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Starting Chemo September 2021

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  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Good luck tomorrow, Mindthief! I have Taxol #2 tomorrow, crossing fingers it goes well. The nurse told me any reactions are either on the first treatment or the second but if neither, I'd be in the clear. I did have two days of bone pain this last week, nothing relieves it. No fatigue but slight neuropathy in index fingers and thumbs so I kept massaging them and it eventually went away. I used the ice booties and mittens I got from Amazon and froze the night before, taking them in a little cooler. I still needed some ice for my hands since the infusion is longer than the ice mitts seemed to last. Be prepared to fall asleep from the Benedryl!!

  • smoothoperator78
    smoothoperator78 Member Posts: 72
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    mindthief - so glad the genetics test came back so clean for you. I remember it being such a relief for me when I had the same. It allowed me to set aside all kinds of contingency plans. good luck tomorrow.

  • oldladyblue
    oldladyblue Member Posts: 302
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    Hi Kendara, Thanks for your kind words. I think of you ladies even though I am mostly in the October group, I started here. My second TC is done as of a week ago. I feel pretty good. Nutritionist suggested I cut out all fried food, all fatty foods (goodbye cheese), all citrus fruit, all red meat, all caffeine. The result is little to no indigestion or heartburn this time. Also very little tongue irritation. Plus Orgain Protein Vanilla for shakes, extra protein. My fave meals are salmon with steamed squash, oatmeal with a bit of apple juice, plain greek yogurt low fat with honey, hard boiled eggs and plain white toast. My tummy and intestines are very happy this time. I eat small meals every 4 hours or so and everyone else in my house is fending for themselves.

    The horrible chemo rash I got on my feet last time isn't too bad on my feet this time, but it IS all over my scalp. Nasty itchy red bumps that started 2 days after chemo and are still there. I am using prescribed hydrocortisone lotion and antibiotic lotion that I got yesterday. Helping a bit, but not much. So sad as I can't put anything on my head at all without irritating myself. So naked head that looks like measles or something, limited outside stuff, and one soft cap for 1/2 hour today when I went to the VA today to do my labs. All those hats and hairpieces are sitting unused right now. I wonder if I shouldn't have buzzed my hair two weeks ago, if that contributed at all? But too late to change that now.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Sooooooo, remember when I mentioned last week about having some intermittent pain in both my incision sites for 2 days following Taxol? The care team nurse said she had never heard of that and I should call my surgeon. It was gone by that time and so very obviously related to the chemo. Now this morning, after a terrible night sleep, I woke with those same incisions all swollen. By 8:30 I started running a fever and by noon it was 101.3. My cancer boob also swelled up to an enormous size and is tender to the touch. Of course, it's a Saturday, but I called the care line and got someone from Atlanta. She urged me to go to the ER, which I did not want to do because I'd get into yet another medical system with tons of tests and they probably won't know much about oncology, not to mention probable hours of waiting. So I've been taking Tylenol all day, sleeping under a bunch of quilts and am going to try to ride it out until Monday. I've never read anything about this in any material, have any of you? I'm hoping it's gone by Monday again but really want to know what is going on for next week--my boob could explode next time!!

  • AMG2
    AMG2 Member Posts: 90
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    Hummingbird, fever worries me a lot! I understand your reluctance, but I did go to the ER for fever early on with chemo, and they were checking with oncology the whole time I was there to give them guidance. I'm really concerned for you, and am worried about you trying to ride this out until Monday. If you still have fever tomorrow, would you be open to going in and being seen then?

    Just be very careful. I'm so sorry you're having to deal with this, and hope it just resolves. Take care, and im also sorry for being a busybody, just worried for you.

  • oldladyblue
    oldladyblue Member Posts: 302
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    HummingbirdAZ - I believe that you should do what your care team nurse told you, and go to the ER. Tell them you are a cancer patient and your fever was over 101 earlier, if it is not as high now. What you are experiencing is not normal, and although you probably don't want to go, you should go. Right away. Right now.

