Chemo starting June 2018
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My oncotype score was 28, which is why I wanted a second opinion. I really respect the MO I went to yesterday, but she isn't covered by my insurance company. Sounds like if you can change doctors, I definitely would!
I don't want to do the cold clapping, so I'm shopping for hats and wigs.
We can do this!!!!
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Today, my oncologist's MA phoned me to tell me that my oncotype score was in, and that my oncologist does recommend chemotherapy. I'll meet with him Thursday morning, and learn his recommendation for a treatment plan. My Oncotype DX is 59, which is horrible news, but not unexpected, given that my tumor is Grade 3 and has other aggressive histology markers. Thanks to all of you who post your experiences, which helps to guide newbies through the Chemotherapy maze.
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Hi ladies! I'm in the March Chemo thread, but check in to the newer ones as well. So much amazing advice to be found in these forums.
LibbyLou I replied to you in the Stage II forum about 4 rounds TC without a port. I did it and was fine - hydrating extensively is important a few days before and day of to make sure your veins are easy to access. There is also a great thread - Tiffany's Terrific Tips for TC, take a look at it, the original post is older but the advice and add-ons are great.
juliechris, there are a few options for Neulasta - there is the pump they attach (Onpro) which goes off 24 hours after your infusion, or unless your center is too far or closed the day after, you can request to go in and have them give you the shot (it takes literally just a few minutes). I requested my 4 chemo rounds on Thursdays so I could go to the center on Friday and not have to wear the pump or give myself a shot.
Best to all of you starting chemo this month! I finished in May and now am prepping for rads to start next Monday - when you first start it seems like it is forever but the time does pass. Share with all the sisters out here - together we are stronger!
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libbylou - I hear you on the cold capping. I’m really not excited to do it but I have two young kids and if I can, I want to continue to look like “Mom”. They’ve had so many things that they’ve had to process and adjust to in the past two months since my diagnosis.
I will be watching your progress through this closely as I, again, look like I’ll be your treatment twin, and hope you post to keep us updated on how you’re doing through treatment.
Hikinglady - I’m sorry you’ve found yourself here. We’re all here to support you and we’ll all get through this together. I cannot say enough how invaluable everyone in this thread is - the support and just knowing we’re not alone and can relate to one another is a huge help during this crazy and difficult time!
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Hi Ladies,
Adding on to share my experience so far. I did my first chemo infusion of TC last Friday, June 8 and was cold capping as well. I found that the cold capping was a nice distraction from focusing too much on chemo, however, my boyfriend and I did feel a bit overwhelmed with switching the caps so often etc., hopefully it gets easier. Day after chemo I was feeling pretty good, then Day 3 and 4 is when I started feeling the SEs. Some bone pain on my legs and overall icky-ness, but still manageable. I didn't get Neulesta though, instead my MO put me on Granix. Here's hoping that those side effects were the extent of it!! Keep strong ladies. I just keep thinking that one day I will wake up and this whole thing will be over and I can start feeling like myself again!
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I guess my chemo wasn’t going so smoothly as I thought. I think the rash that I got on my neck are actually shingles. My head started tingling and itchy too. The on call doc told me to take benedryl and call my doc in the morning. I wish I addressed it earlier. I thought it was tolerable and was just a heat rash due to hot flashes.0
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hi timetobebrave70...so sorry to hear that you might have shingles. I hope you get some relief soon. I will keep you in my thoughts. Thank you for all of the advice in your earlier post.
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hello everyone. I hope I didn’t bring anyone down with my shingle scare. I really have to stay away from Dr. google. I didn’t see the doctor today. I was scheduled to see her tomorrow for lab work so she will see me tomorrow. She says it’s chemo rash not shingles. Told me to continue taking Benadryl and use gentle shampoo, lotion, etc. but she will take a look tomorrow. It’s just itchy and back of neck and head so can’t really see it. If this is the worst side effect I get, I will be happy. I will update tomorrow after my doctor’s visit! Hang in there all🤗🤗💕💕💕
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Hi Everyone ~
My 2nd BC, 2nd chemo, BRCA2+, don't know onco score. I don't think it matters at this point.
1st BC lumpectomy, stage 2b, 4 AC, 2 (of scheduled 4) Taxol (couldn't tolerate it), then 36 (?) rads.
NED 13 years.
New primary, other breast, nipple sparing BMX with expanders, stage 3a. Lymph nodes involved again.
