TRIPLE POSITIVE GROUP

Ugh, Special K! Wow about getting a referral so quickly, though. PETs show all sorts of things; they can be stressful as a result. Best wishes for your surgery! Hope it's the beginning of the end for your reconstruction.

Special, you have been through so much!! I'm not surprised to hear there is inflammation in that area. Good luck on your surgery Tuesday! I'll keep my fingers and toes crossed for you.

Thanks all for the hair info; helps me with my planning process. I know it's a small thing in the scheme of all of this, but as we control so little, it's nice to have control at least over how I will handle the hair loss! Scheduled a layered shorter cut for Monday...

Kthielen: I am sorry you are going through this again as well! But it sounds like you have a good plan. I have heard the Cyberknife is an amazing tool--a family friend had great success with it for a different kind of cancer.

Special K: Wow, that all does sound extraordinarily stressful. But I am glad you got all the scans. I tend to agree as well than inflammation is the likely "light up" cause. When I had my PET (because they couldn't do liver MRI due to TE's--same thing), only 4-5 weeks post BMX and TE placement, that scar area also light up. They were not concerned because they thought it inflammation. My PS said also that in certain people, always with implant or TE surgery, they will form scar tissue inside around these areas. And that is an active process of inflammation. It can happen right after surgery as things heal, or years down the road. I hope (and think it is most likely) that that is what is going on in your case. But I know it is super stressful.

Best of luck with the surgery Tuesday, and keep us posted when you can. Will be sending good thoughts and prayers.

Re: keeping toes and hands cold. I used this instead of peas (same degree of coldness so within my MO's parameters.) I had almost no tingling and very infrequent pains after round #2 when I used this compared to round #1 when I didn't. Just had #3 yesterday, and so far no pains, etc at all--but usually that came for me (in round one) around Day 2-3 post infusion. This is what I bought from Amazon:

http://www.amazon.com/Koo-Care-Flexible-Elastic-Ve... I also bought extra Nexcare gel inserts so I could switch them out as they warmed up. I used the extra velcro that came with them to tighten them so they were firmly against nails. Nice that they are also reusable for sports injuries or bruising on writsts, arms, knees, ankles etc.

having issues with in grown toe nail on big toe, after the nail came off, cant seem to get it to grow over the skin. Any suggestions? Had pedicure but thats not working too we,,.

SpecialK, good luck with your surgery.

Yes, Good luck Special K! Here's hoping this is your last one.

Hello everyone! I'm so happy to find this Triple Positive group!

I was diagnosed in February 2016, at 31, while I was breastfeeding my son who just turned a year. I'm an ICU RN and I started to wean when he was about 10 months old and would work my 12 hr shift without pumping. I had full and knotty breasts when I got home, he preferred the left side and would drain it and I would have to pump my right. I started noticing my right side was decreasing in milk supply and the knots wouldn't resolve. I contacted my OB and lactation specialist and they both said it sounded like normal symptoms of weaning, especially if he prefers the left side. They gave me instructions to massage, apply heat, etc and treat it as the start of a blocked milk duct and to call back if it didn't resolve. A few weeks later the main knot was getting bigger, no redness, no pain, no signs of mastitis, no dimpling or skin changes. I called her back and she scheduled me to come in for my yearly and to see about this knot, but that appt wasn't available for a few weeks. When I got there in January, the tumor felt like it doubled in size and was about 7 cm! She sent me for my first mammogram and US, which led to biopsies, and the diagnosis of IDC with a positive IDC lymph node biopsy of the enlarged node they saw on the US. They did two biopsies of the tumor, both IDC, but one came back Her2+ and one Her2-, so my MO asked for the slides so she could double check the results and figure out why it would read differently. They ended up sending my tissue samples for Mammoprint Blueprint. My bone scan and CT were negative on Feb 15, my MRI the last week of Feb showed the tumor had grown to 14x9x7cm, it was touching the lymph node that was enlarged, but it had not started invading my chest wall. While waiting on the Mammoprint/Blueprint results to return, I did egg retrieval and embryo freezing. The results came back and my MO said "It was kind of inconclusive because it stated there were basal cells, or normal cells, which she didn't understand why they couldn't still test the cancerous cells, but since we have a path report that says 10% is Her2+ we are able to go forward with Her2+ treatment and you will be getting Herceptin and Perjeta with the Carboplatin and Taxotere." I didn't ask for a copy of the report, but I think I might just to have for my binder and to read on my own. I have my 4/6 round of TCHP tomorrow and my US a few days ago showed my tumor was smaller compared to my first US in Feb, but there was still that main enlarged lymph node and two tiny ones next to it. The tumor shrunk significantly from the 14x7x9cm MRI reading after the first treatment, but has stayed about the same during my 2nd and 3rd tx from what I can tell (but I feel it everyday lol). Surgery for the mastectomy with TE will be 4-6 wk after chemo ends, then radiation, then reconstruction. My OC said I will go on tamoxifen for 5-10 years after all of this and my sister said she would be a surrogate for us since I'm a little worried about getting pregnant with 100% ER+ and 95% PR+. I have read studies to be cautious about getting pregnant and others that said there isn't a difference in chance of recurrence. I have no family hx, BRCA was negative, I was a college athlete and still work out, I'm 5'10", 167lbs, BMI 24.9, and thought I was eating well. Since my diagnosis I have changed up my diet to mainly plant based, organic as much as possible, occasional skinless chicken or fish for protein, no sugar, no soy, no white anything, no refined or processed foods, 90-100oz of 9+ pH water daily, walking daily and more intense workouts on good days when able.

