April 2017 Chemo

Rikki320

i was a little hestitant on the port. But believe when u are going through chemo the last thing you want is something poking you. So i would say yes to the port.

tls5141

Had my first chemo today- AC. So far not that bad. Slept for an hr and a half when I got home. I've been eating something small every 2-3hrs as they recommend to combat nausea. So far only symptoms I really notice is a feeling of foggyness (probably from all the meds) and a bad taste in my mouth. Feel a little tired but nothing I can't handle. I received the Neulesta patch. Its pretty interesting. While i was at the infusion center they put it on and it actually pokes you with the needle while you are at the office and will remain in your skin until tomorrow when the med is released. The initial poke startled me but other than that it doesnt even phase me that it is there. I took a nap on that side too. Remaining positive and hoping for the best.

utjoy

JLBinPDX - yes...laughter is good, I'm, so far, not taking this dx personally & I must find humor in life where I can.

And then...

eicats...my heart is heavy for you. I wish I knew what to say except I'm so sorry you have all this extra stuff to go through...my humor has left my building. I will be thinking of you.

eicats

utjoy - thank you.

On the upside, my first chemo went really smoothly yesterday and no side effects yet so doing good so far. Riding those premeds as long as I can. Even slept fine last night with the steroids on board. We'll see about tonight.

whirlwind

eicats, I am very sorry about your stage IV diagnosis. NOT FAIR is all I have to say. None of it is fair, but like you said, to be dealing with this right in the midst of dealing with the initial diagnosis is just crazy. Much love and hugs to you!!!

My breast MRI, Axilla US and Echo results are in. no other evidence of cancer, or spread was detected where they looked, but I wont be getting any surgery or lymph nodes biopsies until after chemo is done, so it's weird to me to not know my stage. My ECHO shows my heart is good to go for chemo. I get my port put in Tuesday the 11th, but have to go running around for more tests, as now they need a pre op EKG and chest x-rays. I wish I could have had those done when I was at the hospital earlier this week, but they couldn't schedule the port surgery till those other tests were back. SO, when the surgeons office called about the port placement surgery, they said I need to contact my oncologist office and tell them port is being put in on Tuesday in order to find out when I start chemo. I called the Onco and left a message, and after waiting several hours for a call back, I called again, and they told me they are waiting on insurance authorization, and I wont hear back from them with a start date till next week. I don't know why insurance authorization takes so long for this. I wish we could have just set up a tentative date. I don't mind starting just after Easter. Usually I am the one that hosts the family coming over for Easter dinner at my house with a ham, many other yummies, and I bake in Italian Ricotta pie, but this year we are all going out to eat Chinese on Easter.... or that is the plan anyway. If chemo starts before, then I will see how I feel.

I'm sorry if I don't reply to everyone individually all the time, but I'm thinking about you all many times throughout the day!. Thanks everyone for sharing your stories of dealing with your first chemo infusions and how you are feeling in the days to follow. They really help me to not be so scared.

~Kelly

Annbee

eicats- I am sorry about the new stage. Sending hugs to you. Cancer stinks.

Whirlwind- I know what you mean about all the running around for tests. It seems like there is always one more. I still need to get a bone scan. They called to schedule it about a week after my surgery but the hospital needed more info from the MO to schedule. Not sure why they called me. Lol. Then a week or so later they called to tell me my CT scan was clear. When I asked about the bone scan the girl said your CT scan is great don't worry about the bone scan. So I didn't, till this week and they still want me to do one. So I have that to look forward to at sometime during chemo. This bone scan has been stressing me out. Happy to do it but want to get it done. I don't like the back and forth...just venting.

I hope everyone is doing ok with SE. I have my first chemo on Monday at 8:30.

Anne

StaceyB

That is very sweet of him!

StaceyB

Hi All - I am new to the group. I am so sorry that we are all here, but grateful we have each other. I have been reading through everyones tips, tricks, suggestions and fears. I start chemo on 4/26 and of course afraid like everyone else of the unknown and how I am going to look and feel. It sounds like it has been somewhat manageable for others so far. I could have started a little earlier, but we decided to take our kids away for a couple days over April vacation before this all starts. The anxiety and anticipation of waiting though may be making this harder on me.

I had my surgery in March - about 4 weeks ago (lumpectomy and axillary LN dissection). Everything went very well. I have not found the recovery from the lumpectomy piece to be too bad. I am dealing with a lot of cording in my arm (all the way down my forearm) as a result of the LN surgery, and that has been painful / uncomfortable. I did have quite a few removed though. I had my first PT session today and found it helpful. They gave me some tips on how to keep the lymph fluid moving in my arm. Anyone else dealing with that?

eicats - I am so sorry about your new diagnosis. I wish there was something I could say to make you feel better, other than we are all here to listen, when you need to "talk".

