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Starting Chemo December 2021

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mugsy
mugsy Member Posts: 12

'Tis the Season!

I'm starting TC (Taxotere/Cytoxan) on December 1. I thought I'd start a thread for any other chemo-goers getting started or continuing in the month of December.

I was diagnosed with IDC in mid-September during a routine mammogram. I had a lumpectomy in mid-October. Being called "Stage 1a" in my cancer journey seems so deceptive, as my tumor was Grade 3, Luminal B, high Ki-67 score; all which led to oncotype score of 29 and indicated chemotherapy.

I had a port placed yesterday. I've ordered a DigniCap system to help with hair loss. My oncologist said they've had about 50% success rate with the DigniCap system. I asked if he meant it worked on 50% of the patients who tried it, or those who tried lost only 50% of their hair. "Yes," he replied with a grin. I'll give it a try. Anyone else trying this or any other cold capping method?

Wishing you total success on your chemo journey and few or no side effects!

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  • mugsy
    mugsy Member Posts: 12
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    Hello to anyone starting or continuing chemo in December!

    I had my first TC infusion yesterday. A few speed bumps, but it happened. I had orientation prior to infusion, and then the cold capping adds on an additional two hours. All in, I was at the center from 10 am to 7 pm.

    First issue, they couldn't get blood through the port, so I had an arm draw. No big deal.

    Second issue, I had a anaphylactic reaction to the Taxotere within 2 minutes. The nurse said this happens to about 10% of people, so we weren't totally unprepared. Still, kind of scary! I thought my head was going to explode. It didn't, and after Benadryl, steroids, Ativan and time to reset, we started again. Everything went swimmingly after.

    I am the second person to use the DigniCap Delta system at my center. The first person was a man. The nurses and I had a laugh riot with putting it on and commenting on everything. Like, "why the chin strap? In case I want to ride my motorcycle home after?" There are a few funny moments along the way. And I am more and more convinced that nurses should be elevated to a status beyond mere human. So amazing, they are.

    Now to hold tight these first few days to see what happens next. Starting Zofran today to stave off anticipated nausea.

    Would enjoy hearing from others if you come across this post. Wishing everyone every blessing and hope on their journey!!

  • jspringer4
    jspringer4 Member Posts: 12
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    I just got scheduled for my first infusion for 12/16, so I guess we’re the only two in the December Club?

    My original diagnosis was just DCIS and LCIS but then I tested positive for a BRCA2 mutation which put me on the BMX track. Then my surgical pathology showed that I actually had IDC in both breastswith tons of DCIS and LCIS throughout along with micromets in one sentinel node. Because of the BRCA2 everyone wants me to go ahead and do chemo just to be sure any cells that took a ride through my lymphatic system are taken care of.

    I’ll be doing 2 months of AC every other week followed by 3 months of taxol weekly. We decided to start 12/16 so that Christmas falls on an off week and I hopefully won’t be sick that weekend.

  • booklover12
    booklover12 Member Posts: 5
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    I'm starting TC next month so I hope it's ok if I lurk here. I'd like to get an idea of what I'm in for! I felt a lump in my left breast at the beginning of November and things moved quickly. I had a lumpectomy on 11/11 and was hoping for just radiation but my oncologist recommended TC and radiation. I'm getting a second opinion next Tuesday and then I'll have to decide what to do if the treatment plans are different. My husband and I just bought a place in Florida (where I was diagnosed and treated and where my sister lives) and were planning to spend the winter there with occasional visits north to visit the kids and grandkids.
    I've looked into cold capping and I've decided it's just too much to go through that and chemo too. This seems like a whole new world


  • mugsy
    mugsy Member Posts: 12
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    Hello Jspringer - thanks for joining in! It might just be us two or three. Yep! LOL Glad you are able to start your chemo on the 16th and then have a nice break for Christmas. Sounds like your journey started out looking quite simple and then as the pieces started coming together, more to it! Those pesky grade 3s. Plus you have the gene component. So we are having the full meal deal. :-) Wishing you smooth sailing and I'll be here for support!

