Starting Chemo May 2018

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  • Hybrids
    Hybrids Member Posts: 42
    edited May 2018

    Hi Everyone. I started TCHP on May 10th and have my second infusion tomorrow. My MO told me to start with Claritin the day of chemo through Day 7, since I'm having the Neulesta shots the day after each chemo, but I've noticed a lot of women mention they start taking it the day before Chemo and go through Day 10. My bone pain seemed to dissipate around Day 8. Does it help better if you start taking it before chemo day? Do most of you take it until the bone pain disappears for each cycle?

    P.S.: I've been reading these boards for a while now and there's so much helpful information here! This forum has been great for me.

  • wlo002
    wlo002 Member Posts: 46
    edited May 2018

    Hi Hybrids! You and I are on a similar schedule for TCHP...I have my 2nd infusion Friday. Hope all goes well tomorrow!! I was told to start Claritin the day before chemo. Not sure if it makes a difference or if it just coincides with the start of my steroids and easier to remember. I had pain for about a week, too. There's no way to know if it was caused by the Neulasta or Taxotere, though, since both can cause bone pain. I took Claritin until the pain was gone just in case.

  • Hybrids
    Hybrids Member Posts: 42
    edited May 2018

    Thanks for the reply! I took a Claritin this morning and will plan on continuing until the bone pain subsides. I hope your infusion goes well on Friday with minimal side effects afterwards. This is all quite the experience.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited May 2018

    I start the Claritin the day before and take it for a week, also start drinking lots of fluids the day before and for the following week. Seems to have helped with the first treatment and i'm praying for the best for #2 next week.

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited May 2018

    Ok, first AC infusion is today. Scared out of my mind. It's going to be fine, right, ladies?

  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    Yes it will be, Inna! Can't speak specifically to AC, but I found #1 a little. . . boring. That's good!!

  • ClareCo
    ClareCo Member Posts: 66
    edited May 2018

    Hi Inna— I’m getting my first AC infusion today too. I’m thinking of you—we can do this

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited May 2018

    Thanks, Ingerp! ClareCo, let’s do it. Good luck to you

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited June 2018

    Ok, one AC is done, 3 more to go. The infusion itself was fine. The chemo nurse was super nice and I like the facility. The patients are in separate cubicles, and nobody sees each other during the treatment. Today I woke up with mild dizziness. Not sure if that is a side effect of chemo or a gift from my seasonal allergy. My mouth is very dry, so I use Biotene rinse since yesterday. Drink water like crazy. Dreading the Neulasta patch going off tonight, but hoping that the level of anti-histamines in my system will counteract the pain.

    ClareCo, how did your infusion go?
  • wlo002
    wlo002 Member Posts: 46
    edited June 2018

    Hi InnaB. Glad your first infusion went well! The dry mouth is rough. Mine lasted about a week and a half after my first infusion and then I got some "normal" days that were wonderful. I'm in infusion today but met with my oncologist this morning. She said that sometimes the Biotene can make the dry mouth worse (who knew?) and to suck on hard candy as well as keeping well hydrated. Just thought I'd pass that along.


    Hope everyone has a good weekend!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    Checking in from #3. Nothing to report (that’s good!). I have about another hour here. Then across the street to the gym for a quick workout. Then rush home to get a little gussied up and run to my first reunion event. Weather is looking a little better than predicted. Could use some good mojo for rain holding off tomorrow too. We’re supposed to have dinner on the Lawn, which anyone familiar with UVA knows is pretty special. :-)

  • Hybrids
    Hybrids Member Posts: 42
    edited June 2018

    Hi all! Thanks for the Claritin tips. I had my 2nd TCHP infusion yesterday. Nothing but slight dizziness today. Oh, and diarrhea, but that only left two days before the 2nd infusion, so I expected it. They gave me a prescription for Lomotil, so hopefully that will help because the Imodium really wasn't doing a whole lot. I've been drinking a lot of water though, so haven't had too much dehydration. I cut my hair short a while back. It still looks normal, but it's shedding like crazy and making a mess so it's almost time to shave it off due to the annoyance factor. Plus it will probably start looking think in a day or so anyway.

    I chewed on ice during Taxotere this time, and I'm rinsing with a baking soda/salt/water mix after each meal so hopefully that will help with the horrible dry mouth and messed up taste buds I had last time. Will see in a few days. I'm hoping tomorrow night/Sunday morning, I'll still feeling decent and not wanting to sleep as much as the first time. WIth my first infusion, I had surgery to repair a failed root canal from two years ago that was pretty involved (bone graft, removing/cleaning jaw bone and tips of tooth-my MO & Endodontist consulted with each other pre-surgery to find the best course of action), then had my port installed the next day and started chemo two days after the port was installed, so I'm not sure how much of my side effects were from just chemo, or from the combo of all the procedures on my body plus pain pills from the mouth surgery. I'm hoping my body was just worn down from everything combined and that's why I was so fatigued. Although, I've had a few people tell me the first infusion was hardest for them, then it got better until the 5th or 6th. Fingers crossed.

