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Starting Chemo September 2023?

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  • gracie_ibc
    gracie_ibc Member Posts: 10
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    Thanks for the welcome – I know exactly what you mean.

    My least favorite things are the GI issues (I swing between diarrhea and constipation) and steroid side effects (blood sugar all over the place) . Mouth soreness (day 6) and a ton of zits (day 14) are really annoying but usually only last a few days.

    Re swelling, I’m guessing you’re on steroids for a few days around infusion day? They’re supposed to help with swelling, but maybe they wear off for you.

  • layla21
    layla21 Member Posts: 16
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    @izzy123 and @gracie_ibc and @ktmalhotra How are you ladies doing?

    I start my 12 weeks of Taxol this Wednesday. I think I'm suppose to be happy that things are moving along and AC is done, but I'm feeling done. I feel stuck in cement. I am in stuck in a bubble and everyone is moving throughout the world.

  • izzyc123
    izzyc123 Member Posts: 27
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    @gracie_ibc I'm sorry for the delayed response. Round three was a booger for me. I lost 20lbs in seven days, all water weight thanks to diarrhea. Spent three days at the infusion center (not overnights) getting fluids and trying to get my potassium and magnesium sorted out.

    The steroids do help with the swelling but I usually start to swell again the week before my next treatment. My next one is this coming Thursday, 11/30, and I already can't wear tennis shoes because my feet are so swollen. I may wind up wearing my slippers to work tomorrow….

    How was your first round of Taxol?

  • gracie_ibc
    gracie_ibc Member Posts: 10
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    No worries!

    I think it’s @layla21 who recently started Taxol. Hope it’s going well!

    Your round three sounds terrible. I had my fourth round of TCHP last Friday and this has been a rough one. Usually, Day 4 is my worst overall. This time, I didn’t start to feel better on Day 5; instead, I ended up in the ER on Day 6 (the night before Thanksgiving) with a fever that turned out to be caused by a minor infection, so hopefully it’s due to the infection rather than any cumulative effect! I’m on Day 10 and finally starting to feel back to normal'ish.

  • izzyc123
    izzyc123 Member Posts: 27
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    @gracie_ibc Whoops! Yes, it was @layla21! @layla21 how was your first round?

    Gracie, I'm so glad you're doing at least somewhat better! How many rounds of TCHP do you have? I'm on the six-round plan.

    My onc wants to try a dose reduction for this next round. I'm not opposed because I carry so much water weight the week before that I'm thinking we have been dosing too high all along. My normal weight, pre-chemo was around 180#. I'm now at 197 and it's all fluid. By Monday, I'll have shed it all and be somewhere between 170-180. It's crazy. She's hoping that will help with the diarrhea. Fingers crossed!

  • layla21
    layla21 Member Posts: 16
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    @izzyc123 Tomorrow is 3/12 Taxol. It's harder physically and maybe easier mental/emotional. I'm thinking about going back to work early because I work remote. Now that my brain is working better I am a little stir crazy.

    My doc is talking dose reduction too. It makes me nervous, so I plan to talk it out more tomorrow.

    I hope it helps! Keep us posted.

    @gracie_ibc @izzyc123 @ktmalhotra How was everyone's holiday?

  • moderators
    moderators Posts: 8,085
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    @layla21 good luck with the conversation with your oncologist re. dose reduction!

  • izzyc123
    izzyc123 Member Posts: 27
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    @layla21 Today is infusion 4/6 for me. My onc decided to stay at full dose for this one and we are adding cholestyramine to see if that will help with the diarrhea. Fingers crossed!

    Our Thanksgiving was nice. I was able to do a little at a time and we had our usual holiday spread. I'm so glad because it brings me happiness: I love to cook and I love cooking big meals and having everyone around. (our everyone is just the hubby, our daughters and boyfriend, nice and low-key). How about you?

  • layla21
    layla21 Member Posts: 16
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    Is anyone still in chemo treatment from this group? Just me?

  • gracie_ibc
    gracie_ibc Member Posts: 10
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    I have my sixth & last round on Friday. (I was supposed to be done a few weeks ago, but my platelets did not want to cooperate.)

    How are you doing?

  • layla21
    layla21 Member Posts: 16
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    @gracie_ibc I have 5 more infusions. I'm feeling done and ready for the month break before radiation. I hope you had a good New Year!

