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Starting Chemo February 2021

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  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    AB45--how's the thrush? Did you get some medication for it? Bless you; I hope that will clear up soon.

    Jennie--is your rash getting better? My "steroid cheeks" are back for a couple of days but not bothersome; I look like Raggedy Ann but without hair. :biggrin:

    I have kind of a strange thing going on with the part of my port that extends into my neck (jugular vein). It seems to be poking out and feels really hard; I get a twinge of pain when I turn my head a certain way. It's not feverish, swollen or painful but is bugging me. I messaged the port surgeon earlier and he wants me to stop by next Wednesday when I go for my breast ultrasound. He will do a "doppler" scan on my neck to see if there's a problem. I'm sure it's nothing and my port is working fine, but I want to make sure. He also said if it gets worse to just walk into his office and he will look at it ASAP.

    Has anyone else had a weird neck thing with your port? Leave it to me to have the weird stuff.

  • aram
    aram Member Posts: 320
    edited May 2021
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    thank you. I hope so too, though I get nauseated easily and have mouth sores easily as well. But for now I am just hoping for an easier time than AC. I will be on weekly ones and if it is the same as AC I won't be able to work

  • JN5000
    JN5000 Member Posts: 72
    edited May 2021
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    AB45: how's your mouth? I'm so sorry you got Thrush. I wish that hadn't happened!! Is it healing? I couldn't ice my mouth during the infusion today -- I was too busy keeping my hands cold, and keeping all the tubes and wires (earbud wires) and mask ties from getting constantly tangled up. I probably looked hilarious. I'd love to see a good physical comedian do some kind of skit with that.

    Aram: You're moving onto weekly Taxols after AC? That's what I'm doing. This was my third Taxol today. The easiest day for me is the day of the infusion -- the steroids and the other premeds really make me feel good all day long. It's pretty hilarious.

    Today before the infusion the nurse pointed out my iron levels are very low, so I'm taking iron pills of some kind. If they're too hard to take, they'll ask the insurance to cover iron liquid in an IV drip. That would be awesome. What's great is that I will be eventually feel less tired -- the exhaustion has been so hard. I'm down 5 out of 7 days. But this will help. Aram: make sure you ask them to check iron levels if you're really tired and they don't routinely check them. My doc doesn't routinely do the several blood tests that determine iron levels -- I'm glad they finally did. They checked at the same time they checked b12 (which is high but that's normal for some chemo patients). I'm also going to start taking a daily med for reflux -- the doc said it's not common with Taxol and may be Adriamycin which is still present in my body -- whatever it is, I'm glad to take someting to get rid of it.

    LW422: How's your port? Ports are so odd. My kind of got jammed today and I had to put my arm in a certain position so that saline could be injected. Never happened before. But I'm so glad I have one -- it's very close to the skin surface so getting it poked doesn't even hurt. Glad about that.

    My rash is dried up -- if I miss an epsom bath for two days, it kind of pops up again, but then goes away with the next epsom salt bath. I love epsom salt baths. The rash was so itchy and nothing helped. I really think the epsom baths draw out the toxicity from my skin. That makes me reallly happy.

    Anyway, I'll keep you all posted with whatever comes next, and I hope everyone is doing okay. After tomorrow, we've got another week done. Quite an accomplishment!!!

    Jennie


  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hey Jennie. Glad you're doing OK and that your rash is better. It is a juggling act to keep all the "icing" going on during infusion. I just take my mask off since I'm in the room alone for the most part, and trying to keep ice in my mouth. No one has ever said anything to me about it. It is funny when they come in to take my temperature and I have a mouth full of ice chips, though.

    My port is OK; still feels a bit hard near my jugular vein so I'll be glad to have it checked out before I start AC. I have read that if AC gets into the tissues around the port it can cause necrosis and other serious problems. I don't need anything else to worry about!!

    Hope everyone is doing well as we almost wrap up another week! Hang in there, everyone.

  • Jvfireball
    Jvfireball Member Posts: 56
    edited May 2021
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    Hi all.

