TRIPLE POSITIVE GROUP

SpecialK

idkwhatsnext - welcome - but sorry you have to be here. The order of treatment is determined by a number of factors but for Her2+ patients it is usually driven by tumor size. You can't assume that you will be node positive based on tumor size though, I have seen large tumors that are node negative, and small ones that are node positive - the logic is definitely not linear. Generally tumors 2cm or larger receive chemo first, not because of the suspicion of nodal status, but rather because when Perjeta was approved for use by early stage patients in fall 2013 that was the size criteria for inclusion, and at that time Perjeta was a neoadjuvent drug only. It is now approved to be continued adjuvently as well. This is commonly how standard of care evolves. Prior to 2013 most had surgery first regardless of tumor size, unless there was concern for inability for the surgeon to get clear margins. Most people who undertake neoadjuvent TCHP will get a port and I have seen some folks have their sentinel node biopsy done at that time to get a clear picture of nodal status before starting chemo. If that is not possible, as long as your treatment course would not be altered by nodal status it may not be that critical if your imaging also appears clear.

Beesie

idkwhatsnext,

Here are the NCCN Treatment Guidelines for pre-operative chemo. As SpecialK noted, for HER2+ cancers, neoadjuvant chemo is recommended if the tumor is T2 or greater; a T2 tumor is <2 cm. The other criteria is being node positive (N1).

idkwhatsnext

Thank you SpecialK and Beesie for the additional info--much appreciated! I have not been able to get in to see an MO yet through Kaiser SoCal, so I have many questions that I have not been able to get answered. I'm also getting concerned about how long the process is taking to get me to the treatment phase.

Testing phase:

8/19 mammogram

8/27 follow-up mammogram and ultrasound

9/1 ultrasound and stereotactic biopsies

9/14 Her2+ result given, BS recommends chemo before surgery

9/17 MRI (waiting for results)

ElaineTherese

idk,

It looks like you're moving along at measured clip -- not super-fast, but not super-slow. I wouldn't worry too much about getting to treatment quickly -- even Grade 3 cancer doesn't grow THAT fast. You might also have to get a heart scan and a port placed before you begin treatment. One benefit of doing chemo first is that you can see whether or not chemo worked for your kind of cancer. I did AC X 4 and then Taxol (X 12) plus Herceptin and Perjeta for five months total of chemo. It was very encouraging to see that this regimen wiped out all the active cancer in my breast and compromised node. Since the cancer was gone, I felt better about getting a lumpectomy rather than a mastectomy. Good luck!

morrigan_2575

You're moving at a decent pace. You'll also need an Echo or MUGA and probably a Port Placement (unless) you opt to your and IV.

Believe it or not your first treatment will be here before you know it.

Jettie

when i started tchp, i was already having trouble nodding off and taking trazadone, what I found is that when i do eventually sleep, i wake up 2 hours later, awake for 30 mins and sleep again ( if lucky) , which is not good for getting deep sleep, tried both types of zoplidone the normal and ER neither worked in the dose prescribed... onco sent me for brain scan to see if anything was up there and is all clear, so am now just thinking i have got into so form or habit i need to break.

Try the trazodone and see if that works for you. it did for me prior to this

wahoomama87

IDK -

You've gotten lots of good advice but I'll chime in too! I did chemo first, then surgery. My tumor was 2.4cm at diagnosis - and I had one positive node. So that made me an immediate candidate for chemo. The good news is that I was 99% disease free when surgery came around and they got everyone out with surgery. I opted for a BMX even though the left breast was clear. I've heard about too many people having a recurrence down the road and I wanted as much breast tissue gone as possible. I am now NED between chemo and surgery. Since I had a positive lymph node they didn't mess around with my timeline:

Mammo/ultrasound - 3/4

Biopsy - 3/18

Diagnosis and typing - 3/23

Port - 4/5

Started chemo - 4/8

I finished chemo at the end of July and had surgery August 24th. I'm now trying to decide about radiation - but supposed to start next week. Then I finish up my year of Herceptin/Perjeta. Since I was so close to a complete response, my MO did not recommend that I do Kadcyla.

