TRIPLE POSITIVE GROUP

PoseyGirl

Hi Rachb, my hair grew while I took only Herceptin...

Re: rads, nobody ever told me to hold my breath during treatment? Hmm

ElaineTherese

HapB,

If your right side was being radiated, the techs wouldn't tell you to hold your breath. They only do that for breast cancer patients who are radiated on the left side (to make sure they miss your heart).

Jagger2015

Hi Ladies

Thank you so much for the warm welcome 🙏 It was so comforting to read all your letters and while I wanted to immediately respond to each of you, I experienced interrupted internet service and was unable to until now.

HapB, thanks for sharing and the advice and a reminder to work on forgiveness as part of recovery. Holding onto deep hurt eventually manifests in our bodies and is not beneficial to our wellness!

Moody blues, I no longer feel alone in my quest for answers and alternate treatments..and I will stay with the trusted websites for my information fix. I was initially afraid to chime in but you all are so honest in sharing your feelings and experiences....it is comforting for me to hear from you all.

Shellsatthebeach, I had an initial biopsy when I was diagnosed back in December 2016, but the HER2 results were inconclusive so I did neoadjuvant chemo, then surgery, after which I found out I was HER2 +ve

and no additional chemo with Herceptin was given.

Coach Vicky, thank-you for the reminder about making sure care is given to those that take care of us and share our ups and downs in this "new reality". I booked my husband a massage this week! He read your post and was grateful to be included in your suggestions ☺️ It must feel great to buy pretty bras again 👍

Poseygirl, I am happy to meet a Canadian girl here and find that we share a similar diagnosis!

Yes, onclive.com is where I've found the most information about triple positive bc and Dr Blackwell 's recommendations regarding neratinib. I haven't found anything that indicates this drug being used in treatment here in Canada. It looks like it is being used in the United States for trials and also for those who unfortunately have progressed to stage 4. My oncologist sent me for a brain CT scan on Friday because of headaches and nausea...I thought my symptoms were related to the AI medication but she was insistent ...so I casually looked up HER2 & Brain Mets and this is what I read BELOW among other transcripts. It concerns me that our Herceptin treatments only work from the neck down because Herceptin cannot cross the brain barrier.

Onc live.com

ONT-380/T-DM1 Combo Shows Promise in HER2+ Breast Cancer With CNS Mets

Excerpt.....

Hamilton: This is a novel HER2-specific inhibitor called ONT-380 made by a company named Oncothyreon. What is special about this drug is it is HER2-specific.

Additionally, it crosses into the blood-brain barrier. As we all know, brain metastases are a special problem for HER2-positive patients; up to 50% of HER2-positive patients will end up with brain metastases. This is much higher than patients with triple-negative or estrogen receptor¬–positive breast cancer.

Is there an understanding of why brain metastases are more likely in HER2-positive breast cancer versus other breast cancers?

HER2-positive disease tends to be more aggressive. We know that it tends to spread to the lymph nodes, and be more advanced at the time that we find it. There are multiple reasons that it tends to be more aggressive, and the brain is one of the places that it really likes to go.

Erica P. Hamilton MD

Cherry, thank you for your supportive response! You are right about our bc being biologically individual. On this onclive.com I've learned there are subtypes in HER2 BC that respond better to Herceptin than others. I am interested in preventing recurrence and while some of us are being over treated in early stage HER2 BC, some of us in stage 3 are being under treated.

I look forward to hearing your opinions

Hugs💕

Jagger

PoseyGirl

Hi Jagger,

May I ask how we as stage 3'ers are being undertreated? Should we have more chemo?

I am shocked to read that up to 50 percent of her2 patients will end up with brain mets...50 percent??? I thought that a lower percentage than that recur overall...that's a nasty number.

Edited:Ok, just looked it up. In women with metastatic Her2 positive cancer, it will spread to the brain in up to 50 percent of cases.

Onclive does seem like a good site for sure. And this treatment; I had not heard about this. It sounds very good; lets hope we hear more on it soon.