    Happy Fri-YAY.... Hope we are all doing well and ready for the weekend.

    Had my last infusion last week and normal side effects but my energy was zapped to a whole new low. But I am getting stronger each day and chemo is getting smaller in the rear view mirror. Radiation next....25 rounds (5 weeks). Starting PT to make sure I have full range of motion throughout and past radiation. Then I will have exchange surgery In December.

    I actually took a couple of days off this time. I am sure I could of pushed through but the rest could only help me feel better sooner was my thinking.

    LW422, so sorry the scan was delayed but it must be the right timing.

    All...I have missed you. Have a great weekend!!!

    Cheers

    Julie

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hey Julie. Glad your chemo is in the rear view! Hope you will continue to check in with us as you go through radiation.

    I've been unusually tired lately; just feel crushed with exhaustion. All I want to do is nap, so that's what I do. I will be glad to get the ultrasound next Wednesday and see how things are progressing, even though it causes me a bit of anxiety. I realize that it's better to know what's going on.

    Hope everyone is hanging in there and doing well. Check in when you can and let us know. Have a nice weekend, all.

  • aram
    aram Member Posts: 320
    edited May 2021
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    Hi Jennie, yes, I have one more AC and then starting weekly Taxol. Thank you for the iron suggestion. My iron levels were low before we even started treatment and I am taking daily pills. So far my dr has checked the levels every week but hasn't changed anything. Hopefully it doesn't go lower.

  • ab45
    ab45 Member Posts: 153
    edited May 2021
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    Hello

    Lw422, my neck on the port side will occasionally hurt, the tube always looks swollen and remains very hard. I would be interested to hear your results, may be something I need to check on

    Jvfireball hope all is well

    Jm5000 hope the rash is better

    Aram I got mouth ulcers my entire ac and now have thrush on taxol,

    thrush...it's getting better but still remains, have chemo again Wed so the cycle begins again

    Sending Best Wishes 2 All

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hey AB45. Have you discussed treatment of the thrush with your MO? I hate that you have to suffer with that. Are you rinsing your mouth with the baking soda/salt water? I hope you're feeling OK other than that.

    I'm having a doppler scan of the vein where the port tube is in my neck on Wednesday. Honestly it's feeling better now but I'm still going to have them check it out before I start AC.

    I hope everyone is having a SE-free weekend.

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hi everyone. A new week! Hope you are are feeling OK and managing treatment. I have my last Taxol tomorrow, then several appointments on Wednesday. I'm having an ultrasound of my cancerous breast, then a doppler scan of my neck to check my port, then I meet with my breast surgeon which ramps up my anxiety. I have managed to keep the "surgery" part tucked away but suddenly I'll have to face what's coming. I expect my surgery date will be in July if my schedule holds.

    And of course, I start DD AC next week which makes me cringe to think about. Thankfully it's only 4 treatments so I'll just have to hunker down and git 'er dun!!

    Take care of yourselves and check in with us. Thinking of you all and hoping for the best outcome for all of us.

  • ab45
    ab45 Member Posts: 153
    edited May 2021
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    Lw22

    I have a mouth wash they prescribed...getting better but still there...congrats on the last taxol...please let me know how Wed goes with the doppler

    Well Wiishes

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hey AB45 and everyone. I had the breast ultrasound today and the doppler scan on my neck and port area. Good news from both!! My tumor has shrunk and so has my lymph node that was swollen. The scan on my port was simple and no issues were found. It was weird but as soon as I made the appointment to have it checked it felt better. :rolleyes: I had the scan anyway just to feel confident that it's working as designed.

    So now all systems are "GO" for AC next Tuesday!! Hope you all are hangin' in there.

  • pchyen
    pchyen Member Posts: 96
    edited May 2021
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    Congrats LW422 on both scans! Perhaps the port will behave next time you tell her to, LOL.

    Best wishes for your AC treatment! The good news is that it is only 4 sessions. It will fly by fast.

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Thanks so much, Peter. Hope you and Nicole are doing well!

