April 2015 Chemo Crew... Starting in April? Please join us!

KBeee

Gingee, it is not trivial at all!!!!! It is a huge deal. It is different for everyone, but having 3 busy kids...all of their friends and teammates know, working for our City...all of the FD and PD know...and most of the other City workers, etc. I deal with the schools a lot with my job. Just this week, I was at a school. I had not been there since October. I had 4 different teachers comment on how much they loved my hair! I chuckled and told them it was a wig because I had breast cancer. They are all a little shocked, but I reassure them that I really appreciate the compliment because it makes me feel good to know I look good, and that I kicked it once and plan to kick it a little further to the curb this time. Once they know I am at ease with it, they are as well. At work, I work with 98% guys. They seriously know more about how my breasts have been cut off, filled, recut, etc than anyone should know. I told them from day one to ask questions if they had them, since likely a close friend or family member would one day be diagnosed. Lots have questions and I answer them all. My workplace is more like a family though, because we eat meals together and sleep there, so it's a little different than most workplaces! I also used to be a middle school teacher, so I am used to answering any and all questions! Basically, go with your comfort level. And once you share, people will offer to help...when people offer to help, give them a simple task...I'd love a freezer meal to make when I'm not feeling well...I'd love if you could cut up some fruit and drop it off sometime. People feel helpless and truly WANT to help, so I let them, which frees me up a bit. This is payback for when you've helped others, and you will have many, many years to pay it forward later.

Supernannymom

Lynn - love your cheat sheet and your list of questions!!! I updated my info on the cheat sheet! So...tomorrow is the big day - round 2...

My biggest issue and the one still facing me is the extreme nausea. They have decided to fill me with more IV meds during chemo and extra fluid (Thanks Bek!), and they are bringing me back in the next day for more IV meds and fluids.

I am so fearful since my experience was so terrible, its hard to not get really stressed out. I lost about 9 pounds over the course of 8 days - I mean I am not a skinny girl so it certainly won't be a problem, but they way I lost it was miserable!!! The neulasta didn't bother me though - which is good (I woke up a couple of days with an achy back - like I slept wrong but that was it). Now I am also on a blood thinner shot once a day - and my MO said I will be on it for 3 months. She said where the catheter goes into the vein it bends and then follow the vein. Apparently is slowed the blood flow enough that the clot formed - so I am on blood thinners until they take the port/catheter out.

They also prescribed me priolosec, after round 1 I had a horrible acid stomach. Today is day 14 since my first infusion - and I was told day 17-20ish the hair will go...my had gets itchy from time to time, but so far that is it. Anyone have any insight onto when their hair left? I do have a nice collection of hats and scarves started- I wanted to be prepared!

Round 1 was pretty bad...so lets hope it only gets better from here!!!

ksusan

Well, a seroma (I assume) has opened at the top of my right incision. Oh, joy. Seeing the surgeon later today.

littleblueflowers

Lynne, thanks for adding me!

Supermom, I had the same nausea issues....my round 2 isn't until next week, so please let us know what they change in your routine and if it helps! 😨seriously....I'm afraid to weigh myself it's been so long since I've had real food....

Does anyone know if there is a thread here for wig care? If not, any tips? I made the mistake of wearing mine while driving with the top off in my jeep.....baaaaaaaaaaaaad idea.....

Hope everyone is feeling strong today! Xoxoxox

jen

mamajencoz

gingeel... I chose to tell my inner family first, then move to friends, then went to teachers and out from there. Its hard to say at what point it gets easy to tell people and as horrible as this sounds.. I became a broken record. I just seem to rattle it off at times followed by I'm GOING TO BE OK.. stop tearing up. I know that sounds bad but after you tell so many people it just is like regular conversation. I had to put myself in check because I told myself.. the ones I'm telling have only the past 30 seconds to deal with it and I've been living with this for a month or so now. And warning you will see a pattern... they #1 want to comfort you (oh my goodness what can I do to help you) #2 try to relate (well they know of at least 1 person in their life time that had either the same cancer or some form of disease that they were healed from. I have to apologize at this point for sounding negative... MOST of the ones told are genuinely compassionate and just want to help you feel better and confident. Then there are others who push their "I just heard of ______ that someone in France used and it cured their cancer so if you want to try that instead of putting that "Chemo" into your system" As I said, MOST people just want to be a good friend.

