TRIPLE POSITIVE GROUP

Omaz

farmfresh - thanks for sharing that story.  You were also brave to DO the new treatment.  I would have been nervous.  I am nervous taking herceptin now! 

Trisha -  Taxotere is powerful stuff!  Hope you are not suffering with too many side effects.  My main leftover from chemo with taxotere and carboplatin is neuropathy.  I am hopeful that with time it will get better.

pejkug - (((Hugs))) to you.  I cannot imagine losing my daughter.  You are a warrior!

elaineg

Triple positive here as well. Just got done with chemo on to rads.

carberry

Libra How did you know how much your tumor shrunk?  Since I  am almost ready for surgery I have asked my oncol if they want another MRI or ultrasound to see whats up and he cant give me an answer.  Waiting to hear from surgeon to see what he wants.  I have to always push to get everyone moving along and stay on a time frame.

Omaz

carberry - I spent all day yesterday being a very squeeky wheel to get some help for lymphedema. Sometimes you just gotta push!!

michcon

Hello ladies! I'll join you in being triple positive.

Lumpectomy last summer, Chemo (TCH) due to tumor being Her2+ and now I'm a little over half way done with Rads. Onc has never mentioned Tamox to me, wondering if he's waiting for Rads to be done. I'll ask him at my next appointment. I'm still in Chemopause so getting some hot flashes. I wake up all night long, covers on, covers off, covers on, covers off...

This Cancer thing is so scary and I'm thankful for all of you to help me through it. Friends and family just can't understand it or know what to say and do.

My next step is to get some weight off. I went into this with weight to lose and Chemo put 20 more pounds on me. I've been meaning to start the dieting for weeks now and just can't get the motivation. Reading the article about overweight women and Cancer should light a fire under me! 

carberry

smil_on  You never know when the emotions are gonna hit.   Yest at work I saw someone I hadnt seen since diagnosis and when I told her she hugged me and it made me have a meltdown right in the middle of the cafeteria in front of all the children that i take care of.....  Just when I though I was all done with the crying thing.

elaineg

Michcon. I was told I will start tamoxifin after rads are over. I have an appointment to discuss rads next week. Guess I need to look for a February rads board...

Omaz

elaineg - you can join us on the Jan rads board if you want to - we are nice and friendly!

January 2011 Rads 

saralmom

smileon - I know how you feel.  My husbands cousin just lost his wife to lung cancer (never smoked a cigarette in her life), and as we watch him and their 3 young kids go through this i feel very shaken.  I have also recently heard of 2 other women in my community who I only knew as acquaintences who have recently died after fighting bc for a few years.

I spend a lot of time as an "early stage" bc patient convincing myself that this is a chronic and treatable and even curable disease.  But then we hear about the loss of some of the women on the stage 4 board, and other people in our lives, and it feels like a reality check.

lago

Omaz sorry about neuropathy still with you. I only have it in my heel and its not that bad. When did your stiffness go away? My biggest gripe is the stiffness, fluid retention and my nail beds (most of my fingers and one toe) still hurt, ooze, smell and overall grossness. What are they doing for your LE. Mine has is a little better but I think the fluid retention isn't helping the issue.

Omaz

Hi lago - I am almost 11 weeks out now - and the stiffness is better but I have lost flexibility.  Like when you go to stretch eveything is tight tight but it doesn't 'hurt' anymore.  I can't say exactly when that got better, maybe just slowly until I noticed it didn't hurt anymore.  I got an appt at a local LE clinic next week for which I am grateful.  It seems to have stabilized right now and as long as I don't lift anything more than a couple pounds it seems ok.  The swelling is mostly in my upper arm at this point and seems to be staying the same right now.  I will be flying in June and will ask about a sleeve - what did they tell you about flying?  Can't wait to hear that your nails are getting better, that has been a long haul.  Are you able to get out for walks alright with your toe?

lago

Omaz I was initially told wearing the garments for flying was up to me but they recommended it especially for my 10 node arm before I got LE. Now my PE and LE MD both recommend for flying and working out. Only flying on the 4 node, no LE arm.

I haven't been walking regularly in over a month. I was going to go the gym today with my husband but I couldn't fall asleep last night. I was up till 3. He left way before I woke. I'll go tomorrow. I might try some of my strength training (lower body only) today. I'm not sure if I can even wear my gym shoes. Right now my snow boots that look like work boots are the only things I can really walk in comfortably. At least they are snow boots. We did just have a blizzard this week. 