Good luck with your scan. But nausea certainly can accompany using AI's. But he/she obviously wants to be cautious.

debiann

Here is an article on brain mets

breast cancer brain mets

Lita19901

Posey - thank you for delving into the article Jagger shared about HER2 positivity and brain mets!

Statistics can be frightening when you don't have the whole picture. In the article that Debiann posted the statement that 50% of HER2+ BC patients would develop brain mets was based on a previous study that also was studying brain mets in Stage IV BC patients.

Iwbt

hi, I'm triple positive. Monday is my 6/6 neoadjuvant chemo infusion. I'm excited and nervous at to same time. I will continue with herceptin for another 8 months.

Monday I meet with the breast surgeon for the sevond time to schedule a masectomy. I'm trying to decide if I should have a single or double. But it gets complicated. I was diagnosed with a cardiomyopathy (arvd) 20 years ago, and have an implantable defibrillator under my left breast. Think boob job but with a metal box with lead wires that go from the defibrillator through a vein into my heart to monitor.

Anyway the lead wires and my port are in the same vein and my cardiologist thinks that when the port was installed the leads were "bumped" and now my defibrillator is picking up "chatter". So the leads need to be replaced. My leads were on borrowed time.....they have a life expectancy of 12 years on average and mine are 20 years old. But it is major surgery because they sit in my heart, and there is 20 years of scar tissue holding them in place within my heart and in the vein.

Anyway. There is a lot of coordination that must take place before a double masectomy can be performed.

So my questions are 1. Is the double masectomy worth it? For my peace of mind? I also do not want to ever go through chemo again if I can help it.

2. Can the left masectomy be performed at a later date and still be covered by insurance. That would be a second surgery with the possibility of additional complications.

3. I'm not a candidate for reconstruction. I don't have enough body mass. No where to get skin, muscle, or fat from to build a fake boob, and an implant would show all bumps ridges and edges because I don't have enough body mass to cover it. So is one boob better then none?

This causing me a lot of stress. Your thought and insight on thus would be appreciated.

PoseyGirl

Hi Lwbt,

Welcome to the thread...

Your situation is complicated for sure...so sorry for the added stress.

I can't say much to the insurance question as I am Canadian, but here are my thoughts on the other.

I know that every woman has a different philosophy regarding the question of double versus single. Nowadays many women opt for the double as they feel safer that way. However, there are no statistics stating that the double adds benefit. For some subtypes this might be different, but my surgeon said he didn't feel it was necessary. I had one side done and am going to lobby for imaging twice a year versus once.

On the question of reconstruction, I too don't have the body mass to provide many options for surgery (I am about 5'5" and 115 pounds - I am so thin on top that my port eroded through the skin 4 treatments in). The one option I was presented with involves cutting into my lat (back) and putting in an implant and this would seriously limit activities. I have decided no to this and just have one very small breast on the left. I am going to just deal with that personally and go flat, but everyone and their situation is different. Is your good boob larger? Are you single? Have children? Do you attach a lot of your identity to your breasts? These and other factors are all things that make for a complicated decision. I am 48, but a friend of mine - same age - is opting for reconstruction as she's single. She also has more surgical options.

I hope this helps a bit. I know several women in their 30's and 40's who decided to go flat or one sided. I know two who have done reconstruction

PoseyGirl

Hi all,

A general poll...for those of you who had mastectomy with lymph node removal, how is your range of motion in the operated arm? Do you get any pain? If so, where?

I have a little pain when I move my arm in a certain direction; it is in my shoulder, I think in the rotator cuff region. I'm not sure whether tochalk this up to a dragon boat pull from a season of paddling that ended mid September, or if it's related to the surgery somehow...

ElaineTherese

Hi lwbt!

I'm sorry you find yourself here.

A double mastectomy is no guarantee that you will never have a recurrence or need chemo again. It is true that you are more likely to have a local recurrence if you choose a lumpectomy + radiation, but the survival rates are the same.

