February 2011 chemo pals

Salma1971

Hi great fighters... Hope all is well with you... I am off tomorrow to start the first of my 4xA/C - I had a blood work today. The doctor gave a priscription of  4 medicines... but I will also be starting tomorrow with cortizone then the A and C---- Mary, I think it is typical of a 16 years old to be in denial. It is tough enough to be 16, let alone to start worrying about your mom... She'll come round. I had a nice chat with my boys this evening--- I came all out... I told them I will need some kind of medicine for the coming three months... I told them it will make tired and lose my hair....but it will ultimately be ok... The 6 years old listened and I think he's ok so far... I am not too sure the 3 year old got anything from the conversation... He was just happy jumping around me and giving me hugs... oh bless those children!---

Good luck ladies...

SpecialK

Hi All,

For all you about to start I had a completely normal weekend except for mouth sores which did not slow me down.  Went out to dinner last night with friends and DH and I had brunch this a.m., shopped and did errands - FELT NORMAL!  I am 1 1/2 weeks out from the first tx.  The moral of the story is you may feel not so great in the coming few days - but then that will cease and you will feel pretty good.  Keep repeating that to yourself.  I was very fortunate that my Neulasta did what it was supposed to and kept my white counts above normal so I could have one last really fun weekend with hair!

Safari - my DD drove over to West Palm last night to visit a friend, I was thinking of you!

Golfer - make sure you take the Claritin/Zyrtec at least 1 hr. before your Neulasta and continue to take it for a couple of days after.

Cindy - Could you be just retaining fluid?  They might be able to give you a diuretic.  It it on the same side as your back/hip/leg pain?

Salma and M1nn1e - Good luck, I will be thinking of you.  If you are receiving Taxotere please ice your toes and fingertips during your infusion to prevent nail lifting.  I just brought frozen peas.  And drink, drink, drink day before and during.  You need to flush out your systems ASAP.  I probably brought too much stuff with me to the first appt.  I had a book, DVD player, laptop.  I looked like I was moving in.  I was on edge enough I didn't even pull anything out of my bag.  A couple of magazines might be better so you can read in snippets.  There was so much activity I couldn't concentrate on much.

I also had trouble eating meals - was better with "grazing" but found I needed to eat to take all the pills or it made my tummy worse.  Also, don't be afraid to layer your anti-nausea meds.  If the first one doesn't work, go on to the next.  Ativan will help you sleep if it is one of your scrips.

Michelle - LOL the Charlie Brown Xmas tree analogy!  Hilarious!

Kathie

crog234

SpecialK  Nope the swellling is in the opposite foot.  I could understand it if it was on my affected side.  Well I have sat most the afternoon with my foot above waistline and the swelling seems to have come down.  Now to keep the swelling down. 

Cindy

NeyNey

Hello ladies,

Hope all have had a wonderful weekend.  Here in the south it is near 80 (sorry snowbound ladies) and Friday night sat on my back patio and let my husband buzz the hair to stubble.  I'm glad all the birds at my feeders can use the hair to feather their nests!  Although I'm wearing a cotton sleep cap or soft scarves at home I am losing the stubble inside the caps and the neckline hair on my pillow.  I don't have to worry about ANY hair anywhere else...it rubbed off in the shower as if I had used Nair! I did have a melt down later Friday evening but hubby gave me a pedicure and held me like I was a baby.  Does anyone else know when the hormone thing kicks in?  So we're all being pushed into menopause from the chemo....had an ablasion years ago so no periods for me as indicators of when this event takes place.  Don't know if the meltdown was hair/esteem related or hormone precipitated.....

Grandmagolfer....get your Claritin over the counter and make sure it is the 24 hour formula.  I still have major bone pain and chills...especially in the arm, shoulder and shoulder blade where it was dispensed.  I'm probably going to ask for something stronger from the onc tomorrow during labwork.  Don't know if I'm immune to the Claritin ( I have taken it for allergies in the past) or if it is just me.....

I can say that I do fatigue and tire easily.  I've never been one to take a nap or slow down but am using this as an opportunity to do those things that I typically wouldn't take time to do.  Babyswim, write that book!  I've been working on church children's curriculum for a couple of years and many have said to begin my writing career.....my children (20,21) are also wanting a cookbook of my recipes with pictures of them in the kitchen with me over the years......

Fever for me wasn't indicitive of low white counts....just the way my body reacted.  My NP said that more than likely if it did it the first time it will the second (by the way the next labs showed 16-so the Neulasta does work) and that will just be the pattern for these first EC treatments.  Remember two months for a lifetime!!!  Then maybe the T treatments won't bring low counts!

