Starting Chemo in JAN 2007

Anonymous

Rebecca - I'd love to hear more about the expander process. I am planning to do reconstruction after chemo, but am totally torn about implants vs. TRAM. I've been thinking about it for ages and can't decide. One of the drawbacks to implants is that I just can't imagine all of that time with the expanders. I was so happy to heal from the mastectomy and be able to wear a prothesis that I just dread having to deal with the whole lopsided look AGAIN. No one ever seems to have a great solution.

NOLONGERREADINGORPOSTING

I really love this group...why don't we just continue it for the radiation phase...?!!!! (Instead of joining a separate thread).

What do you think?

Lynn12

I'll be doing DIEP reconstruction but won't be able to start until next fall as I need rads. I do have my first appt. with PS in April but they say you need to wait 3 - 6 months after rads are complete before doing DIEP.

Mizsissy, I like that idea as well, sounds good to me. I won't be starting rads until late May or early June.

Lynn

Amera

Rebecca, I thought there was some sort of federal law that they had to give you a matching set. If you are getting reconstruction on one side, they have to give you a lift/implant on the other. I swear my surgeon told me this.
Amera

meliaanne

I love the idea of keeping the thread going; I am going to be so lonely when you all leave, since my chemo goes on til late june ...this is really my support group. My husband is wonderful but panics if I express any fear, or what he calls negativity, so this is the place, both for good and bad feelings ...

Melia
Melia

Amera

Great idea! Absolutely!

Amera

jonimb

Hello everyone:

Well it's snowing here again, when is Spring going to get here.

I go to see my oncologist on Friday, and we will go over the results of my MRI. Worried, but there is not much I can do about it. I also have all my blood work done on Friday, as we do blood work one day, and then the next day is chemo day. So my Chemo #4 of FEC is set for Monday.

Everyone says to drink water, but the one thing I can't drink is water....it tastes awful.

Skye, I hear you on the cold sores, I just can't seem to get mine to clear up, and I'm sure it's the chemo. My lips are so chapped due to the cold weather.

Amera, I have days when I cry so much I think I cause more of my eyelashes to fall out. My eyes look swollen a lot of the time, and my eyebrows are very minimal.

I admire all you ladies that will be doing reconstruction, I just don't have the courage....besides I might lose my lifetime coupon of 50% off on all double-breasted suits...hahaha.

Toxic Kool-aid scheduled for March 5, and I sure hope it's not as bad as #3 was. I really felt rough for 12 days after.

MizSizzy, make sure you get that infection healed up prior to any more chemos.

Good luck Lynn on Friday, I'll be thinking of you. Shorti, did they say why they are switching your chemo from FEC to Taxotere? I'm scheduled for 6 FEC.

Dar, I'm going out shopping this afternoon, and I'm going to stick my tongue out at all the "Turtle Faces".

I like the idea of continuing with our group thru rads. Melia, I'll be in some sort of treatment until the end of June.

Everyone...have a Great Day!!

Big Hugs...Joni

Anonymous

Joni - My chemo is FEC also and I have the same issue with water! For the first 4-5 days after each tx all I can manage to drink is ginger ale. I had a tough time drinking enough after my first tx that my onc set me up to get IV fluids for the 2 days after my last tx. It made a huge difference in how I felt, so they said they will continue that after each tx.

All - I think we should continue the group indefinitely. I don't want to give you all up just because my hair grows back!

My favorite aunt has just been diagnosed with leukemia. It has all been very sudden. She's been in ICU for several days and has a leg infection that they can't get under control. I guess they can't start chemo until the infection is gone. Today she was transferred to another hospital with a cancer unit. We've always been close even though I only see her a couple of times a year. She didn't get here for Christmas this year so I haven't seen her since last spring. I so wish that I could hop on a plane and move into her hospital room to be with her. She's single, no kids, and although she has a ton of brothers and sisters only one lives in the same city. I hate, hate, hate to think about her going through this alone. Ugh!!!!

Amera

Jan, I'm sorry about your aunt. You know, for good or bad there's a huge breast cancer support network out there. Good, for obvious reason, but bad because it is so necessary because of the numbers.

Too bad there's not as much support out there for other types of cancer. I doubt they have "lukemia cancer centers" out there like for bc.

