Starting Chemo December 2015

chinacat

stotamom - are you getting Neulasta?

stotamom

chinacat - I do receive Neulasta. I have the pod placed and it gives me the injection the day after my infusions. My MO was floored and made them re-draw the labs.

chinacat

Stotamom that is scary. Good to wait til your number is up even though it drags this crappiness out a little longer. Hoping for high wbc's for you!!

Sammy3

For those of you who have put coconut oil on your scalps - do you just use a little? Is it at night only? My scalp just feels sore in the bald spots. Not red or anything. I don't know if its because its not protected. I just wondered what you did.

Twirp26

hey Sammy, I used emu oil at first but my mother said to try coconut oil. It is a lot more greasy then the emu oil. Also, a little goes a long way! I learned that the hard way. It melts as soon as it hits your head. I felt it dripping onto my face;) I put it on at night and sit without anything on my head for awhile. I cover it at bed time. Don't want more zits!! Hope that helps

Lyra10

My LGFB class is next Tuesday and my number 3 T&C is on the 21st. So my oncologist office told me to use Neutrogena T-Gel for the red bumpy head I seem to be having and so far a little better. I have to wear my wig and so far work is just getting crazier, trying to leave after 8 -9 hours vs the norm I used to do. I guess work hard this week, play hard with my 3 year old then when i don't feel so hot then I'm ahead of the game.

I'm sorry ladies about the low WBC, I think the fact that I have been taking B-6 since I had Gunnar it has let my numbers high. I was reading it helps. Hey Twirp26 you are the one that hasn't had surgery already right? Check out Etsy for drain mesh bags to hold your drains when you shower, or since you're crafty maybe if you see them you can make them!

Twirp26

Lyra10, you are an inspiration of you are working so many hours, raising your baby and wearing your wig all day on top of it!! You must have some serious drive!! Thanks for the tip. I know very little about recovery but I have heard of drains and drain pockets etc. how long do you have the drains? Can you go out in public and hide them?? 😬😬😬 I know this is a chemo discussion board but I think I'd like to stay with all of you ladies and ask my questions. I will still need 3 more chemo treatments after surgery but it will probably be in March. Thanks for the tip. I think I have a lot of research to do:

mvspaulding

hey Twirp. I have some brand new "pink pockets" that I bought fir my drains that I didn't use. They come in a pack and I only used a couple. If you want them I will send them to you. Just google pink pockets and you will see what they are

Lyra I don't see how you are continuing with the wig and red bumps. I don't even want to put my wig on with these.

chinacat

stotamom and anyone else with low wbc's - I have had great #'s so far and I take daily probiotics. Not sure if that is why I get great numbers but it might be worth a try.

Thinking of you all and hoping for healthy happy days

Twirp26

mvspauling, you are so sweet!! I will private message you. I am happy to pay you for them!! I truly have no idea at this point what to expect. I meet my new surgeon on the 19th. Hoping that will get me out of the dark. Have a great day!!!

stotamom

chinacat - I have lupus on top of the bc so that may be playing a role in the counts. Although yesterday I was mad/sad I did not receive treatment, I can honestly say that I am a WEE bit happy I didn't. I can't imagine feeling worse than I did last night. Never been happier to take an antibiotic in all my life.

Twirp26

knocking out #3!

Woodie

Twirp26 - I just had to jump into this forum when I saw your pix. I love the shirt and head wrap. You look amazing. I am heading for No. 3 TC in another week. I cannot get all of my head stubble to disappear but go to work bald and kinda enjoy it,, esp. since we have several gentlemen in the office who shave their heads! Best wishes for the rest of your treatment.

Sammy3

How much do I love that shirt!!!! OMG its so awesome and congrats for getting #3 done! Just 1 more for you before surgery, right?!