 Praying for high WBC tomorrow!

Have a blessed Sunday!!  

EmilyInOntario

 FEC-D Start: Jan 28/2011 Cycle 2/6 Day 10

Hi all..just wanted to mention I have had Neulasta twice now and no bone pain so it doesn't always happen. I did have fever/chills for a few days after chemo but no elevated temp so not sure if it was the chemo, the neulasta or the decadron. I never took claritin or any over the counter allergy meds, it wasn't even mentioned by my doctor.

Hope everyone is hanging in there okay. Day 10 for me after second round of chemo and feeling quite good. I seem to have bounced back more quickly after this second round.

DivineMrsM

Mary, I'm sure each child processes these things in their own personal way.  My son is an only child, and I think he worries we'll withhold information from him to "protect" him. But I've always been up front with him on everything, including telling him the day I discovered the lump in my breast, up to the Stage IV diagnosis.  He just told me today he's grown up a lot in the last coulple months!  He took a day off from school a couple weeks ago just to absorb everything that's happened since Dec 22.  He said that really helped him.  He went on line and looked up something like "cancer success stories".  He read them and it gave him hope.  I was glad he is looking for the positives.  He found out one of his classmates, also an only child, experienced something similar when her dad was diagnosed with some form of cancer a couple years ago, her dad seems to be doing okay now, and that has helped him process things somewhat.

thefuzzylemon

Hello All!  Is so nice to read all of the posts and see that everyone is feeling pretty well!  I went in for the "Demi" today ... not a whole lot left to lose!  I knew I had to do it on a good day or I'd probably lose it mentally!  The ladies at the haricut place were so awesome!  We laughed and talked ... and then they put my bill "on the house"!  It was very special.

M1nn1e - my 16 year old didn't even look at me when this all first started in January ... I completely understood and let her handle it her way ... and now she is an amazing supporter - so strong and kind - asks me questions everyday (including, "Hey Mom, how ya feeling today?") and I couldn't be more proud of her!  It could be a gender thing ... and I hope that time and understanding is all she needs

Hugs and a Smile!

charlottesmama

OMG the ultimate insult: My own hair is falling into my glass of wine! WAAAAHHHHH!!!!! 

pejkug3

I'm having a terrible time finding headcoverings for my big ol' head.  23.75" around. 

I ordered some large wigs from tlcdirect.org.  Anyone wearing a wig?  Are they horrible?

I have big, curly hair.  I'm wearinga  scarf right now - just to try to get used to it.  I haven't started losing hair yet.  Nothing feels right.

 I can't imagine going bald.  I'm too fat, my nose is big and my head is a big ol' melon.  No bald=beautiful for me.

I hate this.

safari94

Pejkug3:

So sorry to hear your ordeal but you are not alone! I am 37 and had my head shaved yesterday! It was so difficult but had to be done and I feel SOOOO much better! These scarves are beautiful and sooo comfortable! They are already wrapped and truly amazing!

http://www.4women.com/fabrics/silk

Make sure you are measuring right though! They give a tape measure on this site but measurements came out being much larger than when I took a string and wrapped it around, then held that up to a tape measure.

I went to a wig store which is best to get it fitted correctly.  I bought mine a month ago and went back yesterday so she could shave my head and refit the wig.  It will fit much differently once you lose your hair.  I have to say that my wigs are beautiful and actually 10x nicer than my hair! The scarves are beautiful and we can only do what we can to get through this one day at a time!

I feel your pain and am so sad and feel so ugly but we WILL beat this and it WILL grow back and I personally am going to strive to get my butt in shape so I can feel a bit better about myself!

Treat yourself to some of these beautiful silk scarves (check clearance too) and go find a great wig shop! Good luck! Thinking of you HUGS

Mary

pickle

Hello ladies,

I hope you don't mind me dropping in but I just wanted to send warm wishes and big hugs to all of you. Two years ago I was where all of you amazing women are so I know it's a tough battle for you at this point but you all sound like you are doing remarkably well.



Keep your sisterhood going here and continue to support and encourage each other. I was with the "March chemo 2009 group" and we are all doing great. We still correspond and post here. Last year, for our one year anniversary, we met up in New York City for a weekend.

There is nothing like the sisterhood here.