Lordhelpmetoo

Wisner,

The steroids definitely keep you up all night. I asked dr to give me Ativan, which helps.

JLBinPDX

Damn it, I didn't want the port but I guess it's going to happen. The nurse today told me that they type of chemo drugs makes having a port so much easier. She stressed the toxicity of the meds going into veins makes it NOT like just having blood drawn. Just seemed like too much of a hassle for eight rounds of chemo, but I'm resigned to it now. I don't like having to ask for a ride home--such a little, silly thing pushed me to the "no port" side. Sometimes having the decision made for me is better for me. At least this cancer stuff got me out of a wedding shower that I was dreading!

DazzlingEagle

I am glad you are getting the port. Don't worry, you will do fine getting the port surgery. I hope they put you under so it goes by fast but they'll explain whatever procedure they'll use. I was really hung up on the port and knew I should have one but I couldn't wrap my mind around it. I had an office visit the week before I had my port installed with the surgeon who placed it and he showed me the little port and tried to explain it to me.

He was going to use the vein in my neck but it was too small so I had an extra place of bruising and soreness to heal which wasn't fun but everything is completely fine now after about two weeks. You can't even see the little port under my skin. It's on my left, a little above my breast, on the opposite side of the breast cancer. There is a slightly raised scar line where the surgeon cut to slide in the port. I've been using coconut oil on it so the scar doesn't get too hard and it looks and feels okay.

Then after I had the port installed, I went back to the oncologist office for the chemo teach, I was telling the chemo nurse how I still didn't even understand how the port works. And she explained it to me again and a lot slower and showed me another port and how they put the needle in and there's a little back on the port so the needle won't go through the port into somewhere it doesn't belong. That's when I finally understood it.

Is there anyone that can stay with you when you get home from the port surgery for at least a couple hours? If you are under anesthesia, can someone stay with you that night?

DodgersGirl

Well, I was "off grid" for most of yesterday. Chemo kicked my butt all day......hoping today is better. Just could not keep my eyes open or my mind alert all day Friday. Thinking some of that is the pre-med chemo stuff wearing off. I the day feeling pretty normal but early morning was just "out of it", just wanted to sleep.

Minor twinges of bone pain from Neulasta but not I had anticipated so maybe the Claritin trick makes a huge difference?

Stopped my anti - nausea pills today, but going to carry them with me like a crutch for a while.

eicats - so very sorry to hear of your news. Wish there was something we could say or do to change that. Prayers to you, for sure.....cancer sucks.

tls5141

jlbinpdx. I would highly suggest the port if you are doing AC. I wasn't given the option but was told AC is highly toxic and if it just goes into the vein by IV it can burn pretty bad. Had my port accessed yesterday for my first chemo- no issues, they didn't need a spray or cream to numb. It may be that I have been poked and prodded so much with IVF injections prior to starting chemo and all the oncology tests ordered that it didn't even phase me.

I am also working FT through this. I took the FMLA intermittent leave of absence through this for appts and if there is just 1 day I'm just not feeling well from the chemo. Luckily my oncology office is working with me and scheduling all my appts early morning or late afternoon so I can at least work a half day the day of my appts. Took a full day off yesterday as my first chemo was at 8am

The insomnia is real. I took a melatonin last night to get me to sleep, tossed and turned and here I am wide awake right now. Recommend melatonin as well if you aren't big on medications like ambien

Eating someone every 2-3 hrs while away is very annoying. It's going to take sometime for me to get used to. I fear gaining weight because of this even though I am eating something small. It just seems like a lot of food. Also remembering to rinse my mouth everytime after I eat something is going too be hard to get used to as well. Sores in my mouth scare me.

I had a friend recommend cocout water to me to help with hydration and it's jam packed with potassium. It comes in flavors as well. I can't drink it straight as I find it too strong but I dilute it with some water and I'm good to go. Just sharing some ideas as this helped me.

Momojcbc

eicats- I hate hearing that. Thinking of you.

Ladies- Is anyone else having trouble following replies. I am having a heck of a time keeping up on this forum. I started a Facebook group just now if anyone else wants to connect there as well. Here is the link

https://www.facebook.com/groups/283579632099000/

Rikki320

Good morning Ladies

Grateful to up and moving this morning..truly grateful.. last night was rough for me trying to sleep. I was itchy all over so I jumped in the shower. Trying to stay proactive. Still constipated ..it's the sleep medication clogging things up so I didn't take it..let's see what happens.Momo I hope u feel better.