Yes I too am surprise how stiff I got in the last 6 weeks. I have never been this inflexible in my life. I'm so scared to go on the Anastrozole (generic Arimdix). I hope things don't get worse. I won't be able to move! 

Omaz

Hillck - that's fantastic!  It must be so reassuring to know that you got it all.

libraylil

Carberry,  I wondered about this all through the neoadjuvant chemo as I would have an exam and the oncologist would tell me I'd had a great response.  After the first tx he told me I'd had 60% shrinkage.  As surgery time approached the surgeon told me not to be upset if the mammogram show "something"  still there.  The oncologist kept telling me it could be scar tissue, but during the tx I could feel burning sensations in the area of the tumors, which he said was cancer cells dying.  Throughout the whole thing I kept in the back of my mind "how can they tell if it's all gone without a mammo, etc?"  Anyway two weeks before lumpectomy I had a mammogram and an ultrasound.  The smaller tumor was completely gone.  The larger one which had almost tentacles had shrunk "some" and the lymph node was "about the same".  I went into a total funk.  I totally trust my oncologist, he is one of, if not the best here.  Before I went in for my re excision the surgeon (could you have told me this sooner) said with neoad the tumor does not always shrink like a balloon deflating, but more commonly like in my case sort of a swiss cheese dying off in pieces.  I also asked the oncologist to explain my post lumpy pathology in greater detail, as he kept saying I had a great clinical and radiological response.  He had circled on the path report an area that said tumor cellularity.  Told me that meant that 65% of the cancer cells were dead.  Also the report describing the tumor said "with treatment effect". Clear as mud....they just had to get down to my level.  He also concurred with what the BS said about shrinkage.  Looking at the pre surgery mammogram I could tell the larger tumor did not look the way it did in July.  The tentacles and shadowing were gone and it looked like a round pea.  From reading the path report....the lymph nodes didn't shrink, but the cancer cells were dead.  Oncologist said that seeing this means the chemo attacked any cancer that possibly escaped and that was the point...not to cure the breast.  Sorry so long, but I wished they had told me the swiss cheese/ balloon story earlier. BTW my surgeon ordered the mammogram and ultrasound pre surgery, but no MRI.  I would bet your oncologist (like mine) can tell you responded to the tx by the breast exam.  From what I understand if no response they switch chemos.  libray lil

TonLee

Teal3...lol, I don't have a Herceptin bag...or really a chemo one either.  I just have pockets full of tissues and if I have to pass gas, I just do it.  More room out than in....hahaha.

Smile-On...hard times, those memorial services.  I only really think of dying when I feel bad.  I spent 5 days in the hospital and was sure I was going to die there.  After a particularly rough night I even posted a "goodbye" to my friends on FB...lol.  I was so embarrassed the next day, but I didn't want to leave without saying goodbye.  Other than that though, I try not to dwell on it.  (HUGS)

Farmfresh...so glad to hear you are 6 years out and cancer free!  WOOT!!

Hey Trisha.  Welcome!

Elain..congrats on being done with chemo.  Please keep us posted on your Rads progress.

Hi Michon!  Glad you are done with chemo and half way through Rads.  I'm not sure if dieting is recommended during radiation.  The nutritionist I work with told me my body will need just as much protein and to stay away from anti-oxidants while on Rads.  Do you have access to a nutritionist?  I got really good info from mine.....I asked Thursday about Tamox and was told I will start it when chemo is done and be on it while having Rads.

Teal3Pink1

I got locked out by the 5/day rule late Friday night!  

TonLee:  At work I sit in close proximity to a few people in a high traffic area. Hmmm. Maybe I'll get candles, but not light them.....  Or oranges... Any suggestions? I know gas is not the worst thing that can happen, but I'd like to minimize my embarrassment and not impact my coworkers too much. 

Pejkug: So sorry to hear about your daughter! And now you're dealing with this.  I had the lumpectomy on 1/10/11. I think my med onc wanted to start herceptin next week, but they couldn't get me in for a PET/CT to check up on the ovca until 2/16. Oh! They are also going to test my ovarian cancer tumor from the last surgery to see if it is overexpressing HER-2. How cool is that? 

