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Starting Chemotherapy March 2018

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Comments

  • YangSainst
    YangSainst Member Posts: 69

    Thank you all Girls for reaching out my Doc just told to take same med with benadryl today but I throw again twice today..but every time I do I ate after..lol


  • Sidalee
    Sidalee Member Posts: 113

    I'm so sorry you keep getting sick Yang! I wonder if your Primary Doctor could help since you aren't getting enough support from your Oncologist. My doctor and nurses have all said we should not have to suffer with vomiting on top of all the other stuff. Your body needs nutrition right now.

  • persnickety70
    persnickety70 Member Posts: 31

    Just finished round 2 of T/C/Herceptin. Glad to say everything went better this time - they premeditated me pretty heavily, (IV nausea med, oral nausea med, solumedrol, benadryl, ativan, pepcid) and I didn't get the chest pain and trouble breathing. I feel a little drowsy, but fine. As much as I hated getting my port, I am glad for it now. My MO suggested taking the claritin every day as long as I am doing chemo. It seems to take a bit to build up in our systems, so taking it off and on doesn't work as well. She also told me to keep taking the Nexium. No argument here - I never want heartburn like that again. Its just discouraging to see all the pills to take - I have never been on much for meds, this is hard to get used to. She suggested Vit B6 200 3 x a day for the neuropathy. Is anyone else having a little tingling in their fingers? I have found I have to be very careful with what shoes I wear - they have to be well cushioned and not much of a heel. Guess I will be shopping. Hoping to ward off the worst of the back spasms this time. I found a hot bath helpful, but not always able to do that!

  • Bec-Ky
    Bec-Ky Member Posts: 195

    Persnickity - Im totally going to take Claritin everyday then! Because I don't want back spasms like I had the other day... And if that is something that might help.... Then I'm going to try it. Can't hurt!

    Pun not intended.... 😂

  • MarlaM
    MarlaM Member Posts: 21

    Hi All, I just found this site yesterday and have been reading over all of the comments. It's so nice (and sometimes scary) to read from those of you who are on the same treatment as me and what you are experiencing. I feel terrible for those of you who are having so much pain and other bad SE.

    I was diagnosed in Jan, and at that time, they thought I'd have a lumpectomy and might not need chemo. After visiting my surgeon, she said that the tumor was too big for a lumpectomy, then after an MRI, they discovered that it was also in my lymph nodes, and decided my outcome would be better if I started with chemo and have a mastectomy later. I started TC on Mar 27. My bad days were 3-5, but I'm still more tired than normal. On day 3 my scalp started itching like crazy and, while it's gotten better, it hasn't stopped. From reading other comments, I guess my hair will start to fall out next week. My appetite has been pretty good and I haven't experienced any nausea, but I have had cramps and a bit of the big D. Food is still tasting weird to me, although that seems to be getting better too. I've had a bloody nose which lead to some rawness inside, and took the advice of rubbing some neosporin up in there, and it has helped. Yesterday was my first day where I felt pretty good, but today I'm especially tired again. I'm not taking nulasta, although it seems that most who are on the same treatment are taking it.

    I'm continuing to work during treatment, but I have a pretty easy office job. I don't know how those of you who are on your feet all day do it. My boss and coworkers have been super supportive, so if I need to take a day off or leave early, they are fine. I've been out so much over the last 3 months for appointment and tests, I feel very lucky to work at such a great place. I have an amazingly supportive family and friends, and my husband has been there for me in a way that I would not have thought him capable of. Our daughter lives about 6 hours away, and she has been home twice to help out. I know she'd like to be here more often, but she just started a new job (at the Cancer Support Center Arizona, coincidentally enough) so she doesn't really have any vacation yet, but they have been very understanding and have let her take some time off.

    I want to thank you all for being here. I wish none of us were here, but I'm glad to have you all to go through this journey with.

  • Bec-Ky
    Bec-Ky Member Posts: 195

    Today I felt amazing at work.. Full of energy and just running around all happy and cheerful and just overall so excited to feel so amazing!! Well, that ended at about hour 6...i started getting a headache and my eyes started burning (contacts) and and I was just so TIRED! By the time I left my lower legs were so achy and I was certainly not happy and cheerful anymore!

    I get done with an hour to spare before picking my kids up from school, and so I took an hour nap. Fell asleep right away.

    I guess I learned that no matter how great I feel, I still need to somewhat take it easy!


  • Bec-Ky
    Bec-Ky Member Posts: 195

    Marla I have the same thing with my nose... It's feeling really raw today. Another new symptom to add to the list... Lol

    I will try the neosporin tonight...

