for Getting Through Chemo thread. http://community.breastcancer.org/forum/69/topic/706846?page=1

    Day 2 and feeling pretty good so far except for some period-related cramps still. Hopefully, those will pass soon, but I'm missing my ibuprofen. Tylenol doesn't quite cut it for me. I go for my Neulasta shot at 1:30 PM and I'm glad I'm in good shape to drvie myself for that at least.

    Now that this has become real, I'm also trying to figure out when to cut my hair - not for another couple of weeks, after I see about the "cranial prosthesis" scro[t from my doctor. I don't plan to work without a wig and I would like to see if I can get a really good one covered by insurance that will look realistic. I bought two pretty cheap ones that are okay, but they won't last through every day use and don't look too natural, but they will be fun to wear. I'm hoping I can get a more expensive, good quality one that I can wear daily until my hair comes back in covered by my PPO.

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  • RealityCheck
    RealityCheck Member Posts: 57
    edited July 2013

    Thank you Ladies for the info on what I can do for mouth sores. I have called my Oncologist to see if I can get a prescription. It will be nice to eat! LOL I still have my hair so far and am thankful that one hasn't come into play yet.

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  • m1970
    m1970 Member Posts: 337
    edited July 2013

    Angela, I'm so sorry to hear your hair is coming out.  That is definitely a low point and takes a while to get used to.  My eyelashes and brows did not come out until I started Taxol, after 4 treatments of AC.  Loosing the hair really sucks, but loosing the brows sucks more because it is harder to disguise.  I could never draw my brows correctly and I always ended up wiping the makeup off.  I also remember when my hair first came off that my head would get cold at night and it was April -- so a simple cotton cap can be a good investment, and is also useful for wearing under some hats or scarves.  If you find you like wigs, why not try a brunette or blonde wig? 

    I bought all sorts of hats, scarves and a few wigs before I lost my hair.   One wig looked totally ridiculous (hat with hair) and was too heavy.  The microfilament wig looked realistic and was easy to care for, but I found it uncomfortable and only wore it for special occassions.  Many of the hats designed to fit close to conceal hair loss were too small for me.  There was only one hat that seemed to work which was a simple cotton bucket hat.  I made a pattern from it and made the hat in several other fabrics.  I gave away everything except the bucket hat.

    I did find at first that I was embarassed to have my head uncovered, but I was also so uncomfortable with everything on my head.  As I got used to not having hair (and everyone else got used to it too) I started going without cover in more places.  First it was just in my cube at work, then I expanded my zone to include the path to the printer, and later I just covered my head to go to the cafeteria or a large meeting.  Towards the end of my treatment I actually went shopping without a hat.  It was summer by then.  I think if it was winter I would have stayed covered more.

    RealityCheck - My gum is raw in one area and I have a swollen tastebud that feels GIGANTIC but is actually just one little taste bud.  I tried the baking soda and putting an ice cube right on the sore spot and it felt a little better the next day.  Yes ice cream feels great but I know what you mean about the sugar.  (I do feel less guilty stocking up on ice cream and popscicles!)  There are special mouthwashes you can get and antivirals if you have a history of cold sores.  If you think it's bad push to get the good stuff.  Have you considered sugar-free popscicles?  Personally I avoid artificial sweetners, but I'm not a diabetic so I gues you have to pick your poison.


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  • 2bluestars
    2bluestars Member Posts: 89
    edited July 2013

    I just got the results from my genetic testing, it was negative.  I was excited, happy about that, but the doctor was not.  He said, now they don't know why I got my cancer and my kids will still have to be diligent because they don' t know why I got it.  I think I'm still going to opt for the double mastectomy, I never want to go through this again.

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  • puppymama09
    puppymama09 Member Posts: 77
    edited July 2013

    I am just checking in, I had my first infusion of CT on Wed.  Feeling ok,  I have been sleeping a lot.  Feel kind of wierd, like wired but too tired to do anything.  I did get my nuelasta shot yesterday, no pain from that yet. I am finding it little hard to read, my eyes seem a little screwy.  Not much of an appetite, have to force myself to eat.  Today is my birthday, great way to spend it.  

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  • 2bluestars
    2bluestars Member Posts: 89
    edited July 2013

    Happy Birthday puppymama, though not the best way to spend it.  Mine was Monday the 22.  Spent most of the day on the couch, but next year...I'm gonna celebrate big time!  :-)

    Hope you feel better soon!

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    2bluestar, mayb you just one of the unlucky one that have Breast cancer..., that what my genetic counselor told me if my test come back negetive. Not all BC are genetic right? Great news for you n your childrens.



    Puppymama, Happy birthday...I'm sorry that it had to be on your birthday. (((Hugs)))



    Ladies, no more fainting for me since Monday. 9 days out since chemo, I feel a little better and eating better but not completely normal. I want my taste back.