Also to help everyone follow what was going on so I didn't have to go over the story again and again.. it helped for family that lived far away too.. I began a "blog/site" on CaringBridge. That way you post once of what's going on and they can either get an email of the update or check it out when they want to. I have mine secured and by invite only. That way I have control who goes on there and personally see my journey. They have to give me their email address and I send the invite before they can see it.  It's free.. there is an app for smart phones.. and they can comment on journal entries so they feel involved too. It's simple and easy to do. It made my phone stop ringing 100 times a day. You can also create a thing on Facebook too.. just make it private if you want to.

I hope this helped.

KBeee

lbf, for the wig, wash it in a gentle wig shampoo; do not use regular shampoo. Basically, you dunk it in cool water, put a tiny bit of shampoo in the water, slosh it around a bit and dunk in clean cool water to rinse. Then dry on a towel (don't wring it out) or a wig stand. Do not comb it until it is totally dry. Wigs bounce back very well.

ksusan, I hope they can drain it and that it does not return. Sorry you have this added complication. They are uncomfortable!

supernanny, It looks like they have a good plan in place. A good friend of mine from home who mentored me a lot through my first diagnosis had a horrible time with AC #1 too. The docs figured out what worked for her then, and her last 3 were much better.

GingerChi

Well, day 3 and I feel better. No nausea today YAY! I slept well last night. My head feels like it weights a ton, but other than that, I'm doing good! I feel a little achy but not bad. I hope all of you who had treatment yesterday are doing well and the SE are few!!!

ksusan oh no! I'm sorry to hear that, let us know what the BS says...I have been worried about that myself since I still have swelling off and on.

Welcome crossmom! I hope your fatigue lifts soon! I just had my first treatment Monday and I wonder what every day will bring, these SE are something! Glad you have a supportive hubby, sorry he is having SE along with you.

gingeel, after I told my close friends and family, I set up a closed facebook group, posted about my diagnoses and upcoming surgery, then added friends and co-workers to it. Most I added to the group heard about it for the first time this way. Those with me at the hospital posted updates through my surgery and that way anyone interested could stay informed. Now as I go through treatment I update the group, and I am amazed at the support I'm getting! This may not fit your situation, but it worked well for me.

GingerChi

supernanny, I'm sorry you had such a rough time!! I hope the changes will make the next round much easier on you!! I havent started losing my hair yet, but I was told when your scalp starts tingling/itching that the hair loss comes soon after. I was also told that Seabreeze astringent helps the tingling.

melb44

Went to my MDC today and was blindsided. When I met with the oncologist on Monday she was going to recommend TC 4 cycles every 3 weeks. I researched cold caps yesterday and decided I thought I could do it. Today the said instead they are recommending Dose Dense AC-T 4 cycles of AC every 2 weeks and then 12 weeks of T.

It seems like overkill to me. The tumor is fairly small with no lymph node involvement. Is so much chemo necessary? The decision for chemo was based on my mammaprint score which came back high risk. I have 24% chance of the cancer returning with and chemo and 12% with the chemo.

I put a call in to my oncologist to ask more questions. Anyone have any insight?

Fran2014

Lynne- thank you so much for putting together our "cheat list". It's almost overwhelming to know that we are over 40 amazing women going through this journey together!

Jen-I must admit,I broke out into such a huge smile & laughed when I read your post..so funny about the wig and Jeep ride!! You motivated to finally get around to writing a letter to the wig company, Jon Renau. I have been so dissatisfied with my wig purchase (since this is my 2nd time around, I chose to splurge a little and go with human hair rather than a synthetic). Well, unfortunately, due to the construction of the wig, it has been quite "challenging" to maintain this wig. I know my letter probably will not result in any real resolution to my situation but at least I felt like I alerted the company to my concerns.

In regard to hair loss, I too, decided to cut it shorter back in Dec. (since I needed those 4 neo-adjuvant treatments). When I lost my hair in January, it started off started coming out slow for a day or two (not much itching) but then BAM all in one shower-most of it was off (came out in clumps). I just collected it in a pile and then it was over. It's just beginning to grow back in a very little bit but it will all be gone in a week or so again  (because of the dense dose new meds). I did buy this cool "partial" wig hair piece (it's got a head band with hair that hangs straight on the sides but no hair on the scalp). I wear it with caps and baseball hats-so much more comfortable and easy. Figure it will come in handy when running to the grocery store or at my daughter's lacrosse games and stuff like that. Also, a friend of mine picked me up this cool scarf covering from Dick's Sporting Good-it's called Buff (no joke). It's so comfortable and looks like a blue bandana-slides right on your head-no fancy tying (as I am so spastic with stuff like that). I think it was intended for skiing or outdoor sports but what the heck-it's comfortable and cute! Figure it's going to get hot over the summer and keeping cool will be a must!                     Hope these little tips help.