    I hope everyone is doing well with their treatment and is having minimal side effects!



  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited June 2018

    wlo002, thanks for the tips! I find Biotene helps, it’s just a pain to do it every time I eat something. Since I am afraid to have a big meal, which might upset my stomach, I eat smaller portions a few times a day. Then I get psyched that a mouth sore may start developing if i won’t rinse immediately, and off I go for another portion 😥. Nausea is in check for now, and dizzyness subsided after 25 min on the elliptical. To be continued...

    Wow, Hybrids, you got it rough! Good luck with your various pains, stay positive.

  • ClareCo
    ClareCo Member Posts: 66
    edited June 2018

    Hi everyone!

    InnaB my first AC infusion seems to have gone fine. Its been 24+ hours and no fever and no trips to the emergency room like with the Taxotere infusion. I’m feeling run down (I got a cold 10 days ago and it is hanging on) and definitely dry mouth but so far that’s it.

    Ingerp- crossing my fingers that the weather holds for your reunion dinner on the lawn!

    Wishing everyone a good weekend of relaxation and minimal side effects

  • Hybrids
    Hybrids Member Posts: 42
    edited June 2018

    I hope everyone’s doing well this weekend and wishing everyone a nice Sunday evening!

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 190
    edited June 2018

    Hello ladies,

    Jumping in from the April group. I finished DD AC a few weeks back and have started weekly Taxol. Second Taxol coming up tomorrow.

    Inna B, I had really dry mouth on AC. I used to wake up multiple times at night due to this. I used Biotene mouth wash and I also got a gel that helped quite a bit. Its Oral Balance dry mouth moisturizing gel by Biotene. You can give that a try.

    Best wishes to all of you lovely ladies in here

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited June 2018

    Thanks for the tip, Frog! Will get the gel today.

    How did your first Taxol infusion go

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    (1) Reunion weekend was super fun but super exhausting! And my hair held out just fine, although quite a bit in the drain yesterday. :-( Just one or two quick tears yesterday--not sure what I thought the timeline was going to be once it started but I guess we'll see. Next big social event is the 16th--pretty sure it'll be gone by then? Clare--no dinner on the Lawn but the upside is that we were inside with A/C and no mud. ;-)

    (2) . . . and the weekend was even more exhausting because <what the hell am I thinking???> we picked up a new dog yesterday. Technically on a trial run, but our Corgi has degenerative myelopathy (ALS for doggies) and something in me wanted to bring a new dog into the family before we lose our little guy (we have a lab mix too). I went to two adoption events in Central VA last weekend with two different pups in mind, but this guy kind of grabbed my heart of the 7-8 dogs I walked/interacted with. Anyway--first night went well. Driving him home in the pouring rain yesterday (after having to carry him about 200 yards to my car) I was kind of wondering if this is the right time but we had a good first night, and he is a pretty calm, happy boy. Kinda nice it's a cool morning (I'm afraid not to take him out every time he goes to the door!), and after today I think the week will be pretty dry (and not too hot!).

    (3) Sorry for all of the exclamation points. I'm a little. . . something this morning. I guess one of the good things is I've already been out for 3-4 short walks this morning. Good for me!

    (4) And I gotta say the busy weekend/start to my week has meant I really haven't had time to think about SEs from #3 on Friday. None to speak of--so, good!!

    (5) Happy Monday to all. Feel like I should cut down on the caffeine--enough going on and starting to write like this is a telegram <stop>

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited June 2018

    Ingerp, wow, aren't you a busy bee! Happy you didn't have SE's from your treatment. Hooray! Let's hope the next ones will be as good as this one.

    I’ll take the air conditioned room over the suffocating lawn anytime! By the way,Did you tell your mother about your diagnosis yet? I can’t figure out how to brake it to my father. Plan to wait until I must wear a wig...

    I've been thinking of getting a dog now and again, but a lot of things are stopping me. Firstly, I've never had a dog. I had a cat a long time ago, but that's not he same. I like the cute small breads like Pomeranian or Yorkie, and I practically salivate over Pomsky, but my husband doesn't like them. He says a real dog shouldn't be that small or that cute. And what would we do with it if we go on vacation, or when he gets sick. And that's where I stop wanting a dog, because taking care of the sick animal scares me. I guess I am not ready for a pet yet 😜

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    Inna--I haven't told my mom yet, but I probably will next week-ish, as the 16th gets closer (when I will see her on my way to the Pig Roast). I'll certainly let you know how it goes, but really I think I can present it in a not-terribly-big-deal way.