I chose a lumpectomy + radiation. Yes, I may someday need a mastectomy, but when that time comes, that time comes. Until then, I chose breast conservation. I don't see why insurance wouldn't pay for a mastectomy down the road.

Best wishes; this is a difficult decision.

Iwbt

poseygirl, thanks for the response. Chemo has taken a toll on me. I started this journey in May at 5'10" weighing 140 lbs. This morning I weighed 112. Not good. I have horrible diarrhea. My anti-diarrhea medication will control it enough that I can get to a bathroom before I have an accident, but it is still there and bad.

I'm pretty sure I'm not opting for reconstruction. I don't like the potential complications. And I'm not keen on the mobility limitations. I don't have large breasts. I'm fact with all the weight I've lost I'm pretty much flat as a pancake now.

I'm normally have no problem making decisions and don't second guess myself. But this is driving me crazy. I know the statistics on a recurrence or on developing a new cancer. But my emotional part of my brain keeps telling me it can't do chemo again.

I just want to make the right decision.

CCNC

lwbt, I am assuming you are on tchp since you are in the triple positive thread. If you are, try stopping all dairy during chemo and see if the diarrhea improves. I did this halfway through my treatment and it made a world of difference. I just wanted to mention that, in case you are consuming dairy, it may make a difference for you as well. It does not cost anything to try. I improved drastically within a few days.

Iwbt

ccnc, Yes I am on tchp. And I will try eliminating all dairy and see if that helps.

Another question. How long after your last chemo infusion before you start feeling better? I mean for the diarrhea to go away and food to start tasting good?

moodyblues

Debiann.   Thank you for the link, it was very informative.   I read it and it is so sobering. 

Cherry-sw

Hi lwbt, welcome to the thread, sorry you had to join us. I have no advice to offer since I had a lumpectomy, my cancer was above the breast, and I am in Europe, but just wanted to say hello. This is a great forum, I would have been lost without it. Cherry

BellasMomToo

lwbt: After about 4 weeks PFC, my taste buds were about 85% back to normal. Most things tasted normal, but some things tasted a little off. About 8 weeks PFC my taste buds were 100% normal. My stomach issues (diarrhea & constipation) subsided about 4 weeks PFC too. And it also took about 8 weeks PFC to be normal again.

I opted for a UMX. I wanted to avoid radiation (but there was no guaranteed with a MX). And if I had a LX I would have lost my nipple anyway cause my tumor was right behind the nipple. So I decided on an UMX because I have very small breast and wouldn't be too lopsided with one breast.

PoseyGirl: I have full range of motion with no pain or discomfort.

SpecialK

posey - it is hard for me to answer this due to being a frequent flyer in the operating room, makes me non-representative - I had bi-lat SNB, and right ALND. I have more mobility in the SNB/ALND arm, no pain, with 5 surgeries. SNB only arm has less mobility - but that side has had 16 surgeries, however I have no pain on that side either.

lwbt - if your WBC is stable I would also advise that you add a probiotic now that chemo is done - it made a world of difference for me. Energy generally returns noticeably at about 6 weeks PFC. Are you continuing on Herceptin alone, or also with Perjeta? Also - a disclaimer, having no reconstruction does not preclude complications, mobility issues, post-mastectomy pain syndrome, or lymphedema. Not trying to encourage or dissuade one option or another, just wanted you to be aware of that.

SpecialK

hap - couple of possibilities on why AIs cause joint pain. One is that the drug action causes a recognition of pre-existing joint/bone pain because of the decrease in estrogen - so if you already had arthritis or disk issues (I have disk degeneration that was pre-existing) it feels more pronounced due to less estrogen lowering the pain threshold. Less estrogen also causes a release of proteins that can hasten bone loss and joint "aging" which can cause pain, and can also possibly cause the breakdown of cartilage so there is less bone to bone cushioning. I am not sure you have been on letrozole long enough for that to be the case, but you may be experiencing the a heightened pain sensation due to less estrogen circulating. Having less estrogen can also incite an inflammatory state with these same proteins (cytokines), particularly in the joints. These things happen naturally with age as we become post-menopausal, but can be exacerbated by the lessening of available estrogen when taking AI drugs. There is the possibility that supplementing with vitamin D, calcium, glucosamine and chondroitin, MSM, or using NSAIDS can help. Also, acupuncture and exercise may help. I have found the more I move the less pain I have, and I have noticed improvement in joint pain with an anti-inflammatory diet. Many report that there is an initial period of joint pain but if you can get through it the pain dissipates the longer you are on the drugs. I would also advise that if you have issues on one brand or type of AI, try switching drugs or manufacturers - the additives and fillers in some of the generics cause trouble. I had more issues on generic arimidex (anastrazole) than on generic Femara (letrozole).