ThinkingPositive

melb...that makes me a little nervous for myself. I had TC and was almost the same stats as you with one lymph node positive. MY MO put two options in front of me. ACT/TC. Would not tell me which one. Did not have the Oncotype as he said the score would probably be high and it would take 3 weeks to get results. So after much research and finding out about heart issues with ACT I chose TC. Now I am worried that maybe I should have gone for second opinion... you want to believe what they tell you and I would have thought if he didn't think that the regimen was okay he would not have provided me a choice or even select it? I am sure there are a lot of people who are not provided with a choice. What would be the reason that they provide a choice? Can't go back now...so I have to live with my choice.

Beachbum1023

Fran2014, I too purchased a really lovely but expensive human hair wig, and I love it. When I went to pick it up, they showed me how to wash, blow dry, and flat iron McKenzie. I spend so much time wearing her I thought she needed a name! Kinda like a close freaky sister I never had. I usually wash her every 7 to 10 days it just depends. If you have any questions that I may help with I would be happy to compare the notes. I love my wig, and I get compliments all the time. Makes me wonder how bad my real hair was!! Let me know if I can help. Cheryl

melb44

I am sorry to make you nervous ThinkingPos. I really don't think you need to be. I think my docs are being overly cautious which I guess is good. I am getting a second opinion. My oncologist was really nice and said she wants me to be comfortable with the decision. I am still having the echo tomorrow so I have all the facts and having my port and sentinel node biopsy on Monday. I hope I can get the second opinion ASAP.

Alibeths

Hey Gineel!

Its kinda weird....I told everyone from my work, but rarely,do I talk about it with my daughters friends parents...it is SO crazy!!!!!!!!!!! I had a wig (the first time) and never wore a scarf or anything..SO i think a lotta people didn't know. Its all just so crazy...Did you start yet?

Alibeths

Hey Gineel!

Its kinda weird....I told everyone from my work, but rarely,do I talk about it with my daughters friends parents...it is SO crazy!!!!!!!!!!! I had a wig (the first time) and never wore a scarf or anything..SO i think a lotta people didn't know. Its all just so crazy...Did you start yet?

Rpayton

thanks so much for the warm welcome! Friday is the day. More to be revealed... Those of you that have been there thank God for your share!!!

lemonadehk

Hi all, had my AC #2 yesterday. In a few hours after I got back, I started to feel horrible. Shortness of breadth and chest discomfort, along with nausea. It was so uncomfortable that I cried by myself. But thankfully, after a night of sleep, the shortness of breadth and chest discomfort is gone.

Does anyone else experience shortness of breadth with AC? I didn't experience it with my #1 dose. Shoul I be worried? Maybe I am being too sensitive knowing its cardiotoxicity?

Lemonade

KBeee

Lemonade, let your MO know. It could be a reaction to one of the meds or premeds. Sometimes the steroids can cause that.

MelB44, remember that oncotype and mammoprint do not show risk of any recurrence, but distant recurrence, for which there generally no cure; they just manage things for as many years as possible. That is likely why they are being aggressive. A second opinion is always a good idea though. You need to be comfortable in your decision, either way.

Howare things going for all at the chemo bar this week?

Positive_spirit

A quick note due to low energy.

Allison - so sorry that you are hospitalized. Thinking of you and wishing a quick recovery.

Lynne - great set of questions for training. Some infusion centers offer integrative techniques like massage and other mind-body things

Kbeee - I hope things are moving

Karen - lots of liquids and sleep. Strange but I sprayed citrus rind into my nose (clementine or orange) and my cold was almost gone the next day. Something to do with VitC and clearing the nasal passage. Saline cleanse your nose might help.

Crossmom - take those anticonstipation drugs religiously. So sorry that this is so much harder on you!

Vanmamma - thanks for letting me know. I feel so much better not being the only one in those stupid "margins' ...i.e. it's rarely and unlikely that you will get this reaction. I do. Of course.

GingerChi - love that you went out for lunch!! Hoping that the SE are less for you.

Hugs to all you wonderful women. You inspire me everyday and break the isolation.

Karen30

thanks everyone for the advice- I've had lots of OJ , fluids etc so let's hope by tomorrow this drippy nose is resolving.. Saw my breast surgeon today, the only pending result is the genetic test - my treatment plan is in place for lumpectomy after chemo as long as that is negative, if not then it will be mastectomy- I am hoping for the former but my luck has been so shitty recently that I'm not holding my breath we will see...

