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Starting Chemo September 2021

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  • spades2525
    spades2525 Member Posts: 47
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    Hummingbird- I’m so happy you are done round 4.. but will be thinking of you over the next 2 weeks as you get through the side effects. I had round 3 yesterday. I’m worse today than I have been the last 2 times… which doesn’t bode well.

    I haven’t been told to use Claritin with Neulasta…?..

    My hair loss is also weird.. I shaved my head and it is super patchy but still there in some parts.. glad to still have my eyebrows. We’ll see what happens. My taxol is 4 rounds and every 2 weeks

    Hope everyone is hanging in there. This is so hard.. emotionally and physically. Thinking of you all 🤗

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hi everyone - hope the last few days have been good(ish) for all. I am off for Session #3 tomorrow - now I know what to expect I am not excited about Days 4 - 10 but at least this one will put me 1/2 way through my 6 sessions. I have stocked up and become an investor in Imodium for those "special" days!!!! Also Desitin (TMI?) Hahaha....the joys of being us right now. Smile My husband made a huge pot of his famous chicken broth for me and I have bags in the freezer for as needed. Popsicles really worked for me last time so I have also stocked up on those and jello snack packs. Can't wait to be done, get the double masectomy in January and begin the healing and getting back to normal. FYI - my friend told me that Victoria Secret has a sale on masectomy bras - $10 each, limit 2...usually $49.50. Pretty good deal. Search for Bras and then Masectomy Bras. Small choice but good price.

  • sarah_78
    sarah_78 Member Posts: 119
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    It is rather silent here on September chemo class, figured it means less scares/side effects and everyone is busy with life Smile

    I am 6th day after Cycle #2, less rash, less runs compared to 1st one, hoping it stays that way. I managed to slow down Perjeta injection to 1 hour and Herceptin to 1.5 hours by discussing with the nurse, who was telling me "other people are waiting for the room, we can't do it as long as you want". Excuse me, I am not on a production band being injected chemo! *sigh* I will make sure to speak to doctor and write these times on my protocol.

    Second phone talk with psychooncologist, not sure if it is helping. Whatever fear/worry I tell she tells me it is normal.

    Neulasta shot hadn't been bad, took Claritin the same day, a few hours before the shot but it made me feel crappy so next day I decided not to get it. (Spades2525, probably you are fine without it too, you have bone pain?) I didn't feel bone pain this time around. Thank you for all the tips on that one. Hoping on Monday my counts won't be as low as last time so I don't have to visit hospital every second day for blood draws.

    Debbie, your determined outlook to get through the treatment and surgery with eyes on the prize is so inspirational. Your husband's famous chicken broth made me hungry even if I am having crappy taste buds. Keep up the positivity <3

    Hope everyone else is doing good.

  • mindthief
    mindthief Member Posts: 62
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    Sarah_78 - I’m hoping everyone’s been absent because they’re feeling good, and not because they’re feeling awful! This cycle really wiped me out… not looking forward to doing it again tomorrow.

    Sending positive thoughts to all of you :)

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Hello Girls!

    I'm emerging from my chemo haze today. It took me a day or two longer this time but I'm happy the AC part of therapy is OVER! Now I'm researching the Taxol part to prep for that starting next Friday. I'm hoping the big fatigue is a thing of the past...not sure I can go on much longer being totally down for so long. My daughter is here for two weeks helping me, which has been wonderful! She's cooking and basically running the house while I've been in bed. So nice to not be all alone, suffering through.

    Hoping everyone is managing well and looking forward to the weekend. I'm going to get some Halloween candy in case little ones ring my bell next weekend. Might even eat some myself, even though I'm a keto dieter. I lost 6 lbs this time around, so might need a little carb/sugar to fatten me up!!

    Positive vibes to all!!

  • mindthief
    mindthief Member Posts: 62
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    Hummingbird - congrats on finishing phase 1! I asked my MO about fatigue with taxol and she said unfortunately it usually continues and is cumulative. So that’s awesome.

