April 2013 Chemo Group

Rosina0015

Carol - thanks me too And I get the dread too. It's like a bunch of kicking and screaming in my head. But today I arrive at my treatment and remember how lovely the nurses and staff is. And it was easier to relax. I hope you get in as much worry free time as possible.



Virginia - I've decided not to wear my wig or covers as much. Im comfortable and I like it Plus the hot flashes makes me want to rip it off my head lol. Your head looks peachy

Jen987

Rosina0015 - I go without a headcover at home most of the time. Scarfs and hats start to itch and I just can't take it anymore. I apologize to my family when I whip them off as soon as I get in the house. Wish I had the courage to go out in public bald. It's bad enough the sympathy looks I get with a hat on.



Well, I've made it through this TX without getting the Neulasta shot even though my blood work on Monday showed low WBC. I feel good so if I can make it the rest of the week without running a fever I should be good. I haven't had a killer migraine this time around so I really think my body didn't like the Neulasta injection. The only side effect I noticed that has increased is fatigue early on. And of course my taste buds are gone again. I just keep telling myself half done, you can do it.



We all can do it. Women Warriors unite.

Pattysmiles

Pamela,

I am so sorry you have to wait again. I agree, 2013 sucks!

Hopefully you can take advantage of the good weather and do something fun during those two weeks. Please turn it around and make it work for you!

Pat

6cats

Heather -- Thank God someone other than myself gets those headaches!!! If I mention it as a chemo/Newlasta side effect, people look at me like I'm crazy. I see my MO tomorrow for a one-week post chemo follow-up. Am going to discuss it... I can knock it with strong meds, but then I have to deal with the "plugged up feeling" -- so I can't win.

I should start a new fun thread on this, but I told our 16yo that they gave me steroids before my first chemo... now, every other day it seems we have a discussion about me having "roid-rage" -- I just realized that some things he accused me of mis-behaving about were before my chemo and maybe even before my diagnosis! So... we will have a fun conversation tonight! Roid-rage.... geez! 16yo males.... geez!

PeggySull

Sorry Dehla(sp?) that you have to go through this twice. I am tnbc too and have just finished my chemo and mastectomies.



When I was first diagnosed, days later I shopped for a wig. I was completely clueless about cancer. I got to talking to a fellow patient there who had a recurrence around the same time I got my diagnosis. I asked her, naively to the max, if treatment would be easier the second time around since you know more what to expect. She looked at me like I was crazy of course, but politely said, "it's worse the second time." And then she walked away.



I now know that it will be harder when / if I have a recurrence. My heart goes out to you, brave woman and I will try to follow your progress as you beat this a second time.



Hugs,

Peggy

heather214

Rosina, glad that all is going well, thats awesome!

6cats, would love to hear what your doc has to say. I see mine on Friday, I plan to do the same.

Chemo #3 tomorrow, yuck. I just had 2 great days, but staying focused on the goal. I honestly am in awe of all of you working and running around with all this energy, I am just wiped on a daily basis. No matter what I do. It is frustrating.

Thought for the day:

Tricia81

Thanks Ladies for all your encouragement and prayers! I'm getting released from the hospital today. My WBC was only at 240 and my MO orginaly said he wanted it at 500 before discharging me but I begged and pleaded with him this morning and he finally gave in. So I'M GOING HOME! I know it was only four days but I was starting to get depressed. I mean the entire time I was here was like a constant reminder that I have cancer. At least at home Im distracted and can live a semi normal life. And Im just not use to sitting around all day. I'm a mom of two young girls, ages 4 and 2. So they keep me very busy. And I'm just not good at "taking it easy." Plus we don't have cable at home and Im not a fan of daytime tv. So I was going stir crazy here. Anyway I can't wait to go home hug my girls, take a long shower and wash my hair....oh that was another thing Im 12 days post my first treatment and haven't lost an hair yet, so the entire time I'm in the hospital, I'm praying my hair doesn't start to fall out until I get home lol.



Anyway, enough about me. All of you beautiful ladies getting chemo this week will be in my thoughts and prayers. Have a good Wednesday everyone!

Jen987

Welcome home Tricia81. Take it easy and be kind to yourself.

Retta175

This is my 16th day after chemo #1 and my hair just started falling out. I'm going in the morning to renew my drivers license...praying my hair stays put tonight and I will buzz it tomorrow. #1 bought me to my knees, I'm hoping #2 will be better!  I'm so proud of all of you, I really don't know how y'all work and mother and do a million things!! All I have done is lay around and complain!