Best wishes to all of you And remember to be kind to yourselves. A cancer diagnosis is a journey and process.....one step at a time and I know that one day you will all be encouraging a new bunch of "newbies"



Big hugs

Beth

Paula66

Good Luck to all you gals doing Treatment today!  our group has grown so that I cant remember you all by name.  Just know you are all in my thoughts and prayers today.

charlottesmama

Good morning. I had a completely sleepless night. My brain would not shut down, even tough I took 3 Tylenol PM! And I just could't get comfortable. My left hip aches at night and the Tylenol didn't touch it. I was hot, then cold, then hot. My head was itching and burning like mad and every time I tossed or turned, I felt a flutter of lost hairs all over my face. When I finally started to drift off, the snow plow came and uber-plowed in front of my house with that damned beep-beep-beep back-up horn blasting.

Oh well. Kiddo's back in school today. YAY! 

Melanie_Ann

Good Morning!

Thanks for the encouragment Beth! I can't wait to be in your position.

So my 2nd round of chemo was a little tougher than the first. I'm almost completely bald now and at first it didn't bother me, but when I go out now, I can't decide what to wear....a hat, a wig, a scarf, nothing? Usually I opt for a scarf or a hat without a wig because my head keeps getting really hot...hot flashes? I think so! 

After my first round of chemo I felt pretty good after about 4 days and kept feeling better and better from there. This time though, it seems I also caught some sort of stomach bug or ate something bad, so it was back to bed for me yesterday with severe nausea. Ugh! But I'm feeling better today and hopefully will continue until next treatment. 

I haven't noticed my eyelashes or eyebrows falling out. I'm hoping they won't. But from what I can tell, everyone is a little different. 

Have a great day everyone! Good Luck to those starting or having treatment today.

Oh and I saw where someone posted about the peas during Taxotere. Do it! Actually I only used mine during the Adriamycin but they were still cold during the taxotere and I haven't had the ridges or lines in my nailes yet. And they're still pretty which makes me happy. And I think they might actually still be growing. Next time, I'm going to ice through all 3 of my drugs. 

Anyone else experiencing neuropathy? The burning and tingling in your hands and feet? Mine was much worse this time, but has lessened over the past couple of days. It makes me jumpy like restless leg syndrome. Ouch! 

 Melanie

mks16

Good morning all!

Its now been five days since my first chemo, and I am still not quite there. In the meantime I got my period as well, and it is horribly painful and making me miserable. AC was supposed to stop my periods, but I guess I got it too late in the cycle and now there's a battle going on in my body, between AC and my ovaries. Not sure who's winning but neither side is taking any prisoners. I feel like crap.

I find that I start my day very optimistic and full of energy, but that usually lasts about 23 1/2 minutes, lol. I take about 3-4 small naps throughout the day, but do manage to get up and get things done in between, I even take the dog for a few kilometer walks and that motivates me further. 

I am having trouble sleeping - staying asleep that is, although last night I did get almost a full night sleep, so hopefully that's a good sign of things to come. Since I am on a two week schedule, today I am starting my GOOD week when I am supposed to feel great, so I plan on keeping the attitude. Till noon at least. 

All the best to everyone!

charlottesmama

Well, I did it. I got my head buzzed down to 1/4". 

I dropped my daughter off at school, then came home and took a shower. My hair came out in huge clumps and just kept coming and coming. When I toweld off, I could see my scalp through my thin hair, and I burst into tears.

I didn't expect this to be so  emotional. Like any woman, I'm vain about my hair, and I really loved my new short do. But being bald is the only physical manifestation I have that I'm sick. I called my sister and she reminded me that it's not the cancer that made me lose my hair, it's the drugs I'm taking to kill the cancer. My friend Anne told me to think of being bald as my sign that the drugs are working.

She also told me that when she went around bald during chemo, she felt like she was reminding other women that this could hapen to them too. She said she hoped that every time a woman looked at her in shock or pity, that that woman would go home and schedule a mammogram.

That's some pretty powerful thinking.

 Cheers,

Michelle

thefuzzylemon

Michelle - I just love ya girl!  We are an example!!  We are killing a beast!!  This head of mine is a badge that will represent how strong we are.  When I looked in the mirror today, there was a moment of course ... then I looked again.  And again and the strength came.  I am proud to be with you during this journey.  All of my docs told me that the hair is the hardest part.  You did it.  You inspire me every single day - today is not an exception.  You are more beautiful of a person than I could ever tell you. 

Hugs and a rub on your head   You're amazing.

golfergrandma

Minnie  - Just read 'I Still Dream About You" by Fannie Flagg and loved it.  Just went to library today to get another of her books.  She's such a hoot!  Also, "Cutting for Stone" was one of the best books I've ever read.  Good luck.

crog234

Just back from my 3rd treatment.  Talked with a girl who was sitting beside me and before I knew it I was all done..  I had 3 different people comment on my hair.  One of them I didn't let on that it was not my hair.  The girl having treatment asked me what treatment I was on and I told her and she said you have not lost your hair yet....  I said yes I have and she was shocked. ...  So I guess it looks real enough that people just can't tell.  I asked about the swelling I had in my left foot and the nurse told me that it can happen while doing chemo.  I hadn't heard that before.  Hoping that the steroids will help my right leg to feel better...

