January 2016 Chemo!

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  • songbird72
    songbird72 Member Posts: 68
    edited January 2016

    I stopped Zofran last Friday, was normal for a few days, then have gone the other way the past two days. Ugh!

  • zinny
    zinny Member Posts: 281
    edited January 2016

    Veronica, that is adorable!


  • Delight55
    Delight55 Member Posts: 20
    edited January 2016

    Songbird72 I am having the same issue, and every day since my first treatment 8 days ago. We aren't on the same drugs tho so I'm not sure what the connection is? Itdoesn't seem to matter what I eat and I max out on Immodium every day. I plan to ask the nurse tomorrow when I go for Herceptin treatment. Hoping for an Rx and some hope for light at the end of the tunnel. I know it contributes to my fatigue, although today I felt pretty good in spite of the hurried trips to the bathroom. It's just gross. The oncologist changed my treatment from cytoxan to carboplatin even though it doesn't show in my profile details.

  • zinny
    zinny Member Posts: 281
    edited January 2016

    kiks 1 - remember that when they talk recurrence risk in the oncotype, I believe the numbers quote the "mild" form of chemo that people tend to get - not sure what your 4 rounds/2 months looks like but it is bound to be more aggressive than the quoted regime.

    To the cold cappers - I hit day 17 today, and though I am losing body hair, the hair on my head is holding strong!! there was a painful patch last week that I was worried about, but nothing has happened to it yet. Had second chemo yesterday and it went so much better with the caps because i was not scared about getting frostbite any more and somehow it was more tolerable - I think DH was actually more efficient getting the new cap on my head at the 30 minute mark, and so my head was still really cold, so the change in cap was less noticeable.

    Songbird - try some probiotic yogurt every day for the runnies - will likely help at least to some degree. I wouldvcautious with the "intense probiotics" without knowing where you counts are at. Activia is not meant to be as "good" as olympic - but really if it is a good brand and says probiotic its probably helpful.

    Loves to fly - received my backup headwear today - lovely bamboo beanie from cardani/headcovers and a newsboy cap that rides low to cover the sides. now not quite so stressed if it comes out after all.

  • Cathytoo
    Cathytoo Member Posts: 667
    edited January 2016

    Loves to Fly...Love the scarf. You love great

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    thanks. I still have my buzz (mostly) but went to a school meeting and was going to see people I haven't seen in a while, I hate when everybody sees it and says how good it looks, I guess I'm releived it looks good, but I miss my hair, and I just felt like covering it instead

  • Cathytoo
    Cathytoo Member Posts: 667
    edited January 2016

    LovesToFly... I bought bangs as well as a full wig. I've had bangs all my life and feel naked without them. You can tuck them under any head cover and they look great. I've been wearing my fake hair for the past two weeks even though I won't lose my hair for a little while. No more bad hair days. Notice I'm not counting "bald hair" days. LOL But, you look totally beautiful

  • fightergirl711
    fightergirl711 Member Posts: 300
    edited January 2016

    3rd chemo scheduled in 6.5 hours, haven't been able to sleep. The second MRI is tomorrow and scared to death of what they'll find, I feel like I'm reliving the first month of diagnosis all over again. Emotionally I've been having a hard week and really can't get out of my own head thinking about the "what ifs." I think of my kids and just go down that rabbit hole of terrible outcomes. The Perjeta rash is also spreading to my face and back, so not feeling that wonderful when I look in the mirror, despite very few other side effects. But there's such a long road ahead.

  • Ivegotthis
    Ivegotthis Member Posts: 28
    edited January 2016

    Thanks, ladies, for sharing the day 8 issues. I thought it was just something I ate.I've been battling diarrhea since Tuesday. Sparing the details, I will say it was a tough day at work! I got home, immediately put on my Jammie's and fell asleep. Had a consistent 100.3 temp. Felt much better Wednesday, but stopped at the store on my way home for Imodium. I feel much better now. The mouth sores...I'm wondering if what I feel is the beginning of sores. Right now the skin in my mouth feels like sandpaper. Should I be doing any preventative maintenance?

