TRIPLE POSITIVE GROUP

Good morning ladies. Newbies--this is the best thread ever. Really. Everyone reacts differently-despite what the literature says. My plan was to have a bilateral with new perkies in July of '12, chemo and rads finished by no later than Nov '12, and done by the end of the year. I was freaking delusional. But three years later I remain on the right side of dirt. I remind myself of that often.

I had 23 nodes removed on my R side and 8 or 18 on the L. I bought sleeves with the intent to wear when I fly or travel to higher altitudes or when I was supposed to for other reasons. I thought about purchasing a couple of the fancy smancy sleeves. Nope to all. Wore them a few times and quit. So far am good. LE is almost one of the ONLY side-effects I have not had during this windy road.

Working. I worked throughout and am still. The day I had THE mammo, I signed a contract to serve as Dean of Health, and found out about the squalid cesspool of an ex-husband. I was still teaching a couple of nursing theory courses but was able to schedule chemo on days I was not in class or in the myriad meetings I was attending. My building had multiple labs with beds, stretchers, or gurneys-plenty of choices for a nap if needed. And, almost every faculty member had initials behind their name so I could have my port accessed for fluids. I recently resigned as Dean and returned to Nursing Program Director. I can still schedule appointments, IV iron, scans, easily. Students wore masks if they were coughing, sneezing, or whatever. My MO did ban me from health care facilities as a clinical person due to the risk of my being infected. I went to my office with drains after both surgeries. BUT-I knew it was mentally healthier for me to go to work then stay home and mope. That and my German heritage. Everyone should do what is best for them. Just them. Not them and their family. Just them.

Well, I went to see a GI guy Friday because of my continued low blood counts and pervasive anemia. Did not like this guy at all. Will be interviewing another soon. He went through the song and dance of what I should have done--upper, lower, swallow, and almost chew and spit. I-again-reviewed my history and symptoms. He did state he did not think I had gut cancer or anything serious but wanted me to go through the onslaught of testing to prove. I asked about management and he got snippy and snotty "I certainly do not intend to discuss management with you when you will not understand what I am saying until I have to". Hmm. Clearly he did not read my social history. I thanked him for his time and said I would ponder the conversation. Then...l turned into the psych nurse and was able to get him to discuss his personal story-marriage, divorce, children, plans. I learned more about him than he knew about me. I then put on my lab coat and turned to leave. He looked and said "Oh your are medical". I responded-"That makes a difference in your practice". And left. Jerk.

Nausea. I swear by Emend. Expensive but my pharmacist was able to get coupons to decrease my cost from $500 to $50 each cycle. I react to Zofran-the killer headaches. Emend was the best. Also used steroids and lorazapam.

Neupogen versus Neulesta. I had both. Used Claritin starting a couple days before until a couple days after chemo. I do not know if it worked because I used it everytime. I still had joint and bone pain though.

It doesn't matter how you look at this-it is a bitch. Every. Single. Day. This thread helped pull me through the nastiest of days, the women are my dear friends, I can say anything here and not be judged or criticized. I worry about those I have not seen post. Such as PBrain--where is she? This is real. This is family.

Thanks, susan. I always feel better when I read more about you, I wish one of these days I could come see you. I bet we would have a nice time! I do wonder about pbrain too, I hope she shows up soon, just to say hi

Kate...I feel ya! The psychological part has been hard for me too! I also have said many times "I miss my old life" the time when my brain was not filled with all of this all the time. We can do it and you will rally in a few days. I was on this site after my first one asking for support because I was so scared I was never going to feel good again and wondered what would happen next. The ladies talked me through it and even told me what days were the worst. For me it was day 3,4 and 5 and then I started to come around again. Others had said day 3 to 10 were tough. I'm very impressed that youre going to yoga. I don't think I could have after my first one. I did go for a walk this morning and that helped. Hang in there

Elaine, I was told a Pet scan picks up all kinds of stuff that are benign. What does your MO say? The fact that it didn't change at all during chemo mean that it's probably benign? I would think that it would have changed in size if it wasn't. My Mo is going to try and get a Pet approved through insurance due to a cyst on my right ovary and an issue I've had with my hip since about three weeks before the end of chemo. Very frustrating!

Elaine, yes, it can change profile but from what I've read it isn't that often. IF it switched to triple negative, AC-T is a common treatment that is given. It still sounds benign but I understand how stressful it is not to know

I just wish this weird feeling in my hip would go away again. My MO doesn't believe it's cancer related but doesn't know what it is. The Pet is mostly for the cyst on my ovary so we can say 100% that it's benign before I have an ooph next month. I had an X-ray done on my hip in the spring. Everything looked good. It didn't detect any injury either. We both think it's exercise related...after I had sat on the couch for several months during treatment. Not trying to say I sat ALL the time but it was a lot!! 😉 It finally went away after I wasn't able to run for six weeks after my exchange/lift. Then it came back after I sat for a long time in the car for a few vacations that were back to back. It doesn't hurt which makes it even more confusing. Anyone else have an idea of what it could be?