Virginger

wow..the Power of the INTERNET...a friend from college just 'introduced' me to THIS guy....interesting stats about Working thru Treatment..had to share..@ work now..did the 5, 6 and working on the 11....healing powers sent out to everyone......next treatment is Friday... oh and asked one of the nurses..i'm NOT getting the 'shot'...

http://www.wbir.com/video/2343979839001/1/In-depth-Working-through-cancer

PamelaKay

Well, I have my answer about whether missing the second chemo would affect the hair loss: it didn't. This morning (day 16 after first chemo) my hair started coming out in clumps. So, I decided to just take a shower and see how much came out. After the first few passes, it was obvious my hair was history, and I'm thinking I'll just keep going until I get it all out...an hour later it looked like a medium-sized, elderly poodle died in my shower, and I still didn't get it all.

For those considering this method, I can't recommend it. First, you have to have an on-demand water heater (I do). Then you have to have lots of time (fortunately I woke up early). And lastly, you have to have lots of patience (which I ran out of before all the hair was out). This was pretty much the longest shower I've ever taken, but I decided if there's one time in life you get to waste water, it's when you are in this situation. I think if I had kept on, I would have gotten it all out, eventually. As is, right now I have about 10% of my hair left. I'll see what happens tomorrow and maybe have the rest buzzed if necessary. 

And now, for the next episode of Chemogate. Previously on  Chemogate: the young MO saw blood on the bandage over Pamela Kay's surgical wound and freaked out, "You'll get a massive chest infection: NO CHEMO FOR YOU THIS WEEK!" Today, our heroine visits the mature plastic surgeon, who scoffs at the silly MO,  "She's overreacting. This is just part of the normal healing process. You would have been fine with the chemo." Torn between two conflicting opinions, who will our heroine believe? And does it matter anyway, since it's too late for chemo this week or next? Done with Western medicine, Pamela Kay heads to her trusted homeopathic doctor for a remedy to help the healing along. Will it work? Tune in to Chemogate next week and find out!  

kobrien

OMG!! love the chemogate... I have a non healing wound that has put chemo off-- was supposed to start on 3/29-- then 4/15.. Now maybe end of may... Want this going already!!!

raindeer1217

Katie love your quote! How are you handling chemo? I start in a few weeks. It hasn't hit me yet..... (dundun-dunn) scary background music playing. I put on a good front but in all honesty scared numb. Glad I found this site and the warriors that unite!



-Rain

raindeer1217

Hi. Still learning the ropes of the boards not sure how or where to post. (sorry)



I start chemo in a few weeks, I am also suppose to start a new very stressful job June 1st. Short run down. I am selling my insurance agency which has been in negotiations for 8 months. Expected closing was May 1st. I was then hired as a commercial lines manager which was supose to start May 2nd.



Well cancer Dx messed it all up. (grumble) holy crap!!! Amazingly my new job says they still want me!!! Sick n all!!! (hooray!!)



My question is. I am starting chemo soon. Is working a full-time stressful job going to be possible?!



Ahhhhhhhhh!!!!

Rain
Dx 3/13/2013, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2-Dx 3/13/2013, DCIS, 1cm, Grade 2, ER+/PR+Surgery 04/16/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)Surgery 04/16/2013 Reconstruction: Tissue expander placement (Both)Chemotherapy 05/16/2013 Doxil, Taxol

CarolA5587

Love the chemogate episode. Had me giggling. Thanks for sharing that.

Raindeer, I do think it's possible but I also think you need to plan for some days when you can't go. Every body is different so you'll have to see how you react. For me, at least the first time, I found that days 3 and 4 after chemo were two days I just had to stop and sleep. ...and that wasn't a want to. That was a had to. I also had some fever days where WBC were way low. You can't be in the midst of a lot of people on those days. So I worked at home. I'm at work this week (high school counselor) and feel normal. Be kind to yourself. If your new job wants you, and knows what you're going through, they'll be supportive of you taking care of yourself. Congrats on the new job!

Virginia, thanks for sharing the news story. Interesting, isn't it? Guess the breast cancer stories are now grabbing my attention, but even MSN Wonderwall has pics of celeb bc survivors. Many of those I had forgotten also fought this battle. We can do it!

raindeer1217

Carol, thank you for the reply. Helpful indeed. Amazing how even when our health is at risk we still freight the little stuff. Or at least I do. I've gained weight the last month due to not having normal intense cardio exercise.... Surgery will slow ya down! Ha. Then I freight over how my breast look and how much the expanders hurt... Then worry about work... The list is endless.