You are a good niece. How far away are you? Maybe you could slip in a visit between chemos or between chemo and rads.

And hmmm, mabye I should keep up the fluids for a few days post chemo. I was only told to push fluids for the day before and after to flush out the Adriomycin. I will ask about this.
Amera

Rebecca

Jan,

I think in most cases, the choice of surgery is a personal one...a flesh one vs a silicone one. I have heard that if you go with a TRAM flap, you wind up with a tummy-tuck, and if that is appealing to you go for it! Not everyone can make the choice, however....I was not a candiate for a "flap" surgery because of my small size. The biggest problem that I have with the expander is that it does take a long time, but my PS promises that expansion will be complete by the time chemo is over, and I should be able to have my permanant implants by the end of the summer. The problem then becomes one of esthetics...because my reconstructed breast will be larger than my natural one until AFTER my implant surgery. Which brings me to my next thing which is that YES Amera...by federal law I am entitled to a matched set....but my original equipment (so to speak) can not be matched unless I get an augmentation on my unaffected side...and that can not happen until after chemo is over.....thus I am lopsided for a while. It will eventually sort itself out, and I will have matching boobs probably by the time I have hair again! I guess this is the price I have to pay for nursing my kids....they used me up, and now I have to have even my "good" breast fixed so that I can be reconstructed.

Rebecca

oh..and Jan, as far as the expander process goes...I had the expander placed during my Mastectomy, and once I healed from the surgery I started to go into the office and he injects the expander with saline. It is relatively painless, but I am sometimes a little sore afterwards. Right now my new breast is very slightly larger than the other one, but I can still pass. I have no idea how it is going to look in the end...right now my new breast is a LOT higher than my old one, and I have more cleavage than I have had since highschool(albiet on one side only). I will have to have another surgery to place my permanent implant, and I will have an augmentation and lift of my existing breast at the same time. Sounds like a lot of surgery...and I guess it is, but as I said, my options were limited, and I was not interested in spending the rest of my life with a prosthetic.

viddie

Hi everyone,

The sun is finally shining here and it is a whopping 43 degrees! If only the stock market would surge today!

Rebecca, I decided not to call my oncologist about my fever spikes this past weekend. I will just tell her during my next treatment session. Good luck tomorrow.

Mizsissy, I am still working part time. I take the week off after chema, and i work the two weeks in-between, but only about 15 hours a week. I also agree we should keep this thread going.

Amera,
Feeling happy and sad, sad and happy- a big merry-go round indeed! Happy is exaggerated- probably "not sad" is a more appropriate term. Balancing our emotions is very challenging, especially amongst family. My "happy pill is ativan, but I am trying to save them for the first week after A/C, but if I see a mood coming on, I will sneak one. Also, for me, eating is indeed comforting- knowing when to stop is challenging- especially for me- I work for WW and I am supposed to mail in my weight once a month--Right!!!!. I am supposed to forget that for now. And I am!!! I dare them to challenge me! LOL

Robertin, How are you feeling today after A/C? How was your walk?

Joni, I agree, Water is indeed hard to swallow- pun there- I try to drink more the day before and two days to three days after, but after that, it is very hard to keep drinking something that is not appealing. I have been trying to drink a lot of chamomile tea- getting sick of that too. We try, doesn't that count?

Jan,
I am sorry about your aunt. that must be hard for you. I am sure you will be a big comfort to her. She will sense that you will understand what she is going through, and that will mean a lot to her.

Skye,
How are you feeling? When do you start the taxol and herceptin?

Rebecca, Ilene & Melia- good luck tomorrow.

Stock market did not surge- maybe tomorrow..
Viddie

Lynn12

Viddie,

I use the weight watchers lemonade mix-ins to get my water intake. It's the only way I come close to drinking what I should. I even bring them to my infusion and put them in the bottled water they give me. Try em, do you get them free?

Lynn

Rebecca

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Viddie,

I use the weight watchers lemonade mix-ins to get my water intake. It's the only way I come close to drinking what I should. I even bring them to my infusion and put them in the bottled water they give me. Try em, do you get them free?

