Regimens, side effects, and support from others going through chemo.
Posted on: Feb 18, 2019 06:16PM - edited May 16, 2019 10:09AM by Fallschurchgirl
Just found out on Valentine's Day that I need chemo due to my oncatype being 30
Will do TC x 4. Start March 4. Not the path I was expecting after finding my tumor in routine mammogram. 5 mm. Tiny and early. Everything looked good until now.
Learning to roll with the punches.
Betterdazeahead had the great idea to make a list of our treatment plan and chemo start date. Let me know if I left you out.
Fallschurchgirl TC March 4
Lamb22 THP March 6
LizzieAG. AC + T. March 15
Betterdaze. AC +T. March 14
Diana bee. Taxol & HP. March 18
Pokyspider. FEC Docetaxel. March 20
UFCKnights (Mom) AC + T March 11
BatyaD. Taxol/Herceptin. March 11
Umbreakable TC x 4.March 1
Sugarcatcus TC x 4. March 4
Debra TC x 4 April 2
Shelia77 TC x 4 March 11
Dawmar AC March 13
Chickeywicky Taxol/Herceptin March 19
Ilovermont TC x4 April 3
Solo broker AC + T March 4
Knmtwins AC + T March 27
Kamboca AC + T March 15
farfalla6 AC + T March 28
sparkle4 AC + T March 21
PJ mask AC + T March 22
Hope0813 TC March 2
KVZ TC March 20
Ghcpd TC March 25
Grateful grandma TC x4 March 27
Marylin TC x4 April 8
Adhoney TCHP x 6March 13
Thinking of you all.
Posts 1 - 30 (491 total)
Feb 19, 2019 04:56PM LizzieAG wrote:
New here, just joined today. I will be starting chemo March 14th, ATC. Diagnosed January 17, masectomy Fab 1st, all went very fast. Stage 1 but grade 3, ER+ but not super positive and original biopsy even lower so treating aggressively as if at least part triple negative. High oncotype. Chemo is a must here... glad to have this group of others going through the ams
Feb 19, 2019 11:42PM Moderators wrote:
Welcome, LizzieAG! We're so glad you've found our community, and hope you find it to be a source of support and encouragement as you begin this next phase. Best of luck on the start of your chemo, we're all here for you!
Feb 20, 2019 03:07PM betterdazeahead wrote:
Hi Everyone! I am so happy to see this group was started! As I am feeling the anticipation building of March arriving and chemo starting.
LizzyAG Looks like you and I start chemo the same day.
I had my double mastectomy on Jan 31st and things have been a whirlwind since. My staging changed when they got in there. I am stage 2 with 4 tumors all are ILC, grade 2, ER+ PR+ HER2- and when they got in there they found my entire left breast was filled with LCIS. They removed 2 lymph nodes - 1 was positive.
I start my chemo March 14th AC+T (4 rounds of AC and then 12 weeks weekly of Taxol) I get a break for a month before starting 6 weeks of radiation.
Feb 20, 2019 06:19PM LizzieAG wrote:
Hi Betterdazeahead, sorry to meet you here but glad to find people going through all this at the same time!
My chemo ACT will actually begin Friday March 15 since going to get the port in the day before. I am also starting to get super nervous but also glad to have a set plan in place and kind of just want to get started so it can end! I went wig shopping today. Getting my eyebrows microbladed on Friday. Trying to control what I am since the rest feels totally impossible!
Hope everyone “enjoys” the few weeks left until this stuff begins, I’m trying to relax, work, go out and do normal stuff!
Feb 20, 2019 06:26PM Fallschurchgirl wrote:
Hi, everyone. I agree with LizzieAG that I am getting so nervous. But am trying to be all business.
Port placement Tuesday.
Having a drastic haircut Tuesday. I will post pictures.
I am still trying to figure out the cold pack for hands and feet. I have them in my cart, but am unsure if they are the “right” ones. I will see if I can paste a picture here. But I would love to hear if anyone had recommendations.