CANCER REALLY SUCKS!!!!

BSchutt

Hello, ladies, my first post here. I just want to thank this site and all of it's members for the very helpful information and encouragement of everyone going through this awful diagnosis. I love the special bonds that are being created and the sense of humor that comes out because we all need that, for sure.

I first was diagnosed Jan. 17 with Triple Negative BC, 2.9cm, stage 2B, grade 3. I had three lymph nodes removed which were negative. I started chemo AC of 4 rounds every two weeks on Feb. 16. I've finished those rounds and will start Taxol and Carboplatin combination weekly starting next Thurs. with the Carbo only every 3 wks. I cut my hair really short for the first infusion and by the second, I just buzzed it down all the way because it was coming out in the shower and on my pillow. Use lots of lotion, ladies, because the chemo will dry you out. The last round was a tough one for me but I got through it and you all will, as well! I've heard of people using ice packs for the feet/hands to prevent neuropathy during Taxol but I'm not sure if I could handle being cold....I've already gotten to the point that I'm cold all the time. Come on summer!

I plan on having a bilateral mastectomy (both breasts) when I'm done with the 10-12 wks of T/Carboplatin. Possibly radiation afterward but I'm hoping not, haha.

I asked to join the new FB that is being set up so I hope to see some of you there. I wish all of you the best on this journey and pray the SE are not too bad. Everyone is different and experiences it differently. ((HUGS)) Peace and Love to you all!

JLBinPDX

BSchutt, as you're on the other side of where most of us are (from this thread), I'm glad to hear your experiences. I start chemo on Wed and am looking forward to this weekend to feel empowered and ready. I'm going to crockpot and freezer meal cook, going to shop Goodwill for hats and scarves (and then wash the hell out of them), get a chemo bag together with cool books and snacks, get some home remedies ready (the mouth rinses, maybe ginger tea), plant an herb garden, and volunteering at a barter cafe for homeless and those struggling with challenges as big as mine, just different from mine. If this array won't help me feel in control and empowered, nothing will, right!

Also thinking about my hair today. I like my hair but have always been the "just-cut-it, if-I-don't-like-it, it'll-grow-back" type so not overly, overly concerned. Wondering if anyone's done anything crazy for the three or four weeks you had left--bright red, super short and cute, or I don't know. Just thinking if there's some empowering hair thing I can do before I lose it all. I appreciate what you said, BSchutt, about just shaving it. That sounds less traumatic than seeing it shed everywhere (and clog your drain and dirty your sheets and pillow). I think I'm with you there.

Any home remedies or recipes or things that helped you after a chemo session? Much prefer natural than prepared meds but any of your strongest suggestions would be welcomed.

utjoy

I will never be able to say enough how grateful I am for this site!

BShutt...I joined the fb group, too!

JLBinPDX - What an amazing weekend you planned for empowerment!

I have a mess going as I'm in the middle of a renovation...master bedroom and bath...! The hair thing...I have a 2 year old granddaughter (a redhead) that throws little temper tantrums and PULLS her hair out for spite. She's not as bad as last year, but, I'm thinking I should NOT be around her when my hair starts falling out...!

Momojcbc

Riki- I ended up having to take Miralax for the constipation. But I know once my body doesn't go I have to do something or I'm miserable.

Bschutt- welcome I see you found the Facebook group! Ya, I find it a little easier to reply there. I am anxious for my hair to fall out mostly I just want it gone so I can stop thinking about when it will happen. The cold caps did not sound fun to me at all!

Jlb- I chopped my hair short but it wasn't that long anyway. I think I'm ok loosing it but we shall see when the time comes. I found a great website on a lady that has a lot of natural/ organic/ essential oils. I will post the link.

Momojcbc

http://marnieclark.com/diet-and-cancer/

Jlb anyone else. Above is a website I found helpful. Lots of info and all things breast cancer and more

whirlwind

Momojcbc Great idea on the facebook group!! You may want to edit your original post that appears at the top of every page on this topic, and put the link to the facebook group there as well.

I'm headed over to facebook to join now.......