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  • angelanature
    angelanature Member Posts: 179
    edited July 2013

    Thanks Marsha,you r awesome and really know ur stuff. Bluestars,my genetic testing was negative too,try to feel positive about it,ur doctor doesnt sound very caring,sorry to say. We all have to be diligent regardless.My tumor was found on a routine mammo,but being negative is a wonderful thing,most breast cancers r not genetic they dont really know the cause. I feel terrible for Lynn getting a positive result,especially for her daughter. Rejoice in some good news,I battled with lumpectomy vs mastectomy,no one wants to ever have to go through something as horrible as this again but many here have. Losing my hair today has hit me hard,but getting a negative braco result yesterday has made it alittle easier.Happy Birthday puppymania,try to enjoy it,my eyes have been blurry and ive had trouble concentrating on reading,i think its part of chemo brain. hugs from the newly bald Angela

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  • encyclias
    encyclias Member Posts: 302
    edited July 2013

    bluestars, there is a poster in my doctor's office which says: "80% of breast cancer patients have NO family history of breast cancer"  No doctor has yet come up with any specific reason for the 80% who get it.   Lots of theories, some totally crackpot and some just unproveable, have been floating around for years.  But research goes on.  It probably won't be too long in the future that there will be vaccines and cures.  That will come, maybe even soon enough for some of us to benefit.

    Congratulation on your BRCA negative result!  That is wonderful news.

    Carol

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  • 2bluestars
    2bluestars Member Posts: 89
    edited July 2013

    Yeah, I told my husband my bs doesn't seem very, I don't know the word I'm looking for, maybe positive or too real.  I couldn't even get him to tell me the port surgery wouldn't hurt or I wouldn't feel it.  I do like him, just wish he'd give me bone once in awhile.  :=)  I'm choosing to think of my negative results as a positive.  My mom has been feeling so guilty even though I told her not too, so now maybe she can have some peace.  Regardless of a positive or negative testing result, everyone should be diligent anyway right...so he can shove his ho-hum tude.  LOL

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  • angelanature
    angelanature Member Posts: 179
    edited July 2013

    There you go girl,bluestars, about my hair,yeah that again,this may sound stupid but being a redhead all my life has come with teasing,sometimes cruelty,and when i got older alot of compliments. Its part of my personality,it makes me different,when i meet a redhead stranger its an instant bond so i just hope it comes back red and the wig will have to do for now. Off for my shaving,good vibes to u all. Angela

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  • bikergirl
    bikergirl Member Posts: 112
    edited July 2013

    Soriya123-

    Here's hoping you are better today.  If you cannot eat or drink, you need to tell your onc doctor or nurse.  Maybe they need to change your anti-nausea meds or you need to go to ED for hydration.

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Happy birthday, puppymama! I hope you'll have a good day free of SE at least.

    I'm going back for my neulasta shot in about an hour. I feel pretty good day apart from my pesky period cramps this morning that I so wish I could take ibuprofen for. At least they've eased up now a lot. I'm starting to feel a little queasy, a wee bit of fatigue and weak-legged, but I'm not sure if that's the chemo, psychosomatic about the chemo, due to waking up to pee 5 times in the night or my period (or any combination of the aforementioned). I'm hoping to accomplish one job at work today that will get me to a nice relaxing weekend when the SEs might really hit.

    I was toying with the idea of taking a Zofran already since I felt a tinge of queeziness, but I don't want to prematurely (I'm still on Decadron today, so it might just be more anxious stomach). Did anyone start Zofran while still on the steroids?

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  • puppymama09
    puppymama09 Member Posts: 77
    edited July 2013

    thanks for the happy birthdays everyone,  this reminds me of my 21st birthday, had plans to go out and party for my first "legal" drink,  I woke up sick that day and spent all day and night in the bathroom, of course that was only a 24 hour bug, this is gonna last much longer.  Oh well next year will be much better I am sure.  I definitely feel chemo brain more than anything, feels like I hve cobwebs in my head.   Mellie, so sorry you had to have your peroid at the same time, just another blessing of being a women.  So sorry to all of you losing your hair, my time will come soon enough, not sure I'm gonna do.  Shave? or wait for it to fall out.  I have several scarves and hats, and I got a couple wigs but I can;t really see myself wearing them, plus it is so hot.  I was tested last week for BRCA gene, waiting for those results,  have 20 year old daughter and a younger sister, that could be affected.  

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  • jnprsn
    jnprsn Member Posts: 151
    edited July 2013

    Well, my first infusion Monday and Neulasta Tuesday gave me severe nausea, cramps, headaches, leg aches, and a general feeling that I was not steady on my legs.

    I landed right back in hospital today for 2 of hours of fluids.
    They are going to repeat fluids weekly during my neulasta shot.

    My meds have been switched from Zofran to Compazine to Atavan. My constipation remedies from senokot + colace to miralax daily. Thank God I have a week off between AC treatments. 1 down 3 to go.

    Actually felt like eating today.

    Thanks for listening. This has been one of the hardest weeks of my life.

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Oh jnprsn, that sounds awful. Sounds like you're starting to get a little relief with being able to eat today, so maybe the misery is ending for the week. I hope next time will go smoothly now that you have an idea what will work. {{{hugs}}}

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Puppy mama, HAPPY BIRTHDAY!!!

    I did the big shave today ;-) Made an appointment when my scalp started itching - wanted to wait until Monday, but my hairdresser will be out of town. My mom and 2 besties accompanied me, then my hubby totally surprised me, showed up, and had his shaved with me <3<3<3
    <br />

    Jnprsn, sorry you've had trouble with AC :(. I actually thought I got off "easy" with no nausea and just 2 days of fatigue, but NO - was hit day 8 and 9 with bone pain worse than ANYTHING I've EVER experienced before, including my 2 natural childbirths!!! Then a brief bout of nausea today and a mouth sore!!! What the he££! Everyone seems to react a little differently, but we'll ALL make it through this :)



    Mellie, I started Zofran on day 2 per my onco on a 3x/day through day 5. Seemed to do the trick!

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