  • gracie_ibc
    gracie_ibc Member Posts: 10
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    It was a pretty quiet but enjoyable New Year’s. Yes, I can’t wait to be done, and then I’m looking forward to my four weeks before DMX. Then four weeks’ break, then rads. It’s quite the long haul!

  • izzyc123
    izzyc123 Member Posts: 27
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    @layla21 @gracie_ibc I'm here! Just had round 5 of 6. Planning for BMX and waiting on plastics to see their recommendations. Exhausted and this time I've developed laryngitis and the most annoying non-productive cough. Hooray!

  • layla21
    layla21 Member Posts: 16
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    @izzyc123 ugh! Sorry about the laryngitis.

    The plastic surgery decision process is mind boggling. I had BMX 8/7/23.

    I'm currently in ER awaiting imaging, MO worried I had TIA/mini stroke. So much going around, the ER is packed.

  • layla21
    layla21 Member Posts: 16
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    @gracie_ibc such the long haul!

  • gracie_ibc
    gracie_ibc Member Posts: 10
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    @izzyc123 Hope the throat symptoms clear soon. Almost done with chemo!

    @layla21 I hope you're doing OK and they have good news for you. Going to the ER is a drag even when it isn't full.

  • izzyc123
    izzyc123 Member Posts: 27
    edited January 18
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    @layla21 How did the ER visit turn out? I know that had to have been scary?

    @gracie_ibc How have you been?

    I have my last chemo tomorrow, meet with plastics Monday and the breast surgeon Tuesday. I'm so swollen it isn't funny. I'll gain 20lbs in between chemo. Then I'll lose it all in the first week after. Curious to see what happens when I finish chemo. My onc feels it's because of the steroids…

  • moderators
    moderators Posts: 8,085
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    @izzyc123 Congrats on your last chemo tomorrow! And best of luck with your surgeon appointments next week, please keep us posted.

    The Mods

  • gracie_ibc
    gracie_ibc Member Posts: 10
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    @izzyc123, congrats on your last round! Woo hoo!

    Sorry about the swelling. I'm convinced that steroids are evil - a necessary evil, I guess. My weight swung too, though not as much as yours. Steroids also seemed to give me low blood sugar, flush my cheeks, and keep me from falling back asleep.) Hopefully it will all calm down when you finish.

    I was delighted to have my last round of chemo on 1/5 and at my fabulous new health care system (plus they let me ring the bell even though I still have surgery & rads left). The aftermath of my last round has been rougher than expected, which is a bummer. GI issues more severe this time (I'm wondering if it's the switch to bioidentical for Herceptin they use at the new place), plus I picked up an eyelid infection that made my lids suddenly balloon up. Ophthalmologist appointment soon, thank goodness.

    For next steps, I've met with my surgeon, will have a consult with a plastic surgeon re possible aesthetic flat closure, and expect surgery to be set soon for early'ish February. With IBC, they usually want you in as close to 4 weeks after last chemo round if at all possible.

  • layla21
    layla21 Member Posts: 16
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    @izzyc123 it was loooong, but everything turned out ok. Back on weekly schedule. 3 more to go! So close I can feel it!

  • layla21
    layla21 Member Posts: 16
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    @izzyc123 congratulations on the end of chemo!

  • izzyc123
    izzyc123 Member Posts: 27
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    @gracie_ibc @layla21 , my last round went out with a bang. Last Sunday, I managed to pass out in my bathroom. Had chemo on Thursday. Between Friday and Monday, I lost 17lbs! All fluid. Just couldn't keep up and down I went. Thankfully, I only busted my lip and bruised my nose and had a few other extremely minor scrapes (ie, knuckles). This whole week has been rough. Was seen in the ER on Sunday, the day I fell. Got 2 liters of fluids. Monday, I followed up with my oncologist, and they sent me back to the ER because no imaging/CTs had been done on Sunday (I was surprised, too. I couldn't believe they didn't do a head CT after a fall with confirmed loss of consciousness and facial injuries.). The ER doc there was determined he was going to find a way to admit me. Thankfully, my background is ER, and I was able to "argue" with him and come back home to my own germs instead of all the hospital germs. I do appreciate his thoroughness, though. I have no complaints about the care; I just don't like being on the patient side of the rails. Pushed myself to go back to work on Wednesday because I was tired of being at home and afraid that if I didn't get moving, I'd never get my stamina back. (I now work in a school, not the ER, so my work is my less physical.). I'm just today getting to where I feel I can almost keep up with fluids. It's crazy.