    I’ve been having a lot of anxiety again about whether this is working. My MO checked the spot I was worried about on my skin and said it was nothing, but now I have blood work coming back weird, and persistent discomfort in the top of my rib cage, and she was less dismissive of that. I asked whether I would get rescanned at some point and she said not usually but in my case she will. I’m not sure if that’s reassuring or terrifying!

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Mindthief--EEEK, I hope everything is okay. Please keep us posted. If any consolation, my onco said that it is highly, highly rare that any new cancer would show up during this kind of treatment. I do know the two points I get the bone pain after Neulasta are my shins and my upper rib cage, so maybe it's that. I get the anxiety, though. I asked to take a couple week break between AC and T and was told no, it needs to continue for best protocol. Tears flowed.....

    Not great news about the Taxol and fatigue. I have heard all about neuropathy, which is in itself frightening, but c'mon.....how much more can a body be in bed?!! It's bad enough to have to go through all the holidays alone and toxic, the least we should get is some energy!

  • sarah_78
    sarah_78 Member Posts: 119
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    mindthief: about anxiety, maybe it helps to talk to an oncopsychologist. They might direct your thoughts in the right direction or prescribe you something? It is so unlikely that cancer is spreading during chemo but I am glad your oncologist will give you a scan to put your mind at ease. That said I can relate to things you write. I had been thinking about my other breast and wondering if they checked that one well enough, then what about the nodes in the chest? Did anyone look at it from CT? At some point I went as far as reading brain surgery types because I had a mild headache and was convinced I needed one. Ugh... hope we get over it in time and learn to control our worries.

    hummingbird: 3 days after chemo this time I suddenly understood what you meant when you said "feels like my body is not connected to the legs and there is a delay". I measured blood pressure because mine had been too high during diagnosis and they gave me something to get it under control. I think that feeling might be tied to blood pressure, being too low in this particular case. My pulse was also low at the time when I felt like you described.

    And fatigue, the only thing that works for me is to push myself out of the bed, take an extensive walk as long as my "runs" allow it. I also try to do my favorite cardio, Zumba, if i have enough energy left. Each time I have to drag myself to do these things but I feel more energetic afterwards if I can.

    Hang in there girls, we got this :-)

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hi all - I had Treatment #3 on Thursday and it went well - the side effects I had during the Taxotere previously did not happen as they pretreated me with IV Benadryl and Solumedrol which seems to have done the trick. Phew. The whole thing was only 3.5 hours vs. 6 hrs the first time so all good there. Its Day 3 and my taste has already started going (much sooner than before) but so far no runs although I know that will happen very soon. Otherwise taking it day by day and happy that I am now officially 1/2 way through my treatments. I am trying not to let anxiety slip in but I know its very hard with the ominous "C" word looming in the background. Trying to be super positive as I know that a good attitude goes a really long way. Ready for a rainy weekend here in N. California (finally) and wishing I could taste the yummy food I know my husband would be making me. Ho hum. Lose a little weight Debbie!!!! Hope everyone has a good weekend. Sending love and positive thoughts to all my new friends on here.

  • Kendara
    Kendara Member Posts: 13
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    Hi, everyone! I was diagnosed with TNBC Stage 2A on September 13. I started neoadjuvant chemo September 27. Twelve weekly rounds of Taxol and Carboplatin, with Keytruda added in every three weeks. The TC will be followed by four rounds of AC over twelve weeks. Afthat I have surgery and radiation to look forward to. I’ve completed four rounds and my fifth is tomorrow. Something of a rant follows so don’t read if you’re preserving your optimism.

