2012 sisters

Jpmomof3, you're right. It gets better once you know what to expect and what to prepare for. Thinking of you and hope you recover quickly with no complications. 

Tazzy, so glad you have a date now! I remember how terrified I was before the mastectomy, and how I realized afterwards how ridiculous it was to have agonized so much. It is human to be afraid, I guess, but as I've said before, I'll take surgery before chemo anytime, because it's over within days. Another totally different thing: I thought I was home and dry after the chemo, but discovered just now that one of my toenails is lifting, and will be coming off soon. Oh well, I will just have to glue it or something, because I am going to a wedding on Saturday with ten toenails. 

 Juneaubugg, chemo is scary. I was so furious, rebelious and upset when I had one positive lymph node, and had to get chemo. I felt so cheated, and refused to do it, but my husband begged me. In the sleepless early hours of the morning before my first chemo a strange peace and calm came over me, and I realized that I had to do this to give myself the best chance. It was better to submit, and to work with it rather than against it. As those drugs ran into my veins, I repeated in my head: Kill, kill, kill, kill! I felt then that I was positively doing something to fight the cancer. It was unpleasant but doable, and went by much faster than I thought. After the first one you will know what to expect. Hugs to you!

Tazzy-So glad you finally got the date and the waiting is the worst part. The surgery was a lot better than I thought it would be. Pain was very nothing to talk about as long as you take the pain meds they gave you as ordered.

Juneaubugg-So you've decided to do chemo after all. I missed that post but I'm gald that your new boss gave you an extension on starting your new job in Nov. Now you have time to get the treatment done without worrying if you still ahve a job. 

Websister-Glad that you also have a plan on your chemo and herceptin, let me know about the port placement since I might be doing the port thing soon as well.

Soya, isn't that the truth of it, I wish this stuff was more simple. I hope you can come to a decision with the information you have and feel good about it. We really don't know which of these treatments we need and which are working. But we have to throw what we can at it as long as it is likely to be a benefit more than it is a risk. But it is not an easy decision.



Tpoly, great news on the clean scans!



Websister, glad you have a plan on chemo, now it's just a matter of preparing mentally and getting it started. All of these treatments come with so much anticipation and worry, it will be good just to get it started so that you can be that much closer to being done with it. Good luck on the spleen scans, hope all that is nothing.

Ramols---I am having faith that the rads will take care of anything that is left.  I had a sentinel node biopsy which basically didn't work for whatever reason.  It did not mark the way it was supposed to so my surgeon ended up doing a dissection and took out 11.  6 of those had cancer in them.  Originally they had told me 3 from the PET scan prior to chemo.  My MO said there is a good chance that they removed them all but if not the rads will take care of anything left behind.  Its that unknown factor that is worrying me right now.

I think I would be so much better off mentally if I could just get these rads going.  I cried to my DH for the first time in a few months.  I am beyond discouraged and hate that there are so many factors of this illness that are out of my control.  I worried a lot less at the beginning of my diagnosis then I do now.

jpmom-The peace of mind that comes with that second surgery is worth it.  I was so discouraged when my BS told me he had to go back in but knowing that second surgery lessened the chance of recurrence was completely worth it.  I'm just sorry you have to do it too.  Even though I try every day to have a positive attitude, this all just sucks!!!!

Hmp, welcome, and sorry you have to be here. I'll say it again, waiting is the hardest of this journey. Hang in there.

HMP12Ind-welcome. It sucks to be here, but we welcome you with open arms ((( hugs included ))). All we have we share; our experience, strength and hope with each other.



Good night laides. Meet my BS for first follow up tomorrow. Hoping she'll say something to change my mind about chemo.

Tpolychron: we need a "LIKE" button on here.

Websister... yay for vacations - where are you going? Good luck for tomorrow. Keep us posted. Jpmom is right what she said about chemo tx's - good words.

Liefie: bummer on the toenail... hang onto that little bugger. I haven't lost mine but they are ‘thinner' than they normally would be.

Soya - I will definitely be taking the pain meds...not the time for me to be a hero - ha ha!! Hope you can soon come to a decision and yes what we need is a "that was easy" button. Sending you positive vibes.

Ramols: I do agree... everyone here is an inspiration to each other in some way. Just the post I read of yours really just resonated with me at the time... plus I am feeling quite emotional as well - go figure eh? But still, happy you are doing so well after your BMX and look forward to reading more about your progress.

