2005 ROCK-TOBER CHEMO GIRLS

debbie444 · January 2006

Well, i went into work today and gave them my return date - what a step! I am only going in for a while between chemo and radiotherapy but being as i havent been paid for ages , every little helps!
I got my app for rads mapping today - 9.00 on feb 14th - Happy Valentines day to me! Amy you start rads on my 34th birthday - i will be thinking of you.
My last chemo is on 26th Jan - didnt think i would get there. Its been a strange trip - still ok but finding it harder to bounce back each time!
Debbie

TracySeattle · January 2006

My last chemo is tomorrow also, I will be so glad to have this past me. Congrats to those of you who are also at the end! For those of you that still have a few to go--the time will go by faster than you think. We are all strong women and we can conquer this!

Fists Up!

ravdeb · January 2006

Pauls... how was the last chemo treatment???? Are you celebrating? And if so, how????? CONGRATULATIONS!!!!! Hope it all goes better and better from now on!

marymelodi....
how was the smoothie vs the cookie? :-) There is that chance of drowning in your smoothie..JUST KIDDING! Hope all went well. And though it's not so good that you had to lose weight on chemo, it is a healthy beginning to a healthier life, so I salute you! good luck with that.

maryanech....
I do believe we will be having our last taxol together! I have my last one on the 16th of March, should all go well.... I mentioned the 12 treatments today to my onc and she said...yes..should you make it through them all. She wanted to be honest....

graycie...I hope your symptoms continue to be not too bad and you feel good.

Amy... good luck as you run into home plate on that last chemo!!!! Feel good. You will start to feel stronger, I'm sure. My onc keep reasurring me of this so I'm passing it on to you and all of you!!!!

daydream... hope you are feeling terrific now that it's over!!!

Stay on this thread and let us know how rads go!!! we want to hear from y'all!

and I have to agree...it's pretty nice to hear from women from several different countries around the world. I find it interesting and you guys have improved my English! I mean...I am an American living in Israel but since I've been out of the States (except for family visits) for 19 years, I don't know the modern slang at all and have learned it from all of you!!!!!! I also like hearing about the way things go as far as breast cancer treatment...the similarities and the differences...

Feel good, all you brave women.
ravdeb

Paula15089 · January 2006

Hi ladies,
last chemo was as always, but boy, was i glad to get out of there!
Feel tired (not too tired to check out this forum thought ), and the nausea is a bit worse this time, but hopefully will keep in under control with all the meds.
I think i will celebrate the end of chemo when i feel more human...
next for me - rads in about a month
take care all!

ake · January 2006

got my tattoos today for rads. seriously, after chemo...rads is so interesting! i know have 4 little black dots on my breast and chest. this is all so surreal!

Anonymous · January 2006

Hey girls - my 2nd. Taxol (last week) continues to kick my butt! I have not felt this achy and exhausted to date. I'm concerned - it seems as though all of you are whizzing through this nightmare and I am struggling like a turtle climbing up a hill. I hope this doesn't mean that the wretched cancer monster has invaded/spread to another part of my body...there goes my paranoia. I feel like crap, no kidding! I feel like I'm 90! Yesterday my RBC's were at 10. I've gotten, to date, 3 shots of Aranesp. It brings 'em up, but they go right back down after each treatment. I am eating like a pig and have hardly gained a pound.

QUESTION:
Why are some of you having radiation? I am not. Is it because I am Her- with no postitive lymph nodes? (Sentinal Node was postive, but that was removed.) I am, however, er+ and pr+. Thanks
Laura

Paula15089 · January 2006

Laura - dont worry. Some days i feel like i am 100, and i didnt even had Taxol. It will get better.

I am having rads despite neg SNB, as my tumor was multifocal and i had lymphovascular invasion... anyway, it was deemed agressive so rads were strongly advised. Its all about bringing the chance of recuurence down, and i definitely want it down to nothing!!!

ake · January 2006

Laura...I definitely have noticed that I am getting more and more tired with each Taxol. I really think my body is saying...it's enough! i feel like such an old woman...i get exhausted going up a flight of stairs. i remember my onc. saying that the fatigue would be cummulative and i thouhgt...not for me! it turns out to be true. we're at the end....we just have to hang on!

i'm doing radiation because of those 7 bastard lymph nodes that wanted to be positive. i also had slight lymphovascular invasion. so aggressive cancer, aggressive treatment...which is fine by me. they can do whatever they want as long as it never comes back. it's funny...i actually told my husband the other day...i would totally be bald the rest of my life if i had 100% guarantee that the cancer wouldn't come back.

