TRIPLE POSITIVE GROUP

ElaineTherese

Minor emergency was a waste of time. They looked at my bug bite and shrugged. Thankfully, I have an appointment with PCP soon. I have marked the bug bite with a Sharpie.

Those of you with eye concerns, see if you can get angiographic imaging. Such imaging will show if there are any eye mets, which are quite rare but are good to know about. I pay a little extra for that imaging, but I'd rather know whether or not I have eye mets.

JaBoo

Taco1946 thank you, I've found the mentioned post. I made some final adjustments to my questions for tomorrow.

Ladies, I'm really impressed and even overwhelmed from this forum... So many women and so kind... I'm glad I've found it here

LaughingGull

Hi positive ladies,

Checking in. The forum moves so fast it is hard to keep track! I was also on vacation for a few days. I have 8 sessions of radiation left and then will move to oophorectomy and aromatase inhibitors. Still no side effects of radiation, and no side effects of herceptin plus perjeta (other than the runny nose), definitely no vision problems.

Thanks for the pictures moodyblues and tresjoli, it´s great to see photos. I am going to try and post some too.

homemadesalsa, the pain you were reporting from your port sounded like too much so I am glad they took it out.

JaBoo, your diagnosis is similar to mine. I decided to go with mastectomy instead of lumpectomy. I am curious, did you not get chemo prior to surgery, i.e. neoadjuvant chemo? I thought that was the standard for 2B. Did you also have axillary surgery? Hope you are healing well.

Lovely...welcome to the group. You must be terrified for sure. Dont even know what to say. Take a deep breath dear.

LaughingGull

And best wishes to Shellabela, hoping that those cramps are nothing.

JaBoo

LaughingGull, at the time of diagnosis, the tumor was smaller and nodes were clear, the first report after biopsy says 15mm, T1bN0M0, grade2, her2 ++. So into lumpectomy I went. After the operation the pathology said the tumor was 21mm and the sentinel node had micromets, the other two nodes were clear. The surgeon said no axillary dissection is neccesary. But there were close margins after the first op, so I had to go to a second one. I wanted mastectomy but the surgeon talked me out of it. I'm not so sure now... the pathology said grade 3 and her2 +++. in my signature below, I have put the pathology dx as the first one.. after the biopsy it didn't seem so grim with grade2...

well, the stage IIb is not anywhere in my reports. I have put it in my signature but I don't know whether it's correct... I just thought it's so according to the size and micromets.

Bheg79

hi ladies

So I was supposed to have chemo 2 today - got to the clinic at 8:30, got my Paxman scalp cooling machine filled and ready to go then the nurse comes out to tell me my neutrophils are low so I’m delayed a week - SO DISAPPOINTING - it’s like u get mentally ready and then you can’t go through with it - ugh!

Hoping this only happens this once - I want this chemo done ASAP!!!

SpecialK

bheg - are you getting Neulasta?

hapa

LovelyLeo - your situation sounds so hard, you must be terrified! I'm sorry you had to get such bad news at what should be such a happy time in your life.

JaBoo - welcome!

Bheg - I'm sorry about the delay, setbacks suck.

I have TCHP #6 tomorrow. Glad to be almost done, but I got my pre-operative imaging done last week and it looks like I still have a 1.8cm non-mass enhancement (whatever that means) in my breast plus a couple of lit up lymph nodes. It seemed like my lump shrank a lot after the first round of chemo, a little more after the second, but I haven't felt much change on the subsequent rounds. I still have a contrast-enhanced mammo tomorrow, but so far I'm really disappointed in the results. Is this normal with triple positive? I keep hearing about people getting pCR with Herceptin, and if not then they still seem to get better results than this. I hope my MO doesn't recommend more chemo. I'm getting all bloated on the taxotere and it's getting difficult to maintain a semi-normal life.

deni1661

Bheg - your delay stinks for sure. I can relate to wanting to get on with the chemo. Thats a great fighting attitude! I pray you have no more delays.

Laughinggull, welcome back from vacation! It is wonderful that you were able to get away and relax. I’m happy to hear you are doing so well with the rads and HP. I hope the remaining treatments go just as smoothly!

deni1661

I got my 3D nipple tattoo today. I wasn’t going to get one originally but my PS and several other ladies in this and various BC groups said it’s the final touch to getting my original breast back. My PS did the tattoo himself so I know the end result is going to be just perfect. I am glad I got it done. With the flat stomach from the DIEP and a new breast, I feel whole again - actually better than before.

For those of you that are new or in treatment, I want to give you hope that life after cancer can be just as good if not better than before diagnosis. This community has been a life line of support and inspiration for me the last 2 years 😊

deni1661

Elaine, I’m glad the bug bite was not serious. Good to have peace of mind!