    Hi Booklover12 - definitely lurk away. That's all I've done the last couple of months. I think this is my 4th post! But I think it'll be great to connect with a few people who are going through similar at same time. It'll be interesting to hear about your second opinion! For my TC regimen, it's 4 cycles every 3 weeks. 3 months total. So if yours is similar, you might be able to travel during the 3rd week before next cycle? Depending on how it goes. The cold capping was interesting. No guarantees there so I can see why you would give it a miss. Take good care let us know how things are going.


  • sarahe_butcher
    sarahe_butcher Member Posts: 7
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    Hi, I'm popping in here too as well. I started my first infusion on Tuesday, 11/30. I'm doing 6 cycles of Taxotere and Carboplatin every 3 weeks with Herceptin in the mix. My infusion day was pretty uneventful and really am just hitting the rough days (end of 3 and all day 4) last night and today. So far, exhaustion, taste changes, and some mild nausea seem to be the headliners. Little meals are my friend! Hang in there everyone!! I'm trying my hand at a cold cap my sister was able to get from Amazon. It seems to be more self sufficient, but that leaves a lot for user error!

  • FloridaFarkle
    FloridaFarkle Member Posts: 1
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    Begruggingly starting Chemo 12/13/21.

  • hippmark
    hippmark Member Posts: 92
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    I'm here too! I will be starting chemo end of January, so I'm lurking away! I am also interested in Dignicap, although I know it makes it more challenging. Freezer burn! I will need to switch Oncologists because my Group does not offer it (and I only want Digincap). I am in Florida too. I am hoping for Taxol every week for 3 months instead of Taxotere as I have read (?) that Digincap works better with Taxol? Mugsy, you made me laugh (which I need) about the motorcycle helmet reference. I guess it's to make it extra tight! Surgery for me is on the 23rd. This group gives me strength to keep moving forward!

  • Morgana00
    Morgana00 Member Posts: 9
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    Hi Everyone,

    I'll be starting Dec 7th. 4 rounds of TC, 1 every three weeks. I turned 40 in June, had my first mammogram in July, and by August was diagnosed with IDC. I had a lumpectomy in September and had a 1.6cm and 0.4cm tumor removed, no lymph node involvement/clear margins. In October, I decided to get a second opinion on the adjuvant treatments which led to the decision to get chemotherapy. I fell in an intermediate range with my Oncotype RS. One MO relied solely on it and did not recommend chemo while the other included the clinical risk factors(age, tumor grade and size) with the RS and recommended the 4 rounds of TC in addition to the radiation and hormone therapy. I didn't really want to choose the chemo route, but decided it was best to reduce risk of recurrence. So, after completing oocyte retrieval in November, I'm here to join the December group.

    My mom, 68, was diagnosed with IDC in Feb of this year and had surgery in April. She did not go the chemo route and instead had radiation and is taking AIs. I, too, have been reading past threads to see what to expect. I am slightly terrified but I'm glad I found this site to share experiences.

  • jspringer4
    jspringer4 Member Posts: 12
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    Morgana - I’m kind of in the same boat as you. My MO said we could do oncotype testing but she would recommend chemo no matter what my score was so I didn’t even bother. I’m BRCA2 positive and had micromets, so I feel a bit more secure about recurrence doing chemo.

  • mugsy
    mugsy Member Posts: 12
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    Mommatoo3 - hope your rougher days are coming to an end. I agree with small meals. I've kept nausea at bay with Zofran. Every eight hours around the clock. Being proactive with everything seems to be helping. And lots of H20. Glad you are trying the cold capping too. It's worth a try? Fingers crossed for us both on the hair front.

    FloridaFark - I hear you on the begrudgingly. I had to do some reframing and attitude adjusting/visualization. I've "chosen my fighter" and will work/embrace all that comes with it. It kind of helps? Anyway, here for support as needed.

    Hippmark - Ha! You will see the funny in the process if you decide to do the DigniCap. I didn't find the brain freeze too bad. Not even like an ice cream headache. Hope your upcoming surgery goes really well for you.

