Starting Chemo in February 2024? Gather here for support!
Join and share here to get and give support if you're scheduled to begin chemotherapy this month. Please share your diagnosis, planned chemo regimen and start date, so we can all support you as you navigate treatment — we're all here for you!
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I’m new to all the terminology. Triple negative IDC, Grade 3, Stage IIA. Starting chemo 02/21.
Paclitaxel/Carboplatin/Keytruda and then the other one. I think it’s nicknamed the red devil and Keytruda.
Get my port tomorrow.
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I just wanted to send good thoughts and encouragement your way for your surgery tomorrow. I found icing it helped the area feel better. I had my 2nd out of 8 treatments today (and yes, one of my drugs is the red devil).
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@kyrexvstuesday and @mwitz22, a warm welcome to both of you, and thank you for joining our February chemo group. @mwitz22, thank you also for your tip!
@kyrexvstuesday, we know the terminology can be really challenging, especially at the beginning, so here's a link that might provide some clarity: Understanding your pathology report
Also, here is a list of abbreviations seen throughout the Breastcancer.org Community discussion forums: Guide to common abbreviations.
We hope this is helpful! Please, feel free to share, ask questions, or simply connect with others. And keep us updated on how you are both doing. We're here for you!
The Mods
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Just want to check in. My triple negative breast cancer has returned after 7 years, same breast (right), almost same spot — was really hoping I would be ok after passing the 5 year mark. Tumour measures about 2cm on the MRI with "possible involvement of the pectoralis". Today is my PET with my first appointment with a new oncologist (we've moved countries in the interim) on Monday (19th). Last time I had a lumpectomy first followed by chemo (AC-T) then radiation. My new surgeon wants to do chemo first this time to confirm it is working (I'm assuming I can't do AC again), and then a mastectomy. Port goes in on the 26th with chemo tentatively starting on Feb 27th, depending outcome of PET and consultation with Onco.
Stressing about PET results since this is a recurrence.
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So sorry for this news, @dawn68. This is very disheartening. How have you been managing the stress of waiting for the results so far?
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first infusion was on Friday. I’m doing neoadjuvent AC first. Wasn’t as bad as I thought but it still kicked my butt. Feeling fatigued and nauseous. Taking the anti-nausea meds on schedule and was able to deal with the constipation today. Focusing on resting , walking when I can and staying hydrated. Thoughts and prayers to everyone else starting this month too.
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My MRI was last week and they found a suspicious area of concern. Same breast, OG tumor is at 12:00, the new area is at 3:00. Too far down to do a biopsy, so I get another ultrasound Tuesday afternoon. I was supposed to start neoadjuvant this Wednesday and now I’m wondering if that will change. Scared it’s spreading. Scared of what will happen. I’m just completely freaked out right now.
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@kyrexvstuesday the waiting for tests results is the worst! I was in the same state of mind last week, terrified it had spread elsewhere. Unfortunately, no wisdom on how to manage the fear, I just tried to keep myself as busy as possible until I received the results — oh & a lot of praying : ).
I've also been diagnosed with Triple negative IDC, Grade 3, Stage IIA. Met with my new oncologist on Monday. Port goes in on the 26th, starting Chemo on the 28th. Three week cycle - 1 week Paclitaxel/Carboplatin/Keytruda, 2 weeks Paclitaxel/Carboplatin then repeat for 12 weeks, then surgery (opting for mastectomy this time, first time I did a lumpectomy), then Keytruda every 3 weeks for a year.
@purpletiger sounds like you are managing AC okay. I did AC the first time around on a two week schedule. I was down for the count for about 3 days and pretty rough the first week but 2nd week gave time to recover before next infusion.
Praying for strength — emotionally & physically — for us all to push through these next few months.
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Hello. Stage 2B, Grade 2, IDC here. (Did I do all the letters right?!) Starting chemo Monday with ddAC-T. Just exhausted from being so scared. I found a lump - scary. Turns out to be bcancer - scary. All the tests to check for spread - terrifying. Second guessing every little ache and pain - scary. Not knowing what to expect from chemo - scary.
