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Chemo starting January 2019

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Comments

  • gkidsnana
    gkidsnana Member Posts: 13

    I had to go for my nuelasta(sp) shot this afternoon and trying to keep up with all my meds at correct times to try and keep ahead of side effects. Saying prayers for everyone who is also fighting this beast.

    B74 Best wishes and hope they get your cell counts up


  • santabarbarian
    santabarbarian Member Posts: 2,311

    re hair... I did not cold cap on chemo #1. I lost my hair shortly after chemo #2. Starting at #2, I used a homegrown cold cap system. I bought freezable caps for migraine sufferers from Amazon and used those. If anyone has in mind to do this you will need 4-5 caps because they do not stay frozen that long. I was worried about the taxotere and the possibility of permanent hair loss and wanted to diminish my chances of that.

    So the jerry-rigged cold caps maybe allowed me to restart my hair growth a bit faster.

    I had a five o'clock shadow on my head for my last chemo on Dec 3. It looked like my scalp was dirty. Now 6 weeks later, no hat needed. I have a super short messy pixie and I look like an art gallery owner. :-) Now I just need hip clothes!

    Sending good vibes to everyone.... hoping for for mellow tummies, tempting foods, restful sleep, yummy beverages, and good poops!!

  • alden722
    alden722 Member Posts: 22

    My port placement is scheduled for the 29, and chemo starts the 30. I typically wear my hair long but I went this morning and got a cute little bob so it's not as crazy, or traumatic, when it falls out.

    Those of you doing AC, how were the first 5 days or so? I have an overnight family trip planned for day #4 and I'm wondering how feasible this is. The nurse over the phone said days 3-5 are usually the worst, have you guys found this is true?

  • B74
    B74 Member Posts: 43

    Hi Alden722, everyone is different when it comes to side effects. But I'd be a bit worried about planning anything in the first week, let alone day 4. My SEs started VERY quickly (3.5 hours after the infusion) & I also recovered quickly compared to many - but still on day 4 I was feeling nauseous & not up to much. (Also having a major emotional slump after coming off the steroids). If I had something crucial on that couldn't be postponed I probably could have dragged myself there - but wouldn't have been happy

  • B74
    B74 Member Posts: 43

    MLAnne - they didn't give me a WBC boosting shot this round (not standard practice), but given this has happened, I'll be getting a filgrastim shot for future rounds. I've forgotten what the recommendation is for Claritin - do you start the day before? How many tablets?

    I'm still in hospital - now on an oncology ward which is much better than Emergency!! - still getting IV antibiotics and desperately hoping my next blood test is ok, I feel perfectly well & want to go home!

  • viewfinder
    viewfinder Member Posts: 200

    santabarbarian, I never heard about the possibility of permanent hair loss with chemo. Is that so?

    My sister is starting chemo next week and she and I have discussed several of the side effects, however we never heard about the possibility of permanent hair loss.

  • kaylajane
    kaylajane Member Posts: 39

    I'm on day #15 post TCH infusion, posted yesterday, "no hair loss yet". That was asking for it, as woke up this am to a tingly scalp, and sure enough, can pull unending handfuls of hair out today. We are at our cabin, so no clippers here. When we are home tomorrow, my husband is going to buzz it for me. I think continuing to pull the handfuls out would be too depressing! I look at them longingly as they go into the wastebasket.

    But, I'm feeling good, and that counts for a lot.

    Wig I wanted was backordered, so trying a different style, that should come next week. Till then, hats!

    Best wishes to all.

  • MLAnne
    MLAnne Member Posts: 65

    B74 - Re: Claritin. My paperwork said night before shot and then for 3-5 days. But that wasn't enough to give me relief from the bone pain. Another member said she started Claritin 3 days ahead. I will try that for round 2 of chemo. Get better soon. Sad

  • Ruffian188
    Ruffian188 Member Posts: 11

    Best wishes on you first infusion today Kathy03!

  • Skygirl44
    Skygirl44 Member Posts: 8

    first Infusion done with no problems but I think waited a bit too long on take my anti nausea meds when I got home. I took them with dinner and probably should have started about 2 hours earlier...i then had to play catch up to not feeling so sick. Slept pretty good after I took the Ativan and then was up a couple times in the night went tobathroom and more meds. Still have a bit of a headache but drinking lots of water to help hopefully. Today will be interesting starting giving myself the Gratix shots Winking hope the Claritin will help.