    My oncology nurse called me on Friday afternoon to go over my lab results and reminded me that I should keep in mind that if I EVER get any type of fever/chills with a temperature over 100.4 to go to the emergency room and let them know I am a cancer patient with a fever. I was told that after my first chemo also. I believe this is a standard thing all the chemo patients at the VA are told to do. Right now my WBC test is 1/2 of normal. I wouldn't mess with a fever personally, I would go to the nearest ER if I had a fever.

    Please do not wait.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Thanks Girls. I've been calling ER's and the shortest wait time is about 5 hours. I think the morning will have to do!

  • oldladyblue
    oldladyblue Member Posts: 302
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    HummingbirdAZ, I am sorry to hear about the long wait at the ERs right now. I am glad that you are going to go in the morning. Good luck with your visit and I hope you have a good night tonight.

  • sarah_78
    sarah_78 Member Posts: 119
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    Dear Hummingbird,

    sending you all the positive vibes and hope that your fever clears out by tomorrow. Are you taking Neulasta or something to boost your counts?

    Too bad ER waiting times are so long and they wouldn't prioritise. Weekends are the worst time to get a scare, hang in there.

  • moderators
    moderators Posts: 8,287
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    Hummingbird, please keep us posted!

    So glad you are getting checked out.

  • Suegibs
    Suegibs Member Posts: 3
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    hi there. New here. Starting chemo in two weeks and had planned to work part time thru it but noticing no one on here talks about working. Am I wrong in thinking I can work thru this

  • spades2525
    spades2525 Member Posts: 47
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    hey everyone, just a day out of my AC fog. And of course jammed my day full of wonderful activities yesterday so I’m a bit exhausted today. But it’s still recovery week so yay! Gearing up for my first Taxol on Friday. Mindthief, how did your first round of Taxol go? I’m also happy to hear about your genetic testing results. I am still waiting for my results.

    Hummingbird, sounds like scary stuff! I really hope you get the medical support that you need and you feel better soon.

    Suegibs- it’s likely so different for everybody, but I am off of work completely. I am self-employed working in mental health and require a tremendous amount of emotional energy to support my clients. So I decided to take the time that I need to focus on getting through this treatment and any extra energy I have goes towards my kids and family. I wouldn’t be able to work at all during the AC treatment week. And then I would only have a few days that I would be able to do any sort of work before starting it all over again.

    Oldladyblue-that scalp rash sounds awful! I hope you get some relief!

  • smoothoperator78
    smoothoperator78 Member Posts: 72
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    suegibs - I’m on weekly Taxol and have been working full time on FMLA Intermittent leave. I take off infusion time and medical visits, but I’ve been working nearly 11 weeks through chemo. Radiation starts soon and I will also be working through that (also taking FMLA intermittent leave as needed)

  • mindthief
    mindthief Member Posts: 62
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    Hummingbird - I hope everything’s okay and you’re on the mend. Update us when you can.

    Suegibs - I think it depends a lot on your job, as well as your chemo regimen and how you respond to it. I left my job when I was diagnosed because frankly it was a crappy job and would not have given me the flexibility or support I needed through this. If I could work at home and reduce hours, it may have been manageable. Do you know what your treatment schedule will be like?

    I had treatment #1 of taxol on Friday and every part of my body hurts right now. Ugh. It started on Saturday night and if anything has intensified. Hoping it passes soon.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Morning Girls,

    Well, I'm alive, but barely. What I went through over the weekend was much worse than surgery and chemo combined! I ended up at Mayo ER and went through a battery of tests, which I knew would happen, although surprised that they had to xray the port since"we didn't put it in". It took hours to get all the test results back but they were in contact with my oncologist and surgeon, so that made me feel better. My entire right (cancer) boob was huge, red and extremely tender plus growing rapidly. Now I know what it would have felt like to be a size EE or something! No blood infection, so that was good but an abscess inside that boob that they ended up drawing 180cc of fluid from. Holy cow. It still hurts like hell and I can barely let it touch my shirt. Fever is subsiding as I got multiple IV antibiotics and now have oral versions. Sleep is near impossible as I cannot get comfortable.