-amy

Graycie · January 2006

Laura, I had my 3rd taxol on Tuesday and I feel like crap too. Very tired and shaky for some reason. I also cry at the drop of a hat...My RBC was 9 so I got a shot of aranesp but I am not feeling any better from it. I have to do radiation after chemo as far as I know. You probably aren't getting radiation beause your ONC doesn't feel that you need it. I guess it all depends on what kind of cancer you have. They must be pretty confident that the chemo is going to get rid of all your cancer which sounds like a good sign to me. Graycie

Anonymous · January 2006

Thanks girls!
Paula,
My bc is multi-focal too and is/was Invasive Lobular. I guess it's better to FEEL 90/100 yrs old than to look 90/100 yrs old! LOL (ouch - it hurts to laugh!) I feel bad, you're so young to have go through this (I'm 45, up until bc I felt 29).
Amy,
OMG - I agree with you about being bald forever if we had a guarantee. In fact, I play this "mind game thing" all the time! I have thought that I would actually go to chemo once a month for the rest of my life for that 100% guarantee. And I have thought of other ones too. It's incredible how this wretched monster/"bastard" has affected all of us not only phycically but psychologically too!
Graycie,
Wow - 9 for the 'ol rbc's - that is really low. No wonder you feel like crap! Hope you feel better soon.
Laura

marymelodi · January 2006

Hi, everyone:
2nd Taxol yesterday. Reduced the dose by 25% because of the severity of the side effects I had 2 weeks ago. Feel okay - well, okay enough today. I am at work since I have to be here at the hospital this afternoon for the Neulasta shot. At 4 pm I will just walk up to the other side of the hospital, where the cancer center is located, and get my shot before I go home. They also gave me some more meds to deal with the side effects, if they come.

2 more Taxol to go on Jan 26 and February 9th. Finished by Valentine's Day, I hope.

I think we should all stay together on this thread through the radiation and beyond. One of our bonds is that we are are more or less having the same experiences at the same time. It is comforting and informative to share the journey with others who are walking the same path at the same time. Let's stay together.

About radation: it is my understanding, and I have read some research reports, that the combination of lumpectomy and radiation can improve the chance of no recurrence in the affected breast up into the high 80%-iles and there is a study on 20-year survival rates where the combination of lumpectomy and radiation gives high 90%-ile figures. I believe that lumpectomy and radiation is the gold standard. Radiation essentially sterilizes the breast. BUT, it is only a local treatment - local meaning it just treats the breast. That is why we also have chemotherapy, which treats the whole body, as we all are so very much aware of right now.

If you are not having radiation I wonder did you have a masectomy? Perhaps that is the difference. I do not know what the research says about masectomies. Since I had a lumpctomy only, I knew from the beginning that radiation would be the second stage of the treatment of my breast.

Have you read Susan Love's Breast Book? I'm sure you must have. She has a very good explanation of all these treatmenets and maybe there is information there that will answer the question.

I asked yesterday why some people get dose-dense, biweekly Taxol and some get the weekly treatments. My NP said it is given weekely in an effort to reduce side effect and negative events. But, hearing your stories I wonder how effective that is. She told me that the dose-dense regimen that I am on has been proven to be effective and safe because of the bone marrow germ stimulating meds (Neulasta or Neupogen). She said it mostly depends on the preference of the doctor. But, I have learned through all your experiences that each breast cancer is an individual, unique disease and there are so many factors to consider that it makes every case it's own special class. I don't think anyone has exactly the same treatment as anyone else.

But, we all share similar fears, hopes, pains, joys, sadness, loss, and attitudes. That is why we are using this forum and finding it helpful and compelling. We have a sisterhood that no one else understands.

Have a great weekend!

Anonymous · January 2006

Quote:

QUESTION:
Why are some of you having radiation? I am not. Is it because I am Her- with no postitive lymph nodes? (Sentinal Node was postive, but that was removed.) I am, however, er+ and pr+.

I had a lumpectomy (less than 1 cm. but high grade), SNB which was negative for tumors, and 4 A/C's. My cancer was ER/PR negative and HER2/Neu negative.

I asked my onc last week why I needed radiation. He said because "without radiation there is a 30% chance of recurrence in the same breast and that goes down to 1 or 2% with radiation".

