Starting Chemo in October 2015

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  • biscuits
    biscuits Member Posts: 3,304
    edited October 2015

    mustlovepoodles: I have started my chemo bag and am anxious to get started. Please don't stress the port placement. Mine is in the chest and a fairly simple procedure. Slept good that night and just a bit sore the next day. Chemo Tuesday and back to work on Wednesday. I would be interested in knowing how many of the ladies out there are able to keep up with working full time during the treatments, etc?

    Skittlegirl: thank you for the welcome! Tri Cities is just a hop, skip and a jump away

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  • Skittlegirl
    Skittlegirl Member Posts: 428
    edited October 2015

    I am not working during chemo. My work involves biologically hazardous samples, so it would be a lot of meetings to figure out what I could still be exposed to. Plus it's cold and flu season and bronchitis is going around as soon as I left.

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  • DurhamGirl
    DurhamGirl Member Posts: 100
    edited October 2015

    Is anyone taking a probiotic to help with GI issues during chemotherapy If so, is there a particular one that your provider recommended?

    Thanks!

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited October 2015

    i was told at my chemo teach class no probiotics supplements at all during chemo - cant remember why right now, yogurt is fine but no probiotics at all

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  • homeschool4us
    homeschool4us Member Posts: 255
    edited October 2015

    I read that too, Kimmer. It is because they don't want anything in your body that could help the cancer cells thrive and not be killed off by the chemo.

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  • Andraxo
    Andraxo Member Posts: 410
    edited October 2015

    Durhamgirl - the post Neulasta headache (really skull and neck pain unlike anything I've ever had) was the worst side effect for me. I didn't take any anti-nausea meds aside from what was in my IV right before chemo, but was told it could also have caused part of the bad headache. I tried 400mg ibuprofen (a lot for me!) 3-4x/day for the headache but it didn't touch it. On day 7 my oncologist told me increase the Ibu to 800mg 3x/day (she laughed at my 400mg) and take Tylenol in-between at the 4 hour mark....so take something every 4 hours, alternating which med. I did that for 2 days, but only took 600 Ibu . It helped a lot, but was always still there a bit in the background. Tapered off pain meds day 9 to find it wasn't bad enough to need any more meds. Not looking forward to that skull pain again, but maybe it will be different with Neupogen instead of Neulasta. They do the same thing but acting times are different and supposedly not as much headache with Neupogen.

    I also developed a weird rash day 8 and they wanted me to take Loratadine (Claritin) and Pepcid. I took the Claritin since I take it for seasonal allergies anyway and took it with the Neulasta for a few days, but said no to Pepcid. I don't want to be chasing side effects with more meds that can/will cause more side effects. I'm sure you all know what I mean! I used a protective cream used for incontinent patients with zinc oxide as the active ingredient - it helped yay! My acne is a little worse too, but I've had it my entire life and I swear my mom still gets acne at age 80! And...my lips are still super dry and peeling, along with mouth mucosa still not quite right.

    Yesterday was day 12 post 1st chemo. I ran 10 miles (6 with my dogs, 4 solo after dropping them off). I really needed it mentally so I just kept going. It was slower than usual, but it was still sweet. Rested a lot after. Maybe I paid for it physically by the end of the day though - bone achiness again and had night sweats last night - though really all that could've still just been from the chemo. Woke up feeling ok. :)

    No one advised me to wear a mask at any point - including international travel planned in December after my 4th chemo. Here I stand at work - in a hospital. I'm trying my best not to see patients and do mostly admin work, and my staff understand why, but on short staffed days I may have to. Keeping my hands clean since I know I touch my face a lot, especially with the skin changes.

    Hair is starting to go. Laughing that pubic hair going first! I know this laughter will turn to tears at some point.

    Staying as busy and distracted as I can. Having my 17th annual Halloween party on the 24th (3 days before next chemo). Almost didn't have it, but thought it would be good for me, and many friends/co-workers (we all live in the same housing compound at my duty station) offered to help pull it off. Not sure about my costume yet - depends on what my hair does. Staying positive in thinking I could be a great zombie!