    Of course, they can't tell me why this would happen and I'll see my care team today or tomorrow; hopefully they have a clue. Given that after my first Taxol infusion, both incision sites had shooting pain then after the second, they blew up, I can't help but think it is related to the chemo. Also can't wait to see what pathology says as the radiologist told me typical abscess is white-ish and mine was pink. UGH. No matter what, I'm taking a break from chemo this week.

    Mindthief--that achiness lasts about two days, and literally nothing helps. Mine was on day 3-4 so I should start on that today (great!).

    Thanks for all the support and encouragement from all of you!! It's great to be part of this group :)

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hummingbird - I am sending lots of positive thoughts your way - please keep us posted. I was also told that ANY kind of fever no matter what over 101.1 was a trip to the ER and to tell them I was a chemo patient. I hope things have resolved for you by now.

    Suegibbs - welcome!!!! I've been working since the start of Cycle #2 - I waited through #1 to see how I did and turns out I was ok for the most part. I'm also super lucky that I have a very supportive manager who gives me all the flexibility I need - and of course I work from home so makes it much easier.

    I am gearing up for Chemo #4 this Thursday and enjoying the last few days of my "good week" with my taste and appetite back and no major side effects. Have also discovered that I now LOVE popsicles and eat at least 4 - 5 a day. Even when my taste is gone they taste good.

    Have a good week everyone.

  • AMG2
    AMG2 Member Posts: 90
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    Hi Suegibs,

    I'm on weekly taxol with #11 of 12 coming up on Wed. I take infusion days off, but have otherwise not missed a day of work; definitely you can work through it. Do keep up with hydration and nutrition to the greatest extent possible; makes a huge difference.

    Hang in there, and I hope it goes well for you.

  • AMG2
    AMG2 Member Posts: 90
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    OMG Hummingbird :(

    I am so sorry, but glad you got some care. What a horrible ordeal! Get plenty of rest and GET BETTER!

    Gentle hugs and love to you

  • mindthief
    mindthief Member Posts: 62
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    Hummingbird - oh my goodness, that’s awful! I’m so sorry you had to go through that. Did you get any answers from your care team about what happened? I’m hope you’re continuing to heal and that pathology comes back with a good report.

  • moderators
    moderators Posts: 8,287
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    Hi All,

    Chiming in to invite you to our Zoom Meet-up for people in treatment. Here is the information in case you are interested Medicating

    It's held every Tuesday at 1:00pm ET but you only register once.

    Today at 1:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting:

    https://breastcancer-org.zoom.us/meeting/register/...

    After registering, you will receive a confirmation email containing information about joining the meeting.

    Warmly,

    The Mods

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Wow Hummingbird - that was horrible for you. Sorry you had to deal with that on top of chemo. I hope by this time you're starting to feel a lot better. I'm glad they were thorough in their treatment and also that you are taking a chemo break this week. Sending very good thoughts to you.


  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Thanks DEBBIE, MINDTHIEF and AMG! I have to go back in to my original surgeon tomorrow and have yet another ultrasound and probably aspiration. It has filled with fluid again and despite the antibiotics, is still painful and red. The fever is gone, though. I asked her on Monday why this would happen more than 3 months after surgery and her response was kind of funny, "Well, there was probably some bacteria waiting in there until your white blood count got low enough and they just decided it was time to party" She is from Brazil and has an accent, so it made me laugh. I may have to spend the night if she wants to do intense 24 hour IV antibiotics, but hope not. I just want this over and am 1000% grateful I don't have to add chemo to this week!

  • spades2525
    spades2525 Member Posts: 47
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    Hummingbird, I am glad the fever is gone but it sounds awful that the swelling and pain keeps recurring. I hope they figure out a way to get it under control fast for you. On my end, I was supposed to start Taxol on an every other week regime, tomorrow. But I’m having such bad gut issues that they decided to give me a week break. I am happy for the break because not only did I not feel physically ready to go back in tomorrow, but emotionally I was taken down a few notches this week. I’m hoping I can re-coop both emotionally and physically this week!

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Hi Spades, Yeah, I have an abscess under the incision site from my lumpectomy, which they again drained fluid from today. I drew the lucky card and now have a bulb drain, which will stay in place for 7-10 days. So much for any sleep whatsoever. They gave me new antibiotics and off I went. Since I drove myself, I didn't get any narcotics to ease the pain of the draining or the insertion. A little novacaine and grin and bear it. It was brutal.