  • JN5000
    JN5000 Member Posts: 72
    edited May 2021
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    I'm so glad you had good news LW422, and that you're done with chemo, Julie! Congratulations!! LW422, the good thing about DD AC for me is that it's only four treatments. After two, you're already halfway done and after 3, there's only one more (that's how I thought about it -- it really helped).

    I go in for Taxol #4 tomorrow. I've had a lousy week -- lots of nausea I believe due to reflux. Got iron pills and an antacid, but the nausea continuing was a problem -- so I didn't take the iron and the antacid today. I will give all details to MO tomorrow and see what she recommends. I'm keeping fingers crossed the I'll get iron in a drip. I certainly have more energy, so I know the iron made a difference. It has been hard to eat and drink -- I don't want that for the next 9 weeks. So the big Taxol issues fpr me are GI tract and iron -- not what I expected.

    Anyway, I hope this has been a good week for everyone -- the weekend is almost here. I hope that means relief in some way. This group was started in Feb -- it's already the middle of May -- we're getting it done!!!

    Jennie




  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hello everyone. Hope your week has been uneventful, SE-wise. Jennie, I'm sorry you are having nausea. I have been taking Omeprazole (Prylosec) for reflux; not sure if that would help you but you might ask your MO about it.

    I've been feeling pretty upbeat since my scan results, so now I'm psyched and ready for what AC is going to dish out!! I can do this....I HOPE!!!

    So on to AC!!! Wish me luck, and I'm hoping that all of you are doing well.

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Starting AC tomorrow and SO nervous. I'm just dreading this so much. Wish me luck, everyone. I hope you all are doing well with your treatment. I'm feeling some hair regrowth on my head, just in time for AC to wipe it all off again. :crybaby:

  • ab45
    ab45 Member Posts: 153
    edited May 2021
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    Lw422

    Try to drink as much water as you can and eat a little something before you go..I made the mistake of not doing either very much on my first infusion of Ac...they may give you neulasta so remember to take claritin for bone pain...best wishes...keep.us posted

  • aram
    aram Member Posts: 320
    edited May 2021
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    LW422, good luck with your treatment today.

  • pchyen
    pchyen Member Posts: 96
    edited May 2021
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    Hi LW422, best wishes for your AC treatment today!

    Hi Aram, you have the last AC this week?

  • aram
    aram Member Posts: 320
    edited May 2021
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    Hi Peter, I had my last AC infusion last Wednesday. Going through steroid crash period at the moment. I will start weekly Taxol/Kanjinti early June. We still don't know if I get approval for Perjeta :/. I think Nicole will have the DD Taxol, not the weekly one, correct? Did the MO give any reasons why not weekly?

  • pchyen
    pchyen Member Posts: 96
    edited May 2021
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    Hi Aram, almost at the finish line for AC! Really happy for you.

    Nicole is doing DD Taxol, it’s the guideline from gov of Ontario. I asked if we can do Taxol first then AC. The Mo’s answer is that we have to follow the guideline otherwise meds won’t be covered.

    Are you waiting for Quebec gov to approve for Perjeta? I know Perjeta is not covered by OHIP nor my insurance so we are paying out of pocket, unfortunately.
    The drug maker gives discount of up to 60% for people that pay out of pocket, though it is still a substantial amount.

  • Jvfireball
    Jvfireball Member Posts: 56
    edited May 2021
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    Good Morning Ladies.

    I hope this finds everyone doing well. LW422 kick ole AC's butt warrior

    I am feeling pretty good following up my last Chemo infusion. I start my 25 rounds of radiation next week. Praying that it goes smoothly and the 6 weeks goes quickly.

    I am so honored to be a part of this group with so many amazing people, stories and journeys. Thank you all for the support so far and going forward.

    Cheers

    Julie

  • aram
    aram Member Posts: 320
    edited May 2021
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    Peter, it is not the government but the hospital itself. Based on what my MO said QC has decided the benefit is not enough for public funding. But apparently hospital has some funding to cover it if the tumor board decides it is beneficial. So we are waiting. I brought up the option to pay out of pocket and she was like "the benefit for you is not that much". I might still talk to them again after I hear from the board.