HMP - glad you found us, crappy we have to be here, but wonderful ladies on here with great advice, love and laughter.

Juneau... let us know how you get on today - good luck.

jpmom..so sorry about the nodes... yep - its really f*cking crap hearing all of this, whether it changes anything or not... Just adds to the whole bc burden crap.

Thinking of you all. We are going camping again this weekend with our friends who have the 5th wheel. Will be a good distraction for us. Off shopping today, then gardening. But before that I am going for a nice walk before it gets too hot.

Wishing each and every one of you love and hugs xxxx

Juneaubugg You must be great at your job to have both your old employer and your possible new employer concerned about your health and trying to accomodate you throughout all this. That's got to make you feel great! Goodluck with the BS appointment. Hope she can help you with your decision.

SoyaandPepper and Tpolychron you are both so right. It is all such a crap shoot. I was googling around trying to find  links to something/anything that might help you soya and others debating whether or not to have chemo and I couldn't believe how many different opinions even the doctors had as to what was most effective for different patients, cancers etc. It really makes it so tough when the doctors seem to have differing opinions on alot of our treatments and the different drugs they can use. How are we as patients supposed to make an educated decision on something when there are so few  "facts". THe only true fact seems to be that everything about BC is a crap shoot for the doctors as well. Even taking the tamoxifen/ aromatase inhibitors-we take those after a bmx or lumpectomy just in case any estrogen+ cancer cells got into the lymph or blood in search of a new home. There again it's "incase". Then if those cells exist and happen to try to set up shop somewhere else, we hope that the meds prevent them from growing. Lot of ifs and just incases in there. Then there seems to be a debate as to which drug works best for who and should postmenopausal women be given tamox then an arom inhib or just go straight to the arom inhib. Yesterday I read on here that they found if post-menopausal women have too high of a bmi that the arimidex (which I am now taking) may not be as effective as tomoxifen. Just last week I was feeling real good about my arimidex because I read a study that it had the largest effect on post-meno women. So now after yesterdays study, I worry about my bmi, whether its effective and should I try to lose weight etc, etc but then like you said Soya, there may or may not be those roaming cells in my body so is my worrying even worth it. (I know reducing my bmi index is an all around good thing in general but in all this chaos I have been craving comfort food- that's my current excuse for overeating-lol)  There's a better chance that there aren't any cancer cells drifting around that are going to grow somewhere but when you hear the word "reoccurance" so often at the doctors, you do get to  feeling that you must have C cells floating around despite statistics and the what if, should I, am I doing the right thing worry path starts up again.  I don't know but I think I read too much into things unnecessarily. I'm going to try to work on that.

HMP12lnd   Sorry you had to find yourself here. I too had a stong family history but came back Brac negative.(although my insurance wouldn't cover the 2nd part-the BART test so I guess I'll never know for sure if the Brac tests are accurate until I can get that part of it done)If it isn't brac though with our family history it sure seems it has to be some other genetic thing,doesn't it? Glad you got your surgery date. Like everyone said, waiting is the worst part.

Websister glad you have a plan and things are moving again. Even though we may not always like the direction we have to move, it's alot easier once all the plans and everything are in motion.Hope the spleen thing is just one of those "little nothings" that they often find on the scans. I was BRAC - but I did decide to have the oopherectomy at the same time as my dmx just so I never had to worry about ovarian cancer too. I'm so glad I did as that part of surgery  truly seemed painfree in combination with the dmx and recon with TE's.

Jpmom sorry about your latest results and need for more surgery. Hopefully this surgery will be it. Did they put it before the tumor board again like you thought they would do?

Ramols sounds like you are feeling pretty good and able to feel some sense of "normalcy" running around with your mom and cooking homecooked meals.

Chrissera Glad you are feeling better too and had a "normal" day with your mom. I feel bad that she has been thru so much. Gosh dealing with the illness and death of your children has got to be the number one nightmare for a parent. It probably really helped her getting to spend the day with you and seeing you do "regular" things and feeling ok. I'm sorry to hear about your sister-in-law though but it is really nice that you have each other to talk thru some of this. She is very lucky to have you.