 Take care,

Cindy

DivineMrsM

One other thing I want to mention to M1nn1e and any others in regards to children's reactions and behaviors when finding their mom is has BC.  

About 5 weeks after my diagnosis, it occurred to me to tell my husband, "by the way, you did not do anything to cause me to have cancer."  I know sometimes that crosses people's minds.  They think maybe they're being punished for some transgression in their past.  My husband did admit that he had thought that somehow it was his fault.  And I just said, its not your fault, my fault or our son's fault.  We live in a fallen world and there is disease and I happened to be the one to get this particular disease.

A couple weeks later, the same subject came up in a casual conversation with my son.  I told him the same thing I'd told my husband, that there wasn't anything he did wrong that caused me to get BC.  And he, too, said that he'd felt at some point that it was his fault. I repeated that we live in a fallen world, and disease is something that is part of it, and it just happend to be me to get BC.  That it was not caused by my son, my husband or myself or anyone else for that matter.

You never know if somewhere deep inside one of your loved ones is wondering if he/she somehow caused this upon you.   I just thought I'd mention it as food for thought.

Melanie_Ann

Cindy,

I just noticed your comment about swelling. I too had swelling this past time. More so with my left hand than anywhere else. Mine only lasted about a day though and I did mention it to the nurse when she called. They said not to worry, that it was the chemo. I was worried though...everything is so strange, you just have to make sure it's "normal." I hope you have a restful few days with few side effects. I'm so glad you're almost done! I can't wait til that's me!

Michelle,

Thanks for sharing your comments about your hair! I haven't had that burst into tears moment, but you never know when it will hit. I look at myself in the mornings and don't recognize myself. Maybe that's why it's hard to be upset, b/c surely that can't be me staring back. I actually look sick...ugh. But I'm happy to report that I do put makeup on, and a cute scarf and feel 100% better. I had an event that I was helping with this weekend with a bunch of teenagers. No one had seen me without my hair yet, and I was soooo nervous to go. I kept switching from a scarf, to my wig, to my underhair, then to a hat. I just was so self concious. But I finally setteled on a scarf and made myself walk out the door. One little girl came up to me and was like...I really like your head thing. haha. She made my day! 

Melanie

crog234

Melanie  Yes the nurse told me today that swelling can happen and it is the chemo (unless of course you do something like fall or twist).  I also didn't know that putting ice on something that is swollen only works if there was some sort of trama, like twisting you ankle.  If you just have swelling you have to just raise the affected area.  My swelling went down yesterday after keeping my left foot elevated for a good part of the day.  Wish they had told me that this could happen before hand.  Maybe they did and I just didn't remember it.... 

 Had my 3rd treatment, so only 1 more A/C to go....   So far so good.  I am tired tonight but not sure if it is from the treatment or my sleeping last night sitting up in a recliner with my lest foot on a chair with a pillow (cause I didn't want it to swell up again) and the leg hanging over the front of the chair.  Needless to say I didn't get much sleep... 

 Three people today commented on my hair.  Said how nice it looked.  I thanked one of them and kept my mouth shut.  The girl sitting beside me while having the infusion said haven't you lost your hair yet and I said yes.  She couldn't believe that what I was wearing was not real.  The nurse doing my infusion said pretty much the same thing.  I am so glad that it looks real to others..

 Have a good evening eveyone

Cindy

M1nn1e

Hi Girls!

Thanks for all the wonderful feedback and advice about children! Really helps to read all of your experiences! You're the best! Really!

Golfergrandma; Thanks for the book suggestions, I will check them out! No pun intended. lol 

I started chemo today. First one under my belt yey! No surprises or reactions, so far so good. However, I do know that it could take a while for the side effects to kick in, so I'm enjoying my night with my family. Neulasta shot tomorrow. Thanks for all the well wishes and prayer! So glad I found you guys! xoxo Mary 

mamaoftwo

Hello ladies,  It's so great to commiserate and share this experience with a group of strong women.  We'll all get through it-- though it's been a tough day for me.  Head congestion, very sore throat.  I must have checked my temperature half a dozen times today while at work and it didn't go up.  But the symptoms have me worried.

I feel badly that I'm feeling very germphobic of my older daughter (age 8).  She wanted me to lay with her in her bed while she went to sleep tonight, but with her sniffling and coughing I just couldn't do it. I hope she will forgive me!

