TRIPLE POSITIVE GROUP

Found this article about HER2 positive by MD Anderson to be interesting.  

http://www.mdanderson.org/newsroom/news-releases/2008/early-stage-her2-positive-breast-cancer-patients-at-increased-risk-of-recurrence.html

Pbrain..Ultrasound?  I mean just for shits and grins?  To my knowledge from patients I cared for and women I knew, ovarian cysts are often very painful.  Thinking of you...

Fluff..you too...You'll be on my mind.

Ashla, Special...Hi ya.

Welcome to the knew girls

Fluffqueen - any chance that the tenderness/lump in your axilla could be from an ingrown hair? It will be long days until the 30th - thinking of you

PBrain - get it checked out - you probably are healthy as a horse now but it would be good to stay that way

Yay, Goutlaw - congratulations on last Herceptin - you have come a long way!

Fluffqueen - I hate the wait for answers - I sure hope that they can get you in earlier.

Pbrain - I agree - get it checked out - you are going to make yourself sick wondering about it and then you will start googling and then ... well you know the rest LOL.  I supposedly have PCOS - at least I got diagnosed by my endo with that a couple of years ago but never had any pain or symptoms so can't help you with how an ovarian cyst feels.  My diagnosis came as a result of blood tests for two high hormones that I can't remember right now lol.  They ruled out other causes and said I had PCOS - I don't think I did/do though.  Btw my liver enzymes are still high as of Sept 2 and my GI doc thinks maybe I have sludge in my bile duct.  He is going to monitor it for a bit longer then do an MRI if they don't come down.  I don't know what they were for my preop bloodwork but I assume that they weren't high enough to cancel surgery.  I was afraid to ask and call attention to them LOL.  

go melster!  

vettegirl not everyone gets complete response who gets a lifetime of NED. Also those of us (like me) don't even know if the chemo worked on our tumor because we got chemo after surgery. At least you know it worked. I have a feeling those who get complete response get it because the tumor was growing at the time the chemo attached the cells. If the cells are not in the growing phase they may be left for surgery. Just a theory. I'm not scientist. 

Geez Pbrain it's always something isn't it. 

Hi JeniE

Hi Ladies. Have been tending to some winding roads-again-in my path. 

PBrain. Have an ultrasound. Or something. I had cysts starting @ age 14 when I had an appy for a perfect appendix. Multiple cysts since. As have 3 of my 3 daughters. I (and they)--after the first one--didn't need anyone to tell us what it was. Hurts like a SOB on crack. And you also have winding roads. Let someone take a look see. 

Anyone else wanting to avoid Pinktober? This will be my 3rd post BC. I used to enjoy-wore the shirts as often as I could, bought as many foods with pink stickers, walked the walks, and more. Now want to avoid. Recently a local woman had her head shaved "to honor" those suffering from BC. I kind of wanted to punch her. Clueless as to how her bald head honors anyone. She is old. Not in college as the St. Bald what ever it is that raises money. And I have the most wonderful friends who still bring me T-shirts and pins and sign my name on the pink fire trucks. I am honored and humbled by the continued support. Sick of feeling like crap, and hurting, and still having to deal with @$%^ ex-husband for property settlement. 

Welcome to the newbies. Sorry you have to join use. Congrats to those finished. PBrain--get thee to someone. 

Much love.

SusanHG I have realized Pinktober is really not for survivors. It has become more of an awareness campaign which does help with donations. 

Sadly the message really isn't getting out. I have seen lots of pinktobers before diagnosis. I have donated to lots of friends who do walks, runs etc. I still didn't understand how pervasive this disease is. I didn't understand what they meant by "there is no cure." Had I known what I know today my disease would have been caught 3 years earlier by me. (Has some pain in the area when pressed but the mammo/us showed nothing a few months before and my PCP said it was connective tissue. He didn't feel any lump).

Hi gals!

Wow, so much to catch up on. I hope you can get in soon fluffqueen. The waiting for answers is misery.  I'm sending good thoughts your way!

Pbrain... go, go get it checked. And congrats on that weight loss!

I have been out of touch as we had to move out of our house due to our neighbor's roof leaking into our shared wall (we're in an attached row home) so it had to be ripped out, treated for mold, dried, and replaced. Both first and second floors. Nothing like cancer, chemo, and having to move out of your house!!  Finally back home now with dehumidifiers drying out the last bit.

Other stuff... I found my lump myself, age 39. Great shape, eat well, exercise, manage my stress.  I can relate to feeling blindsided in the sudden entrance into cancer world. Besides, I've always disliked pink.