Now, waiting for chemo to start, I’m just so ready to start to fight back.
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Welcome, @jmfws10. We're so sorry you find yourself here, we know this overwhelming and absolutely terrifying. But you are not alone! There are a lot of people in the same boat right here in this forum, and so much info to arm yourself with everything you need to know.
Also, we want to let you know we offer very supportive, moderated Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.
We’re here for you,
The Mods
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I’m starting chemo tomorrow 26/2. I have stage 11B. Grade 3 tumor 28mm. er pos HER-negative K67 @ > 40%. Oncotype dx scored 41. I’ve had my surgery x 2.breast conserving although I was loud about mastectomy please but advised to go this way 😳 I’ve debated the cold capping but now think I’ll just go with the flow. I’ve realized I will do it tough as I’ve had long thick hair all my life. I’m 64. I’m scared but have accepted this a life saving. I’ll need Radiotherapy too after chemo. Plus…. I’m an RN and used to work in Paediatric Oncology 25 years ago. I know too much of the old chemo regimes so I’ve worked to stay in the moment. It’s hard.
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Well, its been an eventful February. I had my first infusion of AC. Not too much nausea although my taste buds changed a bit.
A few days later I had a port put in. Yesterday I had bone aches and a mild fever. I'm now in the hospital in isolation because my white blood cell count is down to 0.8. The fever has gone and they are giving me antibiotics. GOing to have to stay here for a few days for observation.
One thing I didn't know was to use an oral thermometer to measure my temperature instead of an infrared one. The infrared one showed I didn't have a fever but the oral one did!
If you feel any symptoms at all, call your medical team. I was thankful for the nurse who walked me through everything I needed to check. I'm supposed to get my 2nd infusion on Friday but looks like I may not be able to do it until my white blood cell count goes up.
Something I find very helpful to do is I take the reports from mychart and ask ChatGPT to explain it to me like I'm in the 5th grade. This has helped me to understand the results and to ask my doctors better questions.
Hang in there and stay strong ladies!2 -
Sending strength to all of you.
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@purpletiger, using ChatGPT to explain your reports in MyChart in an accessible is actually brilliant, haha. I love this idea.
@sheila64_, what kind of emotional support have you been able to lean on? It's daunting, especially in the beginning. One thing I would say though is that treatment for breast cancer has come a long ways in the past 25 years. Especially since 2015, there has been lots of progress. Treatment isn't necessarily easy. It's a very individual experience. Some folks experience little to no side effects, while others experience some or a lot. It can be helpful to speak to others who are similarly going through active treatment, like you are doing in this thread. We have a free weekly meet-up over Zoom that we host on Tuesdays at 1pm EST and Thursdays at 6pm EST. Sometimes it can be nice to add facial expression, body language and intonations when connecting over the difficulties of going through active treatment. You can come as frequently or as infrequently as you want to group. If you want to give it a try, you can register here:
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So many friends and family support.
I'm grateful too of all these women sharing stories and tips and shining a light into the future post acute treatments.
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Hi all,
I had my port surgery Monday & started chemo yesterday (Feb 28), I got the schedule wrong, it is a Three week cycle - 1 week Paclitaxel/Carboplatin/Keytruda, 2 weeks just Paclitaxel then repeat cycle for 12 weeks. As I had neuropathy the first time with Abraxane (which is supposed to be lower risk than Paclitaxel) so I am nervous about neuropathy coming back or getting worse taking it for 12 weeks. I am now living in Australia (first time I was in Singapore) and they don't do Abraxane here as an alternative (perhaps they might if I can't handle Paclitaxel.. let's see). So far Carbo is soooo much easier than AC. Just really fatigued, a few tummy issues, and a general feeling of "ickiness" on the first day after chemo, which is usually the worst for me.
