TRIPLE POSITIVE GROUP

Dannajae

Poseygirl,

Regarding dark days: this morning I showered for work and got back into bed and started crying. I knew I had an important meeting, and it wasn’t physical, but I just didn’t want to go. My husband has been so wonderful. He kept telling me what “a good job” I’ve been doing and asked if I needed to go to this meeting. He said he’d be at home tonight to take care of me when I get back. I forced myself to go, thinking there will be worse days when I’m not physically up to going, and I feel so much better here at work than if i stayed in bed feeling ugly and sorry for myself

Kattis894

Cherry did you also do FEC which seems to be the normal protocol over here or did you only do Taxol to begin with?

I had 3 rounds of FEC 3 weeks apart in the beginning of my treatment and then they moved me to Taxol. Just wondering because perhaps I got this due to the size of the tumor considering it was much larger than yours.

Cherry-sw

Kattis, my oncologist and I have discussed it back in September, I told her that I was concerned about me being borderline for further treatment due to high KI67 and the presenceof LVI. She took it up at another disciplinary and first I was given a choice to either do all 12 Taxol or to replace 3 last with EC, then they wanted to discuss further on and I got to finish all 12 Taxol, had two phone calls with prof.Bergh and decided to go on with EC, so only epirubicin and cyclophosphamide. So it was optional but as they told me that one infusion of EC will most certainly not be of any good but will not either cause any harm, I decided that I will aim at least at two since I was already so worn out by Taxol, and two will be better than one. Of course I would like to do all three of them but so far this first is so tough on me, nothing to compare to weekly Taxol, I have been in bed the whole day, as soon as I get up my head starts spinning. What anti-nausea did you get prescribed on FEC? I got Betapred and they replaced Primperan with Postafen since I get restless from the former. Cherry

Cherry-sw

PoseyGirl, I have chemo brain again, I intended to reply on dark days and then just forgot.

I am there very often but not as much as I used to be thanks to anti-depressives, I justgot so flat emotionally, they do not let me fall into these abysses of despair I used to fall. Then this upcoming MRI is bitvis doing you any good, you feel relieved when it is over. Let’s hope everything will be fine, it has to be, holding thumbs. Cherry

Blownaway

HapB - As I said, my EF is not quite back to where I was before treatment which was a low normal anyway. I was on a b/p med before treatment but now I have to take a beta blocker and an ace inhibitor forever to quote "protect my heart".

shelabela

bjquilter, i had horrible acne when i had Taxol. It didn't go away no matter what i tried . When i moved on to AC it went away.

I also shaved my head at taxol #4. My hair was coming out by the handful. It was so much easier on me.

rljes

Posey Girl You ROck !  You have a great looking bald head!  Go for it!

I started #1 Chemo yesterday - So far so good.  My Neulasta pod will go off tonight at 7pm 
Anyone take Essential Oils ?  my cousin gave me Copaiba. suppose to sniff it for Pain relief, skin disorders, stomach issues, UT disorders, sore throats, and anxiety. 

Blownaway - would perjeta make a difference? 

Dannajae - your haircut looks smart and cute.  it suits you!

What is everyone doing for itchy scalp while loosing hair?

Take care all 

whywhy

Newly diagnosed and scared to death. Have a beautiful 10 year old girl and wonder if I'll see her going to college. First time met oncologist today. Suggested chemo every 3 weeks (ACT) with Herceptin and Perjeta. Probably total 18 weeks (not sure yet, another meeting scheduled to discuss details). Still need to see radiation oncologist. Previously in perfect health. Totally devastated and scared.

whywhy

Left, 2.2x1.8cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (FISH)

coachvicky

whywhy...

I promise ... it will get better.

I encourage you to embrace this journey and learn all that you can.

In the beginning it is a shock. No woman ever wants to join the BC Club. I will tell you that 17 monthsfrom diagnosis, I am in the best place I have ever been in life. It sucked for a while. (it sucked a lot) ,,, And then I got new-they-are-not-trying-to-kill-me boobs.

Ask ANYTHING you want. The women in this group were my life saviors. You will find love and support here.

And you will get better. It is just going to take some time.

Reread what the woman who started this group said ... it is YOUR body. You are in control. Long after all the medical people are gone you will be left with the decisions and you body. Ask us and all the women here will share how we made our decisions.

Vicky

Taco1946

Interesting article, Hap although if it said what "high doses" of biotin were, I missed it.

whywhy

coachvicky

Thanks for kind words. Some questions. The oncologist recommended chemo every 3 weeks. He said dense dose damaging to heart that's not revertible (unlike Hercepton). He also recommended ACT. Still don't know all the abbreviation yet. More will be discussed with the oncologist tomorrow. Do people with HER2+ mostly do dense or every 3 weeks? I read it's better with dense dose for premenstrual HER2+.

Also what do you think about importance of the facility vs the importance of doctor. I like the doctor I saw. But he is in a very small location with several large chairs for chemo. Not sure about the nurses. Not too far away, there is a fairly new chain Dana Farbar satellite location. Have not met the doctors there but the profile is not as stellar compared to those from Dana Farbar main location. Should I choose doctor over facility? Or is this a pretty standard treatment no matter where I go. So I'll be better off with a new facility (possibly better nurse)?