Graycie · January 2006

Mary, Thanks for your post it was very interesting. I agree we should all stay together on this thread through radiation, after all we have come this far together, and Laura you stay with us too.....Mary has a point you may not be getting radiation if you had a mastectomy. When I had my lumpectomy the nurse told me she chose a mastectomy because she didn't want chemo or radiation. My Breast surgeon told me that if my SN came back negative I wouldn't have to have chemo, just radiation, unfortunately that wasn't the case. Here's one I can't figure out, My son-in-law's grandmother has BC 10yrs ago and she had a mastectomy and never had to have chemo or radiation. I thought that was odd. She had 21 lymph-nodes removed also, not sure if they were positive or negative....She is now 86 yrs. old and has not had a recurrence. I guess it all depends on what kind of cancer you have as to how they treat you...I hope everyone is feeling well today and has a nice weekend. Graycie

chumfry · January 2006

Had my last Taxol yesterday. If it follows the pattern of the others, I won't start hurting until tomorrow. I have saved a George Carlin CD I received for Christmas, and the last two episodes of last year's "Lost," for distraction. And, of course, I have my Percocet.

I chose a mastectomy over a lumpectomy primarily to avoid radiation, and I had negative lymph nodes, so this is it for me aside from the reconstruction surgery.

Don't feel like celebrating until after I get through the aches and pains of this last Taxol. They reduced my dose by 25 percent because of how severely the numbness was affecting my hands and feet. My big toes went numb last time and I had no idea how instrumental they are in keeping your balance! Like I needed any help in being more clumsy! hahahahha!

I think the lack of a Neulasta shot for this last Taxol may reduce the aches and pains, somewhat. Fingers crossed! I've noticed that the fatigue has gotten worse with each treatment, but that is supposed to pass eventually. And I've been more emotional, too. I figure it's just the accumulation of the treatments and all we're going through.

I guess I did celebrate in two ways already. I bought myself a small diamond pendant that I'm wearing 24/7. It's beautiful and sparkly and indestructible. I've kind of felt like I had to be at least a little indestructible to get through chemo. I haven't had an easy life (I'm 47) but this is the hardest thing I've ever had to do. Connecting with the women on this board made it easier and I thank you for it.

(The second way I celebrated was by getting a cup of chocolate ice cream at Culver's, a frozen custard place we have in the Midwest. It's decadent!)

ravdeb · January 2006

marymelodi..I am on weekly taxol to reduce side effects and make it easier on my body. This is because of how sick I got with AC and I had to drop the 4th AC treatment. Studies seem to show that the weekly Taxol and the dose dense are pretty much the same in efficiency..both are good. I was worried when they put me on this instead of the dose dense. But, they told me they were trying to keep me out of danger. Like you said, each woman gets the treatment suitable for her.
ravdeb

maryannecb · January 2006

Diamonds, Cindy what a good idea!
Fists up!

Anonymous · January 2006

Thanks for all the responses. I appreciate your input.
Yes, it makes sense that I don't have to get rad. because I had a mastectomy (even though my ILC was multi-focal/invasive). But I will ask my Onc. just out of curiousity.

Marymelodi,
Thanks for all the info.! I just ordered Susan Love's book -better late than never. And, yes - we must all stay together even after chemo, etc.

Chumfry,
You did it right! What could possibly be better than diamonds and chocolate?

QUESTION:
This may be a ridiculous question but ...DO we or DID we have cancer ? I always wonder which to say: I HAD cancer or I HAVE cancer? Supposedly, my surgeon "got it all" - that makes me think I HAD cancer? Your thoughts would be appreciated.

ONE MORE THING:
Now I really feel 90...my ankles are swollen. Have any of you had this? Each time I have gone for an infusion the Onc. has checked my ankles - but I never knew why. I never asked because until now it hasn't been a problem. I still am feeling extremely achy - my Onc. prescribed Prednosone to help the aches. I haven't taken it yet but will start tomorrow. This is so tough. Thanks again girls, I hope you are all having a good/comfortable weekend.
Laura

ravdeb · January 2006

Laura..
That question of DO we or DID we have cancer has come up before. I say I DO have cancer because that's why I'm on chemo and will have rads...to make sure that none of those baby cells started traveling. My margins and nodes were clear but still...if it was for sure that I had no more cancer, they wouldn't have recommended all these toxic treatments. So, until they tell me I'm free of it all, I still HAVE it.
ravdeb