    Re: adding a dog to the mix, definitely wait until you can commit. So many pluses but certainly some minuses as well. For a while at least you need to plan your life a bit around them. I work from home almost exclusively--not sure how this would work if I didn't. (Actually--in the good old days I had kids at home to help. :-( )

  • ClareCo
    ClareCo Member Posts: 66
    edited June 2018

    Ingerp - you are unstoppable. Congratulations on your new four-legged family member. If you feel like it, post a pic of your furry family, I'd love to see them.

    Innap- getting a dog is a big commitment - and I've come to think there's no "perfect time." Still y ou are smart to think through all the scenarios because it is a lot of work, and finding dogsitters is not easy, etc.

    Nice to see everyone here today. I'm doing my first full day of work since last Wednesday and hoping my energy holds out. I just get so ... Heavy... you know?

  • Ultra1949
    Ultra1949 Member Posts: 14
    edited June 2018

    buttercup1: How are you doing? Haven’t seen posts from you recently. I now have your side effect of creepy pimples/zits all over my head. Doc says it’s folliculitis and put me on Doxycycline & said to try Tea Tree oil lotion. Chemo rash. Ugh. How long did yours last? Hope your side effects aren’t too bad right now.

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited June 2018

    I see some of you ladies are working during the treatment. My oncologist insisted on extending my disability for the duration of chemo plus an extra month, although I did explain that I work from home, so the infection will not be an issue. She said it will be better for me to be free and take care of myself. This makes me apprehensive, because she clearly expects that I will not be able to work due to the side effects. I can’t deny that it’s nice to be free from the deadlines and work related stress, but it clearly means that sheexpects the worst, right? I am scared.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    Inna are you otherwise in good health? It sounds a little odd to me, but I'm only doing Taxol.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    Clare--just for you. (And of course I was not going to get all three lined up. The middle one is the new pup.)

    image

    image

  • ClareCo
    ClareCo Member Posts: 66
    edited June 2018

    InnaB - my MO did say that AC/T was a more difficult regimen than just TC or AC. She made a point of telling me this when we were choosing what treatment to do. That being said, for me it was the T that landed me in the hospital for 3 days, so I think it varies. It might be worth it to ask your MO point blank how bad it usually gets. And, if you end up keeping the time off, then try to relax into it (ha! easier said than done, i know). You deserve to treat yourself well during this - we all do.

    Ingerp - THANK YOU for the lovely photos of your fur family. They are adorable and warm my heart. It makes sense that the new fellow is still moving about trying to find his space :) I would love to have three dogs, but I'd have to work from home to pull that off - maybe one day I'll find a WFH job and then...look out... my inner dog lady is coming out!!

    Hope everyone has a decent day with minimal side effects.

    Oh hey - one question - is anybody else experiencing nasal stuffiness and/or a cold that just won't leave. I've never experienced this until chemo. Every morning I wake up with a stuffy nose and it's been 3 weeks - definitely 10 days since the other cold symptoms went away.


  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited June 2018

    I thought I was in good health before I got my BC diagnosis 😰. I am 45 years old and was exercising regularly for many years. I thought they would encourage me to work, but instead they told me to take mini-vacations (2-3 days) in between treatments. My Oncologist said that fatigue will be the most difficult SE, although I somehow doubt it. That said, I do have a rather stressful job that’s big on deadlines and time sensitive tasks. I was asked to describe what I do, and then was recommended for disability.
  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    Clare--not sure if I posted here that our Corgi has degenerative myelopathy (ALS for dogs). Kind of heartbreaking, but something in me thought it might be a good idea to bring a new dog into the family before we lose him. Not sure what the timeline is--they say 6-12 months from onset of symptoms, which started around February. And just to keep bumming everyone out, he technically belonged to our youngest, who hasn't been home for two years. He'll be here for a few days in late June, and I know the contrast between the awesome, active goggy he last saw and what he's coming home to is going to hit him hard.

    Anyway--no stuffiness for me, although have had the runny nose (maybe not bad during allergy season!).

    We are having a *lovely* early summer week here in Central Virginia--it's been downright chilly the last couple of mornings. Hooray!!

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited June 2018

    Ingerp, your dogs are adorable! Just had a walk with my friend who has a golden doodle, if I spell the breed name correctly. He is one of the cutest and smartest dogs I’ve seen so far. Tons of positive energy! 🤣

  • ClareCo
    ClareCo Member Posts: 66
    edited June 2018

    InnaB - I'm doing taking about 2-3 days off per infusion. I get infused on thursdays, and take Thurs and Fri and Monday to get through the worst SEs. Could probably get away with working Fridays and Mondays now that Im on AC and not TC, but I don't want to risk another allergic reaction attack while at work. I'm also taking the odd afternoon off here and there when I just feel so fatigued. My job isn't all that fast-paced and I'm using FMLA - two factors that go well with taking a bit of time off. I think taking a few days off per infusion is more than reasonable.

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