    The side effects have been the worst so far this week. I’ve had unrelenting acid reflux, nausea, abdominal pain, and diarrhea. A horrible bitter metallic taste seems to be oozing out from my tongue. It makes water and sweet foods taste terrible. Days three through five after treatment I feel weak and shaky. My scalp has been sore and hair shedding for almost two weeks now, but hair is not completely gone yet so I can’t go bare-headed without leaving hairs everywhere. I cut my hair into a very short pixie after my first treatment. And three days ago, I developed an itchy bumpy red rash on my scalp around the back of my head (going to show the oncologist tomorrow). Despite using cold mitts and booties, I have numbness in my left fingertips. When I went for my third infusion, my neutrophils were low, so I had to go to a treatment center for three days afterward to get Zarxio shots. So don’t let anyone tell you that Taxol is easy or doesn’t have side effects. The anti-nausea meds give me headaches and make me dizzy. The steroids give me insomnia and flushing. If I had to choose between living like this for the rest of my life or stopping treatment and having a few good months, I would choose the latter. I keep going because I have a chance to be cured and have something of a normal life in the future. Also for the sake of my husband and (young adult) kids.

    I’m sorry for the rant but I just had to keep it real with people who might understand. I attend a virtual support group and have lots of family and friend support. But knowing that I am going to feel sick and weak for months and months, and may end up with long term or permanent side effects is hard to take. I am in awe of those who have faced second or third cancers or are living with mets, and have chosen/are choosing to go through chemo again or indefinitely.

    I will post something more positive next time and address the other individuals in this group. Sending my prayers and love to you all and hoping your experiences are better than mine.

  • monarishairclinic
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    Great article! Very informative.

  • spades2525
    spades2525 Member Posts: 47
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    I was definitely quiet on this thread through this week as round three really took me down at the knees. But this is recovery week and I’m certainly enjoying every minute that I feel more like myself. Mindthief, that is super stressful and certainly adding any additional anxiety onto what you’re already going through, feels like a lot. Thinking of you and hoping for reassuring outcomes!

    Hummingbird, I’m so sorry you didn’t get that break that your body needs so badly. It is so hard that we have to keep pounding through this regime to get the best outcomes. I can totally understand the tears. But a big high five for getting through all of your AC treatments!

    And Debbie, a big high five to you as well for being halfway through!

    Sarah, what a great attitude about exercise.. If I am lucky, I’ll sometimes feel safe enough to walk for very short increments during chemo weeks, but Itry to exercise every day during recovery weeks.. it helps me feel stronger and more like myself.

    Kendara- this is a good a place as sent to rant! Hang in there. I hope you get days where there is some reprieve from all the difficult symptoms.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    I'm still fighting the fatigue when I should be having my good days, so feel a little (a lot) cheated. The cumulative part is real and the thought of going through this every week is painful right now. I'm hoping some of the effects you state in your rant, Kendara, are from the Carboplatin and not the Taxol. Not sure I'll make it through that scenario! Literally everyone at the cancer center says the Taxol is much easier than the AC but then some online stories don't appear to support that. I'm T-minus 4 days until starting the Taxol and right now feel like chemo is how they break you so you don't care if you die from cancer....sorry, I'm described as the most positive person in the world but this just plain sucks. I've been having serious thoughts about quitting chemo. Probably doesn't help that I haven't been out of my house/yard for two weeks, right??

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Kendara - sorry you are having a tough time. It's not so much fun, that's for sure. Hey, re the water metallic taste I have found if my water is icy icy cold it's much better. Give it a try. Also re. the hair, I just went ahead and shaved it all off rather than letting is slowly fall out - there's something about being in control of at least one thing - and I felt much better after that. I hated the look of half gone and straggly pieces. Hope you get to feeling better soon. Hang in there....

  • oldladyblue
    oldladyblue Member Posts: 302
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    Hi all, I was on this thread when I thought I was starting in Sept, but didn't actually start till Oct. I keep reading to follow up on you all. I hope it gets easier for everyone, my first infusion went well, 2nd one coming up Friday (of 4). One woman on this thread doesn't come here anymore, but kept in touch with me by text. She wanted to quit her chemo after infusion 2 of 4. Lots of side effects and tiredness. Quitting is OK, per my doctor, and hers. However, I told her that "if you started it, perhaps it is best to hang in there so you don't look back in the future and wish you had continued". She went ahead and she finished #4 the day I started #1. She sent me a video of her dancing yesterday, as she finally felt energy again, and thanked me for pushing her to continue, as we are all doing this to add time to our lives.... I hope Hummingbird that you find the strength to continue with this awful treatment if you feel can imagine looking back from 1 year from now, when this is more of a memory than a struggle, that you are glad you continued. If you choose not to continue, I certainly understand, and you have that right.