@kyrexvstuesday How are you doing? Did you get your test results back yet? Do they also do PET scans there if they can't tell via ultrasound? Praying for a positive outcome.
@purpletiger Just saw you are from Toronto. I am also from there, living across the world now. So sorry to hear about your AC experience, it is a rough one but really effective — you're getting the best treatment. Do they give Neulasta shots for low WBC count? I didn't need it after my first dose but did for the other 3. I also love your idea to use ChatGPT : )
@jmfws10 welcome ! You are also starting the AC-T regime, do you know when you start yet? If you've already started let us know how it is going. Nausea was my biggest issue with AC but that was 7 years ago and I'm sure they new after care med protocols by now.
@sheila64_ welcome! How are you feeling after your first infusion? What chemo are you on? Sooo sorry to hear about your hair, that must be distressing. I never really liked my hair — fine, straight, & thin — so was so excited when everyone said it will grow back thicker & have some curl/wave. It didn't : (. Grew back just as fine, straight, & thin as ever … so my one chemo positive never eventuated : ).
Wishing us all strength to get through the side effects of the next week… one step closer.
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Chemo is TC so every three weeks. Today is the worst so far but I’m putting one foot in front of he other and reminding myself of all the things I am going to do when I finish my treatments. yep I always complained about my thick hair so I’ll wonder what it will come back like🤪very hot here in Australia NSW today 40 degrees by just after midday🔥🔥
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@sheila64_ So sorry to hear TC is a bit rough this first week. Good you have 2 weeks to recover ! 40 degrees! wow, hope you have aircon & are resting indoors. I am up in the Scenic Rim QLD. Not as hot here as we are in a rainforest but still getting close to 30 degrees today. We were down in the New England High Country (Waterfall Way) last week for a pre-chemo holiday and it was 33-36 degrees on the last few days. Waterholes were busy 😎
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Thank you for checking in. I had my first AC chemo session Monday. They have me in so many nausea meds I barely got a twinge of that. I have been incredibly lethargic and my brain has been so fuzzy. I feel as through today is the first day I have emerged from a “chemo coma.”
With the dose dense schedule my oncologist has given me a choice when it’s time to move to the Taxol portion. Continue with dose dense 4, two week sessions, or move to weekly small doses for 12 weeks.
i want to do the dose dense and be done with this portion of the treatment, but am wondering what others experience has been?
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@jmfws10 Sounds about right, I remember 3 days of "chemo coma" after each AC, maybe add a day or two as it got to the last 2 sessions & my WBC dropped. Felt better the second week but still extreme fatigue on AC (likely due to the low WBC). After AC I did the 12 weekly small dose of Abraxane (similar to Taxol). It was really manageable and the only side effect was mild fatigue (not as bad as with AC) and neuropathy in my feet & hands. The neuropathy was manageable and I eventually recovered from it post chemo with only mild symptoms now. Neuropathy might be the biggest thing to watch out for if you do dose dense. If it happens usually they lower the dose anyway.
Two days after my first chemo/immuno session and I actually feel fine, no nausea (though they have given me good meds), just fatigue and a mild feeling of "ick". Carbo isn't nearly as rough as AC but I am hoping it will work just as well on attacking this tumour. Apparently I should know after 4 weeks if it is shrinking.
How is everyone else doing?
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@dawn68 I got a Lapelga shot the day after but it didn’t seem to work. My oncologist said it’s likely the dosage was too high for me. I’m on antibiotics for a few,one days which means no infusions for me. So how I’m waiting to get scheduled back in, and get this treatment back on track.
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@purpletiger just checking in to see how you are going. Did your WBC go back up so you can get back on schedule?
How is everyone else managing with their infusions and side effects?
I've just received my second one yesterday which was only the Paciltaxol. Side effects from the first one (carbo, pacil, keytruda) were ok for first 2 days (probably the dexmethsone I was prescribed for 2 days after chemo) but then fatigue hit really bad and some mild but very annoying nausea. I slept for 12 hours a night for 2 days then came out of it on Tuesday just in time to go back in for another infusion on Wed 😊.