CCNC

lwbt, sorry I missed that you mentioned chemo starting in may. The elimination might not help at this point, but I do know that even just the gastro issues I had from only herceptin also improved with no dairy. A probiotic might be more helpful as mentioned already. I felt fairly decent about 4 weeks out but surgery, radiation and a couple of bugs have really worn me out. I’m hoping I start feeling better soon. This is just such a long process being a triple positive. Hope things improve for you

moodyblues

Now that I am through with chemo and only have the 6 Herceptin treatments yet to complete, does anyone have any ideas as to when they will put me on the AI's?  

Thanks!

Melanie

Tresjoli2

I just wanted to mention that i had to hold my breath during radiation. It was left side and that was.the only way to keep my heart out of the way freaked out during radiation I lived in fear of accidentally exhaling...

Iwbt

Thank you everyone. I appreciate the advice and insights everyone provided. I know it has only been a few months that I've been on this journey, but some days it feels as if it will never be over. Or I think about how much is left.

I will continue with herceptin and perjeta for another 8 months. My oncologist says herceptin and perjeta are a cake walk compared to the two chemo drugs I take. I hope so.

T-Sue

LWBT, welcome to a great forum, so sorry you had to join! I wanted to weigh in with my perspective. I needed a mastectomy because of two tumors in one breast. I opted for a BMX so that I never had to worry about recurrence in the "healthy" breast. I figured I would have one surgery, one recovery, one season of chemo. Also, I was able to do reconstruction with a small body mass (5'5", 120 lbs). They didn't have to use fat grafting, just tissue expanders and, soon, silicone implants.

Posey, my range of motion has returned to normal since my BMX in April. I dutifully did all the stretches recommended by my physical therapist. Hope you find relief!

ElaineTherese

moodyblues,

I started my AI after chemo and surgery. My MO liked to do things one at a time.

Carrielynn1

I am 43 yrs old. Found tumor end of July, had lumpectomy 2.8 cm plus 2 satellites, node negative. Had 2 more revision. Started chemo yesterday. I thought I was getting tchp but doctor feels based on a research done. That the increase in benefit of pertzamub is only .7 Is not worth the risks. Any thoughts?

ElaineTherese

carrielynn,

Many women are/were successfully treated for triple positive breast cancer without Perjeta. I think it will be awhile before we really know the effectiveness of Perjeta for early stage breast cancer as it is a relatively new drug. Best wishes for chemo with few side effects!

moodyblues

Thanks everyone for the info!

Iwbt

hapb,. My doctor isn't an insensitive jerk. All he meant was that most people tolerate hercepton and perjeta better then taxetere and carboplatin. TCHP has been rough so logic says removing two drugs from mix has to be easier. All i know is that it cant be worse.

Jumpship

Posey-I had surgery in 2014 and now, 3 6-week sessions of .PT and 10 acupuncture appointments I'm at 80%. By far acupuncture has given me the most movement. 2014 I could only move my arm forward and maybe 30 degrees north of that, never from the side of my body and not behind my back

SpecialK

moody - I started letrozole a month after I finished chemo, while on Herceptin.

lwbt - you may continue to experience GI distress on H & P as both of these drugs have that as a side effect. I had this issue, but the probiotic solved the problem. I did not have Perjeta as it was not yet FDA approved for early stage at the time I was treated.