  • mindthief
    mindthief Member Posts: 62
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    Thanks for your thoughts, Hummingbird, Sarah_78, Spades... Currently I'm just in wait and hope for the best mode, like everyone else. If my blood work gets weirder, my MO may order scans sooner, but as of now, it won't be until after chemo is finished.

    Sarah_78 - I've been seeing a therapist since shortly after my diagnosis, knowing that anxiety was likely to get the better of me. Clearly it's helping Loopy. (I joke, but really it does help. My therapist is actually a stage 4 breast cancer survivor, so she certainly understands my fear).

    Hummingbird - I'm sorry you're having such a hard time. I totally understand what you mean about feeling cheated out of your good days. Every cycle seems to extend a bit farther into the recovery week...

    Kandara - welcome to the group. By all means, rant away. We definitely understand.

    In terms of fatigue, I agree that forcing yourself to exercise when you're able to does help in the long run. I've managed a walk every day so far, and hoping I can keep that up. Same days it's only 15 or 20 minutes, but I like to think it reminds my body that it's capable of moving! Today I made myself do some strength training as I've lost far too much muscle.

  • Kendara
    Kendara Member Posts: 13
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    Hey, September ladies! Thank you for accepting my rant and for the advice that was offered. I feel better after seeing my oncologist on treatment day (Monday). The rash on my scalp is folliculitis and I was prescribed an antibiotic lotion to apply daily. My doctor also agreed to cut my steroid dose in half, which he said will help with the insomnia, folliculitis and weakness. He didn’t like that my weight is dropping and recommended nutritional drinks like Ensure or Boost. Those have artificial sweeteners in them, though, so I am drinking Carnation Instant Breakfast packets mixed into milk. Same nutrition benefits with more calories. He offered to prescribe a proton pump inhibitor for the reflux and said about half of chemo patients end up taking them, but they are notoriously difficult to get off of (my father struggled to do so) so I am going to see if I can get by with Pepcid and baking soda.

    Hummingbird, I hope you get your “good days” back soon with less fatigue. And I agree with what others have said that we are all going to have days when we just want to quit (like I did on Sunday), but then we think about why we want to live and we keep going. Yes, chemo sucks. No one enjoys it. Some have a harder time than others. Vent when you need to and tell yourself that a better day is coming. Heart

    Debbie, I’m glad your third treatment went well! I hope your tastebuds return to working order soon. Congratulations on being halfway done!

    Sarah, I am so impressed that you are able to keep exercising! I was a Zumba instructor pre-pandemic and had gone back to classes pre-cancer diagnosis. I just haven’t had the heart or energy to dance since getting diagnosed. Still a ZIN member though and could watch/dance along to the instructor videos if I could just get motivated to do so!

    Mindthief, I am sorry about the anxiety producing symptoms you are having and hope you get reassurance very soon! Hope your bloodwork returns to normal.

    Spades, I am glad you felt well enough to post after a tough treatment. Hope your strength increases each day.

    Old lady blue, it’s kind of you to check in with the September ladies even though you ended up being an October lady! We hope you will keep popping in here to give us updates!

    Sending love and prayers to all,

    Kendara


  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hi everyone, hope you are all doing well. I am pretty shocked at how "not bad" I feel after Chemo #3 last week - I was expecting to be much worse than #2 but that's just not been the case. Lack of taste and super sleepy/low energy but none of the runs or cracking fingertips I had last time around. Maybe my system is getting used to the meds? I don't know but I'll take it. Hope some of you may be having a similar experience. Just wanted to put a little hope out there Smile

  • sarah_78
    sarah_78 Member Posts: 119
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    Hi there September chemo class!