My surgeon told me to leave all the jobs to professionals and try not to google everything.

moodyblues

Hey all,  Implant replaced the TE yesterday and everything went well.  Have to say though that my reconstructive surgeon had me arrive at 7 am and after waiting and waiting and waiting, my sister went out to look at the surgery board (and ask what was up) and was told that although I was scheduled for 7 a.m. my doctor NEVER arrives till 12:30 for his surgeries.  What an *** .  He showed up right at 12:30, I wanted to hurt him.  lol 

Want a funny that was not so funny?  While accessing my port they put a fish net sort of cap on me and almost immediately my scalp started to itch, and I do mean itch.  As soon as she was through, I took off the darn thing and my scalp felt like I had rolled in poison ivy.  I scratched like a dog with fleas....today I have scratch marks on my poor head.  Envision a mostly bald headed 55 year old woman with scratch marks on her head, stitches and glue across her breast, black and blues from where they removed the monitors.  My bottom hurts from the catheter and my throat hurts from what I guess was a tube down my throat.  As I was driving back to my home today (1.5 hours from hospital) I got sick and we had to pull over so I could throw up.  Hey, but I am still up and kicking!

Posey, you look beautiful!

whywhy, Vicky is correct, it WILL get better.  Ask anything and everything, we are here for you.

Specialk, hoping your hearing will recover soon!

Melanie

moodyblues

Hapb.  He is excellent at what he does (very little scarring etc) but, he arrives very late for his office appointments as well as surgery.  I stay because he is good.  I wish I could charge him for all of the time I lost just waiting on him!!!    

Cherry-sw

moodyblues, 4,5 h to wait for the surgeon? No doctor is that good, I would have made a scene and wrote a bunch of complains, there is no way it could happen here, at least I never had such experience. Why is he behaving this way, totally disrespectful, what about all other people from the staffwho come on time, are they waiting for him as well, why does he schedule any appointments at 7.00 if he wouldn't show up until noon. I am sorry, I just got so upset for your sake. Hope you will recover soon. Cherry

Cherry-sw

whywhy, sorry you had to join this group, I really am, but you will find a source of support and comfort here on these boards, it has been my lifeline since I have nymodern into it by accident while searching the internet. The diagnosis is over-whelming, you are in total shock, I recognize it completely, but it will get better you will find your new normal, you will simply have to in order to survive. I have an 11-year-old myself and it is heartbreaking to look at her and think that we have to go through it while she is so young but she is taking it well, I have to agree with everybody who told me before that children are resilient, she takes it much better than I thought she would.

Your choice over either a good doctor or re-known clinic is hard but both are equally important even though the former was more important to me because in the end you have to trust your doctor. Going to a smaller clinic and save yourself time is also a good reason to choose this closest facility. It is still s bransch of DF so you can always ask for second opinion. Not googling might help but it is hard to stay away from internet since it gives you a sense of control.

The regimen you have been offered is a standard of care for your tumor, I am doing it myself at the moment, done with weekly Taxol and am on my first infusion of EC that is equal to your AC in the US, I am in Europe. It is tough but manageble. I was concerned about EC and decreased heart function but my doctors have reassured me that It is reversable for the absolute majority of their patients. Please ask any questions here, I also been told that a lady who goes under Barred Owl gives very professional answers and here we have our SpecialK, she is a walking Wikipedia to me. Hang in there, it will get better. Take anti-anxiety or anti-depressives, it will make a huge difference, times like these call to extreme measures. Hugs,Cherry

Suburbs

Why why, welcome and I am very sorry you have to be here. Rest assured that you are not alone and this group will support you. The beginning of a diagnosis and staging is tough. Once the treatment plan is in place and you start, things settle down a bit as you work through the steps and the side effects. As time passes and you get further away from chemo, you will barely remember it and marvel that you got through it. It does get better. I imagine these words may not reduce your anxiety. Many, including me, take anti-anxiety and anti-depression meds. Sleep is aided by these as the steroid pre meds can keep you up at night. Please feel free to complain and ask questions. We have all been there and are here to listen and support. I wish you all the best.

coachvicky

whywhy,

My chemo was every 21 days. There are others on this board that understand the types of treatments far better than me. Take your time to decided what you want.

Couple of things that helped me early on was to always have someone with me at my appointments. They made written notes. If anyone said anything I didn't understand, I stopped them and made them explain. Ask here too. Words and terms will be thrown around like a foreign language in the beginning of this journey!

I selected the facility over the doctor and regretted that decision. I selected a facility that had privacy as oppose to the oncologist I liked with an open bay facilty. My husband used gel caps on me and I didn't want anyone watching. Looking back that seems kind ofsilly but I was at a different place back then.

I limited my research to the research on breastcancer.org and a couple of oncology research sites. As to your surgeon's comment about the professionals ... I am the professional of my body and my life. Just because someone is an MD does mean they are smarter than me. They may be an expert in a field of study but that is all. Also, call be me by my first name without my permission and I will call you by your first name no matter what your title. Make sure anyone touching you washes their hands. I can't tell you number of times I have told someone to wash their hands!