Bheg79

specialk - I am doing 7 days of gcsf (similar to neulasta? I’m in Canada) shots starting day #3 - a formeroncology nurse I know thinks that maybe the shots should be started a bit later instead of day #3 - I will talk to my oncologist next Monday about this cuz I do not want to be delayed again!

SpecialK

hapa - I believe that the pCR rate for TPers is about 30% or less. Also, it is possible that the enhancement showing is leftover shell, with little to no active cancer. I have seen this multiple times - maybe some of the others posting who have had surgery after chemo can tell you about this - I did not do neoadjuvent since I was treated before early stager Perjeta eligibility. What imaging modality was used? Both MRI and PET can show metabolic activity that is actually inflammatory response - which would also happen as chemo is having an effect, or from inflammation. I have definitely had this happen - had a PET 5 years after chemo was done and I lit up like a Christmas tree bi-laterally - was sure it was recurrence but it turned out to be 4 different kinds of inflammatory process.

I have enjoyed seeing the pics of all out and about, vacationing and enjoying! Yay!

I am always sorry to see new members join us, but am hopeful that we can provide support and help.

lovelyleo - agree - heartbreaking to have this happen during what should be a happy time - we are here for you. Never think twice about reaching out for support or with questions - this is an awesome group.

jaboo - if you are 2cm or smaller with micromets you would be stage IIA, but if larger than 2cm IIB under the old staging guidelines. Under the newer guidelines, which include grade, Her2 and hormonal receptor status, if I am reading it right and have your correct info, you would be 1A with a 2cm tumor, micromets in 1 node, Her2+, ER+, and grade 3. Here is a link to the newer staging:

https://ww5.komen.org/BreastCancer/StagingofBreastCancer.html

Here is the more intensive overview available from BCO on the new staging:

https://cancerstaging.org/CSE/Physician/Documents/AJCC_PPT%20-Breast%20Webinar%2011-8-17.pdf

hapa

SpecialK - thank you, I was hoping for someone to say that. I had PET and MRI. My tumor area is still sore and has been off and on since chemo started so definitely some inflammation going on there.

Thanks to everyone in this thread. It's so nice having all of you around, the support means so much to me. I don't have anything like you guys in real life. My friends and family can't really understand what I'm going through. Most of them think breast cancer is something you just slap a pink ribbon on and get on with life, and the rest are expecting me to drop dead any second.

SpecialK

hapa - I think we all feel as you do - people in our lives, unless they are cancer survivors themselves - don't get it, however well meaning or supportive they may be. That is the beauty of this site and those who populate it - we do - and we understand that others do think as you described. It is unfortunate, but accurate - but know, at the end of the day, the people here can be your soft place to land.

PhoenixCruiser

Well said SpecialK

SpecialK

phoenix - aw, thanks!

TinyDancer5

I totally agree with Hapa and Special K. Some are well meaning and supportive throughout treatment. Some disappear after a while.. Others...well, they just don't understand. I've heard "well, you're all done with your treatments and stuff, what are you so worried about. You're cured. Stop thinking about it and reading about it and move on." Really? Stop thinking about it? I have three scars on my chest that I see every freakin day as a constant reminder. It's useless to talk to them about it because they don't understand. Sorry to vent, but I had to throw my 2 cents in.

I too am lucky I found these wonderful supportive threads.

VVV

I had a breast MRI with contrast a few weeks after TCHP #6. It showed that my active disease had decreased by about half and said that there was a large, suspicious lymph node. My tumor quickly decreased in size at first but at the time of surgery, there was still a large lumpy swiss cheese sort of area in my breast. After surgery, my lymph nodes were negative and I had a PCR. Go figure, the imaging wasn't remotely accurate. The lumpiness I was feeling was called stromal fibrosis and was healthy tissue that had been around the tumor.

SoozyCue

Taco, I also have AARP (United Healthcare) Part D. Are you able to give me some idea of what costs wind up being? My BS has talked about Tamoxifen and Herceptin.