    Morgana - I'm a week ahead of you on the same TC regimen. It feels good to get it started after so much anticipation. I kind of feel like I have the flu, to be honest. It hasn't been terrible. Every side effect has a remedy. I've had some bone pain from the Neulasta, it is kind of strange (it moves around my body) but haven't found it unbearable and treatable with Tylenol. I hope we will all get maximum benefits from this treatment, and any (hopefully mild) side effects will be worth it. I am rooting for you!

  • sun-shine
    sun-shine Member Posts: 30
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    Hello everybody,

    I was diagnosed in September and will start my first chemo treatment on 12/10/2021, 4 round of TC. I am scared. Hope I could go through this process without too much side effects. The place where I will get my treatment does not have DigniCap, so I just placed an order for Penguin cold caps. Hope I will be able to keep some of my hairs. I also purchased a pair of cold gloves and socks with extra gel packs from Amazon for preventing neuropathy.

    I've been searching and learning on this website for a while since my diagnosis. I am glad we can share our experience here. May God bless us!

  • moderators
    moderators Posts: 7,913
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    Sun-Shine, we welcome you warmly.

    If anyone would like to join our virtual meetup on Tuesdays, 1-2ET for people going through treatment, please register here:

    Going Through Treatment meetup

  • sun-shine
    sun-shine Member Posts: 30
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    Thanks, I have registered the meetup group.

  • Morgana00
    Morgana00 Member Posts: 9
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    Hi all! I hope my first update finds you all in a good place and good spirits.

    I had my first infusion yesterday and all went well. I had no immediate reactions to the medications and got a lot of knitting done. I am not cold capping, the clinic I am going to doesn't offer it but you can bring a support person to do it for you. I decided to forgo that and hope that the hair loss isn't too bothersome. I've been having fun with my hair - dying crazy colors and trying new short hair cuts while I can. We did get a visit from a therapy dog which was nice. In the evening and into today, I seem cycle back and forth between feeling "normal" and just mildly fatigued. It's been more like a "haven't got enough sleep" feeling, even though I probably got the best sleep I have had in awhile last night. Mugsy - you were spot on about getting past the anticipation and getting started, it's a relief in a way.

    Premeds included a long term anti nausea (aloxi) so I haven't had any nausea yet. I"m hoping it's not too bad once this wears off. I'm aiming to be able to work thru the treatments and the fatigue and nausea are my biggest concerns with that.

    Good luck to those of you about to have your first treatments and good vibes to all.

  • JBMNiasmom
    JBMNiasmom Member Posts: 1
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    Hello to everyone

    I was just recently diagnosed. It just seems like an overwhelming wave of exams, screens and scans. I am having a port for my infusions. I really would like to know more about cold capping. I already have alopecia and have work very hard with my dermatologist to grow my hair. I still hair some bald spots but for the last year I have worn my own hair no wig, extensions etc. I really don’t want to wear a wig. Has any had success with the cold cap

  • mugsy
    mugsy Member Posts: 12
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    Hi all - I am in day 10 of my first TC chemo. All in all, not terrible. Day 3 & 4 were most challenging with bone aches and diarrhea. But both I was able to control with tylenol and Imodium. I did wake up on Day 5 with the beginning of THRUSH on my tongue. Ugh, what?? ICK! Did not expect anything like that, and with a prescription for magic mouthwash (used just a couple of times) it cleared right away. But I will be well prepared next round. Drinking lots of water and feeling normal these past few days.

    Sun-shine - Today is your first chemo. I hope it went really well for you. Know you will be glad to have this first one out of the way. How did you do with the Penguin caps?

    Morgana - How are you feeling on Day 3 or so? I hope you've been able to work and keep the fatigue and any nausea at bay. Love that your center had a therapy dog!

    JBM - Welcome, and I understand the overwhelming feelings upon first being diagnosed. Hang in there! One day at a time. There is an entire thread dedicated to cold capping. I'll try to send a link to it after this post. I am trying DigniCap. Started Dec 1 with my first infusion of TC chemo. I'll definitely post here about hair progress (or regress, failure). So far, so good and I'm cautiously optimistic.