Twirp26

thanks woodie and Sammy3!! I have been slowly collecting my shirts so I can wear one at each session. Yes Sammy, supposed to have one more then surgery!! Time won't come fast enough. Woodie, I also still have some stubborn stubble. Mine is not consistent or I would probably go bald more often. It is kinda splotchy. I want it to fall out already!! Hope everyone is doing well:)

brithael

Twirp26 - Love the shirt and the hat!

My hair is coming out in handfuls. I've called my hairdresser who's been on call for the big buzz. I had a wig consult today to go with the other two inexpensive wigs I have. Here are my new looks

Sammy3

I am with you. I am still doing the 6 TCHP, but then I am also having a Bmx. I had a pre-TCHP lumpectomy tho. I'll be honest - I am scared of the surgery I just want to move on, you know?

Karenbo

Love the shirt Twirp!!! Congrats on having # 3 in the books! Re: drains, they gave me a corset with drain holders immediately after the surgery. You wear it under your clothes and you can definitely go out and about while you have your drains. They hide easily under a loose top. You will likely want button up or zip up tops to wear for a several weeks following the surgery. They restrict how high up you can raise your arm(s) following surgery. One of my drains was in for 2 weeks and the other one came out at 3 weeks. They were easier to take care of then I had thought they might be. Imagine you will get lots of information and have your questions answered after you meet with your surgeon, but we're all here if you have any other questions! We'll be cheering you on for your surgery!!!!!!!!

You look beautiful in all 3 of them Brithael! (my favorite one on you is the 3rd one)

Twirp26

thanks girls! Yes Sammy, I am also nervous. My oncologist works a lot with this surgeon and said he prefers lumpectomies but will do what ever I want. I have been pretty consistent with the BMX decision. I am a worrier so I'm pretty sure if I don't do this I will be anxious. Yes, it could reoccur but I think it will reduce risk. Plus, my boobies will look more symmetrical;) I told everyone I was going to ask him to put them on my shoulders so they will still be perky by the time I'm in my 60's;)

Karenbo, thanks for the info on the drains. I have absolutely no clue!! Lol this is gross but what color is the stuff coming out? How much and how often do you have to empty them? Sounds lovely😜 Just another joy in all this huh? Glad I have you all to talk to. Still in my chair hooked up. Think this will be a long lazy day😴😴

chinacat

stotamom - so sorry to hear that you also have to deal with lupus! That stinks!

Twirp - another great shirt. Hilarious;)

Brithael - you look great in all three styles! I like the 3rd best, makes you look younger than the others;)

proctor1725

I had a double masectomy on 10.20 and had 4 drains for about 3 weeks. Initially, I had to empty 3-4 times per day but towards the end 1-2 times per day. The drainage was yellowish / redish fluid (sorry - you asked). It became a game with my daughter of which drain was going to 'win' and have the most fluid. My surgeon wanted me to get below a certain fluid level for 72 hours before they took them out. I hated them - to be honest. I slept in a recliner and felt like they were constantly pinching me. I felt 100 percent better once they were out but I could certainly do normal activity. Hope that helps. BTW - I was told they will stay perky. since they have to cut out most of your muscle tissue, they will never sag......LOL.

Sammy3

This may be a dumb question, because honestly I don't know much (yet) about they mastectomy surgery. But do they have to remove ALL lymph nodes? I am assuming that is what the drainage is from. Is there a scenario in which you are left with some? I think I am worried about the pain.

proctor1725

The drainage is not from the lympnods. It is just from the surgery site - swelling and fluid is natural after a major surgery and the drains prevent infection. I had two lymphnoids removed and they both tested negative for cancer so the didn't remove any additional lymphnoids. I was suppose to be released from the hospital the day after surgery but they did keep me in an extra day because I had a slight fever and I was in quite a bit of pain. Once I got home, I started doing more and more moving and the pain was reduced to almost none within 3 days (except for that annoying 'pinch' from the 4 drains). Make sure you research showering with the drains. It is not easy feat. I used a shoe string tied around my neck and than pinned each of the drains to the shoe string so I could shower. Quite a site, I must say! LOL

Opt4Life

Twirp, I have the same questions about the drains and stuff coming out of them. Glad you asked them. I have a low tolerance for pain and a low tolerance for grossness. Lucky my good friend and neighbor is a nurse practitioner so I've already told her that I will be ringing her doorbell begging for removal of filled drains. Definitely feel like I have chemo understood but up next is surgery and like you a BMX is what I am leaning towards and am a little anxious (not scared, but certainly anxious).