It's definitely difficult dealing with all of this, thinking about the future, and letting go of all of the what if's..especially when looking into the sweet face of my 15 month old son and my husband. I keep God first, a smile on my face, a positive attitude, and keep pushing through! I enjoy reading the NED stories especially with those of us who are Triple Positive! Thanks for all of your encouraging words and support to everyone, especially newbies!

*What vitamins/supplements does everyone take, if any, while on chemo and after to help build your defenses against recurrence?

*I've read that they recommend a BMI of 20 or less for ER+, anyone else know anything about this?

SpecialK - good luck on your surgery tomorrow!!!

So I just got back from my MO visit for pre labs before chemo tomorrow. My MO is out of town for a family emergency so I saw her partner. My WBC are 2.1 and my ANC 1.2 which is too low to do chemo, so they are rechecking tomorrow. My WBC were just 9.7 on Thursday, but I had bad allergies for 10 days prior, got pink eye on Mother's Day, and ended up having white spots on my tonsils and getting 102.9 temp last Wednesday was admitted overnight for cultures and observation. Everything came back negative so they said it was viral and I feel pretty much back to normal today....so we will see what tomorrow brings.

I talked to my MO's partner about my treatment plan because I had her2+ and her2- biopsies in the same breast initially, which was verified with the FISH. She mentioned she thought it would have melted more by now with the Herceptin and Perjeta, and wonders if the her2+ has melted and I have her2- left and it's not shrinking as fast due to the combo. She said she will mention it to my MO and ask what she thinks about doing another biopsy vs waiting for these last 3 treatments and doing the biopsy with the surgery. I asked if they do the biopsy now and it's her2- would they change my combo. Also, if they wait until surgery and find her2- only, would they put me through a different chemo regimen to cover the her2- better than when it was treated with the TCHP combo. She said it isn't protocol, but then again my case is unique since I have both her2-/+. It's tough enough not having any medical hx, any family hx of CA, and getting CA...can I just have a straightforward diagnosis lol?!?!

I know this group is Triple +, but has anyone heard of having 2 different her2 types in the same tumor?

Smlowry:

I haven't heard of both her2 positive and negative being in the same tumor. Although before bc I never knew there were so many types and factors including her2 status, grade, proliferation rate, etc. so much to know... & learn.

I had a lumpectomy prior to chemo as I didn't want to wait. However, My oncologist said that chemo is done before surgery to see responsiveness to treatment and whether we need to shift treatment to reduce he tumor. Not all tumors shrink which is why surgery is needed. work with your team... They will do more tests to see you get the right treatment.

That being said....anyone have any thoughts about pain in breasts?

I just finished last chemo and have not had a period since January. My breasts hurt so badly but I read this could be my ovaries not producing estrogen. And yes... I have hot flashes at age 43. Boo to me! This would be good for my risk reduction but I also worry that they didn't get all the cancer out. I'll talk to the doc wednesday...next step echocardiogram & radiation. 👍🏼

Thankfully my wbc were 5.2 and neutrophils were 4.3 this morning so I'm receiving my chemo #4 now! I have no idea what happened with the labs yesterday!

fluffqueen01: I will write that down to ask my MO when she gets back in town. I've asked her after the great results tx #1 showed if I would need the whole 6 tx if it resolved completely and she said yes since I have node involvement, but I'm not sure what happens if it stops responding. I know some have had their tx switched up to find the best combo for them. My concern is the 4-6 week wait before sx with no meds and the her2- possibly not having been treated as aggressively as it could have been. Her partner mentioned I'm not on a topoisomerase inhibitor like adriamycin which they use for her2-, but it's probably because my tx is a combo really good for her2+.

I also think there is some type of connection with nursing issues and bc diagnoses, esp in the same area!

I will definitely start looking on those other forums! Thanks for the reply!

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Songbird143: My MO was surprised when she saw my path report and requested the slides so her pathologists could double check and use the FISH. It was exactly the same...90% her2- and 10% her2+ and the biopsies were at 9 and 3 o'clock on my right breast. I had a high ki-67 and with my tumor growing from 3cm when I found it to 14x9x7cm (I looked like I had a breast implant and a post nursing boob lol). They thought with this rapid of growth it definitely had her2+ included. They wanted to do chemo first bc the tumor was so large and I had lymph node involvement so she wanted to start treating systemically asap. They wanted to try to get the best possible situation for clean margins esp since it hasn't invaded skin or chest wall yet. I have a great relationship with my MO so I'm hoping she will understand my concern. Also, her partner not rejecting the idea of her2- chemo made me think she understood and maybe agreed some. I will keep everyone updated when I talk to my MO next! Thanks for your reply and sorry about the pain! I pray it just hormones, your ECHO is great,and you get answers soon!