    Sending everyone healing thoughts!! (And warm thoughts to those of us in the path of the snow!)


  • mugsy
    mugsy Member Posts: 12
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    JBM - Here is the link to the cold capping thread to read more:

    https://community.breastcancer.org/forum/6/topics/...

  • booklover12
    booklover12 Member Posts: 5
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    I got a second opinion on Tuesday and now I'm more uncertain than ever! She recommended that I have the Oncotype test and if my score was below 26 she felt comfortable in not recommending chemo. I talked to my original oncologist and he recommends chemo no matter what the score is. I asked him to request the test for me but it takes about two weeks (or more!) to get the results. I just want everything settled and I want a plan in place!

    I'm leaning toward chemo- somehow I feel like it would be better to make sure everything is gone. I'm not sure exactly how to phrase this but I somehow think because I'm older (66) doctors tend not to be as aggressive. Has anyone else thought this

  • sun-shine
    sun-shine Member Posts: 30
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    Hello everybody,

    Mugsy - Thanks for asking! I had my first infusion yesterday and it went well. No immediate reactions to the medications. I took premeds followed doctor's instruction so I haven't had any nausea yet. Just feel slightly dizziness and tired yesterday and today. Perhap Cold Cap treatment also had something to do with it. The cold cap process was tedious, lasted about 10 hours in total. I also tried to keep my hands and feet cold using cold gloves and socks, keep my mouth and tongue cold with ice tubes during the treatment.

    My Oncotype DX score is 28 just in case someone is interested to know. I am 59 years old.

    JBMNiasmon - regarding cold caps, I learnt a lots from this website. Seems they worked for many people. You can search the forum " Topic: Cold Caps Users Past and Present, to Save Hair" on this website to get more information.

    Good luck to everyone! All the best!

  • Morgana00
    Morgana00 Member Posts: 9
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    Hello, I hope this finds everyone well and safe from the storms that passed thru the US this weekend. I'm on day 5 after my infusion on Tuesday. The first couple of days felt like I had no sleep, exhausted and spaced out.

    Mugsy- Days 3-4 were the worst. I was able to work fine the first two days after the infusion but had to call off on day 3. I woke up with extreme fatigue that lasted most of the day. By the afternoon I had some energy to move around. Day 4 I felt better when I woke up but still slept until the afternoon. I have been worried about developing thrush and have been rinsing with mouthwash regularly. I'm glad to hear it cleared up quick for you.

    I have not experienced any nausea(knock on wood), just an occasional sour stomach. I think I read in another thread how someone thought cheese was the only thing that tasted good, and well I have to agree. I ate an entire box of Mac n cheese last night, lol. Cold watermelon has been my go to snack. I burnt my tongue(yay, neuropathy) and the cold fruit soothes it with the added bonus of being hydrating. The Neulasta pain has been the most troublesome issue for me. I've taken Claritin daily but it's still really bad. It seems to flare up more at night after I've been sitting awhile. I've tried to make it a point to get up and move around often since that seems to make it better. I told my husband to make me go for a daily walk no matter how much I protest and having two Jack Russell terriers helps motivate me to walk too.

    I got a Lupron shot the day of my infusion and have been experiencing some hot flashes. if anyone has any tips for those, I'd appreciate them!

    Take care everyone!

  • Kayce234
    Kayce234 Member Posts: 87
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    Hi all. Joining the group with a Dec 21st start for t/c . Its my hubbies bday and he gets to spend it watching me get chemo! Got my port today-i have horrible veins. So far its very uncomfortable but aupposed to be better in 48hrs so fingers crossed. Thus us my 2nd rodeo. Had IDC first time around with radiation, oncologist was only 16so no chemo, did tamoxifen then the post menopause drugs....didn't lije any of them. Have Triple negative this time around with no link to first cancer. Had mastectomy with Diep reconstruction on 10/21.

    Anyone else get a porr?