  • Jenkins00
    Jenkins00 Member Posts: 99

    Day 5 and starting to feel better. Back in the office today but in a fog. The bone pain is finally starting to subside but still need Tylenol. I started the Claritin the day before infusion but will try three days before next infusion. Nausea was minimal but not much appetite. Drinking 2 to 3 quarts a day and walking 30 minutes everyday except yesterday. I did 15 minutes and was pooped!

    B74 - I hope you are home and in your cozy bed!

    Skygirl44 - Glad everything went well and good luck with the shots.

    kaylajane - Yes, here is to feeling good!!!

    Good luck to those having their first infusion today.


  • Kathy03
    Kathy03 Member Posts: 44

    Thanks Ruffian188! I’m having my infusion now, nearly done with the 2nd of the 3 drugs. Thankfully it’s been uneventful and rather boring. How are you feeling?

    I thought I was getting Neulasta today too, but found out that my insurance hasn’t approved this yet. My MO thinks I may be ok without it, so we’re going to do this cycle without it and monitor my blood counts. If he decides I need it then we’ll fight that battle. From what I’ve been reading here, fingers crossed that I don’t need it

  • Nanomom11
    Nanomom11 Member Posts: 27

    I received my first ac infusion yesterday and my neulasta onpro went off today at 4pm. So far everything has been tolerable but I am starting to feel some muscle aches and slept a lot today. I started my Claritin and ibuprofen as instructed and hope that helps with any bone pain.

    I bought two wigs today. One is the color of my normally blonde hair and I decided to step outside my comfort zone and go with a totally different reddish brown I really liked. I figured I might as well give it a try!

    I’m wishing everyone the best with se’s and good luck for the upcoming first timers

  • B74
    B74 Member Posts: 43

    Jenkins00 - glad you're starting to feel better, I don't think I could have gone to work on day 5, good luck with that!

    Skygirl44, Nanomom11 and Kathy03 - hope you're doing ok after #1. Kathy03 - hopefully you can get by without the shot but please take care to avoid exposure to sick people & germs during the period when your WBCs are low. I was unlucky but also (in hindsight) a bit blasé, probably because I didn't FEEL any different. Nanomom11 - yay for trying a new look!

    Well I'm finally out of hospital and home, what a relief. I'm totally exhausted & feel awful after barely sleeping plus antibiotics, no exercise, horrible food & just stress from being in a place with so many terribly sick people (it was very upsetting). Only have a few days to get my energy back ready for #2.

    I had my review of #1 (with the MO) while in hospital. Because my nausea was so bad in the first 24 hours, he's added Ativan into the mix. He thought Claritin would be 'unnecessary' but he always downplays SEs so I'm listening to those who've experienced it rather than him!! However I'm beginning to wonder how I'll keep track of all the tablets or cope with so many different drugs. Akynzeo pre-chemo, Claritin & Ativan pre- and post-chemo, dexamethasone day of and post-chemo, AC chemo, filigrastim shot, Metaclopramide 'as needed'. To think I've always avoided even taking headache tablets....

  • Kathy03
    Kathy03 Member Posts: 44

    BZ7, yes I do need to be very vigilant about infections! Sorry you had a rough go of it this first time, and I'm glad you're home now. I feel fortunate to have gotten through my first night with no nausea, but I know I'm just waking up to day 2 so the SE battle is just beginning. Shocked


    Nanomom11, I went a similar path with my wig! I bought it 2 weeks ago. My hair is shoulder-length light brown, I went with a longer reddish brown wig! It's a similar to my hair but certainly a different look for me. I've named my wig Ginger, I expect she'll be making her appearance in a couple of weeks. I may also buy a shorter simpler wig, or perhaps a hairpiece and hat.

    Good luck to all of us on this new journey

  • MLAnne
    MLAnne Member Posts: 65

    B74 - So glad you are out of hospital and back home! I completely agree about the tsunami of meds the chemo causes. It is overwhelming when one goes from a vitamin daily to tracking a half dozen or more meds to be taken on different schedules.