Hope everyone is having a good week- hope those who are recovering from treatment feel better soon and those headed to treatment this week have an easy time of it- you are all awesome and I feel very grateful for each and everyone of you- alone this is much scarier place!!

lovlilynne

Hi - it's been a long day for me. I went to Cancer Center at 9 AM ("teacher" was late, of course), and had "training" which turned out to be more about info on SE, but I did ask a lot of my questions anyway, but surprised to find out that she didn't know a lot of the answers - especially about practical stuff - like do they have a refrigerator I can use or can I get WiFI, etc. She downplayed SE like mouth sores (said that Neulasta helps with that ?) and bone pain.

THANK YOU ALL FOR BEING HERE - YOUR SHARING HAS HELPED SOOOO MUCH!! I feel well prepared, mainly due to this DB.

So, I leave there - WITHOUT my treatment day - really? The person who is supposed to schedule was not there, but was supposed to call me - but I never got a call. I need to know if I'm going to arrange for rides. Grrr.

I go over to radiology to get my port placement - I decided to not have any sedative (thanks KB for the idea/knowledge), and everything was going fine. The nurses commented on how chill I was, and it was true, I was not feeling particularly nervous at all. After they got IV antibiotics in me, they took me to the procedure room and got me prepped. Then the doctor was delayed - probably by about 30 minutes or so - finally, we get started, and aside from the burning from the lydocain, it was fine, he told me everything that he was doing, etc. They were joking back and forth about the music that the nurse (Ed) chose. Then it was time to insert the catheter. They had the heart monitor on, and I hear my heart slow down. Then stop. Then start up again, now faster, and then slow, then fast, and the doctor calls the nurse back - by now it's getting faster and I can feel it beating in my chest. The next few minutes are a blur - but I started to feel really poorly, it hurt, and they were massaging my neck, and I guess they gave me some medicine to slow my heart rate, then they had me take deep breaths and blow my stomach out really hard and hold it.

I have to say, I really thought I was having a heart attack and that I was either going to die or pass out or something. My father died of HA at age 57, so cardiac issues are not far from my mind. Although I was having these thoughts, I wasn't particularly panicked - I don't think I was contributing to the problem - it was my body reacting, and I just gave myself up to it - very fatalistic feeling of "there's nothing you can do about it, so just let go".

But, they got it under control. I had some pain in the middle of my chest for a while, and my legs were shaking uncontrollably, but I started to feel much better. It was really scary though! The dr. said that it wouldn't happen again - that it was just a one time reaction of my heart, but I don't feel that confident! I'm glad I'm getting ECG tomorrow - if there is something wrong with my heart, they'll see it, right? Besides the HR scare, the worst thing was keeping my head completely turned to the left for 2+ hours - it doesn't hurt now, but I think I am going to suffer tomorrow for that.

I finally got released - 5 PM - right into the rush hour traffic, took me 30 minutes to go ~1 mile. Met my mom, sister, and cousin for dinner. I'm feeling ok - have the ice on the sites for now. It's still very numb, like my breast was after LX. I read some women had named their port, so I decided to name mine - it's called Newbury. There is a beautiful seaside town in Massachusetts called Newburyport (http://newburyportchamber.org/), I'm going to think of that every time it's accessed!

-Lynne

Stephmoen

my first day of chemo is tomorrow not lookin forward to 6 hours at the chemo lounge but ready to get this done and over! Took a little Xanax hoping to get lots if rest tonight

lovlilynne

God, do I have the longest posts or what? How boring.

Gingee – not a trivial question, I really struggled with telling people too. For such a long time, there's nothing to tell – I mean, it starts out with you have to have the biopsy – maybe it's not cancer, then it is, but not sure what treatment – if surgery/rads, no one but my manager has to know anyway, then it's chemo, but waiting to know how much/when, etc. And, it's not exactly like you can have that conversation, "hey, how are you doing?" "Great, except I have cancer." It's just too awkward. AND during it all – well, it's the biggest thing going on in your life, even if you are waiting for surgery, results, treatment – let's face it.

For me, I told my manager, then co-workers as I felt that I wanted them to know why I was taking time off. As far as friends and people I see – I still haven't told my next door neighbor. Granted, I don't see her every day, but she and I are more than friendly. My daughter took care of telling everyone at school – I didn't tell her to keep it to herself, so I guess she blabbed it to her teachers and students! You could also tell just one of the teachers and/or moms that you like and trust, and ask her to tell others so that you don't have to have the awkward conversation over and over again.

