2005 ROCK-TOBER CHEMO GIRLS

ake

hi ladies,

i can't get myself together over my friend with the breast cancer recurrence. she's in my support group and tough as hell and now this is happening to her....recurrence on her sub-clavical lymphnode and maybe a spot on her chest.

i'm struggling with being so angry that this is happening to her and also my own terror that this could happen to me and then relief that it's not and then guilt for feeling that way. any advice?

maryannecb

Amy I think local recurrences are still considered curable... Remember every case is different. We are all individuals with our own pathologies. I will be mad too if I recur, the thought of starting all over again would be daunting for sure.

You know already exactly how to help your friend. Give her your fiendship, pick her up when she is down, listen to her concerns. Sirvivor guilt is a hard one but you know your friend would never wish this on anyone else so try to rationalize it that way.Of course you are relieved it is not you!

One thing this disease does for all of us is put our mortality in our face. Even people with"early disease" can succumb. It is our job to fight the fear and try to live peacefully each day we are well. Make sure you always have something to look forward to. Live all you can while you can. Then when we are 96 we can say what a fine life we had.

Fists up!

RoseMarie

We did it Maryanne!! This was my last chemo too! Congratulations!!!! You always know how to put things just so! You're right, this does put our own mortality in our face. And you're right again when you said we have to fight fear and live peacefully each day...I've been chewing on that thought since I read it!!!
Sherry - I'll be joining you with PT - the nurse looked at my arm today and thinks it's possible lymphedema too. It's mildly swollen at the wrist but the arm has been very sore lately. This PT specializes in lymphedema and chording problems with BC patients...ayayay!
Brenda-Sending positive thoughts your way too!
Amy-I'm so sorry about your friend!

Celebrating no more chemo...I've decided on sushi and wine...I'll wait a few weeks first!! Don't want my liver to go into shock!!

RoseMarie

Lots of wine...by the way...

sherryhaire

Rosemarie--Good luck with your PT therapy they say I will have to go twice a week for 8 weeks I learned alot about lymphodema that I did not know about, she said I had pockets of fluid in my abdomin and legs as well, so far just learned some breathing exercises, more tomorrow

Anonymous

Maryanne,
Rosemarie -

CONGRATULATIONS on finishing chemo! Cheers to both of you!

Laura

maryannecb

Thanks, Laura as I lay awke for hour last time it was oggod feeling to know that soon I will feel better and go back to good sleeps.

Nice feeling to be finished chemo isn't it Rosemarie. Just two more weeks of suffering and then on the mend. I joined the YMCA today for 4 months. Have gained 20 lbs and become very deconditined so ams sure it will help as long as i cam motivate myself to go. Wish me luck.

My oncologist suggested I work fewer hours for the first three months when I start back to work . My job is demanding and includes working 3 day weekend every seventh with possibility of little sleep. He said I sjould not do that part at all ijitially. Boy, I could have kissed him.

Celebrated yesterday with a movie, glass of wine and pecan chocolate sundae... thank God for antiemetics.

Fists up!

Anonymous

FOR THOSE NEEDING HERCEPTIN, I'M CURIOUS...

I don't need to have it, but is it an infusion or a pill? And,
Is this for her2+? Or, ER- & PR- or both?

Thanks,
Laura

Anonymous

Brenda -

Sounds like you have a great balance: family, career and YOU! (And, your family is beautiful!)

Laura

maryannecb

Laura, Herceptin is for those Her2+3 only . It is Iv infusion either every week or every 3 weeks. It has few SE except on very serious one in about 5% , congestive heart failure. It is presently given for a year. Some countries are not yet covering it costs 40,000$/year or so!!! We all have our hearts momitored every 3 months with MUGA scans.

Thanks for asking.

Fists up!

Anonymous

maryanne -
I feel bad that you and others here have to deal with this for a year. Although I am relieved to hear that the sides aren't as bad as chemo. I'm glad they will be doing regular heart checks! I definately plan to be right here for the next year or more with all the Herceptin girls!


When do you start rads? I start on April 17.

WHO ELSE WILL BE STARTING RADS SOON?

I think it's you, me and ravdeb. Anyone else that you know of?

Laura

Anonymous

Amy -

I feel bad that after all you have been through, you now have to experience the pain and sadness of knowing all that your friend (once again) will have to endure. It is so hard to not be angry. Try to think about all the times you have "picked yourself up and dusted yourself off" in the past 6-7 months. Unfortunately, this is one more. But isn't it amazing how resilient you have become? Your pain/sadness/concern is exemplary of your compassion of others.

What type of bc was your friend originally dx'd with and did she have any positive lymph nodes?

Hang in there,
Laura

ravdeb

Had my tattooes today and mapping. Did not like either! Hated having to lay still for so long and the 3 tattooes I got HURT! I'm such a baby about things like that! But, that's okay cuz other than that and a few pains and numb toes, I'm feeling quite good! Maryanne..you will be feeling so much chipper soon now that you are done with chemo...and Rosemarie, too!!!!