So thank you Carol for your reply post. I need to focus on the number 1. Getting healthy and well. The rest won't matter if I get more sick.



Hope your next round treats you kindly!



-Rain

MinusTwo

Dingaling:  I'm fairly new to this forum too & sorry we're both here.  My cocktail is also TCH with the addition of Perjeta & the Neulasta shot.  First tx was 4/17 & scheduled every 21 days.  Like you I've had major diarrhea.  I tried the BRAT diet & Kaopectate for two days w/no luck. Switched to Imodium and that stopped it after 3 more days.  But once I went off the BRAT diet & stopped Imodium, the diarrhea was back in 24 hrs.  I wanted to lose weight, but 9 lbs in a week is a bit much.  MO has called in a scrip for Lomotil for me to have on hand if the Imodium stops working.

I'm wondering if the vitimins & supplements play a role?? Anyone know??

As an aside, my hair is shedding at a furious rate.  I've been in denial but going tomorrow to find a 'hats w/hair' and a halo, and maybe a wig & definitely a soft cap to keep off the air conditioning. Although I had it cut short, I just couldn't face a buzz yet.  I so admire those of you who have shaved it all off.

Virginger

Rain...welcome...Sorry your here, but it's a GREAT group of women with TONS of help and advise..the only thing I'll add it DRINK LOTS and LOTS and LOTS of water...chemo is hard on your kidney and liver...and WATER help wash it out of your system...I was a TRUE card carrying member of DIET Coke  addicts....I'm not kidding took @ least two 2 liters to work every NIGHT..and drank More @ home...I got a water delivery system, and had to call the poor delivery guy, after the first 10 days..I'd gone through 10 gallons just @ home....I've only missed 2 Full days....Monday after first treatment...only worked 1/2...was the day of the Boston Mart hon bombing and the place was NUTS...everyone was going 1,000 mph and i felt like I was only going 10....later that week, Thursday only half a day...i lost my voice and kinda HAVE to talk to do my job..they let me run camera for 11p...dont' have to talk...and took all of Friday off...rested all weekend...and have worked every day the last two weeks...even pulled a Sat shift...told em to USE me while I'm feeling good.... sorry for the ramble...just getting done directing the 11pm and it's kind of a RUSH....

PamelaKay, you had me spitting my water out reading your post....Great Attitude is also KEY in beating this...or so I've been told...I've gotten GREAT advise from everyone here and other women about their journey...the Pit Falls and the REAL talk..i look at it as PAYING IT FORWARD....

If your looking for a Director for Chemogate..i might know one or two...lol .....and have you 'started' casting your docuDrama? That might be a FUN game....

Ok..off to check FB...posted a few pictures, and i'm seeing 23 new notifications an 4 new private message..

tomorrow go in @ 11;30 for my blood work before Friday treatment #2....

Best wishes, sweet dreams, and easy peaceful days to all....

OH and PS...what the heck....started my period yesterday...oy vey....wondering when he menopause is gonna kick in...

MinusTwo

Virginia:  Just watched your shaving party & the news story.  What an example for all of us !! You have such class. 

Virginger

Thanks MinusTwo....paying it forward....

indenial

Pamela - love the Chemogate!!! LOL!! Also I've done the same thing, tried to get all the hair (or in my case, stubble) out in the shower. I tried for a LONG time and it just kept coming out & coming out so finally I gave up (as did my hot water!), dried off, and put on a hat so I'd stop touching it & shedding everywhere. Ugh. I'm still in that awkward phase where most has fallen out but there are some clumps of stubble hanging on. I look gross.

Rain, I know some do work but I'm not sure about a high-stress job. I don't "work" but I suppose I do have a high-stress job -- caring for my very intense, high-needs 4-year-old! So far, so good, I've been able to do the stay-at-home-mom thing without setbacks, but I'm only on round 2, and some days wipe me out so I am glad to have my husband here the other 3 days a week! Plan for time off, or days when you might have to leave early, or times when you just won't be performing at 100%.

Drink lots of water as suggested above... also stay as active as you can. I've been walking every single day and I think it's making a big difference in how I feel. 

Virginia, can I ask TMI questions about your period? I started mine a few days ago but I can't even call it a period. I have the tiredness & some of the cramping I normally get (though milder) but my flow has been soooo light, almost non-existent. Really really weird. Did you notice any differences with this period? 