    You are ALL amazing!! Thanks again for sharing so much! I have no family anywhere near here and love that I have this place to feel connected to people who understand all the ups and down that go with this.

    xoxo

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  • Artista928
    Artista928 Member Posts: 2,753
    edited October 2015

    I'm taking and will continue to take probiotic. I'm on oral antibiotics which messes with your system. No one's told me not to take it during chemo. I was told before you start any supplement no matter how 'tame' to check with MO first. My infection doc told me Align is good so I pop a pill a day.

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited October 2015

    Andraxo, I do daily self-injections of Neupogen, and I have zero side effects, quite amazed actually.

    Yes, Homeschool, something like that - the probiotics (bacteria introduced by them) can lead to infections on your already weakened immune system.

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  • Andraxo
    Andraxo Member Posts: 410
    edited October 2015

    Kimmer33 - how many days in a row do you give yourself the Neupogen injections after chemo? Everyday until your next chemo round? They told me I'd get two days in a row of Neupogen (instead of one Neulasta) and that was it. Hmmmm. I will ask again when I meet with the NP before my next round.

    xo

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited October 2015

    Andraxo, I inject on days 3-9, and I'm on an every 2 week chemo round.

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  • Andraxo
    Andraxo Member Posts: 410
    edited October 2015

    Thanks Kimmer33! I'm definitely going to ask about it. I'll see how it goes with the 2 days of injection on my next chemo on 27th, but nice to know there still may be other options if the bone pain is still so severe. My chemo is every 3 weeks.

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited October 2015

    Ohhh, I am on dose-dense chemo, where I have to inject to get my WBC up in time for the next chemo treatment. If you aren't on dose-dense, then the neulasta may be on an as-needed basis for you. I don't know for sure. But yes, tell your doctor if bone pain is bad, see if you can get neupogen instead.

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  • ncsue927
    ncsue927 Member Posts: 57
    edited October 2015

    I get neupogen as needed to boost my count so I can get the next treatment. Almost had to delay the last chemo because one shot didn't bring my count back up enough. Second shot did it. However, I had the worst back and hip pain ever. And the headache. My MO gave me an iv pain killer, which really helped with the pain. I'm on day 5 after treatment and feeling pretty good today. Thank God for small favors.

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  • marylc
    marylc Member Posts: 13
    edited October 2015

    Hi All-

    Day 19 after first infusion. Hair started falling out in earnest on day 14--had my husband shave my head on day 15. It actually feels great--hair was like dead straw at that point anyway. It is SO easy--take a shower and you are done--no blow drying, hair dyeing, highlights, cutting. I am FREE! I have a wig I like better than my own hair. Also have a few hats, and am sewing some fleece ones to leave at the "free hat" pile in the chemo waiting room.

    Good luck to you all!

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  • BellaV
    BellaV Member Posts: 27
    edited October 2015

    biscuits: I am on "intermittent leave" with FMLA at work. I am working 30-40hours a week. I am allowed to call in when my symptoms are too severe and it won't count against me. Day after my first chemo I worked 7 hours. Second day after I was a mess and couldn't go in. I have gradually felt better each day. My major side effect is nausea/ queasiness and TIRED! Today I felt like my head was woozy and like I was a little tipsy. haha Not exactly a headache.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited October 2015

    Autumn--so far my bag has my fluffy throw, a bottle of water, a small makeup bag with lip gloss, tylenol, emery boards, a pen & note cards, and the book I'm reading "The Poisoner's Handbook"...how's that for some irony? I will also take my work laptop and try to get some work done while I'm there. I'll let y'all know how that works out.

    Barbiemama--if someone asked me if I had HIV, I wouldn't know whether to answer truthfully or tell them that I think I may have Ebola. Of course, a smart answer *could* get me killed on the subway...

    The port placement went well today. I was pretty dopy when I got there--I took a half a Xanax last night and then took another before I left the house this morning. Not so dopy that I couldn't sign papers, but enough that when the Fentanyl & Versed got on board, it reeeeeally worked. Which was funny, because one of the last things I remember saying is "I don't think this stuff is working!" Then, zzzzzzz....