Bone scan, ct scan clear.
Told onc wouldn't do any Taxanes so she agreed to 4 AC with close heart monitoring. Then rads.
Finished 1st AC on June 7th, was pretty much like 13 years ago. S l o w red devil push, small veins, took 25 min. then
about 1 hour 10 min for the C drip. No nausea. Drank lots of water and a hydrating coconut water sport drink during.
Stomach is feeling weird, kind of hungry, kind of not. No nausea at all. Tired by the end of the day.
Feeling energetic today, maybe because the weather is finally sunny after 4 days of dreary clouds.
I take a lot of supplements, always have, and have recently started oregano oil.
Not currently working, on short term disability due to type of job and treatment schedule/doctor appointments.
Worked all thru chemo and rads last time though.
Good luck to all!
Janis
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Janis,
So sorry you are here, but it sounds like you are handling it all well. I think a few days of sunshine makes a huge difference in our moods!
Keep us posted on your progress!
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hi Janis - so bummed that you have to go through everything again! Happy to hear your scans are clear! It's always a joyous feeling to get that kind of good news. Good luck and I hope your stomach feels better soon.
hi timetobebrave70 - phsew - good news that it's not shingles!! Hope your rash clears up soon. I'll let you know if I come across anything helpful.
port triplets - hollywood 19 & stalynn - are your ports feeling better? Mine is feeling a little better, but still sore and don't really feel like moving my arm. Hoping it is ok to use for chemo on Friday. eeks I'm starting to get nervous.
Does anyone have any helpful tips for the icing of the hands and feet? Are the ice packs too hard to use or do they work ok? I was thinking of using some bags of frozen peas lol.
Last question - is anyone taking Lupron? If so, when did you stop having your monthly cycle? My doctor gave me a shot to make my ovaries hibernate during chemo so they could be somewhat protected. I'm starting to feel really crampy like I normally would so I am worried it might not be working :-/
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Hi Lulbella, I got a Lupron shot too. I had a regular period after and some spotting the week after I finished my period. I asked my MO and she said that's normal as my body is preparing to go into menopause. Fun times!
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haha fun times indeed Domzie30218
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hi,
Had my first ac today. Got a steroid and anti nausea first through the port. No side effects yet just tired. Got neulesta patch. Port is doing good the incision by my collar bone itches like crazy. Wonder what tomorrow will bring? Wish you all well
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good job hollywood 1968!! That is one down! I have my first TCHP tomorrow so we can commiserate over the weekend
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Good luck to you tomorrow lulabella! Don’t forget the Claritin Hollywood! 🙏🙏🙏0
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Good luck, Hollywood! Don’t forget to gurgle with salt and backing soda mixture after meals and before bed - prevents and treats mouth sores. I had a few small ones after the first AC. Yesterday was my second AC, so I started to rinse right after I came home.
Lulabella, wishing you an easy time with TCHP.
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FIrst AC chemo checked of the list-6/14. Was extremely exhausted yesterday, slept all afternoon and night. Did have some nausea but meds helped. Feeling good today, staying active. I also got the neulasta so started Claritin the day before. I got the Zoladex injection last week, some cramping and spotting but I had a Mirena IUD removed, then Paraguard implanted within a weekl so figured it was that that started the spotting. Port is only painful then I do too much, it was used for chemo yesterday. I will start the mouth rinses as well. Tanks for all the information and support. We've got this ladies!!!!
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Feeling pretty good. Have done the mouth rinses and Claritin. I was given 2 antinausea drugs and a asteroid before chemo, so havent been nauseous. Have 2 antinausea prescriptions which I have filled and will begin taking today. Was told to expect Saturday and Sunday to be the worst days and begin recovering Monday. Good luck lulabelle! Here's to being strong!!
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Thanks for sharing, everyone. It is helping me prepare, in all ways. My first TC (there will be 4) will be June 25. I've decided to try the Paxman scalp cooling system, since it's offered at my oncologist's clinic. It's not free, and I haven't yet checked with my health insurance to see whether it will be covered, but I have some money in an HSA that can cover it if need be. A small percentage of patients have permanent hair loss after Taxotere, so that's why I want to try scalp cooling.