  • Myraknits
    Myraknits Member Posts: 264
    edited January 2016

    I think I'll probably be starting in Feb instead of Jan. since today's visit for an ultrasound and morebiopsies didn't show what they needed. Scheduled for the 29th for MRI assist. I'd really like to hold off on the chemo and port installation until after the MRI. The dr. said he could do it after the port is put in, but laying on that just sounds painful.

  • Mena4911
    Mena4911 Member Posts: 49
    edited January 2016

    Hello ladies,

    Cant sleep again , dang steriods! I had first round of TCHP on Tuesday. Felt pretty well staying on top of the nausea with rotating compazine and zofran and phenergan gel. My zofran is dissolve on tongue kind and is DISGUSTING! May have to ask for that to be changed. Did some house chores and just stayed in all day. But, seems that constipation is going to be the problem. Maybe will try some miralax. Has that worked well for anyone? I can not tolerate any strong laxatives due to history of severe dumping after gall bladder removal years ago. Getting a little bump on my gum and a little sand papery feel in my mouth.

    I have PET scan tomorrow and breast and liver MRI on friday. Nervous wreck over those tests but i know i will be better once that is done and results are in and can stop fearing it and put it in the done column. My testing is 100 miles one way. Hope the nausea car thing works out!

    I know this is just wishful thinking but I feel like my tumor may actually have already shrunk a smidge! More likely all the steriods just reduced inflammation i bet. But, a girl can always hope!!! I did have big loading doses of the Herceptin and Perjeta. My doctor calls those the Sniper drugs!

    Thanks to the wonderful people here and thanks for letting me share. So many kind and open people. What a blessing in my life to have found this group!

    Gotta get off these steroids and sleep again! Amazon loves me late at night !!!

  • teresablue
    teresablue Member Posts: 3
    edited January 2016

    I hope your second Chemo goes well, then you will be free whatever you want.

  • Kdettwiller
    Kdettwiller Member Posts: 12
    edited January 2016

    Day 7 post first tchp infusion. I've had diarrhea since Monday. Im taking immodium. I'm afraid to think what it must be like without the immodium because the diarrhea remains and sometimes comes on without warning. I also had my Dr call in a prescription for magic mouthash. Seem to be helping.I wasn't able to eat anything without discomfort. I've turned to the BRAT diet to help control nausea. Im scheduled to work Saturday. If I'm still having diarrhea like this there is no way I can go in. I am an RN in a hospital so I am in and out of patient rooms. I can't be stuck in a room and all of a sudden have to go to the bathroom. UGH

  • Paulinek
    Paulinek Member Posts: 117
    edited January 2016

    ladies I forgot to mention that I started taking a probiotic and that seemed to lessen bathroom trips quite a bit.

    I am day 13 after first treatment and tons of hair shedding. I think I will be going to the salon tomorrow for shave and wig fitting. I admire your bravery with shaving LovesToFly. I am so nervous

  • MissBee123
    MissBee123 Member Posts: 186
    edited January 2016

    Oh man, diarrhea was the WORST on TCHP. It was completely incapacitating and I told my oncologist that I could withstand any other side effects, but he had to help me fix this. I did probiotics, Immodium, Pepto, you name it. None of it was strong enough.

    In the end he prescribed diphenoxylate (Brand names: Lomotil, Lofene, Lonox) which did the trick. The problem is that it's contraindicated with one of the common nausea meds (I believe Compazine) so we had to get a little creative with what to try for that.

    So if you find yourself running to the bathroom every 2 minutes and your at home and OTC meds don't work, mention Lomotil to your doctor and see if you can give it a try.

  • tracyrosed
    tracyrosed Member Posts: 4
    edited January 2016

    Hi Ladies.. this is my first post.. but I am grateful for all that I have been reading - thank you! Everyone's contribution is hugely helpful. My first infusion is on Monday the 25th at 11.30. Thanks to a few lists of goodies I have found on this site, I will be going shopping so that my home is chemo-ready. I think the only thing on my mind is my doggie and the degree to which she can impact my health with her doggie germs.. She is my baby and I treat her as such. Anyone have any thoughts?