Liefie get out that super glue and get those sandals on. Sometimes the slightest little moments of feeling feminine after all this crap are so nice and make us feel like we are our "old normal".  I didn't go thru the nail issues like those of you that had chemo but it's crazy how all of this BC stuff affects us in so many ways big and small.I used to polish my nails all the time. Then when I had my 1st surgery and had to remove my nail polish according to the surgical orders and then they kept scheduling surgery after surgery,  I just didn't bother painting my nails anymore. My husband just asked me just last week why I never polish my nails anymore and I told him it just didn't seem worth it because it seems like I'd just have to take it off again for surgery. Don't you know I decided to go ahead and polish my nails the other day, then I went to the ps the next day for a fill and she said " let's schedule your exchange surgery." I'm going to be paranoid now for the rest of my life that if I polish my nails I'm going to need surgery.LOL

Lostimo-glad that nasty big C is out of there and the drains too! That's great.

TAZZY wow a date and a pretty close one at that! Wonderful!!! Surgery will be over with before you know it.Have fun shopping and gardening and especially on your camping trip.  Sounds great and take it easy on the DH!

Hope I didn't miss anyone as I scanned thru here pretty fast. If I did I apologize but know that you are all in my thoughts and prayers day in and day out as we all go thru this crap together.

Hello everyone, just checking in. I had my first chemo on Tuesday and have just been resting mostly the past two days. Went well so far, well as well as it can go I guess . The meds are helping to prevent nausea and vomiting but feel headache and fatigue mostly. I did get my period the morning of chemo day so it's probably not a good combination.

There are so many post to catch up with so I will make an attempt .

Jpmom: I am doing pretty much the same thing your going thru. I didn't get clean margins but proceeded w mastectomy and ALND. Now I'm starting the same chemo treatment you just went thru and it is concerning that the chemo didn't clear the cancer the first time but like so many have said I ultimately had to decide to throw everything against this and hope for the best. Best wishes w your reexcision. I'm sure they will get the rest of it w the rads too!

Tazzy: im glad you got your surgery date, yay!!!

Juneaubug: chemo is a tough decision, I remember when my MO gave me an option of going on a clinical trial to be randomly selected depending on oncotype score to tamoxifan and that was tough but at the end of the day, I chose the route that I would have no regrets. It still doesnt necessarily better but I am at peace w my decision and although scary I hope you find peace w the route you take. It seems like you decided already but just my two cents. Hope that is helpful, still a little groggy .

2friedeggs: that was an awful experience w your phy-ass, I'm glad u got out of there!

Soya: I also hope u fing the right choice for u, sounds like u had a patient MO to explain everything to you.

Hello and best wishes to all, sorry for the many that I know I must've missed responding to but you're all in my heart and thoughts!

hello Soya, I am in a clinical trial NSABP-b47 (or something like this it is a topic about this around here) and I am in the herceptin arm. I am pretty happy for this because I want to receive everything is possible. and radiation also. not many SE from herceptin for the moment, we'll see in a year. 

if you google the trial , you can find a lot of infos about .  

have a nice day 

Jaz, dont worry about chemo, it almost always works to some extent and since everyones cancer is getetically different you cant tell how any one persons cancer will respond.  about 30 percent will have a complete response and almost everyone will have some response.  Chemo will kill your cancer.  

In the near future they will do genetic testing on each individuals cancer cells so that they can tailor a custom chemo.  They are finding that with the genetic testing they can predict much better which chemo will work and that sometimes chemo drugs that arent typically used for certain types of cancers can be very effective if the genetics are right.  That is down the road though. Hopefully none of us will need to benfit from that because we are going to beat it now and never have a recurrence...

 Tina, rads is my salvation.  I cant wait to get it started.  My second surgery wont likely be for a couple of weeks.  I hope the healing goes fast because I want to start killing any sneaky bastard cancer cells that might still be there.  

 They called today to let me know that they found a fifth positive node.  yipee.  Doesnt change anything, just makes me more grumpy about all this.

The pathologist didnt get the studies back in time so they are doing my case at tumor board next wednesday. I see my BS on Monday to get this re excision and mammo and such in the works.  I see my MO next friday.  My biggest fear is that they are going to recommend more chemo.  It is extremely rare to do that though.  I got my port taken out 3 days ago during my lumpectomy so I sure hope I dont have to go through that again.  Plus I have about an inch of hair now.  I really really dont want to give that up.   