Kris

Anonymous

Fab4mom-we had great insurance that did not have a huge deductible or out of pocket. I maxxed it out for three years lol because after my mastectomy, I ended up with a pseudomona infection, lost the expanders right when they were just about ready to be switched out. Totally sucked. Had to start all over, so had 9 surgeries in one year lol with recon. They tried to save them with IV antibiotics that I administered at home (or the back seat of my car if we were going out to dinner with friends lol.)

Special K-I have to log in to check on every one. I really do like being on here and should just stay as I am the worst at living beyond. All the people that say they quit thinking about it after awhile aren't me lol. I still think every ache and pain is a recurrence somewhere. Funny that you mentioned edibles. I have never tried any of that, but always wanted to. When I was with my daughter a couple years ago in LA, she had a friend bring over a big ole doobie and a vape think for me. We laughed ourselves silly. I have never smoked either so that doobie was a killer. But I slept like a baby.

Fast forward to Covid-LA daughter came home in March right when they were shutting things down to be home for out second grandson's arrival. She stayed until June (her job can be done mostly remotely), went home for a month, came back when LA went downhill and beaches and trails were closed. Stayed until after Labor Day, AND is coming back again at the end of the month lol. My goal is to find her a job she wants here and convince her to stay. All of which has nothing to do with edibles....

We did a little research when stores started to open back up and realized there was a store in Danville IL, only 90 minutes from us. Off on a road trip we went! I am now a huge fan of indica gummies for sleeping. I wake up refreshed. But I still feel like I am doing something illegal lol.

Morrigan-All the things Special K mentioned for neuropathy was pretty much what I took. At each infusion, I stuck my hands and feet in totally mismatched insulated lunch bags with frozen peas or baggie of ice. I looked like an idiot. Nurses laughed everytime. I did not have too much. Fingertip tingling and my feet were always freezing. Just ice cold. Hubs finally took to putting heating pads and hot water bottles at the bottom of the bed for me at night so I would stop sticking my cold feet on his.

ElaineTherese

fluffqueen -- so good to hear from you! I'm glad to hear you're doing well. Thanks for the sleeping tip -- we have medical marijuana in my state (OK) now, and I should be more aware of the sleep aids now available here. Indica gummies, huh? Might be worth a try!

Iamloved

How do you get your Dr to prescribe the medical marijuana? I asked for it after round 2 because of the nausea and she said until they have exhausted the pharmaceuticals she sees no reason for it. Maybe I need a different approach.🤔

Fab4mom

I have trouble sleeping, never thought of trying medical marijuana. Marijuana is actually legal here now in IL. It seemed like a big deal at the beginning of 2020, but then this year kind of turned into a train wreck, so I never hear any issues with having a dispensary nearby.

I have a meeting with my oncologist this week before I start Kadcyla and Tamoxifen. I had TCHP, 5 HP only, double mastectomy and axillary node dissection (with residual cancer in breast and nodes) and I'm finishing up 28 rounds of radiation. Moving on to the next phase of Tamoxifen and 14 rounds of Kadcyla. Any advice on questions I should be asking onc before I start this next round of treatment?

AngieB92

Fab4mom - no advice really but I started Tamoxifen and Kadcyla the same day and they have both been kind to me. I wish you the same!

AnnaTheBrave

I'd be interested in the discussion of weighing Tamoxifen vs ovarian ablation with AI's, which is where my MO is going to push me...so if you haven't had that convo, my understanding is that it's worth having. Best of luck

Fab4mom

AngieB92 - I'm glad to hear it's going well for you, I'm very hopeful for the same for me.

AnnaTheBrave - I did ask my obgyn about ovary removal versus chemical options. My onc hadn't gotten into details to me at my last appointment, she said tamoxifen, and we would monitor to see if I stay in menopause from chemo. If not, she said I would get "shots", so some sort of ovary suppression I'm assuming. My obgyn said there seems to be some data would indicate that surgery is very slightly better than chemical ovary suppression. I'm going to ask for alot more details on what my onc has planned for me and other options for sure. Thanks for the reminder.

