Starting Chemo October 2009

Scoobydoo · February 2010

Hi Valerie - Yes you should hop on that right away. See if you can get a referral to a LE physical therapist. From what I hear the earlier you catch it the better results you get. Cording is feeling like there is a tight piano wire in your arm when you extend it. It can cause pain in different places on your arm and even under your armpit. Your issue might not be LE but it is smart to get it checked out right away.

Anita

azdiva · February 2010

OK, for those of us done with chemo - are you starting to get antsy about side effects? Every morning I get up and think "When are these stupid se's going to end? When is my hair going to start growing? etc. etc"

I am SO OVER this!!

And has anyone asked whether it is ok to NOT start tamoxifen (or Femara or whatever) for another month or so? I would really like to have one month of blissful cancer nothingness!! HA! I think I'm being overly optimistic. I don't believe I will ever have a full month of blissful cancer nothingness again!! WAAAAAAHHHH! (That is my "Oh pity me!" cry. I know, I'm just being a big baby!!)

Love ya!

Laura

txstardust · February 2010

You are NOT being a baby, Laura! I think it's reasonable to have some cancer-treatment-free weeks. And I'm with you on the SE's. I was just complaining yesterday about how long it's going to take for my hair to grow back. NO GROWTH AT ALL on my end yet. Still a cue-ball head. And still tired as all get out. But, I have faith that this too shall pass, and that I will start to feel like a normal person before too long, at least I hope to have a little bit of time with energy before the radiation zaps it out of me again.

Val, take care of yourself! I've started noticing some swelling in my "bad" arm as well, maybe I should get it checked out, too. Who do you ask for a referral, I wonder?

Peace to all!

Shelby

MarieK · February 2010

Hi All!

I've had cording issues as well - starting under my arm, then when that went away it went to my forearm and now it's in my hand/wrist. It feels tight and bruise-y when I move it. The surgeon assures me that this is normal as the cording moves down my arm and that I will have to continue to stretch this arm every day. Eventually I will be pain free again.

So far no LE or swelling but I agree Val you should have it looked into before it goes full blown. OR it might have been a sensitivity to the bracelets you were wearing? My skin has become so sensitive I have to watch how much sun I get, what body wash I use and even where clothes rub on me. Being in the desert right now - Palm Springs - it's so dry here that my skin is starting to separate and flake. AND I've been sitting in the shade!

And I'm having a terrible time with my eyes and focus! At home my eyes are dry but not this bad - the dryness in both skin and eyes - seems to be one of the lingering SEs that I've got from chemo.

Laura I seem to remember reading that you are having trouble with your eyes. Did you go see an eye doctor yet? I'm considering it but I'm kind of afraid to.

As for hair - nothing still on my body but on the top of my head my hair is growing like weeds. Unfortunately it's still the white fluffy stuff but it's so long it's starting to lay down!

Well girls - breakfast is over and it's time for a walk around the resort. It's sunny and warm here and I intend to soak up as much warmth as I can before I return to gray & rainy Vancouver.

Big Hugs to all!

Marie

azdiva · February 2010

Marie -

I am still having trouble with my eyes. I talked to my Onc about it, and he said it IS a side effect of the chemo. Told me not to go out and buy glasses because it will likely resolve itself. So I am wearing readers (when I remember them, damn chemo brain!). It is definitely to the point where I am uncomfortable driving at night. Doesn't STOP me from driving at night, so look out!! HAHAHA

I have lots of dryer lint on my head, but really no hair anywhere else. When "other" hair starts growing, I will start looking for my real head hair.

Husband just left for parts unknown (Indonesia, I think?), so party at my house with the kids later . . . Maybe! OK, who am I kidding? No party, just going to bed early after eating half a tub of ice cream.

Gotta go get my blood drawn. I would just blow it off (such a rebel!), but my PS won't do my fills tomorrow if I don't have the report.

Love,

Laura

micheleboots · February 2010

Hello there ladies.

Marie, sounds like you are having a good time down south..I would love to take a vacation down south, but alas my visa won't allow it...whaaaa.

Laura, I have a little hair on my head, not to much...my DH inspects it every day and gives me reports...he says he will miss the topless me..Right now it is gray and sticking straight up...can't wait to color it and have it lay down on my head. I too was hoping for a few more days of cancer free crap...but I start rads on Thursday...I have mixed emotions...fear and excitement...I just want it done.

valeriekd · February 2010

Hey everybody - My husband JUST heard on the radio that Brigham and Womens/Dana Farber JUST came out w/ a study stating that women w/ 1,2 and stage 3 breast CA can lower mortality rate by 50% w/ aspirin regimen b/c of the anti-inflammatory affect. I know there was some question a while ago if aspirin was helpful for er- women (b/c they thought it was the aromatase in aspirin) but he did not know if it was BC in general or just er+; can't find it on their website but he said he just heard it on the news in the car. I'll try and find out more and report out. Hopefully,this means something!Be good- Valerie

valeriekd · February 2010

Oh if you want to look this up - and the findings are from nurses ONLY but looks interesting is in Boston.com. V

JustmeAlicia · February 2010

Wow that sounds interesting about the aspirin and BC. I will have to check that out.