    The sites look okay, a little bruised. I have always been called a "free bleeder", so I was kinda sweating that part. I had told the doctor and they did a bunch of bleeding/clotting tests, which all came back normal. So, they were planning to just be very vigilant during this procedure, and so far, so good. I've just been hanging out and not getting any work done today.

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  • Andraxo
    Andraxo Member Posts: 410
    edited October 2015

    Biscuits - I am working just about full time on my non-chemo weeks. I have to travel far for cancer care since there isn't any for hundreds of miles. So...on chemo weeks I work from *home* doing admin as I am able (approx 15 hrs my first chemo week) which is really my boyfriend's home 4.5 hours away in the same city I get my care. My supervisor is extremely supportive - Yay! - and has agreed to let me do admin remotely during chemo week and take any time I need when I'm on-site. I love my job/career and it keeps my mind busy now too (which I find to be most important!). So thankful to have incredible coworkers/staff who have stepped up to help too. They understand that sometimes I need to rest for a few minutes, or take a longer lunch, or go home a little early, and that I can't really risk seeing patients who might be sick. When radiation starts (Feb or March) I will work remotely doing all admin for the entire 6 weeks since it is so far away - assuming I'll feel better with radiation than with chemo. :)

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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited October 2015

    Tuesday: MUGA, chemo Teaching in Farmington and check in for surgery tomorrow in Augusta.

    Wednesday: Kyphoplasty

    Thursday: meet with oncologist in Farmington, PET scan and first radiation treatment in Augusta.

    Friday: chemo ---all day in the chair.
    All smooth sailing after that. I just need to fit in time to have my port placed.

    He never gives us more than we can bear, right? I am beginning to feel a bit like a science experiment. It'll be a wonder that I don't glow in the dark from all the radioactive tags and radiation exposure this week.

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  • homeschool4us
    homeschool4us Member Posts: 255
    edited October 2015

    Yesterday was day 4 post 1st AC treatment. The day oof (day 1) I felt woozy and wierd after. Day 2 I felt weak, but pretty ok. Was able to get out of the house some. Day 3 was more of the same weak, but able to do things. Day 4 I felt awful. So weak I could hardly get out of bed. Like I had barely any life in me. I have taken zofran and compazine alternating every 4 hours since chemo so I have only had a hint of nausea here and there. I had the on body injector of neulasta the night after chemo. Yesterday on day 4, I started getting facial pain and since it has crept down to my hips. Everything from my skull down to my hips is so sore and sensitive. In my face it's the bones, everywhere else it seems to be muscle and skin. My throat muscles also hurt a lot. I am taking ibuprofen for it once in awhile. Cutting back on the compazine today to see if that is giving me the awful weak feeling. So, today is day 5 and I am still extremely weak, but somewhat more clear headed. Biggest problem so far today is the aches and pains.

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  • twiggyOR
    twiggyOR Member Posts: 270
    edited October 2015

    For those getting Neulasta, a lot of people take claritin and Tylenol the night before and a few days after. It's supposed to help with the bone pain. I have done it with both my shots and had almost no bone pain.

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  • Andraxo
    Andraxo Member Posts: 410
    edited October 2015

    You were fortunate TwiggyOR! :) I took Claritin and Tylenol as instructed (day before and for days after the injection) and I don't think they made a difference on my skull/neck pain, though maybe it would've been even worse if I didn't take them!! Don't want to imagine that. Everyone is a little different. I think I fared better than many with nausea (didn't need any meds, just had to keep eating - especially spicy food) and fatigue (was able to exercise a good amount, though less time and intensity than my usual regimen), but the skull/neck pain was the worst side effect for me. Probably doesn't 't help that my treatments are in a city at high elevation (7k) and that I often exercise at even higher elevation.

    Hope everyone who had chemo in the past week is feeling better and better!

    Homeschool - you're almost through the worst crap - it should get better in the next few days. Sending you virtual energy!

    This week prior to next chemo is pretty nice thus far - I feel like ME again. :) Wish I could have another week like this before next chemo, but the sooner I get round 2 the sooner I get to round 6 and totally done, right? Fingers crossed the side effects are not worse for the next round.