Tomboy--lets meet someplace. Pull in some of the others. I would like that. Much.

The New Normal.

About three weeks after I was diagnosed I was listening to the Dr. Radio (yes I am that person--total geek) oncology show (no longer on) and the guest was about 6 years post dx. The show was on The New Normal-or as she said-you never go back. She talked about taking 5-years to come to the point of actually feeling she was not just Ok but good and accepting of The New Normal. She talked about losing her hair and then how it felt when it grew back and almost feeling resentful of having to "do" her hair. And people asking when she would be the way she used to be and wanting to do great bodily harm. I cried as I listened because first I knew statistically I would be lucky to make it a year and 5-years was forever, and, never. Now I am 3-years and I am not yet at a new normal. But I am on the right side of dirt. My hair fell out 3 times. For some reason I still have chemo curls and can wash and wear. My hairdresser knows I do not want to "do" anything to it that takes time. Time is precious and I am not about my hair. Or my absent lack of breasts. That is me. I do wish my Femera belly would go away though. That is the shallow me.

Love you guys.

jumbled -- the tingling could be a delayed reaction to the Taxotere (maybe?). Even though you're done with Taxoterrible, chemo is the gift that keeps on giving. I remember feeling relieved that I made it through chemo with my eyelashes still intact, only to have them fall out a week later! Good luck with your new doctor!

Stephmoen, I had few side-effects from chemo. Losing my eyelashes seemed painless compared to what others have gone through. DH's family has cabins in the Traverse City area (Lake Leelanau). DD was just there, visiting with her aunts (nasty storm -- lost electricity for four days). I went on my honeymoon there, 22 years ago! Have fun in the Cherry Capital of the World.

JenPam, YAY! Someone here who has almost as many bad boy nodes as meeeee!!! I don't know why i am happy about that, but i am.

Hi Musosgirl. I had a mastectomy straight away just based on my biopsy results. Each person has their own journey. Ultimately it is your choice. Finding a doc to do it may be tough but these ladies probably know more than me on that part. I am 35 so we are close in age. I have a 10 year old son:). My IDC tumor was 3.5 cm and grade II in 90% and grade III in 10% . I had another tumor that was not as large and was DCIS. There were several little tumors scattered throughout. It can get complicated in a hurry. I have also had a brain stem stroke but have no idea if this played a role in the rec for immediate surgery. I doubt that it did. Rather, the aggressive nature and size of my tumor and the number. My Ki 67 was 17%. I am having an Ooph on Sept 4.

JenCam,

I had neoadjuvant chemo, but I started with only one compromised lymph node. It didn't make a difference with respect to my treatment; my surgeon took all my Levels 1 and 2 lymph nodes anyway.

Musogirl,

Even though my tumor was large (bigger than 5 cm.) and I had nodal involvement, I opted for a lumpectomy. After chemo, the PET scan and MRI showed no active cancer in my breast or node. I figure if I have a recurrence, they can always cut more. But, I wanted to conserve my breasts for a number of reasons. First, while reconstruction is a piece of cake for some, it often requires multiple surgeries. Second, reconstructed breasts often lack sensation. Finally, I have twins with autism and they need a lot of hands-on parenting. I can't spend a lot of time recuperating from surgery. But, those are my reasons; everyone has to make this decision for themselves. Best wishes!

So much has happened on this thread this past weekend! I've been recuperating from my first round. . . I don't want to speak too soon, but I think I can do this (physically). Psychologically. . . well, has anyone gone to a really, really dark place, even while trying to be strong and positive? I guess this is just more than I expected, in terms of emotional load (if that makes sense). I was in a dark place yesterday.

Thanks to all the veterans for helping us newbies!

Now I'm off to manage the precarious balance between constipation and diarrhea.

Kate, yes to the dark place...but then I've unexpectedly rebounded more quickly than I'd expected. I don't even feel like the same person sometimes; last Monday, I was in a pit of despair and had nothing positive to say, but yesterday I was walking down the street soaking in the sun and feeling all was right with the world. I trust you will rebound!

JenPam don't get too excited. My user name is lago as in Lago no reference to Shakespear. I'm not that clever

Musosgirl first of all I was diagnosed at age 49, with a really big tumor (5.5 cm IDC with 1 cm DCIS) stage IIB. I will be celebrating NED this August 31st. I didn't even have Perjeta because it wasn't approved yet. I did have a bilateral but that's because my old boobs were small so I needed one on the tumor side and other side had suspicious areas (one ended up to be LCIS). Also note that you can suppress your ovaries with drugs and take one of the aromatase inhibitors or just take Tamoxifen. Removing your ovaries when you are so young can be challenging to your bones and heart. Be sure you look into that before you decide to do that unless you are BRCA positive.

YaY rozem

KateB79 Yup we've all been there at some point in our safari. Most of us don't want to admit it. If it doesn't go away get some help.