    Note: my lumpectomy was 8/3 and no one knows why this happened over 3 months later! And, the culture from the ER showed it was a typical bacteria found on the skin. Weird.

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Wow Hummingbird, super sorry you are having all these issues so late in the game after your lumpectomy. Never would have thought that was possible. I hope the new antibiotics and the drain will do the trick for you. I can imagine sleeping is a huge challenge. Cat naps all day when you need will be helpful. The rest is healing in itself. Wonder if one of those maternity pillows that wraps around your neck and body would be helpful to you at this stage - just a thought. I hope the healing begins quickly and completely for you. Sending you all my good thoughts XOXOXOXOXO

  • sarah_78
    sarah_78 Member Posts: 119
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    Hummingbird, sending you positive thoughts and healing vibes.

    It is good to know that it is just regular skin bacteria, still visualising them as teenagers who are ready to party when parents leave home made me chuckle and worry at the same time :-)

    Debbie, you are now officially two third done? How are you feeling?

    Spades, sometimes we need time to emotionally catch up, I had such an emotionally tough week myself. I am glad you get a small break to recover.

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hi Sarah_78 - yes, its official - #4 treatment yesterday went well, no issues and only took 3.5 hrs this time vs. 6 the first time. The pre-meds of Benadryl and Sudramedrol seem to have done the trick with those pesky reactions I had first time around, thank goodness. It's Day 2 and so far no issues. I was a little hyped up yesterday after treatment with those steroids in the Sudramedrol but managed to get to sleep by 10pm. Hoping for minimal side effects this time and I am gleefully looking at my countdown calendar to just 2 more chemo sessions!!!!!

    Hoping everyone is doing as well as can be expected.

    Love and kind caring vibes coming to you all from me for a good weekend.

  • sarah_78
    sarah_78 Member Posts: 119
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    About steroids, the usual protocol of my onc for THCP is 8mg the day before, 12mg the day of chemo, then 8mg for 3 more days. I knew those made me restless so I already told them that I wasn't taking it the day before chemo but would do the rest.

    First time around they gave me 12mg with chemo, that day I was talking all day long, switching from topic to topic like my mom (who has hyper activity). I told her i can now understand how she feels ;-)

    But with the next cycle I caught the old nurse of the clinic, she seemed to have forgot 12mg and gave me 8mg. I went home and was feeling alright but not extra active. I didn't notice it though since I had to swallow a number of stuff but with the third one I recognised the mistake after I was home. Well, for the better, 8mg is definitely doing the trick and not more so if they give me 12, I won't take the half pill from now on SillyHeart

    The same nurse also stuck the sterile band next to my port instead of over it but it is a story for another day. Happy

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Yes, I also take steroids (8ml, liquid) twice the day before, twice the day of and twice the day after. Not sure exactly how much they gave me via IV but sure enough to keep me buzzing. I think I am better now....thankfully. Phew. No wonder athletes take them, it sure gives you more energy!!!! Hahaha.... Chat again soon.

  • ninaca
    ninaca Member Posts: 228
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    Hi Everyone, Week #1 for me. Okay, I've been around the block a few times. I'm 75 and had BC 23 years ago, but I'm a newbie with Taxol (just got off of 18 months on Xeloda)! This is my first week and I appreciate all the information I can get from this site since you are all recently new at this. I had a port put in on Monday and first infusion on Wednesday. Pre-meds are all oral. First Week- 20 mg of decadron the day before, 20 mg the day of (5 pills 4mg each), along with pepcid and zyrtec the morning of. They put my feet on ice packs, and hands in a plastic bag filled with ice chips. Today, day 3, I'm feeling a bit dizzy and unsteady, fuzzy headed, and have had chemo nightmares the last two nights. Just wondering if this is all steroid related?- such a beautiful day today but I'm thinking I should just not move around too much until I feel more steady on my feet. Don't like feeling this way. Next week I go wig shopping and Decadron is reduced to only 3 pills an hour before infsuion (12 mg). Thanks for comments.

    Smile