    I am hoping everyone is having a nice weekend with minimum side effects.

    I am glad Debbie's 3rd cycle is better and Kendara's second message is more hopeful :-)

    I am so jealous of mindthief's psychooncologist who is a survivor herself. Mine isn't doing great in terms of understanding my anxiety and fears. I remember last time 10 years ago during my lymphoma episode, my onc's secretary was a breast cancer survivor and she was the only one to whom I could rant. I brought her a present after I was done and still remember her efforts in talking to me and assuring all would be fine, she made a huge difference for me.

    I was just taking a walk at the park close to my house and enjoying the beautiful colours of autumn while thinking about sharing a few thoughts with you all and answering a few things you mentioned.

    First off, I'd like to mention that although side effects of the regimes we are getting aren't very easy to deal with and chemotherapy is a very general approach to kill cancer cells because it damages other cells in the process (hair, nail, mucous membranes etc.), still I started feeling a change in my energy levels at the last days before the next cycle and it is in a positive way. I can feel the burden of tumor lifting off my system and by each cycle I feel better/more energetic than I was before the treatment. As I wrote before, this isn't the first time for me, I got my first chemo 10 years ago for lymphoma and I remember something similar back then as well. I'd like to write everyone: Try to concentrate on the positive instead of negative: Chemo isn't a walk in the park and perhaps not very targeted then again, it works most of the time for breast cancer.

    This might be also why you feel better Debbie, since your tumor burden is decreasing, your body is fitter, hence it can cope up with side effects better or has more energy to recover. Hope it goes on doing that. We should all stay positive and hopeful, which is also a very important.

    Second thing I would like to mention is about fatigue and sport. I try to approach the last days/last week (whenever you feel yourself better) right before the next cycle as "conditioning for next cycle" when I try to achieve 3 goals: 1)eat as healthy as I can (fish, veggies etc.) 2) drink as much as I can (since the metallic taste seems to be better) 3) exercise as much as I can.

    I know right after chemo and for about 7-10 days after it will be not the best time to do all these three so I try to condition my body to get through it in the best way possible. A few tricks I found that works for me:

    1) trying different recipes from around the world, just got asian 5 spices and tried udon noodles with veggies and meat the other day, it turned out good :-) Yesterday I cooked something with leek, yummy.

    2) In terms of hydration, I found out adding a few drops of lemon makes drinks better for me currently. I used to be a big fan of green tea, now it turns out I like black tea with a bit of lemon squeezed in. I also add some drops of fresh lemon in my water, it does the trick. Also I switched to water without gas, since my stomach is constantly bloated, not necessary to put more gas in there, lol.

    3) About exercise, starting it seems to be the most difficult task :-) I try not to push myself and for example start walking slowly until it feel right to walk a bit faster. Same with Zumba, start doing minimum, not jump around too much but as it goes, I find myself doing more and more. I aim not to push myself or force myself into unrealistic goals but take it slow.

    Kendara, I am so impressed you were a Zumba instructor! Your body should be used to doing the moves so why not try it slowly at first to yourself and see if it is something that you can do some of the days when you feel better?

    We all know exercise also helps positive thinking, so two birds with one stone!

    I should stop before this gets longer and no one reads it haha.

    Send you all hugs <3

    Sarah

  • IamCatMC
    IamCatMC Member Posts: 1
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    hello all. I'm Cat. Sorry I'm “late" to post here. I just learned about this site and saw this board and thought I'd join. I was diagnosed with IDC, stage 2A, grade 3, triple positive on 7/26/2021. No lymph node involvement. All from a lump I found in the shower on 6/10/2021.

    I started my chemo treatments 9/23/2021, after having my port placed 8/11/2021. There was a delay in getting started after getting my port because the financial assistance person at my doctor's office, who was taking care of getting my meds and chemo paid for, quit their job. It caused another delay in getting my second chemo treatment as well. I've been told it won't happen again. My treatment protocol includes TCHP, every 21 days, for 6 rounds. Then I'll get surgery after I'm done with chemo. And hormone blockers too. My team of doctors isn't sure yet whether or not I'll need radiation. They're waiting to see what my outcomes are after surgery.