    I meet with Plastics tomorrow and my breast surgeon on Thursday, so hopefully, I'll have a game plan come Thursday. Just as I don't like being on the patient side of the rails, I hate the waiting/not knowing. I know you guys can relate.

    How are things going for you?

  • layla21
    layla21 Member Posts: 16
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    @izzyc123 I'm happy to hear they let you go Home! What a rollercoaster!

    Congratulations on finishing chemo.

    I only have 2 more🎉 1/31 & 2/7. I'm trying to go back to work part-time on 2/5. Nervous about my struggles with mental confusion and stiff painful hands, but there's only one way to find out how capable I am.

    Are you having a post chemo CT scan? Mine is scheduled for Feb 16th - seems soon to me. Trying to trust my MO - she certainly knows better than me.

    I think I get me first Zoladex injection March 6th and start radiation around then too🤷🏻‍♀️

  • izzyc123
    izzyc123 Member Posts: 27
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    @layla21 I wound up having everything but a CT abdomen/pelvis and a bone scan after my fall, thanks to the incredibly thorough ER doc. I haven't seen my onc since then; follow-up with her is on 2/8, the same day as my first Herceptin. Will see what she wants to do then. Thankfully the interpreting radiologist said my CT chest was unchanged from my previous and my previous was clean except for the one lymph node we already knew about. That lymph node shrank from 3.6cm down to 0.8cm, and we are crossing our fingers that my onc is right, that it's just full of dead cancer cells that couldn't get out.

    Meeting with plastics was interesting. I'd gone in thinking of the DIEP flap. Left having decided to go with implants. They require a two-night ICU stay for the DIEP to monitor blood flow. That freaked me out a bit. I like the idea of using my own tissue, but I basically decided that the DIEP was more involved than I'm willing to go right now. I've seen their work with implants (several friends have used them; some for reconstruction, some for augmentation), and they do a really good job. Luckily, I'm more of a tomboy, I guess, in that I'm not particularly attached to my breasts. They tend to get in the way, and bras aggravate me, so at least in this aspect, all of this journey is actually doing me a bit of a favor, lol. I get to go a little smaller and won't have to ever wear a bra again! Not exactly how I'd choose to go about it, but at least there's a positive. My bilateral mastectomy with expander placement will be 2/21, the day before I turn 50! If everything goes as planned, I'll come home on my birthday and I'm praying that my pathology will be my present with a pathological complete response.

    Best of wishes on going back to work! I'm a praying girl, so I'll be praying it all goes well and you adjust back to the working world without any issues!

  • gracie_ibc
    gracie_ibc Member Posts: 10
    edited February 3
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    @layla21 Good luck with returning to work. I’m my own boss and worked a very light schedule - I was definitely nervous about doing my first speaking gig after chemo started, but it went fine. I hope the same for you.

    @izzyc123 Sorry to hear your last round was even rougher than mine but hope you are on the upswing.

    I had my post-chemo MRI on 1/19 and bilateral mastectomies yesterday. I had the choice of staying overnight or coming home and was feeling well enough to come home.

    My plan is to stay flat - I’m not able to do immediate reconstruction because of IBC protocol, so I could only do the flaps in two years. Even if I could do immediate, I’m over lugging around the big heavy girls for over four decades, and I’ve had multiple biopsies over the past 9 years.

    Hang in there, ladies.

  • moderators
    moderators Posts: 8,085
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    We're glad the surgery went well, @gracie_ibc! Wishing you an easy and uneventful recovery.

  • izzyc123
    izzyc123 Member Posts: 27
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    @gracie_ibc I'm so glad you were feeling well enough to come home! I hope that today is just as good for you. I'm a little jealous of your decision to stay flat. I can't quite make that choice. Please keep us posted on how your recovery goes. I welcome any tips from someone who has BTDT.

  • gracie_ibc
    gracie_ibc Member Posts: 10
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    It can be hard to know which decision will suck the least, and it can really differ from person to person. For me, I’m very comfortable with the idea of being flat (it helps to have had my 36DDD be hindrances much of my life re running, fitting into clothes, etc. and then being dense and needing callbacks and biopsies). I figure I can always foob if an outfit calls for it or change my mind down the road and get DIEP - though very unlikely because as you saw, it’s a major surgery.

  • izzyc123
    izzyc123 Member Posts: 27
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    @gracie_ibc I agree. It's such an individual decision. I'm a 38D and am absolutely looking forward to going smaller. The one upside to all of this, right? ;).