I'm hoping tomorrow will be a healthier day. Good night everyone.

lonneta04

Hey Girls, I finally got mad enough and ran the clippers down the side of my head. Of course i stopped and tried to do a comb over to hide my mistake..dont think so..I ask my husband to finish it for me (i asked him not to look..i didnt want him to see me with no hair.ha.)I can tell you ladies who are nearing that point..do it, get it over with.The pain and stress that started from the first comb of hair was not worth it.The wig i bought now looks so much better, it took some time playing with, curling, cutting .I feel better,I look better,scarves are not so bad,I had a friend i havent seen in a week say" you cut your hair, you look younger"It was a hat with the hair..I do think that losing the hair was the worst part but once its done..its done, you have no choice but to love what you see, there is no more stressing over finding it on your pillow I hope this helps one of you, it can only get better from here. My second round is this friday, and for the first time i am in control....a special thanks to safari for your encouragement..Damn I feel better..Love to you all

LisaGH

Hi all. My first treatment was 2/16- so I am watching/waiting too. I should be getting close to losing the hair too?

I am working all week and so nervous about it falling out in clumps there. I am on TCH so was thinking that maybe Wednesday is the day? That would be 2 wks from the treatment? I guess there's no way to know for certain.

Hugs to everyone going through this. I too am dreading it. Not looking forward to a wig. I have scarves, hats and caps in the back of the closet- probably time to pull them out soon. I just don't know what to expect..

And I am so thankful that I feel so good today physically! Have one more week and one full day before round two of TCH. 

Thinking of you all- and thankful to be in the presence of such strong women!

sukie10

I'm so glad I started a little later in the month so I can hear all of your stories. I've survived round one.I didn't know it was even possible to sleep that many hours in a day. Something I didn't seem to read that is becoming a problem for me is that the lump is becoming very sore and painful. I'm assuming this is because the chemo is starting to kick a**.  I wasn't made aware of this being a SE. Anyone else who had chemo before surgery having this problem? 

mks16

My first treatment was only six days ago, and already the shower was full of hair this morning. My hair started thining a lot couple of years ago, so its hard to say whether there's a noticeable hair loss so soon after the first treatment, but the amount of hair I left behind this morning really surprised me.

 I keep telling myself it only means chemo is working even faster and better than expected

jenn_h

Hi my sisters! I had my first chemo treatment on 2/17 so I guess I fit in well here. First time went great. I had a bout 5 days of queasiness, but had actually forgottem to take a cpl. meds (I am not used to taking anything, have always been pretty healthy...imagine that!). I was pretty tired for a cpl. days, but now I feel completely "normal", go in 2 days for treatment #2...

The hair theme seems to be a pretty common topic here, and I am right with you all...the anticipation is driving me crazy, I don't want to lose it, but on the other hand I almost want to just shave it off now so I can stop obsessing about it. I have a wig, but I feel nauseous when I look at it I did get some really pretty scarves though and am a little excited about those. I keep finding myself running my hand through my hair to see how much comes out in my hand (although its the same amount that always has).

Kids: well I have a 14 year old and 8 year old boy. We told the 14 year old, but decided just to tell the 8 year old I was a little sick. He came up to me last week and says, "So, do you have breast cancer or something?" I said "Yes, I do", he said, "Does that kill you?" I said, "Well it could, but the swine flu could kill you too." He said "Oh, OK, see ya", so I guess he's ok with it...kids...

I feel like I am not really informed on my whole treatment, I haven't spent a lot of time reading up on stuff. I have had a few opinions, but people ask me questions or I read comments on here and I guess I don't spend a whole lot of time knowing what meds I have, about side effects, etc. I do know that I have treatment every other week for 16 weeks. then I will have a double mastec. (I have it bilaterally), then I will have radiation...Really, I just want  to be done...places to go and people to see, ya know?!

So back to the all important hair thing, out of curiosity, which was the day you girls lost it? I hear from 2 weeks to 3...

Melanie_Ann

I noticed that more of mine started coming out after about 11 days. Then at around day 15, it really started coming out. Just little hairs all over the place...all over my shoulders. If I ran my hand through my hair, I'd get about 20 or so hairs. Then on day 17-18, it was everywhere in the shower. If I put a bobbi pin in, and pull it out, all the hair came out with it. So I shaved it all off on day 18. But I still had a lot more than I thought, even after that. So then for the next 2-3 days, I'd have stubble all over my shower. I still have a little all over my head. It's very thin though. I'm not sure how long it will all take to fall out, if it ever will. But it's now been 29 days since my first treatment. I was so glad when I finally shaved it all off. It was such a relief not to be shedding all over everything.