Good night all. Sweet dreams of killing cancer. 

jaz...I had a horrible headache the first couple of days after my first chemo treatment.  I told my MO and he said maybe it was due to the steroids so he cut them back after that.  Just letting you know.  Hope it all goes well for you.

juneau- so sorry you have to go through AC.  I did 4 rounds of AC followed by 4 rounds of Taxol.  I know you get sick of hearing this but a positive attitude even when you feel like hell is so important.  I did a lot of self talk.  The night before the first treatment was one of the worst for me.  I felt like a 10 year old whining because they didn't want to do a chore their parents told them to do, but I told my husband "I don't want to do this!!!". 

 I always wore something comfortable but I also always made myself look pretty.  I still wore makeup and jewelry to chemo.  Through all of this I never want to forget who I am or whats important to me.  My DH and BFF had a scarf shower for me and I got really good with accessorizing with the scarves.  It took a lot of courage in the beginning just to leave the house but I did it and its amazing the compliments you get from people when your head is wrapped up.  I saved my wig for work and sometimes for church but truly hated wearing it. 

 No one told me my head would hurt when the hair was falling out but it did. No one told me my nails would get ugly but they did.  These were things that alarmed me at first and I just wish someone would've told me first so I was prepared when it happened.  I ate very bland foods during AC because it bothered my stomach and my tongue.  I craved boring home cooked meals that I don't generally like.  My favorite go to meals were hot tea and toast and also scrambled eggs.  Drink lots of water before and after your treatments.  Also, I did not like the way I felt on the prescrip medicine they gave me for nausea so I just used peppermints when I felt nausea coming on and they did help.  I still got a little sick on the first day but it never lasted long.  My worst day was 2 days after my treatment. I can't completely describe how I felt but it was usually pretty bad.  I still worked but usually crawled into bed as soon as I got home.

 I hope this is helpful and that I'm not just rambling.  Let me know how you do with each treatment and always tell your doctor all of your side effects.  Don't downplay any of them.  They are there to help and my MO was great about helping me lessen my SE as much as possible.

Tina jason....your story sounds similar to the one I'm about to start. I'm starting chemo August 7th (had to delay one more week to finish my fertility treatment) four rounds of AC and four rounds of TH every other week. Not sure what to expect or whether I'll be able to work. The nail thing freaks me out. The hair loss freaks me out. Then when I'm done with that, I get to lose my breasts! Oh wait....I forget radiation and blisters and years of pills. I still can't wrap my head around this. Does anyone else feel like maybe I heard the dr wrong or she misdiagnosed me. I think it's the fertility hormones but just feel like I can't handle this and I just started! You ladies are so brave.

Juneau, you will get through it. I actually didn't mind the first day of chemo. I was happy to get it started because I knew it ws time to start doing something bad to my cancer cells. chemo is your friend. Chemo kills cancer. Chemo will make it more likely this never happens to you again. I got through it just fine and soon you will know the routine. I think the worst anticipation of chemo was me starting the taxol after I finished the AC. AC ws bad enough but there ws a week in between where you felt fairly normal again. The taxol was weekly so I worried that I was going to feel terrible all the time. Luckily that wasn't the case, the taxol was a cake walk in comparison but I didnt know that until I started.



My experience with AC was that the first treatment didn't bother me much. The Neulasta shot made me achey for a day. I was sleepy the night after the treatment and I peed red the first night. My tastebuds turned to wood. The second and subsequent treamtments were a little worse each time. Mainly fatigue and a queasy hunger that reminded me of being pregnant. I took Ativan a couple times when I was home to help the nausea. I worked the whole time through it. Days 2-5 were the worst. Days 6-14 were not bad at all, almost normal except mild fatigue. I started to lose my hair around day 20 from the first treatment. I buzzed it off as soon as I saw shedding. I didn't even mind it much then. I felt and looked tough. GI Jane is going to kick cancers ass. I liked the scarves. They were pretty and colorful.

I would cut my longest shifts shorter to get through them but I worked 30-36 hours per week all through chemo. The steroids kept me awake for a couple of days after the infusions but ambien helped that. They also made me flush for a day. I didn't have any nail problems with AC and my eyelashes and brows thinned but not much (taxol did more to the brows and nails for me). I never had mouth sores. My eyes were really dry and I couldn't wear my contacts any more and my skin was dry and sensitive to lotions and the sun.