Graycie · January 2006

As far as I'm concerned, we DO have cancer until we are done with all our treatments and they give us a clean bill of health. I have another question. When you run into someone you haven't seen in a while and they ask "How are you doing" do you tell them you have cancer? It is hard for me, usually I just say "I am doing Good "which is such a lie...Sometimes it is hard for me to talk about it and I don't want them to feel uncomfortable either especially if I start to cry, you never know with me......I have my moments. Graycie

Graycie · January 2006

Laura, Sorry to hear about your ankles being swollen. I have heard other girls complain of that so it must be one of the side effects. I guess I shouldn't complain, it sounds like you are having a harder time of it then me. I am just having a nervous breakdown...HA.. Graycie

ravdeb · January 2006

Graycie... I tell some people what is going on with me when they ask me how I'm doing...depending on who they are and my mood at the moment. At the beginning of my chemo on AC, I was doing my daily walks and ran into a woman I hadn't seen in a long time. We used to take a pottery class together and then would talk for hours on the phone and then, we just sorta got busy with our own lives. So, when I ran into her, with my wig on (as opposed to the scarves that I seem to wear a lot more often these days) I told her I had cancer. She was shocked but very kinds, wanting to know the details, etc. I haven't seen or heard from her since, which is fine, but it seemed appropriate at the time to tell her.
On the other hand, forgetting that I was wearing a scarf, I walked into a medical clinic with my husband (he had an appointment, not me) and the woman at the desk was shocked to see me, and went running out of the office to talk to my husband about what was going on with me. This is such a bad way to let somebody know! I felt so badly for her...not for me, though!
I figure, people who know me, know I have cancer and those who are acquaintances...well, they may have to find out the hard way.If it's hard for you to talk about it, then don't! This is YOUR time and you need to do what is good for YOU right now.
ravdeb

Anonymous · January 2006

I have a hard time saying I have cancer. So I tell people I am going through treatments to prevent recurrence of cancer.

When I'm done with treatments then I can say I HAD cancer. When I go back to teaching a new set of children in September I may be asked the question, "Do you have cancer?". I hope to be able to say, "No, I no longer have cancer."

debbie444 · January 2006

As far as i am concerned i HAD cancer - this treatment is insurance to stop it coming back.

i was a bit down the other day, wondering what it would be like going back to work hairless when i had a lovely note from the teacher i work with. In it he said that one of the kids in his class had said
" It doesnt matter about Misses hair - we never see that anyway - only her smile!"
That really cheered me up for a while. In the mean time i am carefuly washing my face - preserving what few eyebrows i have left! Anyone know how soon after last chemo the hair starts coming back??
Debbie

ake · January 2006

i had cancer too. it's not in my body, so it's not me anymore. i even took off my pink bracelets. i don't want cancer as part of my identity anymore...it's hard enough being bald (and my eyebrows/eyelashes are slowly disappearing...damn!)

my last chemo is thursday...i'm going to be scared when it's over that i don't have my protection anymore, but i'm really starting to imagine my life after chemo...i actually can feel like being normal again is within my sight. i know i have radiation, but still....anything is better than chemo and i'm starting to believe there might be another side after all this!

i think our hair comes back usually a month after our last treatment...although i have this weird pale fuzz stuff going on.

ake · January 2006

my friend sent me a gift today...she sent me a song by india.aire called, "i am not my hair". check it out on itunes...it perked me up

paiger · January 2006

I feel guilty since I am not a regular visitor...but I'm sharing the same journey and have learned much from you guys when Ive popped in here for a lurk...

It helps me to think that the cancer is NOT any longer in my body and that it was removed with the initial surgery. (**not that I don't worry about all the assorted aches and pains!) All the chemo and future rads, hormone therapy, etc is to help prevent recurrence. At least, that's what helps me get through the day.

I can also relate with you Graycie (and I love your name, btw)...it's hard to tell people what's going on. I wear a scarf to work (and it's a new job) so most people who don't work with me but see me either put it together for themselves or think I've got an odd fashion sense. I'm more worried about running into someone I haven't seen in a while.

Aside from that, I'm feeling a wee bit jealous of you girls who are almost done with your chemo treatments. My doctor just change my "program" to weekly taxotere...which essentially means 9 more treatments over the next 12 weeks. I'm not happy about this but will be thankful if the side effects are not as drastic as this last one was. I CANNOT wait to say that I'm all done or one away even. GAH!!! Congrats to you who are there!!! I hope you're quickly telling us how your hair is coming in.