Amy...I'm so sorry that you are dealing with your friend's recurrence. Just be there for her when she needs somebody to hold her hand or if she needs a shoulder to cry on or if she just needs a friend to laugh with a bit. You know this as you have always been there for all of us.

And..Amy...you should just be thankful that it hasn't happened to you. It's important to feel thankful and be grateful. That's how I see it. Besides...it gives you the strength to be there for your friend.

ravdeb

Anonymous

Well, my MUGA was at 51% and before it was 66% ... so the doctor called yesterday and she said I cannot take Herceptin on my April 10th appointment. I will have to let my heart rebuild and hopefully start again in May.

RoseMarie

Terynsmom - I'll keep you in my thoughts!!!
Ravdeb - I'm glad you're feeling better!!! I for one slept all day but am feeling ok. I hope that doesn't mean I'll have another sleepless night!
Maryanne - I'm glad you'll be able to take it easy...or easier- at first as you transition back to work. (I'm starting to think about thinking about going back to work!)
Laura - I'll be thinking of you ladies doing rads!
Next week my kids will be off for spring break - I hope to explore the midwest...now that I'm a midwesterner! (Laura, you and I may not live too far from each other!) I MISS warm weather but am excited to have 4 seasons now - never had that in Florida!!
Love to all! I have to add - my 3 year old is standing behind me in the chair I'm sitting in as I type. He just kissed me and told me I'm beautiful...what a man! (Sappy I know.)

Anonymous

Rosemarie -

How many miles are you from downtown Chicago?

Laura

Paula15089

well, as always i am so behind on all the news...

Mary-Anne and Rosemarie - congratulations!! Its the best feeling, isnt it. It can only get better from now on.

Terynsmum - i am sure you'll be back on track in no time! Maybe try some Co-Q10 supplements, its supposed to be good for the heart? Check with your onc of course.

Amy - i hear you... the thought of recurrence and mets never leaves me. I think the best we can do is enjoy life day by day, and not worry too much about the future, which is uncertain anyway. Take good care of your body.. I am sorry about your friend. Be there for her!

Ravdeb - dont worry about rads. I have what must be THE WORST burn, and STILL i insist its nothing compared to chemo. The discomfort is localised, you just dont get (or i didnt anyway) that 'can't get off the bed' feeling, that i hated so much during chemo.

I HAD MY LAST RADS SESSION YESTERDAY!!!!! hurray, all the 'active' treatment is finished!!!

Zoladex and Tamoxifen are to be started shortly... not looking forward to all the side effects. My onc checked my hormone levels, and apparently i am premenopausal, so at least chemo didnt take that away from me. Well, that will change with Zoladex..

A question to other premenopausal ladies - did you discuss with your onc pros and cons of Zoladex+Tamoxifen vs Tamoxifen alone? It just seems to me that most take Tamoxifen only, so I wonder why Zoladex is given to me... I am 90% ER positive, could that be why?

maryannecb

Laura I start rads the day after you on April 18, can't wait to enter and exit this phase.

Don't know much about Zoladex and Tamoxifen together but will look into it Paula.

Ravdeb I have 5 tattoes. My skin is very white and I hate them already. I think Ill see drem about lasering them off after. I feel , well, so marked...

You have gotta love three year old boys, they are so in love with Mom. I just bought my 14 year old his first shaver today and all I got was a grunt. Oh but when he was three!

Rosemarie, what an extra challenge you had moving in the middle of all this. Hope your transition continues smoothly.

Another night of insomnia-only three more doses of the evil Decadron though.Meet with accountant tomorrow to do income tax, didn't finish prep as too tired last night, will do it after kids go to school. Hope it is good news. I hate unforseen taxes!

Fist up!

ake

paula...maybe it depends on how ER+ you are. I'm about 75% ER+ which is lower than yours. i'm going to take tamoxifen for 2 years and then re-evaluate if we continue Tamoxifen, change to something else, etc.

congrats on finishing treatment!!!!! is your head bare yet? might be a way to mark the end of treatment

debbie444

Had my first complimentary massage therapy today - went to work feeling totally chilled!!
My masseusse said something that rang true. When i said that i got down every 3 - 4 weeks, she said that even tho chemo stopped my periods my hormones were still probably affecting my moods and ability to cope with things in line with my old cycle. Now i know there is a reason i feel better about having weepy fits!!
Debbie

Anonymous

I had a visit to my onc and she said OVARIES OUT, so I am going to see my gyne again for the consult. I am glad I won't have to take Tamoxifen now that I am having the surgery. Even though I had been on chemo, my body was still producing estrogen, small amounts but still, I don't want it.

I was in the chemo chair next to a lady who now has mets and she was on Tamoxifen and still had her periods. I asked if she told her doc and said NO..... not too smart. I would have told ASAP. My gyne said that in some women the Tamoxifen does not work 100% and that their bodies would start producing estrogen again after a few years.

Anyway, I may tell my onc too much and I give her copies of studies I find on this site but at least she knows what's going on in my body and in my head.

RoseMarie

Laura - just mapquested it...I'm about 188 miles from Chicago - a little more than 3 hours...not too far!!