    My wig lady called today to tell me my wig is in. I go pick it up next Wednesday but probably won't need it for a few more weeks. *fingers crossed*

  • Ruffian188
    Ruffian188 Member Posts: 11

    Bone pain kicked in on day 3. Relentless. Fatigue too.

  • ajbclan
    ajbclan Member Posts: 396

    Hi Ladies-

    Stumbled upon your post, and I remember appreciating some positive words while I was going through what seemed like a lifetime of crap! I'm 2 years (still crazy as it can feel like yesterday) out from finishing chemo. I'm here...I'm doing well :) Take one treatment, even day at a time! This forum is such great support and there's still a few of my group continuing to post and support each other.

    Hair- I bawled when I heard I'd definitely lose it, but yes the shedding becomes so annoying and compared to the side effects of chemo I was finally like "whatever". Do what works best for you (wigs, hats, etc). I also found that I didn't look in the mirror much so most of the time I felt like "me" and realized my friends and family were more reminded of the cancer looking at me.

    Taking tips from other chemo buddies on dealing with SE's was the best. You will be able to time out what your worst days will be.

    Wishing you all the best....with the least SE's possible! You WILL be me before you know it.......

  • Mylife42
    Mylife42 Member Posts: 11

    So 5 days in from first chemo. First night bad headache and nausea. Day 2 got neulasta shot and felt ok til day 3 then muscle aches, and of course tired. Muscle aches aren't bad now, just feeling extra tired and weak today. Still not sleeping well at night, so that's probly not helping with the fatigue. Any helpful tips for sleep? I would go out for a walk, but living in Minnesota at this time of year doesn't exactly bring nice weather!

  • MLAnne
    MLAnne Member Posts: 65

    Wow! I count a lot of Midwesterners in this group. Several, like me, from Minnesota, a couple from Wisconsin, and another from Michigan. What are the odds?

  • gkidsnana
    gkidsnana Member Posts: 13

    have gotten some good news ! All my scans have shown that the cancer has not spread anywhere else in my body, just right breast and lymph node. Had 1st chemo on Tuesday with neulasta shot on Wednesday, nausea is getting better but hips and thighs ache. Have found that water now tastes funny as do most foods, so that is not helping with my appetite. Don't think Dr will be happy with a 5 lb loss but still have another week before getting my second treatment. They moved it from Tuesday up to Monday due to dr having meetings on Tuesday. Glad everyone is out of hospital and hopefully doing as well as they can . Sending healthy thoughts and best wishes to everyone in our journey to regain our life

  • Kathy03
    Kathy03 Member Posts: 44

    Gkidsnana, that is awesome news!  So excited for you! It's nice to hear about the victories here.

    Ruffian188, sorry to hear about the difficult SE's. I keep waiting for the fatigue to hit me, I'm trying to take advantage of my energy while I have it.

    Mylife42, I hear you on the lack of sleep!  I suffer from insomnia (even before this BC) so I know how draining that can be. Didn't sleep at all the night before my first infusion. I've been able to nap off and on during the day since then, which helps.  I had a cup of hot herbal tea near bedtime last night and I was able to sleep 4-5 hours. But I don't think my current insomnia is pain or chemo-related, so I don't have any insight there.  Interested in what others may offer, since I'm sure this will hit me as well.

  • Mylife42
    Mylife42 Member Posts: 11

    B74- Glad to hear your back home! As far as keeping track of meds, I have a journal that I write in everyday to track my progress, how I'm feeling, bowel movements, and I write down when I take my meds and how many. I thought it would be helpful especially when chemo brain hits and I get to exhausted to remember!

  • gkidsnana
    gkidsnana Member Posts: 13

    Unfortunately MLAnne, for us all too often

    Mylife42,also 5days from chemo and my SEs sound a lot like yours, not sleeping well which is usual for me, and not able also to get outside as from deep freeze WI, right now, did some laundry, cook homemade chicken soup for supper tasted funny to me but family said it was good figured side effects as water even tastes off.

    Ajbclan, thanks for the encouragement! My chemo is every 2 weeks and kind of discouraged about not having longer time for getting better between treatments but will look at it like just means I'm that much closer to being done


  • Jenkins00
    Jenkins00 Member Posts: 99

    B74 - so happy you are back home! I only went in the office for my director to give me my performance review. Of course stayed longer than I should have and paid for it. I won’t be doing that the next rounds!