Michon: My med onc told me that she needs to check with the radiologist to see if they want to delay starting femara until after I finish rads. Apparently sometimes there is joint pain with anti-estrogens which might making lying still for rads uncomfortable for some women.  

libraylil

teal pink    no gassing here from Herceptin.  However, after having a layover from late November until after my surgery in January I had forgotten about the smell of Herceptin.  Right after the infusion, eyeballs, earholes, nose holes, body fluids all have that creepy metallic medicine smell.  Reminds me of chemo.  Drank lots of water before, during , and after and it went away quickly.  libraylil

Teal3Pink1

libraylil: Thanks for the tip on water! Geez, this all sounds so lovely....

Oh, and I developed a little LE last weekend. A really sharp fellow thought something looked off and brought out a measuring tape. Had an ultrasound w/doppler to rule out blood clot and am getting a referral to LE specialist. The fun just never ends on this ride!

carberry

hillck thanks for the info.  my tumor is so far down on my chest wall that it was never felt in the first place, I had a sm pea sized one under my armpit that I had found which brought us to testing that found the large one...flat with irreg borders and only found by ultrasound.  The docs try to feel it to seee if it is shrinking but they cant.  will rely on my surgeon to let me know what he wants.I dont know if it really matters as I have already been told its a definite mx.

Smile_On

Thanks for the kind words ladies.  I am doing better.  I had a long talk and cry with my fiance Friday night and yesterday we kept busy with a house-warming get-together and then a Euchure (sp?) tournament.  I was trying very hard not to let myself go at the service to be respectful of the family--I did NOT want people turning their attention towards me.  Just hearing the loved ones talk at the service though put me in a tailspin as I couldn't help but picture my parents and fiance in the same situation despite my best efforts to push it out of my mind.  I guess it doesn't help that I know someone 3 yrs. older than me battling stage IV breast cancer as hard as she can and it just keeps spreading.  I am doing my best to remember that cancer is going to reoccur or not and it is my job to be as preventative as I can, stay healthy, and maintain my treatments and after check-ups, but to live life like I will not have a reoccurence and only deal with that if it comes.  Again a big thanks for all of the positive words and support!

TonLee

Teal, I don't know that Herceptin causes gas, but it stinks when you do pass it.  I don't have gas a lot, so you may not either.  And if you feel it I am sure you could excuse yourself and head to a safer place.....lol.

geewhiz

I also found that walking a lot...including the night of chemo....moved things through quicker. It makes you feel better, stronger. But, um yeah....don't recommend walking with girlfriends unless they have their iPods on really loud, and can't smell for some reason!

TonLee

Lol Gee.

The last two treatments, during the steroids phase, they didn't give me any energy.  In fact, they kinda made me feel depressed.

Today is the first day of steroids for TX #4 and WHOA.  I took them on an empty stomach, with coffee...and I def. have a steroid high.  (Which I want to get if I have to suffer the side effects of taking them!)

I am craving sugar so made brownies with bananas instead of oil.  Ick.  They are edible, but...ick.

Good thing I have boys who will eat just about anything!

TX #4 tomorrow.

Omaz

TonLee - Good luck tomorrow!  The steroids wrecked havoc with my stomach and digestion, you must be strong because I couldn't have managed them on an empty stomach!!  Drink, drink, drink - sorry you don't get your green tea - how about peppermint?

TonLee

Omaz, the Onc said all tea is an anti-oxidant, and so is coffee?  Whatever.  I'm not giving up my coffee.  I did for awhile, but then I found Hills Brothers (sugar free) instant double chocolate mocha...WHOA!  It is fantastic....the only coffee I can stomach...of course I give it a little boost with a tsp of plain instant and some Metamucil....but YUMMY!!

Omaz

TonLee - I didn't give up coffee either.  I gave up beer and all alcohol and I hope that is enough.  I love my morning coffee.

geewhiz

You know those steroids are just given to you to prevent a reaction to the drugs. Basically if you haven't had one yet...you won't. I learned this from another survivor. I talked to my onc...we did no steroids after the first few treatments. It wreaks too much havoc on you and steroids suppress your immune system...something cancer patients do not need!!!

Good luck tomorrow TonLee!! It is wonderful to mark another chemo off the list. You will get there!!

Omaz

geewhiz - I was also told that the steroids help reduce fluid retention that can be caused by taxotere and that the risk of fluid retention goes up with each treatment.

TriciaK

Another highly triple pos here but five years out now and doing fine apart from some slight bone loss on my last Dexa!

 Hoping Onc will agree to me continuing arimdex past the five years which are up this summer despite not being able to tolerate fosamax!

 Tricia xx

libraylil

Tricia  excellent news, and you had 3 nodes like me!  Continue to kick bu++ libray lil