Lynn

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I use 4C lite green tea mix..sweetened with splenda. Tastes great, has antioxidants, and helps me drink enough. Otherwise I think I would turn into a raisin

Amera

I have been drinking low sugar grape juice and light limeade after the A/C. I cannot stomach anything that comes in a can. Tastes like rusty nails. I completely forgot to load up on the liquids last time and they couldn't get a vein--said I was too dehydrated. After 4 (yes, 4) sticks for the blood work, they got one and had to re-do it before the A/C as they weren't getting a good "return." Thank God I only have 2 left as I am getting needle phobic, and those sticks to odd places on your arm *hurt*!!
Okay, better start drinking or I will be sorry. One day to go before it all starts again. Blech (I've noticed I've been signing off with "Blech" a lot these days.). Blech!
Amera

NOLONGERREADINGORPOSTING

I'm a Gatorade Gal. Yes it has some calories but not a lot and provides a little lift, and I probably don't snack as much. And it has electrolytes and always tastes good, even right after chemo. The first few days after chemo everything tastes awful. Black tea tastes like green tea. I can't even taste salt.

* * * * *

I have a BC forum friend who has been going by the name of MrsShey; she lives in Virginia now. She was more recently diagnosed than most of us, and had a lumpectomy a few weeks ago. Her tumor was small enough and low grade enough that she doesn't need chemo, which was a good thing, because she's very small, barely 100 pounds, and I hate to think what chemo would have doen to her!!

But she'll be ready for rads soon like many of us so I've invited her to post her. I think she'd be a great person to round out our group. I just helped her format her avatar and maybe we'll see a post soon...

MrsShakur

Wanted to stop by and introduce myself to everyone. As Mizsissy has told you my dx and what's about to take place. Wanted to continue to stay intouch with people here. So glad she invited me, gets pretty lonely when your life has been put on hold all of a sudden. Even though I am out of work right now can't even imagine it as a vacation to many things to worry about, to many things going on. I'm sure the feelings I'm having belongs to alot of you.


Mrs Shey

Dar1

Amera, you made me laugh out loud - no small feat these days! A federal law entitling women to a matched set - I know it's serious, but it just struck my funny bone! I picture the debate in the White House.

robertin

OK, let me tell you guys about my day. I was so inspired by that book at the oncologist's office, that I decided today was liberation day. So, first my husband and bald I went to the supermarket. We bought some stuff and ran into two members of the church. I did not encounter a single pity look, and my friends were cheering me on. Then we went for a walk. It was in the 40's and I wore a sweatshirt and no hat. It was so good to feel the sun on my back, and I could have walked longer than we did. Ah, that wind blowing through the remaining bristles.... I am sold. If I go to work tomorrow, I will go hatless. Chemo was a breeze. It always is. I told the nurse to find me the book again, because I wanted to read the whole thing. Well, she got me the book, and then found me an extra copy, which I was allowed to take home for free. Yippee. It is so inspiring. You see all these beautiful bald women, and they talk about their chemo treatment. It will be on my coffee table and whenever I am down, I will be reading that book. I got cheered on by the nurses who all thought I had a pretty head and that my blue eyes really stood out. And, of course, you get to talk with patients in the waiting room, because they know you are one. This was a good idea. I feel stronger for doing it.

Rebecca

Yay Robertin! It sounds like you had a great, and liberating day. There is nothing more wonderful than feeling wonderful about yourself. You are truly an inspiration. I love your new avatar.

Rebecca

Nice to meet you Mrs Shey!

NOLONGERREADINGORPOSTING

Hey MrsShey, It's so nice to have you here!!! I don't have to hunt for you any more, wanna see your picture though! I made everybody else post a picture so I'll hound you until you do too!!! That fullness feeling in your breast thing that you mentioned in another thread...it doesn't sound normal to me. I'll call your surgeon and check it out!!!

Hooray for Robertin...I told you you look lovely without your hair. You know..there are some inspirational moments in this BC thing...when you find a relative you suddenly feel a lot closer to, a friend who counts, when you have a little personal victory, and I think it's wonderful you found out BALD is BEAUTIFUL!!!

We live in BREAST-OBSESSED society. Even our gov't feels that each woman is entitled to two (2) perfectly matched breasts!!!! Maybe we should demand THREE!!!