    I got my second chemo on Wednesday, 10/27/2021. I'm better than I was on the first chemo. A wonderful nurse at my infusion place gave me some tips so that's been helpful. I'm pretty much feeling like I'm thirsty, hungry, and am in a general pain all over my body at the current moment. But am having a hard time eating/drinking because of heartburn, so that stinks. The temperature dropping outside is helping to keep my temp down as well. Just trying to get through the chemo (4 more rounds to go). Then surgery. I'm hopeful that no lymph node involvement and that the lump I found has completely gone since the first chemo treatment means something good for me. That and I'm early stage.

    Anyways, that's me all in a ramble. Hi

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Morning All,

    Well, I didn't quit, although I asked to after reading about what others said about Taxol! The doctor talked me out of it due to the fact that I am on weekly, which is much easier to tolerate (we shall see). The majority of comments come from those on the dense dose/3-week cycle and my cancer center does a weekly 1/3 dose to make the side effects much more tolerable, especially after AC. It extends the time to 12 weeks but I did it yesterday and we shall see how it goes. The oncologist told me not one of her patients has ever said it was comparable to or worse than AC. SO.......guess I'm back in the club.

    The Benadryl, though.....the nurse asked me how it normally affects me and I told her I had never had it in my life. I am not a drug person (which is why this whole thing feels so contrary to me) and honestly have taken not much more than a Tylenol a couple times a year. It knocked me out so I slept through the majority of the treatment and for about 3-4 hours once I got home! Thinking maybe they can lower the dosage on that one!!

  • sarah_78
    sarah_78 Member Posts: 119
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    Hi Hummingbird, I am glad you are back to the club, meaning you are going on to kick those cancer cells out of your system faster!

    Antihistamines like Benadryl make me super tired and sleepy too, this is why I couldn't keep taking Claritin either, i was sleeping all day. That said Taxol is known to cause allergies, so better keep that at bay and get the medication I suppose. You could maybe still ask if a lower dose is possible. I am with you on being "not drug person", I don't even get painkiller for headache. But hang in there, this is temporary :-) After it is over you can go back to being a no-drug-person.

    Welcome I amCatMC,

    me and Debbie are on THCP. Heartburn is from reflux perhaps? Tell your team you have that, they can prescribe medication for it. I will also have 4 more THCP and then surgery, just like yourself. Surgery should be around end of January for me. After that I will be getting H and P to complete a year with them. You'll get them too?

  • mindthief
    mindthief Member Posts: 62
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    Hi Cat, welcome to the group! The heartburn is awful, isn’t it? Mine has gotten worse every round (I had dose 4 of AC last week) and was just started on medication for it. My MO seemed to indicate this is a common side effect of chemo in general. That’s awesome that your lump has shrunk so much already!

    Hummingbird- so glad you’re still slogging through with us. Keep us updated on how the taxol treats you this week

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Wecome IamCatMC - we are on the same cycle and timing - TCHP every 3 weeks. My last chemo will be 12/23 then surgery (double chop chop) in Jan or Feb. Don't know yet about radiation till after surgery. Me and Sarah_78 are on the same regime as you.

    Heartburn - yes, so painful - they told me to take Pepcid Complete twice a day and that seemed to help (I did sneak a dose or two of Gaviscon liquid as well).

    Still doing pretty well but taste is not 100% back yet. Very sleepy this week so taking lots of naps. Appetite is better than last week. Next week is my "good week" hopefully before Round 4 on 11/11.

    Nosebleeds are much more frequent than ever before, mostly the week of my Xarxio shots and the week following. Quite annoying. At least they don't last too long. Otherwise the other thing I notice is that the skin on my fingertips is very sensitive and dry - been slathering with Aquaphor each night to prevent cracking.