    Today has been rough. Called the clinic as I have oral thrush and a yeast infection. Prescribed fluconazole and have to follow up with MO because I also have a rash. It’s looks acne but it itches and it’s on my chest, back, neck and cheeks.

    MyLife42- Have your tried melatonin? Or maybe lavender essential oil? Sleep has been hard for me as well. Taking naps has helped.

    Gkidsnana- Awesome news!!

  • Mgm0712
    Mgm0712 Member Posts: 12

    Hello ladies. I am day day 12 and feeling more like my self. I have been lurking here but not motivated to write a post.

    So far the SE haven't been horrible, but I am definately very "off". I have had a bad taste in my mouth and some belly issues from constipation (wont let that happen next round) to the polar opposite. I have also had some headaches. The worst is the bone pain. Sleep is meh, depending on the night. Oh, and on day 7 I got my period. Horrible!!

    I am overwhelmed with the kindness of others. I am truly loved and supported. My birthday was on day 4 and my husband and kids made sure it was as perfect as can be. Yet, I'm battling anxiety (I have a history with anxiety) and some depression. I have been meditating and practicing mindful breathing techniques, butI have to take atavan and hope I can turn my mind off at night.

    Anyway, I feel like a turned a corner today so hopefully I will feel more myself this week!

    Ya'll have been a real comfort to me. I'm reading even when not posting, so thank you.

    Praying for you all.

    Melissa


  • RdhJoy
    RdhJoy Member Posts: 14

    Hi ladies!

    I’m on Day 16. I’m feeling pretty good; I just notice I tire easily. I’m going for my second round on January 24th.

    I didn’t get the Neulasta shot the first round even after my second blood test showed my numbers were really low, so that confused me. Not complaining. I didn’t get sick and I didn’t have the additional SE from the shot.

    I did have some vag irritation that nobody warned me about. Used some Vagisil Sensitive cream and it was a godsend. I feel like we need more support for these things that seem to happen; I felt uninformed.

    My hair is coming out in pretty big clumps today. Tomorrow I’m letting my 12 year old daughter cut it however she likes. Tuesday I will pick up the wig I picked out a few weeks ago. Had my anxiety/crying attack last night feeling sorry for myself and now I’m over it.

    Hope you are all having a great weekend. I’m in Illinois as well, so a midwestern gal as well. Thanks for sharing your stories!

  • rrshannon
    rrshannon Member Posts: 59

    Hi all, had my first round of TC on the 18th. So far this has been easier than the AC I had over 15 years ago on AC I was sick day 1 with vomiting and headaches. Today, Day 3, I was my most tired, and every day my taste buds seem to be getting worse. Water doesn't even taste good. Been having a little bone pain but I have that normally off and on any way so who is to say. Took a little walk today which felt good at the time but made me tired after. Today I have had a sore throat, has anyone experienced that on TC. Normail or something to keep an eye on?

  • Jenkins00
    Jenkins00 Member Posts: 99

    rrshannon- I had a little itchy throat but then again the weather in TX changes everyday and Mt. Cedar has been high. I would definitely keep an eye on especially if you develop a fever.

    I ended up shaving my head Sunday while my husband was still home. He is out of town the rest of the week. Ontop of the thrush and yeast infection I have folliculitis. Itches and looks like acne on my face, chest, neck and on the back of my head. Now with my hair gone I don’t look like a wild woman itching her head!

  • Skygirl44
    Skygirl44 Member Posts: 8

    Hi Ladies, hope you all had a good weekend. I'm on day 5 from 1st A/C pretty much feel like I have had the flu for the past few days. No motivation to do anything which I hope changes by tomorrow since I'm goung to get my hair cut (pixie style). Anyone have any good tips for food? Nothing tastes good anymore and really can only eat only cold things. At least no bone pain... I have been giving myself my Granix shots everyday. (Pretty proud of myself since I have never done anything like that before Smile

    RdhJoy-that is so great that your daughter wanted to cut your hair. My son (18) told me I should get a fun pink wig? (Really? -I'm not going to Coachella anytime soon? ) LOL

    Jenkins-so sorry to hear about that rash it sounds awful ...hopefully they will figure out a plan to get that remedied soon!