Feb 20, 2019 07:02PM santabarbarian wrote:
Hi March chemo gang!
There is so much info and support on this site... you have come to the right place!
I was in the August-December chemo group and am on to radiation now. Chemo was no picnic, but it was WAY less horrible than I had feared. In between the chemo treatments, you can feel like your old self, and by the time the recovery starts to become longer and harder, you are nearly done. The anti nausea meds are much better, and there are a lot of other complimentary things you can do to keep side effects from being extreme. One is fasting, or semi-fasting, for a few days each cycle, with chemo as the middle day of the fast. This was developed by a doctor and I did it with great success. If you search "fasting mimicking" you will find a lot of info about it. Another is following some easy protocols with over the counter meds like Claritin for bone pain. Another is keeping up with exercise (very important!) which actually helps you tolerate the chemo better and pass through the side effects more quickly. If you read through an old chemo thread, you will learn a lot.
I wish all of you the very best in your treatment!
Feb 21, 2019 07:47AM dianabee wrote:
I start March 18, taxol and herceptin for 12 weeks, then herceptin shots for 9 months. I was dx with DCIS and a 1.2 mm lesion with micro-invasion in Dec. and had a left breast mastectomy Jan.17. The pathology found the cancer to be multi-focal and 15 areas of micro-invasion. I'm ER/PR- and HER2+ so even with super small tumour and no node involvement, chemo is the safe bet. This all started out as a lumpectomy and radiation 8 weeks ago, so I'm still in shock.
Feb 21, 2019 08:36AM - edited Feb 21, 2019 08:36AM by santabarbarian
re cold packs:
I bought little freezable gel-pak socks from Amazon. They were the only ones I saw - light blue color. I bought the freezable mittens too, as well as the freezable migraine-sufferer caps (mittens and caps were royal blue color; mittens could be heated or frozen.). I've already passed them on, so do not remember the brands but they were the only ones I saw when I searched. You need more than one so they can be rotated when they thaw. If you have dry ice in the cooler they will re-freeze from that. I had 3 pairs of socks, 4 caps, and only 2 mittens since I more preferred a bowl of ice water so I could periodically use my hands to turn a book page, use laptop, or whatever.
I did not do the formal cold caps, and I missed out doing anything on chemo #1, because I raced into treatment. So my hair fell out. But I did my homegrown cold caps for chemos 2-6 and my hair actually began to regrow during chemo. I was concerned about taxotere sometimes causing permanent hair loss so I figured I could help preserve my hair over the long run by cooling my scalp even though I was already bald.
I am about 12 weeks post final chemo (PFC) and my hair is a length that nobody would recognize as "post chemo" - thick brush cut/messy pixie look.
Feb 22, 2019 08:45AM betterdazeahead wrote:
I had my port placed on Tuesday this week. It wasn't bad although I did wake up very emotional from it - partly I believe it was due to having a fill before and my chest was just sore and overwhelming feeling of the next part of this journey is getting closer. It is so hard not knowing really what to expect until it gets underway since everyone seems to have different side effects.
I spoke with my oncologist about the cold cap and decided rather quickly I won't be trying it. I have major cold sensitivities but other then that she explained it was roughly $300/treatment and only worked maybe 50% of the time and they are seeing those on AC it is proving less effective then they would like. With the cold gloves and booties I will be unable to use because I have Raynaud's and they are worried it could cause more damage then help me.
What other things are you ladies doing to get ready for chemo to start?
I have 2 kids at home an almost 16 year old and a 12 year old. So I am prepping for a upcoming sweet 16 (nothing big - just family and gifts and such - anything to keep my mind busy), and getting things situated so they have rides if I cannot to activities and such (my daughter is big into volleyball both indoor and beach while my son is into acting). I am also trying to organize the house a bit more when I can, getting some comfy new clothes (retail therapy ) found this site for wigs, beanies and such - https://www.tlcdirect.org/ and this site has neat shirts for port access https://www.careandwear.com/collections/chest-access-shirts
I would like to get things for in the kitchen for myself and the family to eat - are any of you meal prepping before hand?