ElaineTherese

I've been doing Ovulation Suppression -- OS (Zoladex) + Aromasin for over five years. I was premenopausal before chemo, and my ovaries continued to function through AC. I had my last period in September 2014, when I started Taxol + Herceptin + Perjeta. However, when MO tested my hormones after surgery, I was still producing lots of estrogen. Based on the SOFT study, my MO recommended Zoladex + Aromasin because that is a bit more effective than Tamoxifen. My OB/GYN would have been willing to remove my ovaries if I'd insisted on it. However, he noted studies which show that women who keep their ovaries live longer than women who don't.

Right now, I'm slated for seven years of OS + Aromasin, so we'll see what happens. For me, this regimen is tolerable, though not everyone who's done it can say the same.

morrigan_2575

My MO didn't want to do Lupron+AI and Kadcyla. So we're doing Tamoxifen for now and will reevaluate in May. I'm doing real well on Tamoxifen so I kind of dread switching to an AI but, I believe the numbers are better.

My eventual goal is to remove all the plumbing as there's been both Uterine and Ovarian cancer in my family. Not sure it's worth the risk especially when an oophorectomy has it's own benefits

Eucalyptia

Good Morning! New to the group...(Not so happy to be on this pink t-shirt team, but here we are. Happy October to you all).

Back story: dense breasts, weird mamo in August 2020/ stereotactic biopsy 8/26, diagnosis of IDC 8/27 in right boob, MRI biopsy 9/9 of left boob confirmed DCIS 9/10, Double MX 9/22. Oh, and I turned 40 during this super fun time. I have one child, a little boy who turns 4 in October.

Had my double mastectomy on 9/22 with tissue expanders (healing well, very sore, trying to keep spirits up...off the strong pain meds. I'm brca2+ and triple positive (ER+, Pr+, HER+). The masses they found were larger than originally thought (was supposed to be 1cm IDC in right, was almost 3cm and 2 other masses: 2cm DCIS in left. Almost 10cm of cancer in both boobs). Ended up being skin saving/ but not nipple sparing. Clear lymph nodes (sentinel node biopsy).

I meet with oncology next week- should I be emotionally preparing for chemo? Or is there a possibility I will be able to skip medical treatment? Thank you.

morrigan_2575

You will need Chemo of some kind. I did 6 rounds of TCHP. I know Chemo is scary (I was terrified) but, it is doable. I handled it well and the SEs i did have were managed via meds.

I would have continued the HP (Herceptin/Perjeta) for 12 more rounds but they found residual disease after surgery (I did Chemo first) so I was moved to Kadcyla for 14 Cycles. Kadcyla is treating me very well which is comforting because it's 10 months of Herceptin bonded to a Chemo Drug.

If you're worried about your hair you can Cold Cap but, there are pros/cons to cold capping that go beyond the cost. It also depends on the treatment you do, cold capping works well with TC (Taxotere/Carboplatin) but, not AC (Adriamycin/Cyclophosphamide).

Please check back and let us know what you and your MO decide. Sorry you had to join our little group, it's very scary but you're stronger than you know. ❤

Eucalyptia

morrigan_2575JavaJana

Thank you so much. I want to prepare emotionally...but I am not even sure that is a thing. Prior to this, I was a very healthy 39yr old person. I worked out regularly, finally lost the baby weight, was feeling strong and finally comfortable in my skin. This has upended all of that. I am terrified of what chemo/ med treatment will do to my body. I can't imagine not being able to "do". I am one of those people who is almost always moving - very efficient, very "capable". This is taking an emotional toll that I was not anticipating.

LaughingGull

Hi Eucalyptia

So sorry you are here.

I was 47 when diagnosed, very strong, active, athletic, always on the move, uber-capable. I want to tell you that you will get through this, and, from a physical standpoint, it will likely all be very temporary. Think of a pregnancy. A temporary slow down that lasts months, not years, then you go back to normal. And, same as with pregnancy, you will go through chemo as the person you are. If you are active, you will be active (within temporary constraints) during chemo. You will enjoy your kid. Not sure if you work and what kind of work, but I was able to work all through chemo. I kept swimming, I kept jogging, then moved to walking, then slowly back to jogging. I didn't care about losing my hair, and in a way it was a relief not to care about coloring or blow drying it for a winter. Now I wear it short and I love it...who wants long hair? I am now about to turn 51 and I am pretty much as strong as before if not stronger. I certainly look better, after shedding a few pounds during treatment. I have some side effects from hormone treatment, some lingering little bothers from radiation and chemo but none of that has altered the person I am or turned me into a couch potato or an incapacitated version of my prior self.