As Suburbs wrote, if you need something to cope, get it. Just ensure you are correctly diagnosed. My Oncology Team wanted me to take anti depressants. I was not depressed but I knew something was off. Dang, I was daning on my eyelashes to have the cancers removed and be alive! My Primary Care got me to a good Psychiatrist who diagnosed me in shock and gave me prescription drug I needed.

I hope you are feeling better today.

Vicky

shelabela

sorry you are joining us whywhy, but welcome. This site is amazing for info. As Vicky said this is one of the only places that i get my info from. I also suggest asking tons of questions and never leave an appointment until you are happy with the answer you get.

KimCee

Moodyblues...congrats on being promoted to implants! Waiting for the surgeon, yuck...I would be ticked too.

Welcome whywhy, tough decision. I was in that boat 18 years ago and chose the oncologist. Saw his most and his plan was better for me at that time.

Itchy scalp...omg...hurts to scratch but if I don't, drives me nuts. I have put everything on it I can think of, no relief. This did not happen 18 years ago. Is it Taxol or Herceptin

moodyblues

Cherry  I will write my letters of complaint to him when I am through with him and he is through with me.  I still may do the other breast after genetic testing is through so, I am being extremely patient with this man.  He is so lucky I am not 18 because I would have given him an earful and it wouldn't have been pretty.  I guess when I look at his work and how good it is and realize how I have had no issues with infection, TE pain etc., I have just tried to overlook his sorry timing and arrogance.  I guess, in my mind I'm giving him grace which he probably doesn't deserve but somehow I am still able to give.  I am amazed at my patience with this bald man!  

meg2016

Whywhy- never underestimate the value of a second opinion if you are feeling unsure. I traveled to Dana Farber for a second opinion, just to give me peace of mind. It changed my treatment completely, so there is a standard of treatment but there are variations on that standard as well as trials. I ended up traveling there for my entire treatment (and I fly) but it was completely worth it. I can't speak to the satellite hospitals for DF, but I have only good things to say about going there to the main facility in Boston. My MO at DF that I met the first time said she would tell me if my local treatment standard was the same as her recommendation and would send me home to do it if so. But she indicated that there were several things she would do differently. You get the benefit of their full tumor board (and I would expect the satellite hospitals do as well.) They were also amazing at fighting my insurance for some of the newer treatments (Perjeta at the time) as well as Neulasta during chemo, etc.

Cherry-sw

moodyblues, you have my approval to give him an earful or at least inform he that he truly does deserve one, but you are right, you do it after. Still cannot believe that a doctor can be such a jerk and get away with it so easily.

shelabela

kimcee, have you tried almond oil or sesame oil with lavender mixed in it? I used that on my head when it itched and it really helped. Or coconut oil?

KimCee

Shelabela, I tried the oils but not with lavender mixed in. Will try that...thank you 😁

aleuzing

Anyone have a grade 2 triple positive tumor postmenapasal ? I'm doing neoadj. treatment now TCHP, and will have surgery in January. I have no clue if my lymph nodes were involved, my tumor was estimated at 2.1cm. Looking for anyone in a similar situation. I'm not sure if I should do the lumpectomy or mastectomy.

LTWJ

aleuzing, your diagnosis sounds like mine. I had TCHP neoadjuvent chemo, then lumpectomy after breast MRI said everything was gone, but tne the pathology came back without clean margins anywhere so I then had a bilateral mastectomy and Diep flap restoration. I knew I wanted this type of restoration and it can only be done once so I had both breasts removed. The pathology in tne clean one came back with ilsin situ so my dr was happy I chose to do both. My oncologist said this was the protocol after my initial diagnosis, tne neoadjuvent tchp

whywhy

Coach Vicky, Suburbs, moodyblues

• I also felt better if I research and understand the difference choices and risks. I am trying to keep up with all the names. Just realized that for ACT and TCHP, The C & T could mean different things for different doctors (T could be either Taxol or Taxotere, C might be different too). Very confusing. Not as standard as I thought.

• As for anxiety, I starts to feel a bit better with everyone's help. We'll all get through this.

Meg2016

• Thanks for second opinion suggestion. I'll definitely go to DF for second opinion at least.

SpecialK

whywhy - If AC-T has been recommended, this would be Adriamycin/Cytoxan given together, then Taxol. The AC is usually every two weeks for four doses, then either 4 dose-dense Taxol, or weekly doses. Herceptin/Perjeta are given with the Taxol if this regimen is used. TCHP is Taxotere/Carboplatin/Herceptin/Perjeta. There are also some on this thread who have had 12 weekly Taxol with Herceptin - this is generally used as a stand alone single agent chemo for those with tumors smaller than 2cm and node negative, or stage 1. These regimens are not randomly combined, they are given as per NCCN guidelines - here is the link for Her2+ patients:

https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#56

Binniebin

Kim cee, I use an oatmeal baby shampoo, i don't have an itchy scalp but as I'm prone to itchy skin I looked for oatmeal. Are you at the shedding stage?