Mizsissy

Amera

Yippe Robertin! You are an inspiration. And you do look beautiful in your Avatar.
Amera

Aladora

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Amera, you never told us how your birthday party went this weekend...did your scarf stay on, and did you have a good time?

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I'm not sure if Amera had a party this past weekend as well, but I was the one who was writing about how to keep my wig or scarf on while at a kids birthday party this Saturday.

If you were asking about me (and really, even if you weren't )...

It was SUCH fun! Danny (my little 20 month old monkey) was the youngest there by 2-6 years since the party was for an 8 year old but even so, he had a BLAST! He was too little to take part in the gymnastic lesson but they let us play in the foam pit for a while. He loved it so much that the first time we took him out, he slipped by me and flung himself back in! As soon as he turns 2, we are signing him up for lessons. I am so excited about this since it is a parent/tot lesson and I used to do gymnastics when I was a child. Here is a picture of him in the pit!



As for my wig and/or scarf...well, I gave up on the wig afte about 45 seconds and just wore a bandanna. Yeah, some people looked but you know what? I really did not give a rat's behind if they stared or not! I had fun, Danny had fun, the birthday girl had fun and that's all that matters!

Susan

Aladora

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When I asked my PS what to do about the lopsided look I will be developing, he just shrugged and suggested I stuff my bra. Sigh. Just another thing to feel self concious about until I can have my next surgery.

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I was feeling really low a few weeks ago because all the swelling and fluid build up on my surgery side had gone down and I was looking REALLY lopsided. I did not think it would bother me but it really did. So, when my sister came down for a visit, we went to a specialty bra shop and bought a few mastectomy bras and a breast form prosthesis. I really thought I would hate wearing it but it means that I'm not lopsided anymore and I feel good wearing it!

I'm going to have reconstruction eventually. In fact, I'm probably going to have a double mastectomy and reconstruction done at the same time. (Plus maybe ovary removal depending on BRCA results) I'm probably going to have a TRAM flap done since I have a bit of extra skin from when I was pregnant with Danny. I keep joking with people and say "Cancer sucks. But if you HAVE to get cancer, get the kind that gets you free fake boobs and a tummy tuck!"

Sometimes you have to find the positive in everything.

Susan

NOLONGERREADINGORPOSTING

Hi Aladora,

So nice to hear from you and see another picture of your adorable little monkey, and I am so glad he has a name, Danny is really nicer than Monkey.

We've all been through the mill..nurses from hell, chemical menopause, infections, fevers, Rita's Mom died, PMS, hot flashes, crying jags, eye brows falling out and looking badly tweezed, crying that makes eye lashes fall out faster, TV news cameras finding our scarfed bald heads in church, and endless pity lookers. It's been rough!!

WHERE have you been?!! Hiding out in those other forums? And now you just waltz right in here as though *nothing* has happened...where were you when we needed you?

Mizsissy

PS: All kidding aside, we have the same philosophy. I think you CAN find a positive in everything. You just have to look!

viddie

"Cancer sucks. But if you HAVE to get cancer, get the kind that gets you free fake boobs and a tummy tuck!"

Sometimes you have to find the positive in everything."

Susan, I agree wholeheartedly!!
Danny is adorable and i am glad you had a great time.

Robertin, Good for you!!! I hope I can learn from your spirit, courage, humor and strength. You look great!

Mizsissy,
We all sure have been through a lot, and we are still here to cheer each other on and help each other and we are stronger for it.

Welcome, MrsShey.

Lynn, I forgot about the lemonade. It is good. I get the products for half off. Not so bad.

Viddie

Rebecca

Hey Aladora..sorry about the name snafu...I actually WAS asking after you!

I am glad that you had a good time at the party. Gymnastics is great fun, and actually we originally got involved with gymnastics because my younger daughter went to a party and loved it. I signed her up for lessons, then my older daughter wanted to do it...next thing we know we are going all over the east coast competing!