Fallschurghgirl I would love to see the haircut you got yesterday! I went from long hair to a chin length bob before my BMX and am thinking of a cute little pixie cut before chemo.
Hope you all are off to a lovely Friday so far!
Feb 22, 2019 08:22PM - edited Feb 22, 2019 08:34PM by pokyspider
I got my pathology report on Wednesday and will be starting chemo on March 20th.
IDC 2cm with LCIS throughout breast, Grade 2, Strong (8/8) ER+, Strong (8/8) PR+, HER2-, 10/15 nodes, Ki67 26.5%
I am going to do 4 cycles of FEC for 12 weeks then 4 cycles of Docetaxel for 12 weeks. After that, hormone and radiation therapy.
I had a right mastectomy on Jan 25th with sentinel and axillary dissection. I also have a tumor in my left thyroid lobe which is being removed on March 8th (popped up on a CT scan and is completely unrelated!) then off to chemo on 20th.
I live in Japan and since my Japanese isn't very good some things tend to get lost in translation, but I usually manage to drag along a friend to translate when my husband can't make it to appointments with me. I trust my doctor and I feel we have a good relationship, and Google translate has been our friend!
In the whirlwind of info I completely forgot to ask about what stage that all works out as but I'm guessing stage 3? I'll check at my next appointment.
I'm struggling a little with how to prepare for chemo. My doctor said my hair will start to jump ship after 3 weeks or so but I'm not too keen on wigs (summer in Japan is ridiculously hot and humid). I have shoulder length hair so I guess I'll get a pixie cut before thyroid surgery on March 8th.
Anway, I'm sure I'll have lots of questions and I am a little apprehensive about chemo but we'll get through it together! I'm really grateful for this forum. x
Feb 22, 2019 08:44PM Fallschurchgirl wrote:
welcome, poky spider.
I am sorry for your diagnosis. But am glad you found us- your new support group for your new normal
I have lived overseas and understand the frustration of language barrier. I hope that your friends and husband can help you feel comfortable at appointments.
Better daze ahead. I am doing the short cut next Wednesday and will post a picture then. I will then buzz around day 12 when it starts to fall out. I have some wigs I can borrow, but am planning on wearing beanies. I picked bamboo- the scalp is supposed to be sensitive.
Feb 23, 2019 11:18AM LizzieAG wrote:
I am alternating between prepping for chemo and what that means for my ability to work and for my hair and kids, and panicking about the future and the bigger picture of my newfound health statu/s - finding the chemo prep more manageable since at least it’s a concrete step to get through! Working on my new mantra of one step at a time... which is so not my style.
For those looking for ways to prepare, I got my eyebrows microbladed yesterday. It was great, expensive, but I have big dark eyebrows and I think for me worth it if I can have something that looks somewhat normal under there when mine fall out! I have been told you cannot do this once chemo starts because of infections risks, so I won’t be going for the top-up, but I am glad I went
Feb 25, 2019 03:49PM ucfknights wrote:
My mom will be starting chemo March 11th. We have a port placement appt, a bone scan and echo and ct to clear everything out! So glad this thread was made to keep up with everyone starting :)
Feb 25, 2019 04:51PM Fallschurchgirl wrote:
ucfknights. Sorry to hear about your Mom’s diagnosis. I am hoping we can support each other as we go along!
LizzieAG I think one day at a time is the only way to go
My port placement and class are tomorrow. I will let you know how it goes tomorrow afternoon.
Feb 26, 2019 06:22AM Mncteach wrote:
Hi gang, I am in the January group and started the February group. I go for 3rd treatment on Thursday. Check out other months groups for great ideas and tips!