I am 9 days post my last chemo, I am feeling more 'normalish' each day. NO more pain killers, no more laxatives ~ just tryint to let my body get normal. Sleeping is still a problem. I feel pretty good. My hair is NOT growing. I too have the dryer lint all over my head but that's it. I am obsessed and just keep looking at it. It's making me nuts ~

We are in Vermont on a family vacation. Hope everyone is having a good week.

Hugs ~

Alicia

micheleboots · February 2010

Alicia, I know what you mean about being obsessed with looking at your hair...mine is growing in like a monk head, mostly at the sides...it is a little bit Chia as well...and gray..Damn.

have a great time in Vermont.

txstardust · February 2010

I am getting worried, all of y'all are growing something on your head and I have NOTHING, no dryer lint, no stubble, nothing. Is it going to grow back? I'm freaking out a little bit here.

I'm meeting with the rad onc today. Add to the freaking out! I'm getting tired of cancer, you know? Feeling kinda down the last couple of days.

Peace to all...

Scoobydoo · February 2010

Shelby - you hair WILL return. Please don't stress about it. I know how you feel. I am just now seeing little sprouts all over my head and I have been done with chemo since 1/4. It will grow back. I am tired of cancer too. Please know that we are here for you especially when you feel down or just plain are tired of being tired.

Michele- Loved the monk comment. That is exactly what I look like.

Well today is my day 2 of rads. So far so good. I am actually at work for a few hours. Drving into DC was a nightmare as they still have not plowed all the roads of snow. Ugh.

Anita

micheleboots · February 2010

Shelby, don't freak it will grow back...just takes time...that chemo is powerful shit..And remember we are almost over the hump....I can see the light at the end of this tunnel...not "The Big White Light", but the light from all the torches our sisters before us are holding to help light the way for us...

CAtharsis · February 2010

Hair, hair, hair... My 2 cents: 8 weeks after my last chemo, my hair is back all over my head, not too weird (same colour, same texture) and so soft. It is so short that it does not look too good but I evaluate that in 1 to 2 months, I will REALLY have kind of an "hairdo"

Congrats to all of you girls who have finished chemo, what a relief, what a milestone, we went through this and faced the casualties with courage. Bravo! We have such a reason to be proud: under extreme circumstances,we have had to go within our inner strength, well, for my part, into unexpected inner strength.

Last week, I went to surgery (partial mast. and axillary nodes dissection) and it went pretty well. In the morning, ultrasound and mammograms showed no cancer after the neoadjuvant chemo did its job. Yippeee! Now waiting for pathology report to know the next step: surgery if no clean margin, chemo if whatever shows the cancer is still invasive, rads if everything is ok...

Now, I feel "cancer free" and I do my arm exercises to control LE symptoms, none yet. I am enjoying some free time. The only bugging thing is to not go to my spinning classes, I long for that energy boost.

Good luck to us all for the next steps!

Isabelle

micheleboots · February 2010

Isabelle, good to see you back. Glad all went well..now the hard part...waiting.

micheleboots · February 2010

So now I am starting to think about hormone theropy.....

I am wondering if anyone has spoken with their onc about such a thing...my choices are the following.

1. tamoxefin...for five years...scary Ses. but good track record.

2. tamoxefin along with injections( zoladex, or lupron) to shut down overies...or perhaps overy removal..

3. aromatase inhibitors( femera, aromasin, or arimidex) as well as injestions to shut overies/ or removal of overies.

Has anyone else got to this point?

azdiva · February 2010

Michele -

I have been thinking about the hormone therapy stuff for awhile. My choices are pretty much the same. Tamoxifen for 5. Tamoxifen + Lupron. Oophorectomy + Femara.

I am really worried about all of the options! I would like to LOSE some weight. Doesn't seem likely with any option. My Onc says side effects are less with Femara, but it sure doesn't look that way from reading the boards!!