I took time off after surgery to take the time to do my physical therapy and work on recovering range of motion, to me surgery was way more incapacitating than chemo. Take care of yourself

You can do this!

LaughingGull

SpecialK

eucalyptia - what laughing gull said. I am sorry you are facing this at 39, I was 54 at diagnosis, but like you a capable and busy person, a military spouse. My husband was/is in a job that means he is gone for periods of time and a "regular" work day is a minimum of 12 hours plus a commute. He was not in a situation to take a lot of time off and we do not have family near us. I went into chemo after five surgeries in a short span so I was tired, but still managed to get everything done I needed to. You arrange your life around the days you might not feel 100%, put your head down and your shoulder into it, and take those steps forward, then you are on the other side of it. I have had no permanent issues from chemo, and celebrate this week that I am 10 years out. You can do this - we are here for you.

Eucalyptia

LaughingGullSpecialK Thank you so much. This community is amazing- I am so appreciative to have found a group who can relate. :-)

Thanks and I will keep you posted.

ajminn3

Welcome Eucalyptia, there are some great supports here and I’m happy you’ve found us. I made it through TCHP, radiation and am now halfway through HP and started OS/AI. It’s not a pretty road, but I’ve made it through okay with manageable side effects thus far. Hoping similar for you. There are some wonderful people that are wealths of knowledge on these boards!

AngieB92

Eucalyptia- so sorry you are here but you are not alone!!!

“..put your head down and your shoulder into it, and take those steps forward, then you are on the other side of it.“

SpecialK is spot on in her quote above!! You can do this!

I had 6 rounds of TCHP before surgery and am currently three treatments away from finishing Kadcyla. I have been on Tamoxifen since April. It’s all good. I believe I am even more active now than I was before.

You absolutely can do this!! ❤️

Nsbrown54

Glad to see a post that talks about a positive outcome. I’ve done 5 rounds and was starting to feel a bit depressed. I have GI issues (Gastroparesis and GERD) that seem to contribute some of my side effects.

Thanks for the positivity.

AngelsGal57

Hello everyone,

I dont post very often because I stay up to date with you all on my phone reading the posts from this feed. I am going to be starting a NEW drug that has only been approved 3 months ago and I will be the first patient that my Dr is putting on it. The Kadcyla treatment I just finished in July didnt work and I have been inundated with cellular activity in multiple places on my body. It was a shock to us and to him that the Kadcyla either didnt work or just kept everything at bay until it was out of my system and then burst on the scene like confetti. I dont know the name of the drug yet so I cant do any research. Will let you all know as soon as I can.

Blessings

Angelsgal

SpecialK

angelsgal - that is an unusual situation - normally with developed resistance the drug just stops working, it's interesting that Kadcyla appears to offer some measure of control for you, but only for a period. I'm sorry it didn't work as well as anticipated. Is the new drug Tukysa (tucatanib) that your MO Is looking at?

AngieB92

Nsbrown - Keep your head up and spirits lifted! What you are experiencing is most likely temporary and will end when you finish treatment.

I am thankful for the women on here who post the not so good parts of their treatment so that I was given a heads up that if I experienced the same, it wasn’t unusual.

I try to let people know that my experiences with TCHP, Tamoxifen, and Kadcyla have not be as bad asI imagined. I ordered so much stuff in preparation for the worst and ended up giving 3/4 of it away to a local cancer center.

Taking care of yourself and listening to your body is key. Drinking lots of water and getting fresh air and exercise is also vital to helping you get past treatment time and start living Act 2 of your life.

ElaineTherese

angelsgal,

I'm sorry to hear that Kadcyla wasn't a long-term treatment for you. However, it's good to hear that you have another treatment to try! Hope it does the trick for you -- ((Hugs))

Nsbrown54

Thank you for your support.