Happy Tuesday - I went to my chemo class today - I will be given carboplatin and taxotere along with the Herceptin. I'll have 6 rounds of chemo - 1 every 3 weeks. I'm a little wigged out with all the side effects! The risk of infection freaks me out the most! My nurse just kept saying if you feel sick call, red area call, coughing call, constipation call, diarrhea call, basically call! She said they just want to make sure their patients stay well and out of the hospital ! I'm waiting for them to schedule a time to get my port. After that I start. My initial diagnosis was DCIS but once the BS did my masectomy we found out it was IDC with one lymph node involvement. So chemo wasn't in the initial plan.It was hard news to handle waking up from surgery but I'm just taking it one day at a time. 3 weeks out from my surgery and I do feel pretty good.

I remember thinking when I was first diagnosed that everything seem so far away and now it's here and I'm a little scared! Reminds me of a song I sing with my kindergarten students Can't go around it , can't go above it , can't go under it , guess I'll go through it !

Prayers and happy healing thoughts to everyone.

On the research front...I sat down in front of the computer and researched myself into a panic disorder. Developed high bp, couldn't eat, tachycardia, cried if someone looked crosseyed at me. Doc put me on cymbalta and a bp med and I was much better within 48 hours.

I just felt like I had to do all so quickly and I wanted to be prepared and educated to have intelligent conversations with them and be part of the decisionmaking process. I am not one to take anything a doctor tells me at face value and just go with their thoughts. I had separate questionnaires for the oncologist, the breast specialist and the plastic surgeon. I taped each conversation with their permission which was a huge help. Unbelievable what you forget.

Ever since chemo, the veggies that taste best to me are raw ones, or still crunchy. So, I generally eat them withwhat is probably a somewhat unhealthy dip. sometimes I make a green drip with a bunch of spinach, apple, a little lemon juice and whatever else I have. I have thrown in celery, cucumber, and most kinds of fruit. I had one every day on chemo.

For a long time, I gave up white flower and processed sugar. Then a couple years ago fell off the wagon. I am trying to get off the sugar and carbs again. Although my spaghetti tonight was so good. I use whole grain pasta a lot, but gosh, I love the real stuff.

Tumor markers....Had my first ca 27/29 today. Since the surgeon called me "cancer free! No Chemo for You!" and then I reminded him on the Her2+ thing....I was surprised that the number was not zero. Shouldn't it be zero? My numbers are in "the range"....but it's making me nervous. Anyone else?

Heathet: Welcome! Get a planner and keep all of your dates straight especially when they change appts on you! The port placement was a breeze, my MO has me on Neulasta which I haven't had any issues with to keep my counts up. It seems like days 4-8 I am most vulnerable to having low counts so I try to really be careful about being out and about. I was actually put in the hospital last Thursday, just overnight bc I had gotten bad seasonal allergies, post nasal drip, then a raw sore throat, then pink eye on Mother's Day which was viral so no treatment for it, and then woke up Wednesday with white spots on my tonsils, and then woke up with a 101.9 fever on Thursday and had an appt to get a throat swab anyway. My MO just wanted to monitor me and get blood cultures and everything came back negative and it was all viral. They are very picky about their patients and very cautious about you getting sick. Do call for anything esp a fever over 100.4! Good luck with everything and look around these forums for any help and tips during your chemo tx!

Songbird143: I believe they are on top of it as well, but having both I know that some treatments can't be mixed with others, so I'm just going to ask her since we are at a point where it isn't shrinking as much as they thought, is there a stronger her2- tx they would give me etc. It's confusing having both types! As far as the percentages, it was the percent of receptors that stained her2+ vs her2- on the slides and the same percents stained on the FISH test. I'm happy to be getting the herceptin, I just want to make sure the her2- is getting just as much of an aggressive treatment!

Zoziana: Thanks for the reply! I actually worked at UCSF for a couple years when I was a travel ICU RN and then went per diem in the ICU's there. I agree with all of your questions and a lot of those I asked her partner when my MO was out of town, and she tried to answer with her opinion, but also stated that she would email my MO and discuss these things with her and give her my concerns. I have a list of things to talk to her about when she gets back in town. I know that herceptin and perjeta don't work with certain chemo combos, so that could be part of the issue, but I still don't want to let the her2- tumor cells just hang out and not get attacked as aggressively a possible. I trust my MO, but like you I like to research and double check things...I'm so thankful for these forums!

VioletKali my MO doesn't do tumor markers for early stage. She says they are unreliable. Never had one.