  • jspringer4
    jspringer4 Member Posts: 12
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    Kayce - my port was awful for a good two weeks but after the swelling went down and my body finally accepted it was here to stay, the pain went away. Mine is in my arm and it helped to put a small pillow under my elbow so there wasn’t any pressure on the port site.

  • ajbclan
    ajbclan Member Posts: 396
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    Hi Ladies-

    I wanted to jump in and give you all support and encouragement, as I remember it helped me during this time. 5 years ago, I was awaiting my last chemo treatment. I remember seeing women 5 plus years out and it felt like a lifetime that would take forever to reach. Here I am, doing "well"- in quotes as you all know there's so much "unknown". While I have no evidence of disease, that idea will always lurk in my mind. The good news is I was recently asked what type of cancer I had, and I couldn't remember right away, lol.

    This time period sucks- no way around it. One day at a time and lean on each other. There are still about 5 from my "chemo group" that try and stay connected periodically through the board.

    Wishing you all well, minimal side effects, and one day posting on a board 5 years out encouraging others (or maybe it just won't exist any longer- wouldn't that be fabulous).

  • Kayce234
    Kayce234 Member Posts: 87
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    jspringer. Thank you. My pain is gone but its so uncomfortable and tight. I have read it can take 10-14 days to settle down so happy to hear yours did. Mine is in my chest and thru my jugular.

  • Kayce234
    Kayce234 Member Posts: 87
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    Hi all

    Port is feeling so much better and starting my first TC dose Tuesday. Feeling nervous, been trying to rest and relax this weekend, cleaned my office as I'm healed enough from the DEIP Flap reconstruction to go back to my desk from the recliner I've been working from. Other than that just getting Christmas decorations up and basically resting, resting and hydrating. Kind of nervous for first dose, so close to Christmas I'm afraid I will be miserable for Christmas Eve and Day.

  • Morgana00
    Morgana00 Member Posts: 9
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    hi everyone! I thought I'd pop in for a mid cycle update. Around day 9 I started feeling mostly normal. There is some lingering fatigue and some days I'm more tired than others. Taking a daily walk and light exercise/yoga definitely helps with the fatigue. Yesterday, day 12, is when I noticed my hair starting to fall out, not in clumps but just a lot more shedding than normal. Even though I expected it, it was still a bit of a shock. I guess I'll cut it short tonight to ease the transition. My husband is far too excited to bring out his clippers- I actually caught him watching YouTube videos on how to do different short cuts, lol!

    Kayce- It took about a week and a half for my port to feel somewhat comfortable and now I don't even notice it. It is in my chest on the left side. I regularly sleep on that side and even once woke up on my stomach. Good luck on your first infusion tomorrow. I got my first infusion on a Tuesday and Friday was rough in the morning but got better in the afternoon and Saturday was tolerable, so I hope Christmas will be okay for you. Hydrate, Hydrate, Hydrate!

    Mugsy- I think you're due for round two tomorrow as well, good luck!

    abjclan- thank you for popping in and the encouraging words. It is truly appreciated to hear from those who have gone through this.


    I hope everyone has a wonderful holiday despite the circumstances we find ourselves in. take care!

  • Kayce234
    Kayce234 Member Posts: 87
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    image

    1 down 3 to go. Today went as well as I could have expected. Went in prepared with my wonder woman socks, faith bracelet, earrings and heart necklace - all special gifts. Chronicling each visit to see the changes. Whole day felt like spa treatment. Had leather heated recliner, accupuncture in my ears and a lunch cart came around. 1 bag of saline and 2 bags of chemo. Whole day took form 7:30 - 3pm after bloodwork, dr appt and chemo. Zero effects so far, nothing while getting infusions and feel good now. Enjoy the moments while I can but prepared for the floor to fall out in a day or two. Planning on cutting my hair tomorrow as many has said its best to have it shorter as it will cause fewer issues when it starts to fall out. Going to try and do it myself since I cut my family's hair - and figure if it's bad oh well, it's falling out any way :)

  • Blinx
    Blinx Member Posts: 82
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    Hi there -- Just got my treatment start date of Tues, Dec 28. My MO initially thought I was triple negative, but finally received the HER2 results of the biopsy today -- positive. I'll meet with her in 2 days to discuss how this completely changes my planned treatment. My biopsy was on Nov 18, so no idea why this bit of info took SO long when the ER/PR results were in many weeks ago, but here we are.