Wishing you all the best,
~paige

Stage 1, 2.1 cm, er+/pr+, her2neu-
AC (complete!) taxotere (1 down/ 9 weekly doses to go)

ake · January 2006

Here's the song I was talking about...these lyrics in particular:

i am not my hair, i am not this skin i am the soul that lives within
is the way i wear my hair make me a better person
is the way i wear my hair make me a better friend
is the way i wear my hair determine my integrity
expressing my creativity

breast cancer and chemotherapy
took away her crowning glory
she promised god if she was to survive
she would enjoy every day of her life

her diamond eyes are sparkling
bowed head like a full moon shining
singing out to the whole wide world

hey i am not my hair, i am not this skin i am not your expectations
i am not my hair, i am not this skin i am the soul that lives within
hey i am not my hair, i am not this skin i am not your expectations
i am not my hair, i am not this skin i am the soul that lives within
well if i wanna shave it closer or if i wanna rock the locks
that wont take a bit away from this soul that i got
if i wanna wear it braided or down my back
i dont see nothing wrong with that
-India.Aire

So ladies, now, I may seem corny, but here's the thing...

I went to a concert (great local band...kinda like folk music) this weekend and the lead singer came out and I immediately realized she had a wig on. Her bandmates were men and were bald...they noted they had just shaved their heads this week. They also had on pink bracelets. My husband told me he heard she had breast cancer. After the intermission, she came back with only a hat...just bald. No wig. It was so cool to see her completely sing her heart out and have so much passion and energy...she later noted she had just started chemo.

I felt this connection to her immediately...I think it's why you ladies have all helped me so much through all this...I realized that we all had different pathology reports. Maybe this singer had positive lymph nodes like me. Maybe she didn't have clear margins. Maybe her tumor was over 2cm. These are all things that would lead to chemotherapy, right? Maybe she's being treated at Georgetown like me. Maybe she's being treated in Maryland or Virginia (remember, she's local). She may be having radiation or she may be taking Herceptin. Here's the thing though...regardless of how different our breast cancers are or were...we still share that moment when we had our diagnosis confirmed and we literally saw our entire world fall apart. We had that moment when our feeling of invulnerability was completely shattered by the word "cancer". And you know what? We all had that moment when we broke down and thought we were going to either die or cry forever. And then we all had that moment when we realized that we could get through this. So, we got up and we got dressed and tried to eat well and saw our oncologists and made decisions and had our scans and began treatment and tried to keep our appts. and realized we are a hell of a lot braver than we ever thought we were. And things like physical beauty doesn't mean shit sometimes. Because you can still go out in public and wear a wig, wear a scarf of hat, or even be bald and look or feel completely exposed and still rock.

We're doing great, ladies. I know it's up and down and there are the days that suck, but we have to remember that we're getting through this. I even read our earlier posts when we were all starting and see how brave we have gotten

-Amy

ravdeb · January 2006

paiger...just thought I'd let you know that you are not alone with your chemo! there are a few of us on this thread who will be finishing chemo mid-March..me included. So, keep up with us...we need you!
ravdeb

ravdeb · January 2006

Debbie,
I can relate to you here...
You were wondering about what it would be like to go back to work hairless... I was just on the phone with my folks and I was wondering with them what it will be like to go to my niece's wedding this summer hairless, since I'm not optimistic that my hair will be back by July (I finish chemo mid-March). Then I was wondering how I'll be able to buy a new dress for this wedding when, after chemo, I have rads and who knows how sore I'll be, etc.... I will probably finish the rads just before I get on the plane to leave for the States for the wedding.
This really depressed me.
And, my eyebrows are thinning...more on the right than the left...ugh!
But then...Amy came through with that terrific song!!!! Thanks for sharing that with us. Makes us remember that we are more than just the hair on our heads (thank goodness...I'd hate to be thought of as a stubble!).
But, Debbie, I love what your student said about your smile. Doesn't that just say it all????
ravdeb

Graycie · January 2006

Another nice CD is Olivia "Stronger than Before" by Olivia Newton John. I didn't know that she is a BC survivor. My daughter found it at the Hallmark store since Hallmark donates some of the proceeds to the Susan G. Komen BC foundation I think that is the only place that sell's it.

2005 ROCK-TOBER CHEMO GIRLS

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