My youngest (Owen) has been doing gymnastics since he was 16 months old, mostly because I could not keep him out of the pit while we were waiting for his sisters' lessons to end. It was really funny...he would run full speed through the proper door, and then go over the trampoline (bounce bounce) and then off the edge into the pit...all without stopping, and his feet would often still be running in the air cartoon style. Of course then there was me sprinting after him, and then diving into the pit after him because he could get IN, but he could not get OUT. Finally we all decided it was best to get him into some lessons so he could learn to do it properly for his safety and my sanity. That was two years ago, and he still loves it. At 4 he can do a better handstand than I can!

As far as the lopsided thing, I thought about a mastectomy bra, but the problem is that my reconstruction is actually underway, and I have what passes for a breast on my mastectomy side. The reconstructed breast is going to be larger than my natural one for a while before reconstruction is complete and they are made to match, so I am not sure that a prosthesis is really what is called for since it would be going on top of my unaffected side. I hope that I am not reduced to using tissues...but I have been told that if you go to a fancy department store they often have formal "things" for stuffing your bra, and I may try that.

In some ways I am unhappy with this reconstruction process...it just seems to me like it is just one more thing that I have deal with now, and that it might have been easier to do it later. My surgeon felt very strongly that it was important for me to have the immediate reconstruction, and basically would book no discussion about it. He presented it as the only option, and I was so weak, scared and stressed that I just did as I was told. If I had been less vulnerable at the time I think I would have chosen to wait...particularly since I do not yet know my BRCA status, and if it is positive a second mastectomy could be in my future. On the plus side, I will know THAT before I have the work done on my remaining breast. If I am BRCA positive, then it will be just that much longer that I will have to be lopsided I guess. Ah well...no looking back!

Danny is adorable, and it was nice to see you posting!

sharon56

I am all for keeping up with the rad treatments too
Jan : I still have eyebrows but my eyelashes are thinning and I think all the facial hair I had is gone . Nice not having to shave your legs and armpits I still have hair on my head too a shaved patchwork quilt
Joni : I have stage 3 bc along with colon cancer so I am pretty sure thats why the taxotere . I also had 8 out of 16 positive lymph nodes and one of them was over 4cm .
I had a lumpectomy 2.3 cm lump .
Also thinking that taxol and taxotere are in the same class of drug extracted from the yew tree ?
Welcome Mrs Shey hope we can help out in anyway we can
Aladora your son is sweet he must brighten up your day , my neighbour babysits and I always love to see the kids playing outside next door , little ones remind you about the innocence and utter playfulness we all need to recapture everyday .
Robertin well what can we say you look gourgeous honey , going comando.... sounds like it refreshed you .
Me today I finally got my long term disability ! Now I can get some bills paid and updated . My employer has this in my benefit program , it also will help me get back to work gradually . Having 2 primary cancers one on top of the other has had its toll on me body.
I have had my tummy tuck , and some of you gals are going to get breast reconstruction .... by the time we are all done we will have new bodies , and healthy new cells from chemo (positve spin on chemo

robertin

My daughter Kirstin offered to knit a boobbie for me if I needed it. It thought that was so funny. She also offered to knit them for my daughter who is a size D after giving birth, and will turn in to a size AA when the nursing is over. Here's the link: http://64.233.167.104/search?q=cache:VIS...;cd=1&gl=us By the way, I had to drop by the university because I had, once again, left my cell phone in my office: chemo brain. I was bald, and I dropped by a retiring professor down the hall. He is balding a lot, but I beat him. So, I showed up in my bald head, and his first reaction was "wow" and then he told me he loved it, and it looked great, and I know he meant it. I asked him if the department chair would object, and he said, "why should he, and if he does, who cares." I feel such support from the men in the department. One of the female professors has the pity look, but is always offering to cook for me, so I forgive her. You know, a lot of people don't know how to act, and, honestly, I have learned a lot about what to do and what not. I feel I have become a better person by going through this ordeal. And, believe me, I will apply what I have learned when I encounter someone with cancer. Oh, one more thing. I know a great lady who just recently beat liver cancer. Two years before she was diagnosed with breast cancer. She had a ful masctectomy and was told she did not need chemo. It was left up to her, but she decided to follow the doctor's advise. Now she really regrets that decision and she wishes that the had taken the chemo, because the cancer came back so aggressively with over 100 spots on her liver. So, that is something to keep in mind when the doctor gives you a choice. I'd say, give me all you have.