Virginger

OMG indenial...too funny you should ask..and Girl..NOTHING is TMI here for me.......the DAY i did the interview on the news...I STARTED my period.....OY VEY...

Jen987

Really? Started my period. WTH I've had 2 rounds of chemo and a uterine ablation last year. This beast is never gonna stay away. I was so hoping that I'd be thrown into chemopause. Ugh I guess not. Has anyone heard that you shouldn't use tampons while going through chemo? My MO never mentioned anything to me.

rockermom66

Jen987, I was told to use pads not tampons because of infection risk. That's going to be so fun!
Does anyone know if your flow changes during chemo?

I somehow caught a cold and feel crappy just as I was bouncing back from treatment. 
I can't wait for all of this to be over.

Virginger

saw this and called my buddy Syliva @ MO's office....MO was walking by and he said No Problem...just CHANGE the tampons more frequently... Thank Goodness.....been wearing tampon's since i got my visitor on Tuesday....

Jen987

Thanks Virginia

anne11595

Had my first check up today since first chemo on last Wednesday. Be doing really good with everything. Well the first day of chemo was real bad. But since that every day I felt stronger. So I just got a call from my nurse saying my white blood count was 0.9 and im to stay home and not to be around people and wash my hands a lot! I dont get it, just makes me mad,how can you feel this good and not be healthy. Does that make any sense! But I'm sure some body as gone threw this to.I will have blood work again on Monday . Hoping it will be better for chemo on Wednesday. Plus I did have the shot the day after.I will be better damm it! Sorry I had to say it!!

daffyc

I had my period between cycles 1 and 2 (I'm dose dense AC).  I had a uterine ablation last Sept, but am still getting light periods.  It was on schedule and similar in flow as it's been since my ablation.  I didn't ask my MO, but just used pads as I had read about the possible infection risk with tampons.  

Jen987

Anne I had my blood work done on Monday, my count was 2.0 and the nurse said she'd like it to be at least 2.5. I didn't get the shot because it was horrific last time and I didn't want it unless I really needed it. She let me go home without the injection and said just to watch for a fever. I feel great also. I go back this Monday for another blood draw. I hope my WBC has risen.

PamelaKay

So far I'm deciding to keep the wisps of hair left as they aren't bothering me. Somewhere on this board someone (maybe someone in this April Chemo group) mentioned buffs, which are tubes of fabric about 20 inches long that can be used in several ways to cover your head. I got one from REI, and I can already tell it will be my "go to" for daily wear. It is very quick and easy to put on, stays on even if I bend over, is light and cool enough that I hardly notice it's on, and works great as a base layer to put other scarves and decorations on.

Yesterday being the first day I had to go hairless, I had to quickly figure out how to cover up. I tried several different methods, including the TLC knit hat, with no success, before trying the buff. I doubled it up and made it into a cap, tied a scarf around the rim with the long ends of the scarf over my shoulder to camouflage my missing part, then wrapped a magnetic chain on top for decoration. It was perfect, with just enough height, without having to stuff something underneath. Today, I'm just wearing it "do-rag" style on its own, as I am just staying at home all day. 

Several companies sell buffs on line, just search for "buff bandanna". REI has a video on how to wear them in different styles, several of which will work for us chemoites. They are $20 and up. You can get a UV protection version. 

Reindeer, I was much less affected by my chemo (I've only had one so far) than I expected. The first week was the worst, being a bit more tired than usual and having less reserves. Lessons I learned: don't do anything more than what you need to do. Cancel any extra activities, especially the first week. Plan on resting as soon as you get home. The first three days I didn't have any side effects or nausea, thanks to the IV premeds (Aloxi, Emend, Decadron: make sure you get those!). After that, take your Zoefran (non-sedating anti-nausea drug) at the first sign of any stomach distress. Take your Ativan (sedating anti-nausea drug) every night at bed time to help you get a good night's sleep. If you don't have at least those two drugs (I have 4 total anti-nausea), ask for them. 

Another great find was small bottles of Purelle that have rubber loops that can be attached to your purse. I got several and have them everywhere. I make sure to use them every time I have to touch anything, from door handles to key pads at the market. 

OK, Virginger, you asked for the cast list of Chemogate, so here it is. George Clooney as Doctor D, the mature and taciturn PS. Zooey Deschanel as Doctor J., the young medical oncologist. Sela Ward as the wise homeopath. And, of course, Mary McDonnell (who portrayed Laura Roslin, the president who had BC, on Battlestar Galactica)  as our hairless heroine.