    Had my power port inserted today. Wow, the process was nothing like I expected! Took 4.5 hours with all the waiting before and after. Silly me, I was thinking it was done in a surgeon's office (like a biopsy), but it was in the hospital's cath lab. I had the twilight drugs but don't think I felt the effects of them. Feels very weird now with this pulling sensation up my neck. Worst part of the procedure was when they taped my "bad" breast down to keep it out of the way. The skin on that side is always very sensitive and removing the tape was a bit painful. Glad that's all out of the way.

  • mugsy
    mugsy Member Posts: 12
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    Hi!

    I had chemo 2 of 4 yesterday. I had another "reaction" to the Taxotere, so we switched to Taxol. We will keep the "C" in the TC chemo, just switching up the T since the taxotere didn't like me. Everything else went well, with the cold cap and the day overall. Hair seems to be hanging in there, have some shedding but I usually do normally. (I'm 51 and perimenopausal, take thyroid, etc., so hair has been thinning over the last few years a bit). The cap didn't feel as cold this time, not sure if that means anything. Also, the nurse said I wouldn't likely see hair fall out (eyebrows, lashes, etc.) until next round. So we'll see how head hair is between rounds 3 and 4. When I have the icky feeling on days 2-6 or so, I do think, "who cares about my hair?" And washing it is a true anxiety-fest. But am hanging in there with it.

    Morgana - thanks for remembering I was starting round 2! Did your bone pain get better? I agree with you about walking and moving, it helps (dogs help too). Tylenol helped me and I was up in the middle of the night to take it. Also agree about cheese tasting wonderful, and I'm loving sweets. I'm not losing weight. If I lose a little bit the first week, I'm deffo gaining it back in weeks 2-3. I'm glad your hubby is ready with the clippers when the time comes!

    Kayce - so happy to hear your first infusion went so well! Love the Wonder Woman socks and special jewelry. Glad the port is treating you better now. I truly hope you will feel well enough to enjoy Christmas!

    Blinx - It took me a couple of weeks to adjust to the port. The pulling sensation went away and I stopped "noticing" it and feeling it. It's an adjustment, for sure. It's probably horrible for me to admit that it was worse than my lumpectomy/node removal?! Not sure why, just the nerves on my neck/chest and recovery for me (and even scar) was more with the port. It happens! But now I'm glad to have it. Did you have a FISH test for the HER? The waiting and anticipating is the hardest part, I think. Wishing you a great start on Dec. 28.

    ajbclan - Thank you for the support! How nice to share your perspective from your vantage point now. I love the idea that you had a hard time recalling your exact cancer. Hope that happens for all of us...that this terrific challenge will one day be a most distant memory. Thank you for the much needed hope!

    Wishing everyone a warm & wonderful Christmas and best wishes for the coming new year.

  • Blinx
    Blinx Member Posts: 82
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    Hi Mugsy -- Finally got the FISH on the HER2 for the 3rd biopsy site and it threw a wrench into the whole chemo plan! Have to go back and get authorization from insurance for a different regimen, and it's delayed my start a day, until Wed. Dec. 29. Result: Right breast and left axillary are TNBC; right axillary is ER-/PR-/HER2+. So as near as I can figure out, I'll be getting AC every 2 weeks for 8 weeks. Then taxotere and ____? once a week for 12 weeks (but this might not be correct). Hoping when I start that I'll get a printed-out regimen/schedule.

    I DO agree that the port pain is worse than my lumpectomy. Only positive - no drains!

    Kayce -- Spa treatment?? I know that my place doesn't provide lunch - just crackers/juice/soda. Have my fingers crossed that they'll have a heated recliner!