Stotamom, sorry to hear about your low counts probably compounded by the Lupus but glad you didn't get chemo and felt even worse. Question for you though. How is the pod itself? Do you feel the needle the entire time? Is it uncomfortable? I am not that far from my infusion center but if I can save the 15 minute trip, I think a pod is the way to go for convenience.

Have a good rest of the week ladies.

Twirp26

thanks girls!! Sounds like a blast😉 I guess one step at at a time right??? BLAH!!!!

Chinacat, have a blast in MEXICO!!! I'm jealous!!! Don't drink the water😉

Woodie

Lovely looks, Brithael. You are going to be a fashion plate! Enjoy the buzz as much as possible. Not everyone gets to be bald and beautiful like we do! I've had to do it twice and enjoyed it much more than the other chemo side effects.

For you ladies awaiting mastectomies, please do not worry excessively. The unknown is the hardest part and you are receiving some wonderful advice on this forum. I had my double at the end of Oct and only 2 weeks of drains. I chose not to reconstruct so suppose my experience was a little easier than some. I was terrified of surgery having never spent an overnight in the hospital. My only other experience was an in-office lumpectomy years ago and elective breast lift (isn't THAT ironic) three years ago. But things went smoothly for the BMX and I was home the next day and on the mend in no time. You are already going through chemo, which to me is so much more difficult than the surgery, so you have proven how strong you are! Keep up the good work!

Woodie

mvspaulding

Twirp, love your shirt and head wrap. You are totally rocking it. And no way would I take money for the pink pockets. I have been looking for someone to donate them to

I too had to make the decision between lumpectomy/BMX. I was told a lumpectomy would be sufficient but I knew I would always worry about recurrence if I did that.

Not going to lie, the drains were yucky and uncomfortable. Mine only had to stay in for 10 days.

Stotamom, sorry about your low counts. They didn't check mine the week after treatment like last one. I guess because I got the Neulasta shot this time. Is that normal?

Brithael, your new looks are cute! I kind of wish I would have gotten more than one wig now.

This is so strange, not only do I still have stubble but I could swear it is growing. I tried what you were talking about Twirp and took tweezers to it and they pull out easily. I still have the red bumps too but they are slowly diminishing.

Chinacat, I am totally jealous, going somewhere warm. Have a blast

lawyer180

Lyra-- I'm also doing chemo first, then surgery. My bc is being treated as triple negative, even though it is PR+ (just barely, low %). I'm trying to decide between lx or bmx. I'm leaning toward the bmx for the peace of mind.

Twirp--I LOVE the shirt!!

lawyer180

Brithael---All 3 of those look great on you!!

---

Noni

I had infusion #5 today and it kicked my butt. Got home at 2:30 and napped until 7:00. Just had a snack and will be going back to bed shortly. The fatigue stinks.

Regarding drains, I had a BMX back in 2008 and had the drains in for an especially long time. I was very active early in my recovery and that helped the fluid drain. Drinking lots of water was also a plus. I have a series of infections, which is why I kept them in so long.

I kinda missed them when they were gone. It was fun draining them and seeing how much came out. And it was such a relief when you saw a glob of stuff come out. My husband used to quote Shrek all the time. 'Better out than in I always say.'

My hair started coming out in clumps so we cut it and then buzzed it. That was 11 days ago and some of the hair has continued to come out, but most is still growing. My husband is going to buzz it again tomorrow. I don't like wearing the beanies and prefer to go natural. I may be going back to work next week and don't intend on wearing a wig.