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited October 2015

    homeschool hang in there, days 4 and 5 were rough for me too, rest, rest, rest!

    Andraxo, i agree, i feel like me again this week, and now friday i get another "hit", but we need to get it overwith!!

    I had a miserable night last night, random nightsweats all night which i havent had since the 2 nights following my treatment, anyone else have nightsweats their 2nd week after treatment?

    Ki

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  • Andraxo
    Andraxo Member Posts: 410
    edited October 2015

    Kimmer - Just had two nights in a row of night sweats - soaking the sheets. Chemo was 2 weeks ago today. Maybe it is going to be like this all week. Great otherwise :) All other symptoms mild enough not to affect anything I want to do.

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  • PatRN10
    PatRN10 Member Posts: 332
    edited October 2015

    Hi Everyone,

    Good luck to all having treatment today.

    Home School you are so in my thoughts everyday . Hugs and prayers to you.

    Tracy, I am also a Mainer (York County) but having treatment in NH.

    ncsue, I am also anxious to be free of this hair. Day 13 so should be soon. Enough already!

    I work as a school nurse so I see everyone who is sick. No neulasta. My MO is not convinced I need it and after reading about the headaches and skull pain I think I am OK with skipping it. Next treatment is 10/29 and plan to go back day 6. We'll see .

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited October 2015

    thanks andraxo. Good to know it isnt just me - nightsweats are awful. I kind of saw it coming though, i was really tired yesterday and by the time i went to bed felt like i was fighting something-eyes hurt etc. i even took my temp in the middle of the night thinking i was running a fever but no. And i agree, i have no other side effects, so will take the nightsweats. Are you on dose dense treatment

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited October 2015

    Many here have donated . Thank you !........Wandering around and cheerleading again :)


    Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs :)

    image

    https://community.breastcancer.org/forum/110/topic/834331?page=1

    Link to the mainboard donation page

    https://secure3.convio.net/bco/site/Donation2?df_i...

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  • Andraxo
    Andraxo Member Posts: 410
    edited October 2015

    Kimmer - yes dose dense, every three weeks. Same feelings as yours - like I was kind of fighting getting sick/viral, then all the night sweats but no fever. Of course I'm back to working full time and trying to exercise 1-2x/day, so my body is likely trying to recover from that at night too. Doing my best to get enough sleep/rest, but I've never slept well.

    Ran this morning in the dark watching a thunderstorm approach - it was spectacular!! - could see all the lightening below (I was on a mesa)...then it got too close so I cut it short. Safety first! :)

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  • ncsue927
    ncsue927 Member Posts: 57
    edited October 2015

    Hey, everyone! Just wanted to thank everyone for their input here. It really helps to talk to people who are going through this with me. I love my friends and family and they are being so supportive, but I'm a little tired of them telling me what I need to do. I live by myself, so I'm not used to having so many involved in what I do. They just don't have a clue what this is like. But I am forever grateful for their support. And for all of you.

    The night sweats for me started the day of chemo and tapered off until about day 5 and then were gone. If I could get rid of this constant discomfort in my gut, I would feel pretty good. Went today and had what little hair I had left buzzed. I shed a tear or two, but once it was done, it was not nearly as bad as I thought it would be. My hair was awful; dry, thin, scalp showing, etc. So this is better and I feel better having the hair gone.

    Hang in there, everyone! We are all one day closer to the end of this journey!

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  • Artista928
    Artista928 Member Posts: 2,753
    edited October 2015

    Onc called. Bone scan showed spot on pelvis most likely not cancer so we are proceeding as a stage III to start chemo on Mon. If the spot on the lung disappears after I'm done then it was cancer. So does this mean if the lung spot is gone that I'd be stage IV since it had mets to the lung? I'm confused on how the staging works. But I am relieved that onc feels it hasn't reached the bone!

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  • Jackalyn3
    Jackalyn3 Member Posts: 15
    edited October 2015

    Anyone have suggestions for leg pain? Had my first treatment on Thursday by that Saturday night I had

    terrible pain in my legs.

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