  • Kdettwiller
    Kdettwiller Member Posts: 12
    edited January 2016

    Thanks I'll definitely mention it if it doesn't get better. I can barely eat anything without stomach upset. It's not so much going super often. Id say its been averaging 3-4 times a day but when i do go it comeson suddenly and extremely lose. Its horrible.

  • MissBee123
    MissBee123 Member Posts: 186
    edited January 2016

    Hello tracyrosed! Welcome and we're glad you're here.

    Quick dog tip, as I've got a mini schnauzer. We ended up buying baby wipes in bulk and now after each walk we carefully wipe his paws and butt. He's a big cuddlebug and we felt that since we take off our shoes when we enter the house it was best for him not to bring in any outside dirt either. This was extra important as he sleeps in the bed with us; I love having the little fur ball keeping me warm. Between that and a weekly bath he stays pretty clean so I think the risks are minimal.

    Good luck on Monday! If you want to let me know your regimen I'll add you to the list; no pressure, it's up to you :)

  • Cathytoo
    Cathytoo Member Posts: 667
    edited January 2016

    Hi tracyrosed...i have a furry baby also. I arranged for a week of boarding. I'm going to do for the first week of each of my infusions. Since this is all new to me, I thought it was a good idea. He'll have a great time playing with new doggie friends, and I can relax a bit. I think the baby wipes for paws is a good idea. Use a hand sanitizer on your hands also. Good luck. Hope all goes well for you

  • robyn31024
    robyn31024 Member Posts: 51
    edited January 2016

    hi zinny thanks for all the suggestions but unfortunately have tried them all. But is interesting that a video online an onc made suggested rubbing organic honey over ulcers you can reach and actually made them feel better for an hour or so!!! Is awesome but wish i had known sooner. But my throat still painful to swallow. My onc just called in viscous lidocaine so hopefully that will help throat. I actually asked my onc if could wait on neulasta since some have such aches and fatigue from it.

    veronica and lovestofly looking good!!! I wore my wig to work today, a little itchy but prob just the hair trying to come out.


  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    I noticed my hair started to really falling out today, so I went on my lunch break and bought a new hat! May try a wig tomorrow

    image



  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    Cathy I forget if you have a partner/dog loving support? If you do, you might want to keep your dog at home. I found having my cat with me wonderful my first week after chemo, I was at home and relaxing and loved the companionship. Also if you're really worried about germs, then the white blood cells get lower later on in your cycle.

    That said, if you don't have someone else to help walk the dog and take care of him, then boarding him might be a help, because he will find you get tired pretty easily, and can't always predict when you were both will be up to going for a walk, etc.

    Obviously, you know best, and it might be a good idea to at least do it for the first cycle, and see how you respond. I just know that I couldn't get imagined being home alone for a few days recovering from chemo without my pet.

  • Cathytoo
    Cathytoo Member Posts: 667
    edited January 2016

    LovesToFly...my husband died suddenly ten months ago. So, it's just me. I have friends on call to help if needed, but the dog would be my responsibility. Love your hat. I bought another wig today. I'm getting a bit out of hand with these wigs!!

  • onehumpedcamel
    onehumpedcamel Member Posts: 10
    edited January 2016

    Hello Ladies!

    Got my first round today, all is well so far. A bit of nausea, but I took some prochlorazine and it seems to help somewhat. Really tired though.

    Is this some specifically teaching related disease? I am a teacher as well, and there's quite a few of us here.

    MissBee & Paulinek: you got probiotics? I was told not to eat anything probiotic foodwise. If they prescribe then I guess they know what it is you're getting and there's no worries.

    LovesToFly (or is it LovesToBreakHerBackDoingYoga :) did you get Magic Mouthwash? That's what they call it here in Montreal, a mix of kids' Benadryl, prednisone, and nystatin, whatever that is. Not even sure if the pharmacy made it right, the pharmacist at the hospital gave a recipe but my pharmacy seems to have thrown it out even though I asked to get it back. It seemed different to me but what do I know.

    Do you guys get Claritin prescribed with Neulasta? I am getting Neupogen (almost same as Neulasta) and I have to inject it myself for 5 days after treatment. No one said anything about Claritin. What's it supposed to do?