Thanks Maryanne, It's been ok - love my new house, miss my family - but I was hoping to leave all the bad memories of the last few months behind. Forgot the minor fact that I wasn't QUITE done! And sooo true about 3 year old boys!! Good luck with your taxes!
I guess I need to go back and read my path report again. I just know I'm er/pr+, don't remember being given a %. April 11th is my next appt...decisions, decisions!
Paula - congrats on finishing rads!!

ravdeb

Hey Terynsmom..hope all is well with that big ol' heart of yours.

Paula..thanks for the pep talk on the rads..looks like I may get to do them in the late afternoons and that suits me really great as then I can get to work on other things in the mornings..I'm an hour and a half from the center and was worried it would take up my entire day for the 7 weeks. Congrats on finishing treatments!!

Maryanne..My skin is very white, too, and these 3 dang tattooes are bigger than I thought! I don't know if I'll get rid of them or not, but I agree with you..I feel marked and I really don't like the whole feeling about that. I have a bad feeling about tattooes in general, and I understand why they do them, but still..don't like it!!!!

Still itching...for those who itched from Taxol, how long did it take to stop itching???

Rosemarie..hope the fatigue is fading for you. I really am feeling better in that dept despite the fact that I'm not sleeping much and itching like @%*$and have neuropathy in feet and hands. So much fun!

ravdeb

marymelodi

Haven't posted in a few days. I've passed the halfway mark of the radiation treatments to my whole breast. I've had 15 of the planned 25. Then I will get 8 boosters to the tumor site. Today my rad onc will "draw" or map the booster area. I have begun to be itchy under the breast, in the fold, and so have used hydrocortizone cream to help calm that down. So far, the fatigue factor is not too bad. Of course, I go to bed earlier and earlier . . . 9:30 is now the time I try to get down on the pillow. Maybe you remember that I said I was in a study of two complementary therapies. I am getting polarity treatment, which is supposed to be balancing the flow of electromagnetic energy in my body. I don't know if I really buy that explanation, but I do like the touch treatment. It is sort of like a mix of massage, stretching, accupressure, and relaxation. Since it started, I have been sleeping better. Of course, we are also getting more sunlight and so my circadian rhythms may be getting back on track. At any rate, if I can afford it, after the study is over, I may continue this kind of treatment for a while.

Hope everyone is well today. I'm sending you positive "vibes" from my electromagnetically balanced self!

maryannecb

Dang, my hair is falling out again. Probably only had a good liitle growth as I took those two weeks off chemo for my trip. I will be so mad if it all goes...

I don't owe extra tax Yeah ,Bought a lotto ticket as obviously my lucky day.

Going on third night of no sleep. Will Definitely take sleep meds tonight. I am bagged.

Terynsmom, hope all goes well with oopherectomy, who needs the damn things in your situation, you have your beautiful daughter so they have done their job. I think it is great to keep in step with onc. I know it makes mine a little nervous but because I have brought him articles I got my Herceptin started 5 months ahead of his plan. Keep up the good work. I am sure your MUGA will return to normal next month then off you go again with Herceptin. My Muga is Tuesday, have had 4 doses so far, cross your fingers mine goes well.

Laura we have a Nukemboobies thread going for April, have you been there? I am so overtired I may have forgotten your posts , will go look.

Fists up!

debbie444

Terynsmom - my onc is referring me to a cons to see about ovary removal. She is going to talk to me about either removal or monthly injections to block them. We could start our own camp!! I am not holding my breath tho, my herceptin test resulsts still arent back from, wait for it OCTOBER!!!! I suppose i should be lucky that i live in an area even prepared to give it to me. When i see in the news about people over here taking health authorities to court to be given it ( and majority losing) it makes me thankful i am at a teaching hospital!!

I am feeling very mellow ( could it be the massage?) so will make the most of the spring sunshine and take my dog to the duck pond on the village green.
Take care

Debbie

debbie444

Meet Sam - my weapon in the weight loss campaign. O.k , he doesnt seem to be working yet but he only has little legs - give him a chance!!

Debbie

TracySeattle

Can someone tell me exactly what neuropathy is? I have not worried about it because I have not had any feet/hand problems, but now, my right hand aches and my first three fingers are numb a lot. Is that what happens with neuropathy or could it be my carpal tunnel from many years ago coming back again?

maryannecb

That is classic carpal tunnel, often worse at night, usually affects the first three fingers and half of ring finger. You can buy a resting splint at a pharmacy to wear when you go to bed. Also maybe you should look at how you are using or overusing your hand.

My Her2 status took about one month, Debbie, get on their case, you will want to get going ASAP if it is 3+. The squeaky wheel gets the grease. Your dog is cute, mine is choc lab, she is part of my weight loss program too.

Fists up!

TracySeattle

Mary-Anne,
Thanks I was thinking that it could be carpal tunnel. I can tell you what is causing it. I have this silly hand held Yahtzee game.... I am ADDICTED to it! I guess the game playing will have to stop! At least it is an ailment unrelated to BC!