Feb 27, 2019 08:52AM Fallschurchgirl wrote:
Good morning, ladies.
I had the class and port placement yesterday.
Class was fine. Got my prescriptions. It took about an hour, but was just us with the nurse in a room. Not really a class as much as a pre Op for chemo.
We then went for the port placement. Unfortunately it was scheduled for 2 which made for a long day without food or drink. The nurse put my iv in a very awkward place on my inner arm. She said my “best” vein had been stuck recently and she didn’t want to use it.
Right before my turn she comes it and gives me iv antibiotics. It actually hurt going in- I think from where she put the iv. this made me anxious and nauseous. But they wheeled me in and I went to sleep and woke up with it in.
I am very sore today. My neck hurts and I am sore where it is. I am sure it will get better but I am glad I have 6 days until chemo so it can calm down
The port make it feel all too real. Big hair cut today. I will post pictures. I hope everyone has a good week.
Feb 27, 2019 10:30AM Mncteach wrote:
The port placement was traumatic for me too. They had to stick me 5 times before an IV was actually working. I got mine the day before chemo but they left it accessed so I didn't need another needle stick for the port. I think it actually bothers me more now than when I first got it.
Feb 27, 2019 01:49PM Ingerp wrote:
dianabee--just wanted to chime in to say the Herceptin-only treatments are IV, not shots. And I didn't get a port--just got an IV every time for Taxol. My MO wanted me to try it without and it was fine.
To everyone--it's going to be a tough couple of months but you'll come out the other side. I too think it's good to read threads from a month or two ahead of yours--so much good info and advice. I also appreciated "old timers" stopping by to give us the "hang in there!" message. I'm almost seven months PFC. I still have Herceptin every three weeks but the chemo is a pretty distant memory. I didn't cold cap--read too many stories about women who tried it and it didn't work, although I know sometimes it works well. My hair is short but came back in gangbusters (and unfortunately with a good amount of chemo curl--I am not loving that). For those of you thinking ahead, I stopped wearing ball caps about 12 weeks PFC.
I also want to stress the importance of protein through chemo. I ate red meat 5-6 times a week, had an egg every day, and drank a protein shake every day. My bloodwork was really good throughout--in fact my MO said I was the first patient she'd seen who was actually making blood through chemo. Other than that, treat yourself. I developed a HUGE ice cream craving (not my typical sweet of choice) and had some every day. I think many women find that sweets are one of the few things that taste normal--eat whatever appeals to you.
Anyway--this is a situation nobody wants to be in but this community is wonderful and very supportive. Best of luck to all of you on your journey. And here's to the end of the tunnel!!
Feb 27, 2019 04:35PM - edited Feb 27, 2019 04:37PM by betterdazeahead
Ingerp Thanks for stopping by and giving us all such good information!
Fallschurchgirl My port site was sore for a few days and now I have no idea it is there. My son used to have a port so he is giving me lots of tips on how things will feel and taste. Amazes me he remembers at 12 what happened at 5! The port placement made it feel way more real to me too. Can't wait to see your haircut! Maybe you will be my motivation to run out and cut mine now too :)
Well ladies it is getting closer to March - I almost can't believe it. Part of me wants time to stop and the other part just wants to get moving so I know what to expect out of all of this. Yesterday was my echo to check my heart - it was rough (I had just had my foobies filled right beforehand) It was also difficult to get good pictures with the expanders in place. Hopefully they got what they needed and all is good.
((((HUGS)))) to everyone!
Feb 27, 2019 05:54PM Fallschurchgirl wrote:
Traumatic hair cut today. I think I cried on and off through the whole thing. It doesn’t help that the port was aching. I hope I like the hair better once I can do it myself. But I keep telling myself that it doesn’t matter because it will be gone in 3 weeks.