    And welcome to this month's chemo group.. A very nice bunch of ladies here, and I look forward to hearing how everyone is doing. It's so nice to be able to talk to people going through almost the same situation as you... Just makes all the difference!! ❤️

  • May07
    May07 Member Posts: 81

    Hi ladies!

    I have been getting tired quickly myself...and I work from home!! Went to my girlfriends house for coffee today after work and felt exhausted.

    I am cold capping but already feel like my hair is thinning out at the front and I haven’t even had the big shed yet...a little nervous about that

  • Steph74
    Steph74 Member Posts: 70

    Glad to see everyone is hanging in there...

    Welcome Marla! Sorry you have to be here, but you definitely found the right place as far as information and support goes.. the ladies here are wonderful!

    Add me to the sore nose group! I’ve been using Aquaphor and that really seems to help though.. and the Biotene did wonders for my mouth, I think it even helped bring my taste buds back a bit! I noticed my gums were bleeding a little bit tonight after brushing. I’m using an extra soft toothbrush but I guess I have to lighten up a little bit.. I have a bad habit of brushing too hard.

    I noticed the hair growth on my legs, armpits and bikini area has really slowed down. I shaved Saturday and it looks like I just shaved yesterday. The hair on my head is shedding as usual (I’ve alwayd been a shedder..lol) but I anticipate that to increase in the next week

    I have a lot of energy during the day but I am also crashing much earlier than usual at night. Tonight I’m exhausted, but I was also working with students at Stoneman Douglas all day so that is very draining emotionally!

    Hope everyone has a restful night! xo

  • NVDobie
    NVDobie Member Posts: 122

    Bec-ky

    Claritin didn’t work for me the first round but somehow worked this round. First round I took Claritin late, after my Filgrastim shot and it didn’t do anything. This time I took the day before the Filgrastim shot, and everyday since. So far minor pain that I can manage without any Tylenol. Plan to stop after Completing my 5 shots as the pain normally goes away for me after stopping Filgrastim.

    I am day 7 on round 2 of TC, today is the first day I start to feel normal again.

    Hang in there everyone.

  • Bec-Ky
    Bec-Ky Member Posts: 195

    Is the fligrastim the same as nulasta?

  • moth
    moth Member Posts: 3,293

    filgrastim = neupogen (= grastofil in Canada)

    pegfilgrastim = neulasta

  • NVDobie
    NVDobie Member Posts: 122

    Yes. Bec-ky


  • NVDobie
    NVDobie Member Posts: 122

    What moth said. :-)

  • Steph74
    Steph74 Member Posts: 70

    Well so much for chemopause...after all those hot flashes and night sweats I thought for sure i wouldn’t get a period this month! But it arrived right on time today, much heavier than usual might I add. Darn...

  • Bec-Ky
    Bec-Ky Member Posts: 195

    Oh no... I am sooooo hoping for no period!!!

    Maybe it won't last as long 🤞

  • RVS
    RVS Member Posts: 11

    Second round of Chemo tomorrow 😢

    I hope it's more manageable than first Chemo

  • Bec-Ky
    Bec-Ky Member Posts: 195

    Rvs - sending you good vibes! I hope this time around for you is much better. And maybe with all the things you went through for your first cycle... It may help you be better prepared.

    I am on day 8 of cycle one... And I should really take the time to look back on my posts and jot down my symptoms in a journal, so that could help me prepare as well.

    I should take my own advice... 😂

  • Kanona7795
    Kanona7795 Member Posts: 29

    Just had my second round of chemo yesterday. I feel great on chemo day and I thought I would be ok today but I’m so tired feels like I’m dragging a extra 10lbs on each leg. I did make it to work for most of the day but have another doctor appointment at the women’s clinic. Question for all you premenopausal ladies. What are you all doing for birth control now? I was told I had to remove my IUD so that’s happening today.

  • vball10
    vball10 Member Posts: 6

    Steph74,

    I too got my period the day after 2nd infusion, and I'm 52. I thought chemo was going to push me into menopause...nope!

  • Quiltingnut
    Quiltingnut Member Posts: 56

    Ladies, did I read somewhere that you were not suppose to eat raw veggies while doing chemo? I am so craving a salad.

  • moth
    moth Member Posts: 3,293

    Quiltingnut, it's not so much when you're on chemo as a whole, it's if you know (or think - based on previous cycles and where you are in the treatment) that your neutrophils are very low.

    this page has lots of details on what would constitute a neutropenic diet http://www.upmc.com/patients-visitors/education/ca...




  • Quiltingnut
    Quiltingnut Member Posts: 56

    thanks Moth. I’ll check that out. I would have no idea what my counts are right now. I won’t have bloodwork done until the day before my next round on the 18th.

  • moth
    moth Member Posts: 3,293

    Quiltingnut - I think somewhere in your patient info sheets about your chemo protocol there should be something about estimated neutrophil "nadir" . My understanding is it's usually around days 3-8 post chemo. Not everyone drops into dangerous levels during that time though...