Julie, best wishes with #2 tomorrow, I hope they have the nausea stuff worked out. Stephanie and Sheila too!

Laura and Stephmoen, best wishes with #1 tomorrow.

AnewBeginning, check in and let us know how it went today.

Ksusan, NO! That sounds painful – hope BS can take care of it quickly for you.

Jen – I have a Jeep too! I have a Wrangler Unlimited in commando green. I was figuring that I'd be rocking the commando look when I had the top down – so wigs stay on??? I also bought an army green cap that I thought would look cool, but I don't want to lose it to the wind.

Mamajencoz – great advice on telling people.

Melissa, I hate when they give you conflicting advice. What is MDC? I agree that they are recommending most aggressive treatment, but I don't know much about the mammoprint. I can tell you that the hair loss is mainly from the AC, and that you can do the T dose dense also (every 2 weeks), that's what I'm doing.

Cherie, glad you are feeling better.

Fran, thanks for the tip on the "Buff", I'm going to check that out.

Lorraine, you know what MO said to me? She said I probably would be fine (actually, I think she used the word "cured") with just surgery and radiation. She said all this other stuff is just extra insurance to be cured. I was surprised, but it helps calm me down about what is the absolute "right" treatment – it sounds like we are all doing all that we can.

Lemonadehk – hope it's not your port!

Karen, are you going for number 1 tomorrow? I have you down for Friday, the 17th.

Again, thank you all for being here and sharing your journey, it is so helpful.

-Lynne

littleblueflowers

wow lynne, that sounds terrifying! Hope you are ok! Sending thoughts of healing and peace to you!

Karen30

Friday is #1 for me Lynne so you have it down correctly- I just need to get this cold better by then!

littleblueflowers

Is it possible to actually die from acid reflux? 😵 Dear Stomache, I am so sorry I fed you green chilli stew for your first real food meal. I got cocky. Please don't dissolve my entire body in revenge....

greenae

Wow, a lot of stuff going on with all of us. I hope things can settle down, and everyone' s ports and SEs behave.

I go for Round 2 of TC tomorrow. I have to say I have felt pretty good the past 12 days. My MO at NYU rold me there is no difference in outcome/prognosis for me whether I used ACT or TC. So I let her choose TC for me. Jeeze. I just want to get thru all of this. Not ready to think of the after tx phase. Funny, but it makes me feel "safe" that this stuff is zooming around my body killing any nasty cells. I think I will need to be sedated for future screenings and awaiting results.

I had some headaches, eye pain and fatigue, SOB, and back and leg pain from days 4-8 last round, so I may lay low for a few days. Hugs to all of you, may everyone's round 2 go easy.

And be sure to register for Look Good Feel Better! I went last night, had fun, got really nice makeup and tips for scarves and hats. Gonna try to post my makeup face and wig. Crewcut getting thinner, so i will see if blondes have more fun!

Hugs to All!

Arlene

greenae

Wow, a lot of stuff going on with all of us. I hope things can settle down, and everyone' s ports and SEs behave.

I go for Round 2 of TC tomorrow. I have to say I have felt pretty good the past 12 days. My MO at NYU rold me there is no difference in outcome/prognosis for me whether I used ACT or TC. So I let her choose TC for me. Jeeze. I just want to get thru all of this. Not ready to think of the after tx phase. Funny, but it makes me feel "safe" that this stuff is zooming around my body killing any nasty cells. I think I will need to be sedated for future screenings and awaiting results.

I had some headaches, eye pain and fatigue, SOB, and back and leg pain from days 4-8 last round, so I may lay low for a few days. Hugs to all of you, may everyone's round 2 go easy.

And be sure to register for Look Good Feel Better! I went last night, had fun, got really nice makeup and tips for scarves and hats. Gonna try to post my makeup face and wig. Crewcut getting thinner, so i will see if blondes have more fun!

Hugs to All!

Arlene

ksusan

I saw the surgeon this afternoon. He said it's not a typical seroma (lymph-filled cyst). It's at the top of the incision and he hypothesizes that the knot that tied off the internal stitches may have gathered a little pool of lymph around it; when the stitches aren't touching flesh, they don't dissolve and the body works to eject the material. He thinks that I just formed an abscess to spit the material out. Happily for me, there wasn't enough fluid in the area for him to need to aspirate it. He'll re-evaluate it in two days.

Thinking good thoughts for everybody, hoping for an end to nausea and other side effects, and that this can just get boring for all of us rather than so filled with unknowns and fear.

Stephmoen

is anyone else on this thread her2 positive and if so what is your treatment regimen just curious??