Feb 27, 2019 06:22PM betterdazeahead wrote:
AWE Fallschurchgirl it looks wonderful!!!! I keep trying to sign myself up online for my hairdresser and I keep closing the page. I need to just do it....take a page from you and jump on in.
How many others are thinking they will go short before chemo starts?
Feb 27, 2019 06:52PM - edited Feb 27, 2019 06:53PM by Mncteach
I went short before surgery and then shaved before clumps fell out (just before 2nd treatment). I haven't had really long hair in a while so it wasn't a huge shift for the first cut and was much easier to care for during surgery and recovery. I surprised myself by handling the shave without any immediate tears. There have been tears since but I know it was easier for me than having clumps fall out. I even had tears when the little hairs started falling out.
Feb 28, 2019 06:54PM pokyspider wrote:
Got my hair cut short yesterday. There were a few tears (hairdresser started it, not me!), but we had a good laugh too. Got a couple of soft beenies and I'm on the look out for some cool scarves (helps to hide the lopsided chest too!). A bit chilly but I'm definitely loving the low maintenance. Was going to post a pic but it says I'm not allowed.
Feeling much better mentally now as I feel like I'm getting prepared. Just sitting here waiting was doing my head in!
Hope you're all doing ok.
Feb 28, 2019 07:02PM - edited Mar 1, 2019 12:59AM by pokyspider
I really hope you're getting used to the new cut. It's pretty much impossible not to be emotional about your hair (and everything else!). I keep catching glimpses of myself in reflections while I'm out shopping and having to remind myself that it's the new me.
We're all here with you on this one - on the positive side you're rocking the short cut. Looking good
Feb 28, 2019 09:21PM betterdazeahead wrote:
pokyspider - WTG on getting it cut now! I bought a beanie too, love how soft it is! I found mine from TLC - where did you get yours? I am ready to buy more, feels like the only thing I have control over lately is treating myself to different things. I told my daughter today that if my hairdresser still had an appointment available tomorrow I was scheduling to go in - welp she was booked so now I wait until next week (yet haven't brought myself to book it yet LOL - can we all say this is the one thing I am totally procrastinating on).
I am starting to put together a bag to take with me on chemo days since I was told the infusion would be 3 hours + going in for labs then seeing the doctor 1st - sure makes for a full day. I decided I will take my mastectomy pillow and a blanket, a book, my computer, phone, chargers, some snacks that I like to have, H20 and my daughter bought me an coloring book to help pass the time too.
Feb 28, 2019 09:43PM dianabee wrote:
I went to a chemo info session today. It was just general information, but such a full room of people. It really struck me just how many are affected by different cancers. Afterwards, I realized that the woman who did my mortgage was there. She's a new Mom with a 5 month old baby and just found out 2 weeks ago that she has lymphoma. It was a strange afternoon and I'm still processing why I feel it was strange.
I've also got some consultations lined up for wigs, started with Latisse for lashes and have an appointment for microblading the brows. Another week of work, beach holiday, then a few days after and I'll be starting this next phase. Still debating cold caps. For now, I'm treating myself to some silver highlights and a trim, the last time for a long time LOL.
Feb 28, 2019 10:33PM pokyspider wrote:
Hey betterdaze, great idea on the chemo bag! That can be my next project as I don’t start chemo until 20th. Keep me busy. Mine is a 2 hr infusion plus blood and doc check from 9am. My hospital is always really hot but I’ll bring my mastectomy pillow too - thanks for the tip!
First just have to get through my thyroid lobectomy surgery next week, hence the early haircut. 🙄 When I was in for my mastectomy my hair drove me nuts not being able to wash it. Short cut should be way more comfortable and won’t get caught up in the drains. 😊
I got some cotton beenies in a local store. Cheap and cheerful. Bit worried about summer here though as it’s boiling hot and incredibly humid. Will have to invest in some big uv sunhats! My doc said to try to avoid mosquitoes, ha! Like THAT’S gonna happen. Always get eaten alive.