    If you're taking Neulasta, the manufacturer in the UK has this chart up. The solid black dots are the concentration of neulasta and the open white dots graph is the neutrophil count. Looks like days 3-7 are really the big danger zone for infections, and by day 8 or 9 they're hopefully bouncing back up. https://www.medicines.org.uk/emc/product/6770#PHAR...

    Because I had febrile neutropenia after round 1 I'm being super paranoid and staying away from raw veg for the duration (super hard for me as I'm vegan!) but honestly, a more rational position would probably be just to do the first week-10 days.

  • Quiltingnut
    Quiltingnut Member Posts: 56

    thanks again Moth. Very interesting. Would you believe that I received NO instructions of any kind after my first round? You have to know though that I am going to a Veterans hospital. Probably not my wisest move. When I go back for my second round I’ll also see the oncologist that day. I will ask in both places for written instructions this time.

  • Downdoggie
    Downdoggie Member Posts: 51

    Marla, welcome! This group is informative and comforting.

    Steph74, I'm noticing the same hair loss pattern! No need to shave my pits now, free Brazilian on the way, and 2 hairy big toes, but not the pinkies. I still have head hair, lashes and brows, and wonder when they will let go.

    I had a good last week, except for stomach cramps, a tender belly and acute sore throat that spread to ear and face and head. Felt like an infection, got antibiotics, but it all went away as suddenly as it started so I didn't take the pills. My onco said chemo can cause weird throat issues and little ulcers back there. The doctor in urgent care was clueless and told me the white spot was probably food particles. Nope! Not food, dude! Using Biotene and the salt/ baking soda wash more.

    I had treatment number 4 this morning and hoping I will do okay this week. I'm not enjoying the extra belly girth due to steroids, but have to let that go for now and focus on the big picture of waging a war on cancer.

    Wishing you all pain free peace

  • May07
    May07 Member Posts: 81

    Bec-ky are you still having side effects? Or have they cleared up? I'm wondering what my “bad days" are also....kind of already forgot what happened and exactly when last week haha

  • Steph74
    Steph74 Member Posts: 70

    vball10-ugh that stinks! I was kinda excited about the no period thing and the one I got today is worse than the usual. Annoying all day headache and cramps which hasn’t been the norm for me in quite awhile.

    Becky- I hope it doesn’t last long either! Maybe heavier flow will mean shorter time...lo

    Kanona-my husband had a vasectomy after our second kid but I’ve heard a lot of people end up resorting to condoms since there aren’t many other options for non-hormone birth control methods.

    Downdoggie- lol at the free Brazilian! I guess if we have to look at the bright side as far as hair loss goes it sure will be nice not to have to shave/wax for awhile! My showers are gonna be lightning fast once I’m bald! 🤣

    I ate raw fruits and veggies during that first week but I was super careful where I bought it from and made sure it was washed really, really well. My nurse did say to avoid sushi especially in the first 10 days and that was hard bc I’m a big sushi lover.

    Good luck to everyone that had their treatment this week and I hope your side effects aren’t too bothersome! ❤️

  • May07
    May07 Member Posts: 81

    Steph74 my onco told me to avoid raw fish altogether, and wine....I was not a happy camper

  • Bec-Ky
    Bec-Ky Member Posts: 195

    May--even though I fought a headache for 1/2 of the day today... I considered today as one of my better days! I was able to relax and putz around the house at my own will. I soaked in a bath...❤️

    My nose is still raw and I seem to be having to blow it 2 or 3 times a day...

    I don't have any pains or bone pains anymore...

    Not noticing any hairloss yet (today is day 8)

    This whole time I've had an extremely healthy appetite... And I have been SERIOUSLY doing nothing less than stuffing my face. I have no wierd taste buds or anything of the sort. I just eat and eat and eat. I haven't gained any weight... But im sure I could pass as pregnant. I'm 5'5 and 155...so...ugh.

    At a time I should be eating healthy, I'm craving everything but.

    For example..... Today let's discuss. 😭 I had coffee with French vanilla creamer.... 2 cinnamon bread pieces of toast, an oreo vanilla yogurt, a bag southwestern salad, popcorn, 3 Hershey kisses, 3 slices of pepperoni pizza, kids Easter candy, one powdered mini doughnut.... Just.. Omg.

    This is the diet of a teenager.

    Before chemo ... I was pretty strictly low carb (no breads, pastas... rices... And such) and almost vegetarian... I hadn't had any meat since December 28th.

    Now I'm just rediculous. The docs at work say it's from the steroids they give during chemo? I just have a hard time believing they can last this long and make me eat like this.... 😂

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