    Veronica: you look so much like my step daughter, who is also a teacher! She even has the exact same hair as you do. Very thoughtful thing to do, donating your hair!

    I think it's about bedtime now...

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    Cathy I'm sorry I forgot :( In that case for sure, board at least for the first cycle and see how it goes!

    Camel: I did get the magic mouthwash. It really helped. Mouth sores are gone...I use it once a day to maintain.

    Claritin was not prescribed, it's over the counter. I have 1 Neulasta shot a cycle, 24-48 hours after chemo. I'll be injecting myself starting next week (cycle 2 is Tuesday...I feel so "normal" right now I don't wanna!!) Claritin is supposed to help the bone pain that is a common (and sometimes severe) side effect of Neulasta seemed to work for me!

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    I've got 5 wigs and 2 on the way!!! (Only 2 "good" ones, the rest are fun ones from Amazon or EBay)

  • Delight55
    Delight55 Member Posts: 20
    edited January 2016

    kdettweller I saw my MO today before Herceptin ( 3 tries to get blood from my port, ugh!!!) and when I mentioned my diarrhea problems he immediately said I needed Lomotil and Flagyl. If those don't improve things I have to bring a SAMPLE next week. However, I've had two doses of each so far and my Subway sandwich is still in me! He also checked for dehydration - I wasn't. I would say contact them sooner rather than later. Not worth the suffering or the problems from losing all that fluid. Also the Lomotil here in TN is actually a controlled substance so I had to get a paper Rx to take to the pharmacy.

    He had mentioned the possibility of stopping the chemo and even though I tried not to get my hopes up I almost cried when he said I had to do the whole six rounds. He was waiting on the Mammoprint and it came back erroneous which was hard to believe. He insists the FISH test ( x3) was correct on my HER2 pos result but the mammoprint came back HER2 neg. so we go with the HER2 pos diagnosis and all six chemo treatments. He also said my tumor was high grade, which was news to me.

    It was not a stellar day for us and tomorrow I'm getting my head buzzed. Feeling overwhelmed at so many twists and turns on this journey. I thought my husband was going to explode when they were having so much trouble with the port. Lots of mushing and pushing and replacing needles, not fun. I will say I am glad to have this forum for support, especially from people who are experiencing the same thing and know what the struggles are like. It is priceless

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    Sorry you had a rough day delight. I hope that Subway sandwich stays inside you, and you have a better one tomorrow !

  • Krimson19
    Krimson19 Member Posts: 4
    edited January 2016

    Hello everyone! This is my first post on the forum. I've only been diagnosed about a week. I'm actually having my chest port put in tomorrow morning. I also start my chemo next Thursday, January 28th. They'll be giving me Adriamycin and Cytoxan every two weeks for the next weeks. I was just googling and found this forum. I'm very glad I did.

  • keepsake
    keepsake Member Posts: 59
    edited February 2016

    I read all posts. Welcome to the new posters. Sorry for so many here having problems with such nasty chemo side effects. Keep fighting all you strong women! Looking great with your new hats, hairdos, and wigs.

    Have a BCO resource for those of us with constipation problems from chemo - in "Forum: Help Get Me Through Treatment" see the thread, "Constipation - A Problem With So Many Of Our Drugs". For those of us with dry mouth - my hygenist recommended Biotene mouthwash (there's Biotene toothpaste, mouth spray and gel, too) and got a prescription toothpaste called "Colgate Prevident Dry Mouth" that was available at dentist's office - told to spread a pea-sized amount on teeth at bedtime after brushing with Biotene toothpaste and rinsing with Biotene mouthwash. Don't rinse Prevident. Leave on overnight to help prevent cavities caused by dry mouth. And for same purpose, got a fluoride treatment just before chemo started. For really dry eyes, I use a small dab of Refresh eye ointment at bedtime as needed on inside of bottom lid of each eye. Going to try my Ayr saline gel for dry nose. Mucous membranes drying up. Cold, windy winter weather doesn't help. Keeping well hydrated - told to drink total of 96 oz. of fluid (1 and 1/2 liters) daily for first 3 days after each infusion and to drink lots of water daily thereafter - 64 to 96 oz. total. Hope this info helps some of us.

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