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First Taxotere and Cytoxan treatment done. My beautiful sister and friend Margi were perfect support. We chatted most of the time with a couple cat naps sprinkled in. It made the 4.5 hours go quickly and I'm home resting. No SEs yet but am still dosed up on decadron, benedryl, pepcid, and zofron - meds that are supposed to hold me over tonight. I have 4 treatments total every three weeks. When I was done my onco nurse said " well your a quarter done". It made me cry with relief. Of course the truth is I have to see how I feel this next three weeks. Then I'm truly a quarter done. The only hard part was that my nurse blew out my vein on her first attempt to place the IV and that hurt. I was trying to be stoic until then but all the nervousness welled up and I burst into tears. My sister did a guided relaxation meditation while the nurse successfully placed her second attempt." relax your toes - relax the ball of your foot - relax your arch -relax your ankle and so on and so forth up my frame. Loving prayers to all you warriors. I'm learning on this journey that we can't worry about the what ifs. (I did that way too much during my double mastectomy) We can only promise ourselves that we will endure.
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rachel, thank you for your story. can i say i'm a little jealous that you've completed one treatment--along with timetobebrave, domzie, jaybird, hollywodd, staylynn, lula, and everyone else?
my first chemo is on tuesday and my mom and gf will be w/ me for support and advocacy but i'm still nervous. still waiting on my oncotype score, and i feel for you hikinglady--my dad's side of the family has extensive cancer and a maternal aunt has had BC twice, so i'm preparing myself for a not-great number.
that said, we'll show up and do what needs to be done.
lula--i'm sorry i'm a day late for advice, i hope yesterday went well for you. for my feet and hands i ordered specific "mitts" and socks (with slots for cold packs) from amazon, plus extra cold packs. i've used frozen peas (or corn) for plenty of sports injuries and they've worked well.
i don't know if the cold lasts longer for cold packs vs veggies, but another option: when i had acl surgery we made homemade coldpacks in zip-loc freezer bags--it's just rubbing alcohol and water--and tons cheaper. my knee shrunk from the size of a swollen cantaloupe to normal sized in a few days so whatever's cold, works!
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Hey tvheaven, you will do fine. I think the anxiety of the "first" chemo gets to all of us. Even I was nervous and anxious despite going thru this 13 years ago as we just don't know how we will react physically or emotionally until we do start the actual chemo. It does get better/easier. I can't want for my next 3 chemos just to get this shit behind me. lol.
I'm super busy every day and a bit scatter brained but I don't think I have chemo brain - yet? I take a lot of supplements and have upped my liver detox and probiotics. I'm trying to eat more protein but crave carbs more. My mouth has been 'okay', no sores, I use Biotene a few times a day and use an all natural (no chemicals, no dyes, no fluoride) toothpaste.
For me I found that just drinking a lot (water, coconut water sport drink ) during the session had me feeling like I was 'flushing' the poison (as I call it) out of me and made me feel better in my head. My nurse was very nice, we both have daughters of a similar age so during my long red devil push (25 minutes!) we chatted a lot. During the C drip I just wasted time on my phone, made phone calls, checked Facebook (I'm addicted!), texted, anything to keep my mind busy. I was not tired. I had a private room with a tv but didn't watch it as I don't find much interesting on daytime tv.
I'm not doing any cold cap stuff. It wasn't offered? No guarantees with it anyway? I'm only doing the 4 A/C (as long as my heart an blood work stay good) and I know my hair will fall out but it will come back. It came back just the same last time. I'm 9 days out and my hair will start falling out soon so I'm going to get a buzz cut next week. I've prepared my daughter for the 'event', she hasn't yet decided if she is coming with or not. I'm saving as much hair as I can to put in my yard/garden next Spring for the birds to make their nests with. I've read of others doing this and I've seen pictures and I love Nature so why not? I have my 'free' wig from the ACS and I have a lot of pretty scarves to help me look 'normal'.
I'm trying to find positive things about this BC crap. I'm off all Summer (on short term disability) with my daughter so there's that, otherwise I'd be working and gone a lot (I'm a flight attendant). I'm moving out of state and now have the time to pack up my house slowly, as I find the energy, and cheaper than a moving company would cost me. Trying to be positive! I'm still scared but scared doesn't move you forward, moving forward does. (You can quote me on that - lol!).
Sorry for the long post!
Wishing a great Father's Day Weekend to all the dads and moms!
Janis
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Started chemo on 6/14. 4 round of AC followed by 4 rounds of Taxol, then surgery. Went with the Neulasta OnPro and it worked out well. Besides a little nausea issues and feeling lethargic today, I’m doing ok. Picked out a wig yesterday.