Post infusions keeping busy helps with the side effects. I am trying to keep up my daily routine, school runs, etc. We live on acreage so I am doing stuff in the garden everyday … some days slower than others. What is everyone else doing to keep busy? Still working? I think I could work through this chemo (stopped working when we moved a year ago) but I just couldn't do it when I was on AC & had to take time off... I admire anyone that can as I know many do
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Day 10 post first cycle of TC. Feeling a little for energy now. Cut my hair short yesterday in wait for the fall out to happen. strange feeling but best to be prepared as I have such thick hair. I try to walk everyday some days 1.5 kilometres today 3.5 kilometres
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@sheila64_ I also cut my hair short 😊. With AC I was told it would fall out at exactly 2 weeks.. and it did. With Carbo, I am not sure when it will fall out as seems like it varies. Anyway I have my lovely silk scarfs from the first time ready to go.
This week with one chemo has been a bit better, week 3 infusion tomorrow….
@purpletiger @kyrexvstuesday @jmfws10 how are you ladies doing?
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@dawn68 @sheila64_ glad to hear that you are both moving through this with determination. I had round two of AC yesterday. Less anxiety knowing what to expect, same side effects so far. I had been hoping to do this without a port but was told I’ll need one before my next treatment. Don’t know why I am so mentally against it. I guess because it’s just a physical reminder that I am sick. There are days I can fool myself into forgetting, you know?
Along those lines, I was told to expect my hair to fall out this week. Tried to make looking for wigs a fun activity to do with my 9-year old.
Sending everyone strength!
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@jmfws10 totally understand where you are coming from. First time I also didn't want a port but due to an issue with my veins I ending up having to get one before my second infusion. In all honesty it did make it a lot easier. Great to hear you are coping ok with AC. All the best in finding an awesome wig.
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@dawn68 I was able to do another round of AC but nausea and fatigue hit me hard. Been trying to get back to my regular routine but it’s difficult. Lots of hair loss too. I’m doing cold cap to prevent permanent loss and enjoying some new wigs. But still… hair loss is hard. My nails are also turning a little black. I have nail strengthened and cuticle oil now daily.
I am working through this and keeping my situation very private. I work from home so it’s manageable but some days are tough. I’m going to try to slowly eat more and do my daily walks. Taking one day at a time.
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@jmfws10 I used my port for the first time this infusion and it was good! So much better than my arm. I have tiny veins so that was the one good thing about the infusion day.
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@purpletiger great news that you are happy with the port @jmfws10 how did you go with yours?
This week (Wed) will be my 4th infusion, 2nd round of the 2 chemo/1 immune infusions so expecting it to be a bit of a rougher week coming up. So far my only real symptoms have been fatigue a few days a week and some minor neuropathy which I think is left over from last time and flaring up again. My hair finally started coming out in clumps yesterday so I had hubby shave it really short … not completely bald but it is patchy so I've dug out my stash of silk scarfs.
@jmfws10 did you you and your 9 year old find a nice wig?😊
How is everyone else doing?
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hey all just finished 2nd chemo cycle TC. Hair all but gone now a few patches left on top bit like a Mohawk and a few dark brown patches reminiscent of my younger days. try to walk everyday as I know this is helpful for recovery during chemo.
I'm much better in the mornings but after my self administered injection I get very bad bone pain as it’s intended to boost good cells in the bone marrow.
wore a floral wrap cap to chemo as I’ve been wearing hats in the small town I live but wanted to try the different look. Don’t think I can do wigs but maybe later.
I’ve booked some time in Sydney at our regular May June Vivid light festival. The city light up the Opera house harbour bridge and other landmarks and buildings every night for the month beautiful and with all the technology it gets better every year we live about 300 miles from Sydney on the other side of the blue mountains
how’s everyone else?
saw your post @dawn68 must be hard second time round. Love how you check in with all.
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