I've kind of made a mini-decision that I will start with the Tamoxifen and see how it goes. I plan to have that bladder "sling" surgery (God love what kids do to our bodies!!) at some point in the near future and I MAY have an ooph at that time. If I do, I will probably switch to Femara. But if I start having "cognitive loss" or debilitating joint pain or WHATEVER I will go back to Tamoxifen. Hell, I have even toyed with the idea of just having the ooph and nothing else. My cancer was only 50% ER+, will the estrogen blockers even do that much more good? I am thinking the Zometa will be more helpful than tamoxifen or Femara. Who knows?

On a positive note - I am now scheduled for my implant exchange surgery on APRIL 8th!! That is one week after my 45th birthday, so they shall forever be known as Birthday Boobs (or Foobs, as the case may be). Although I really haven't had any pain from the tissue expanders, it will certainly be nice to get these rocks off my chest. And, I will admit, I am getting liposuction and some scar revisions while I'm in there. Of course, things can change if my PET scan isn't good, but I am not going to let my thoughts go down that road right now. (Supposed to have PET some time in March).

Did anyone else read about aspirin yesterday? Evidently, it helps stop BC recurrence. I took one for fun.

Feeling feisty today, and hope you all are too -

Laura

txstardust · February 2010

This whole hormone question is confusing. I'm also only about 60% ER+, but I don't know really the significance of the percentage. My doc seemed to say that if I have the ooph, I won't need the Tamox or anything else. Does that sound right? Maybe I heard him wrong. I'll have to ask him when I see him in a couple of weeks. Good luck to everyone making this decision. I wish it were more cut and dried!

I'm going for my first post-dx mammo today. I could barely sleep last night for nightmares about the mammo! Think good thoughts for me!

Isabelle, glad you had a good response to the chemo! That must be a relief.

Peace to all,

Shelby

txstardust · February 2010

CLEAR MAMMO, hooray!!

valeriekd · February 2010

Congrats Shelby! It makes all that chemo sh-t seem worthwhile!
Love, Valerie

micheleboots · February 2010

Shelby, doing the happy dance for you....yahoo..

Had my first rads treatment today..it was cold and I shivered most of the time...but I think it was also my nerves as well...tomorrow will be shorter...1 down...24 to go.

azdiva · February 2010

Yay Shelby!!!

If you don't mind my asking, what did they mammogram? I thought you had a mast? Damn chemo brain!!!

I just bought some Biotin at Walgreens. Suppose to help grow hair. We shall see! I also bought Turmeric (w/ black pepper) and Melatonin. So, here are my proposed supplements. Let me know if you all are taking others, or if you think I'm crazy -

Calcium (+D, +K) 1500mg morning and night

Omega 3 morning and night

Black Cohosh 540 mg night

Broccolive midday

Aspirin full strength once every day/other day (study said around 5 times per week)

Melatonin night

Biotin

Elations drink (glucosomine/chondroitin)

Folic Acid w/ DHA (600 mcg and B-12 50 mcg)

B-6 100 mg

B-1 100 mg

NAC (N-Acetyl-L-Cysteine) 600 mg

Evening Primrose Oil 500 mg

AND I will probably add in the good old Multi-Vitamin just to round things out!

I'm going to be like one of those little old ladies who carries around the big pill minder. This, coming from someone who never even took vitamins on a regular basis before!!

Maybe I will be taking so many pills I won't be hungry and then I'll lose weight!!

My Onc told me to wait about 4 weeks to go crazy with the vitamins. I think since it has now been over 2 weeks I can start adding stuff in. I am impatient.

Michele - I wouldn't have thought that rads would be cold. Did you feel anything while they were doing it? How do you feel now? I hope this will be easier than chemo and that it zaps any sneaky BC cells that may have held on.

Signing off for now. After reading what I just wrote, I think I'm already experiencing cognitive loss and I haven't even started an estrogen blocker yet!

Love to All -

Laura

MaryNY · February 2010

Congrats Shelby.

Laura, that's a heavy regiment of vitamins and supplements. Will you have room for food too? About taking aspirin to reduce risk of recurrence, many doctors say to hold off on that for now as the study was "observational" rather than a randomized trial.

See

Aspirin may reduce breast cancer spread
Posted: 2/17/10
By Jennifer Bixler
CNN Medical Executive Producer

Dr. Eric Jacobs of the American Cancer Society agrees. He says the study results are "exciting," but also points out some important caveats. He says two earlier studies had mixed results. "It would be premature for breast cancer survivors to use aspirin in order to reduce the risk of breast cancer recurrence or of dying from their disease," said Jacobs in an e-mail to CNN.

So should breast cancer survivors start taking aspirin? Experts say for now, no. But if women are taking aspirin for other diseases, says Holmes, "They might take some comfort in knowing they might be preventing their cancer from returning."

jeanl151 · February 2010

hi girls,

I am 8 days past final chemo and hoping foulish SEs would stop, Today's question is has anyone had there port removed? I am wondering how involved it is. Doctor said it is up to me when I have it out.