    Sarah_78 - I really enjoyed reading your long post above. Lots of good insight!

    Welcome back Hummingbird, hang in there. We are all still here.

    Happy Trick or Treating everyone - I'm going as a Chemo Patient! Gotta find some humor, right?

  • spades2525
    spades2525 Member Posts: 47
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    hummingbird, I know it’s such a hard choice to keep going forward on this incredibly difficult journey. Hope the weekly Taxol results in less side effects and helps get you through this.

    Just finished my last AC on Friday and definitely had one of the hardest weekends after treatment…with nausea and vomiting. Settling in for another few days struggle. Mindthief, hope you’re in your recovery week

    Can’t believe it’s November already. Gearing up for my switch to Taxol…

    Hang in there everyone ❤️

  • moderators
    moderators Posts: 8,285
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    Hi All,

    We're chiming in to let you know about our virtual meetups that may interest you or the people in your lives.

    Feel free to reach out to us with any questions!

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    REGISTER HERE for the Caregiver Meetup

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    Warmly,

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  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Hey Spades--congrats on getting through AC! For me, the Taxol started out as a great surprise with no odd feelings or side effects, which after the last AC, I was happy about. I only got 2 good days in that 2-week period. Today, there are new things to be on the lookout for, however; I'm achy. The onco nurse told me many women experience this on Taxol, kind of a feeling like you're coming down with the flu but it doesn't materialize. I started feeling it during the night and it's getting worse today. It should resolve soon, according to her. I do have a call into my care team about possible neuropathy in my thumbs and index fingers. They feel like they were burned or something. I'm doing a "wait and see" if it gets worse or even is neuropathy (I was baking yesterday so maybe it IS burned fingers?), but they said to call if I experienced it. The other really weird thing is an inconsistent pain near my incision sites, both in the armpit and the breast where the cancer was removed. I have no idea what that is about....barely have noticed those areas for over a month and now this right after starting the new drug. I'm thinking it must be related and hopefully is random leftover cancer cells dying????

    Hoping you get more than 2 good days this cycle and you and Mindthief graduate seamlessly to the Taxol!

  • racheldog
    racheldog Member Posts: 209
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    Hummingbird, may I ask about the Turkey Tail? I am on the verge of consulting a naturopathic oncologist. What exactly is the Turkey Tail (mushroom extract?) and does the naturopath consider DIM a good supplement for you?

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Hi Rachelog! My cancer center has a naturopathic oncologist on staff and I normally see a naturopath, so was very happy to get his advice. Yes, Turkey Tail is a mushroom and was recommended by three separate people; both my doctors and a nutritional yogi. It's an immune support supplement and the brand I get is HOST DEFENSE, but be forewarned that it is a little pricey. A one month supply is about $60. I take 3 capsules, twice a day. Mushrooms are proven anti-cancer agents in general so I'll plan to take these forever!

    From what I know of DIM, you need to ask your oncologist because it has a factor that regulates hormones. If you are ER/PR+ this could be an issue. The main thing they told me is to always ask about every supplement because anything that promotes cell growth is a no-no while undergoing chemo because the intent is to kill cells, not promote them. What I am currently taking in addition to the Turkey Tail: Vitamin D 5,000 units a day, Multivitamin, Vitamin B12 1000 mg, Zinc 30 mg. I stopped taking the Omega 3 because the capsules were too hard to swallow and did a full heavy metal detox prior to starting chemo. Once finished with infusions, I'll again start Vitamin C and NAC which I had to stop for the time being.

    Hope this helps!!

  • mindthief
    mindthief Member Posts: 62
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    How is everyone holding up? I have my first taxol treatment tomorrow - fingers crossed I don’t have a reaction and side effects are not too bad. My MO said neuropathy, fatigue and joint pain. Other than that, I got my genetics results this week, which were negative, so that’s a relief. I’m being scheduled in with the radiation oncologist soon to discuss what happens after chemo. Things are moving forward, day by day..