One day at a time.
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Glad to join the "June" group and know I'm not alone through this journey! Started TC on 6/11/18. Surgery went so well that I expected chemo to go as well.... then day 4 hit and I had bone pain and extreme fatigue so missed 2 days work. Anyone else trying to work full-time or almost full time through all this? Any tips on managing? I heard wigs could be hot and since my treatment is all summer, I'm going with just scarves and caps.
Surprise this week? That I could give myself the Neulasta shot and it was pretty darn easy. Hope everyone continues to be strong and your SEs are minimal....
DX 3-18-18; Lumpectomy 5-15-18, left, 1.5 cm, Stage IIA, 1/1 Node positive, ER+, PR+, HER2 -0 -
I just had my first round of chemo on June 4th and so far so good. I think I was the only one not nervous or worried about getting it. I'll be getting it every three weeks four times then weekly.
The day after getting the chemo I was so tired I didn't do anything but sleep. I'm not sure if this could have been because of the chemo because everything sleep wise has gone back to normal since then. The only real side effect that I've been having is constipation but I've been taking an over the counter laxative for that and I've been doing ok. I wore the Neulasta patch for 24 hours then took it off. Does anyone know if the Neulasta is given after every treatment or just that first?
When I woke up last Tuesday I did have severe back pain, it was so bad it was throbbing. I could stand for so long, then I'd have to sit, then lay down, then start all over again to help ease it. I took some Advil (which is the only pain med that seems to work for me, even prescription don't) and a few hours later I was feeling ok. I do have a little bit of back pain every so often depending on how I sit now but I don't know if this could be do to the chemo or not. I've always had back problems, so bad that I had to have screws put in which was 6 years ago, but I haven't had any problems since I got those.
I had to have blood work done on the 11th and a lot of my levels were low on many things. I was given Ciprofloxacin and told to say in the house and not be in public around other people because I could get sick and this might cause an effect of when I get chemo. It's been really fun basically being locked up in the house!
I have a great friend who gets a hold of me almost every day to see how I'm dong. Like me, I think she's the only one staying positive about things. Everyone else is always saying "It's going to happen...." The two of us are both the type of people though who are ones that can make you laugh instead of cry even over the worst of things.
Hopefully things keep going good. I'm looking forward to getting help and advice from this website. Someone else told me about it and said it was great!
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GrooGruxQueen, sorry to hear of your back troubles. This is most probably due to the Neulasta. It can cause bone and muscle pain. The worst for me was a couple hours one night when it felt like I threw my back out! Took Tylenol and it helped. Someone on this forum suggested taking Claritin a day or so prior to getting the Neulasta and continue for a bunch of days to prevent bone pain. I’m going to try it in my next round.
I’m very surprised to discover that my hair is already starting to fall out after just 1 cycle. My next cycle is a couple days away on Tues 6/19. Clumps of it came out tonight in the shower as I was washing my hair :-(. I knew this was coming but didn’t expect it so soon! Dr and nurses told me after the 2nd treatment. I’m also upset because I made an appt on Monday to have my hair cut short and to use my remaining past shoulder length hair for a halo piece. You need a full head of hair to make it and I now fear that won’t be the case. I’m praying my hair holds out the next couple days.
I’ve also been surprised with a full period this week! I’m right on schedule and would have thought it wouldn’t happen due to chemo. Perhaps, this is my last menstrual cycle during treatment. Everyone on this thread seems to just be starting chemo so not sure if anyone else is experiencing similarly.
Never a dull moment!
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cc738nj, welcome to the Community! If you need help navigating the forums or the main site please don't hesitate to reach out to us via the private message function. We're here always here!
The Mods
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Hi cc738nj, I am on TC x 4 and plan to work full-time throughout. For the first session, I had it on a Friday and took Monday off, just in case--so glad I did because that was probably the worst day for me in terms of fatigue. Then for remaining 3 sessions, I'll do in on a Thursday then work from home Friday, then should be back to work on Monday. I'll update on how that goes as I know that the side effects are cumulative. Now I'm dealing with this damn dry mouth, any tips besides sucking on hard candies?
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Hi Domzie 30218 - it was that same 3rd full day after treatment that slammed me as well and I also worked from home - although with much limited productivity. thank goodness for technology and a flexible office!
Today hit with non-stop back spasms from the Neulasta shot - hoping they subside soon!
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