~Kelly

tls5141

I want to join the fb group but can it be not only closed but private too. I am only letting people close to me know my dx at this point. I'm 28 and have many people from college etc on fb and I don't need everyone knowing my business. It's one thing that I liked about this page that it was separated. I never post fb status' and am not planning to on my diagnosis, etc. I just don't want to join the group and everyone can see I joined it. I hope this makes sense. I know at one point a lot more people will find out. I live in a small town. Right now I am continuing to try to digest this all myself an the only people who know are family and friends who reach out to me

JLBinPDX

tis5141, I am so sorry you're here. It's bad enough being 57 and dealing with it, let alone younger than my daughter. You get to let who you want to know and when you want them to know. I think it is all up to you exclusively. I think that, for me, once chemo starts and I lose my hair--pretty darn likely--I'm going to be pretty okay with just putting it out there. But I'm kind of like that. You're more like my daughter and she'd keep it tight to herself. To each, her own. It hurt my heart to read that you're going through an even stronger diagnosis at such a young age. You are in my positive thoughts and vibes.

Momojcbc

Hi tls- I wasn't sure if you ladies would be able to find it if it was private. I am totally okay with that and understand. I changed it just now, so let me know if you have any issues. Hope to see you there.

tls5141

It's not letting me join the group now when I follow the link. It says

"Sorry, this content isn't available right now

The link you followed may have expired, or the page may only be visible to an audience you're not in."

Hmm...what is your facebook name? Maybe I can find you and become friends then you can add me from there or vice versa. My facebook name is Tonya Lynn. Pic is of my boyfriend and I. I am in a gold dress- waist up. Shows my work as Blue Mountain Health Systems.

Momojcbc

I bet it is because it is private. Here is my profile: https://www.facebook.com/lubmyboys

Friend me and I can add you. I can't seem to find you.

DodgersGirl

Hello everyone....sure hope we are all learning how to deal with this temporary new way of life.

to those of you how have already had surgery, please share how you got through it. Tips, exercises, tricks for getting in and out of bed, etc.......as much as chemo isn't fun, I have trepidations about that surgery (mastectomy)

as I wrote yesterday, chemo kicked my butt on Friday. I could not keep my eyes open or really stay awake during the day yet still finding it hard to sleep all night. I got up Saturday morning at 1130 pm Friday and tried to sleep in a recliner (which was hit or miss) and got up this morning around 4 am. Not so bad while these early mornings happen on a weekend when I know I can take naps (never ever been a nap person but sure am one right now) I think I am having trouble sleeping all night because I seem to get a headache at night so this morning I took something for the headache and was able to sleep a couple of more hours in my recliner so tonight, I will take a Tylenol before going to bed to see if I can sleep a bit longer. Tomorrow is a work day so really want to be able to stay away!

Speaking of working full time, to those of you who have posted that you are working full time while going through chemo, my hat's off to you. I missed Wednesday last week as that was my first chemo treatment and missed Friday because I was wiped out. Hoping this upcoming week though will be more doable.

Yesterday I went grocery shopping and was outside watching hubby work in the yard for a big chunk of the day. So hoping today, I will feel up to some laundry and cooking.

I stopped taking my anti-nausea meds after taking them for 3 days. I do still feel queasy if I go too long between eating something. I find having Cheerios on hand very handy for snacking. I have been able to tolerate most foods so meals have been easier than I anticipated.

Did not have Neulasta bone pains.....maybe they are cumulative? Definitely will take Claritin while on this chemo regime.

Hoping that this week will be about feeling better each day. I am on an aggressive chemo schedule so only have 1 week between AC treatments so this week is what I expect to feel stronger and stronger before my next chemo a week from Wednesday.

momojcbc - is that you are seeing? feeling better and better before the next round of chemo?

and, lastly, as many others have said --- THANK YOU for each of you who are here sharing with us......I find it helps a lot when I don't feel so all alone.

Lindacim31

Hi I will be starting chemo on April 20. Having my port put in on Friday. I will be getting pacitaxel and herceptin for 12 weeks then herceptin every 3 weeks for a year. In between I will also have 5 weeks of radiation. Anyone out there have the same treatment plan? Positive thoughts to all

Momojcbc

Dodgersgirl- I was really sleepy after chemo too. I started chemo on a Friday, Saturday and Sunday were rough, Tuesday after chemo I really started feeling good. I am still feeling good over a week later. My son's blood counts usually drop at about a week and a half or so after chemo, so I am wondering if that will happen to us? I haven't seen anyone talk about that on here. Anyway when that happens he gets tired but that's about it. I am guessing (and hoping) you will feel better tomorrow.

Hi Linda- sorry we have to all meet here. I have not seen a treatment plan like that, but I am new to all this.

Momojcbc

Hi Ladies-

For anyone that wants to join the Facebook group, either message or friend me on there and I can add you. We have updated the group to private. My FB link is below. I find it easier to communicate there as this thread makes it difficult to reply to each person.

https://www.facebook.com/lubmyboys