My tumor was 1.3 cm and no lymph node involvement. I have very dense breast tissue and opted for a bilateral mastectomy. I have TEs in and am looking forward to have them switched out in November. I'm in the T/H and TDM clinical trial run by Dana Farber, in the T/H group. If my WBC count can hang on, this week will be my last T/H (Number 12) and then I'll transition to Herceptin only every 3 wks through June 2015. For what it's worth, I won't be getting blood draws before my Herceptin infusions, per my MO.  

I am really, really looking forward to the end of Taxol. While patience and grace was being handed out, I was in a different line... the one for big hair and big boobs. Now that I have neither, I sure could use a bit o'that patience and grace!

I have found that light exercise is helpful. I was a runner, now I walk 6 days a week. It does help with the fatigue and nausea and depression...

And I am looking forward to having hair again! I must comment on how unfair it is that I lost all the hair on my head but still have to shave my legs. Every. Day.

Hope all of you are hanging in there. So happy to have found this group. When I'm feeling lonely, you all are always there. Thank you. 

Oh-- and GO SEAHAWKS!  

Pbrain, I had right lower abdominal pain for over 12 months. It started as low level and increased until I couldn't function properly. I had an US and that showed nothing, had a PET and that showed nothing.

I was getting to the stage that I knew something was horribly wrong, but no-one seemed to know what it was, and started dismissing me. I found a new dr who would listen to me and we finally sorted it out. 

I have irritable bowel syndrome, and the first thing I cut out was lactose and the pain disappeared. Literally overnight. I went on a low FODMAP diet, and have found a lot of my triggers but for me lactose is the big one. If I have lactose now, I get that pain back.

I had a pretty horrific time on Taxotere - and I understand you did too. My gastro specialist thinks my IBS is a result of the chemo. More and more people who struggle with Taxotere seem to come up with IBS later. Not proven - no clinical studies, but it seems to fit. My gastric system was totally trashed on T.

You do need to have an US though to rule out ovarian cysts. But in the meantime, look up FODMAP and see if you can cut out what may irritate your bowel and see if it makes a difference.

I still have issues, it's not an easy road, but I'm getting there.
Trish

xoxo 

I have IBS too. My trigger is animal fat and stress. I can eat a little but if I eat too much I bloat and my colon shrinks. I had it before chemo. I have it controlled by diet.

Pbrain, just get it checked out.  No sense in worrying about it.

Fluff, the 30th sure is a long time from now.  Hopefully they will have a cancellation.  I'll be thinking about you!

Ocean, I get Taxol weekly for 12 weeks.  The Herceptin/Perjeta is every 3 weeks until the Taxol portion ends.  Then it will be just Herceptin every 3 weeks for 9 additional months.  My first infusion was really long.  My appt with the NP was at 9 and I left at 4:30.  Now part of that was waiting for my blood work and then talking to the MO because my WBC was a little low.  The Herceptin was infused over 90 minutes.  I can't remember how long the Perjeta took but they made me wait an hour after the infusion before they started the Taxol.  The Taxol is given slowly for the first 15-18 mins to make sure I don't have a reaction.  Then they start it a little faster for another 15 mins or so then it's given at normal speed.  I get Benadryl and amend before each treatment.  My last Taxol only infusion was 3 hrs.  She said I can now get it at full speed because I haven't had any problems with it.  Taxol given weekly is a much lower dose so I was told my hair would slowly start growing back.  I'm super excited about that!!  

Thank you Mommato and SpecialK.  I appreciate the explanations.  Was dx only 10 days ago so my head still spins with all the data.

I had to open the abbreviation list to understand your post SpecialK and your explanation of the different forms of imaging makes perfect sense.  Thank you for clarifying that.  I didn't realize an MRI could show lymph nodes?

Also, thank you for explaining about the Herceptin and Perjeta.  So those two drugs are not considered chemotherapy?

SpecialK, are you saying it's possible to actually prevent have hair loss completely with cold caps?

Something that's odd to me is that  I have 2 sisters and I'm the youngest.  They've both had breast cancer, but we all three have very different forms.  Also, my mother is 95 and never had BC and is in perfect health.  Obviously we get half of our genes from each parent but I have many cousins on my fathers side and I don't know of any breast cancers amongst my female cousins nor the girl cousins on my mothers side for that matter.  My BC appears to be the most difficult of the three sisters but what strikes me is how we all have different forms.  I had the BRAC testing done after they were dx and I think it gave me a false sense of security. I missed my mammogram last year. 

I have my MRI tomorrow and am obviously hoping for no more bad news.

Am very, very grateful to the women on this forum for their kindness, patience and willingness to share and teach.  Thank you all.  It's been a blessing.

Read on a news site that P&G is not donating pink mouth guards to NFL in October due to recent domestic violence cases. Instead is denoting $100,000 to the American Cancer Society for BC. Hoping others how promote pink will donate instead or donate more.