JaBoo

SpecialK thanx for the info regarding staging. thats somehow what I thought. the tumor was 21mm, so I am stage IIB under the old system and stage IB under the new system. But somehow I don't know what the stage says. I haven't been able to find any prognosis or any other onfo concerning staging.

hapa - too true! I am new to the world of BC and already have the same experience. something like: "hey, you gonna breeze through some treatment and be right back to normal and ready and cured, no?" and the rest who know about the diagnosis don't want to hear or - panik! - speak about it lest they might catch it from me. well I don't blame anybody, but the misconceptions are really huge....and hurting. I am already tired of pretending everything is ok... you know..

and info from me - I had the first meeting with the MO today, she made a good impression on me. I don't think I will be getting a second opinion...she answered all my questions and my DH was with me and he also thinks she is really ok. she encouraged me to come to her with any question I might have forgotten... but I have a possibility of telefonical consult with one of the foremost oncologist on my country (I live in Centr. Europe) tomorrow, so I will maybe use it. My treatment plan is 4x AC every 2 weeks with a shot for WBC (forgot the name). then 12x weekly Taxols with Herceptin and of course the Herceptin then up to 1 year. so a fairly typical treatment plan I think. Chemo starts next monday, I am scared stiff... but glad it's under way... well and also I will get my first Zometa shot on monday too, so hot flashes warning received... and blood sample for genetic testing sent. what a day.

hapa

JVP - thanks for your response.

JaBoo - I was also scared to death of chemo but it has turned out to be not that bad. I mean, it definitely sucked but I wasn't laid out for eighteen weeks like I thought I'd be. I had a ton of side effects but none of them were severe. It was just a whole slew of small annoyances that I had to put up with.

I had a contrast enhanced mammo and an ultrasound today and they showed nothing. I guess I'll find out at surgery what the real deal is. I have TCHP #6 tomorrow! I'm going to ask the nurse if I can get one herceptin infusion in between the end of chemo and my surgery. It's a six week window in between which is a little long for my liking.

Suburbs

Hi Hapa. Your timetable is similar to mine. I finished TCHP and did one h only before surgery and on h only a week after surgery. I think that asking makes sense. Good luck with your surgery

kae_md99

hapa, after TCHP my MRI showed only 50% reduction. after surgery, it was actually the tumor bed that showed in the scan.with only residual cells left..

coachvicky

Good Morning All,

For those of you waiting and waiting ... it will be OK. Sure chemo has side effects and I found moving really helped. My goal was to walk at least 5 days a week. My MUGA numbers actually increased during chemo and with my exercise.

And the things you will miss a year out!. 23 August makes one year out for me. Sunday I shaved my legs before church. Tuesday I shaved my legs AGAIN before I started training in Atlanta. Oh how I miss those hairless legs days given to me by my chemo! Frankly, I am a little po'd about this leg hair returning.

I also think I was more organized while on chemo. I had the 21-day schedule and knew what I needed to do before chemo to stay organized.

Look for the silver linings. We have the best treatment as three p's. I have 3 years, 8 months, and 23 days to finish Arimidex and my Prolia injections. I can do that and so can you!

Vicky

Blownaway

I agree with Coachvicky about the silver linings. I remember that during chemo/radiation phase of treatment I felt it was a little like being pregnant in that everything was all about me 100% of every hour/day. It was a time when everyone else was catering to me for a change instead of me taking care of my family's needs. ALSO, MAYBE I MILKED IT A LITTLE BIT!

kae_md99

anybody know the CPT code for the lymphedema machine? we are trying to get one for me but the MD's office does not know the code.?i think one code is for the machine and another code is for the sleeve?Special K?thanks

SpecialK

kae - let me try to find out - mine was ordered by my LE PT, the company rep came to my house and set the machine up and showed me how to use it. It is a pump and sleeve all together, and is very different from a regular garment or night sleeve. Have you had an opportunity to try one out?

Edited to add - I looked at the EOB from my insurance company, it does appear that there are two codes, the pneumatic pump HCPCS code is E0652, and the sleeve code is E0668, although the pump and sleeve all came together in one package.

Taco1946

Snoozy - I have medicare, a plan G supplemental plan and the United Health Care drug plan so I really can't help you estimate costs. My supplement is VERY good and I have paid virtually nothing except my drug co-pay. My cost of AI's is about $ .34 a day. (I took arimedix first and now letrozole.) If you are having trouble with the costs of the AI's, the manufacturer will sell it directly to you for $1.00 a day. Someone else can help you more specifically about that when you know which one you will be taking. I also had a friend who had a medicare advantage plan and her oncologist found her a foundation which paid virtually all of her co-pays. Unfortunately, she's gone now and her husband can't find her records of who it was but I do know her oncologist gave her the name.

JaBoo - glad you liked the MO - it really does make a huge difference. My "starting chemo Feb. 2017" group has gotten very close and I encourage everyone to find one with your start date. We set up a private facebook account and have shared pics, tears, and celebrations.

I'm just back from Maine. Great visit with my daughter and a family reunion to help my sister celebrate her 70th. Yes, there is a life after BC!

kae_md99

Hi Special K, we got the same code for the pump but my sleeve code was E0672... hopefully it will be approved!yes, i have tried one out at my PT. will let you know!!!thanks as always SpecialK.