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hello, peeps! Thanks to each of you for your words of encouragement; you ROCK. I made it through the infusion and got home; I feel a little woosy but not sick. I ate a bit of chicken pot pie and now I'm chugging water. The red pee is kind of interesting, haha. They said my tears would be red, too...but I'll try not to cry. I'm loaded up with anti-nausea meds so I'll start them as soon as I wake up in the morning.

    AB45--I didn't get neulasta and my MO said I might not need it on the 3-week infusion schedule, but we'll see. My blood numbers look pretty good right now. How are you doing with Taxol?

    Hey Julie. That pink hat never fails to make me smile. Thanks for the encouraging words and I hope your radiation goes smoothly next week. I'm glad you're still checking in with us, so keep it up.

  • JN5000
    JN5000 Member Posts: 72
    edited May 2021
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    Congrats LW322! One down. I never cried during AC so I didn't see red tears -- such a strange idea!!

    It's great to see everyone progression through their treatment! Julie, glad you're onto radiation! AB45, I hope the Taxol is going okay. Ive been enjoying everyone's posts -- it's really encouraging to see everyone making it through.

    I haven't been posting much because I'm dealing wih Taxol side effects that I didn't expect. I kep reminding myself not to have expectations -- there are too many variables and potentialities with this chemo stuff. I thought Taxol would be essay -- it has been really tough. Any advice would be appreciated. I have strong vertigo from the treatment and that leads to vomiting. Today I went in for fluids and antinauseas meds in a drip/ Antinausea meds really don't help -- I think because the nausea comes from vertigo. Everything spins all the time -- this is day 4. I'm trying Dramamine this evening -- so far no vomiting, so maybe it helps? Also taking Prilosec because of strong acid reflex. Any ideas? After the next treatmnet (thursda) I am scheduling a liter fluids iv drip for Saturday, just to try to get a jump on dehydration, as well as doubling the fluid drip during the chem influsion.

    I love to hear your stories!! Thanks everyone for posting. Sorry for the misspeling and typos -- the vertigo makes reading problematic, so I'm just hoping this is legible!!

    Onward!

    Jennie


  • ab45
    ab45 Member Posts: 153
    edited May 2021
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    JN5000 and LW422

    Taxol is rough!! Not as bad as ac but the joint pain, acid refux, and stomach issues is no joke.. I think the every 2 weeks is double dose but not sure... I never heard about tears being red but that is interesting.. I enjoy reading all the info and updates, makes you feel less alone...my last taxol is the last week of May and then I move into radiation.... I hear radiation is rough but trying not to think too far ahead

    Sending positive vibes 2 u all


  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Jennie and AB45--I'm so sorry you are both having bad SEs from Taxol. I can honestly say that other that a few episodes of stomach cramping and loose BMs I mostly felt great on Taxol. I hope you can both get some relief from your symptoms.

    I'm feeling really tired tonight and I'm about to go to bed. I dozed off in my recliner and now have a kink in my neck. I'm scared about nausea tomorrow so I'll be tossing down the pills on schedule and drinking everything I can get down.

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    hello everyone. I have a question for those of you who have had AC treatment or are currently having AC treatment. After my first infusion yesterday it seems that my hands and feet are swollen. Did any of you experienced swelling in your hands and feet or anywhere for that matter? I’m trying not to panic but I can’t decide whether to call my doctor or just give it a wait and see. If you’ve had any swelling I’d appreciate a response. Hope you all are doing well

  • JN5000
    JN5000 Member Posts: 72
    edited May 2021
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    Hi LW422. I never experienced swelling in my hands or feet during DD AC treatment. I think if it worries you, then call. You don't need the burden of of spending energy worrying -- at least that how I look at it. Perhaps I call my nurses too frequently -- but they always help in some way, and it helps me to know I'm doing everything I can at any moment to ameliorate problems. I'm kind of a worrier but I figure the med team is there to help me make it through. My two cents!!

    Jennie