Next week I go for my mapping for rads. A new road to go down. Looking forward to spring and a break from medical appointments!!!

Jean

micheleboots · February 2010

Laura, the room was cold...I guess to keep the equipment cool...I did get a blanket once I told them I was cool..I think as well I was nervous and the combo made me shiver...tomorrow will be much shorter so all will be good.

joanneasiata · February 2010

LAURA

Women your appetite for pills is like your appetite for food LOL , I'm taking is a strong multi and iron and i already eat heaps of veggies and fruit so for me that will do

Im not starting rads till the end of March ,so yeah I'm having some great free time been so busy , i seen my onco today and Ive got a cyst on my liver, he said he isn't to concerned about it and will have another scan after rads, don't know if i should worried about a cyst what do you think

VAL Hows the arm going hope its getting better.

JEAN

Hope you get a break a get to kick up your heals.

SHELBY

PHEW good to be clear ah

MICHELE

Im not going to think about the next step until i come to it, my onco said that it will be tamox but he is also thinking about a new thing instead, i didn't even ask him about it, i don't care at the moment denial is my place of dwelling for the time being and i love it .

About hair ,my head feels like velvet i love the feel so does my kids they are always rubbing my head i sooo love that. well ill be at work cutting peoples hair and doing all sorts of fab hair cuts when you all would be reading this , soon you all will be sitting in the salons for your first hair cuts oh how exciting

loads of love

PRINCESS JOJO

txstardust · February 2010

Laura, I had a lumpectomy, and they only mammo'd that breast. I'm glad it's clear, but of course I go back to remembering that they couldn't see my original tumor on the mammo, so I'm still a bit nervous.

Speaking of supplements - wow, Laura, that's quite a list. I'm only taking calcium and vitamin D, because I have to for the study I'm in. I found some calcium/Vit D chews that taste like caramels, so I actually take it! I've never been good at taking pills, so I try to get my vitamins and minerals from my food. Fortunately, I like veggies and fruits, so it's not too hard. I might look into that Biotin, though - is that something you take by mouth, or do you put it on your head? My head is still essentially bald, can't feel much of anything yet.

Jojo, I wish I could come to you for my first haircut, whenever that happens!

Michele, good luck with the rads - and everyone else who's getting started. The rad onc said I will have 6 weeks of treatments. That seems like an eternity to me. Oh well, gotta do what I gotta do.

Jean, my port is staying in for now, because I'm getting monthly Zometa infusions. Once the Zometa infusions are more spread out, I will get the port out. i hear it's an easy procedure, where they don't even put you to sleep!

Peace to all...

JustmeAlicia · February 2010

Hi girls ! A lot going on here. I am on vacation in Vermont still but wanted to pop in.

Shelby so glad your mammo was all clear. Congrats. Don't worry your hair will grow back, I think Michele said it best about the white light and NOT the big bright one for goodness sake. I want hair too. HECK I'm freezing bald up here. I put a bandana on, a wool hat and my hood. LOL

Michele ~ your tamoxifen debate. I will be doing 5 years of tamoxifen if I can tolerate it. My onc said we will wait to see what happens with my period WHEN and if it returns. I will be 43 in a few months. Glad you started your rads and hoping it goes quickly for you. I hear it is cold in that room because they have to keep the machine cool !

To everyone else JOJO, Anita, Juanelle, Jean, Mary, Laurie, Val and anyone I am forgetting which I am sure I am ~ a good DAY!

Alicia

jeanl151 · February 2010

Alicia, hope you are enjoying your vacation. We are leaving this morning for an overnight in NH. I thought a little hotel time, pool time and a few meals out would be a nice way for the four of us to celebrate the end of chemo.

enjoy your weekend girls, we deserve some relaxing moments, Jean

MarieK · February 2010

Hi All!

I'm back from sunny Palm Springs to sunny Vancouver.

This coming week I have 2 drs appt - 1 to see my BS (thickening is gone now but he wants to follow up) and 2 to see an OBGYN for a consult on having my ovaries and tubes removed as an alternative to taking Tamoxifen for 5 years.

Next week I see a PS for a consult on recon - Laura I like your idea of having other "stuff" done at the same time as the exchange. I don't have anything in right now (no TEs) but I'll be asking about a little lipo myself when I do have surgery. Where the heck did all this fluffy fat stuff come from around my middle and on my back???? I want it gone! So maybe a little lipo will give me a head start on getting back into shape?

Hugs to all,

Marie

Starting Chemo October 2009

Comments

Categories