TRIPLE POSITIVE GROUP
Comments
-
I saw a study by H Bonnefoi in France that saw benefit to pcr no matter the subtype, but moreso in triple negative and Her2 positive (hormone negative).
I was extremely happy, Kattis, till I read that it didn't seem to make much difference. From reading more and asking a coupl oncologists, it does help, but just mildly or moderately. But in spite of this, achieving a pcr is still considered a good thing (i.e. I shouldn't feel disappointed I got there). But the good news for triple positive is that other targeted therapies help to keep working away..
Oh, and p.s....I was 90 percent ER, and only 5 percent PR (so could be considered negative there)
0 -
Hi Poseygirl, thanks for the reference. I'll look for it. Anyway, on the PCR subject, it seems to me that the takeaway might be that not having a PCR is not really a bad outcome for a triple positive. For triple positives, less than 50% have a PCR.
0 -
Coach Vicky and SpecialK, thanks for your replies about timing of Prolia and the calcium. Very interesting! I will discuss with my MO on Tuesday morning, and maybe hold off until a tad later. I am glad I found this group of really savvy members!!!
0 -
To all of you in US, we have been watching CNN non-stop since my husband came home and told us about the Las Vegas shooting, our thoughts and prayers are with you. Now I saw him change the channel.
0 -
Thank you, Cherry. A lot of us are sick and tired of all the shootings, but our government doesn't care.
0 -
I think its hard to avoid some of the other organs when getting radiation. I believe the radiation goes right through you? Not sure, can anyone confirm that?
I checked with my cardiologist before deciding about rads because due to the location of my tumor, they would radiate near my heart. Cardiologist said avoid rads if possible, so I did an mx instead and being node negative, I could avoid rads.
These are the things I wish they would explain better BEFORE treatment begins.
0 -
Did they say there is any problem with your lung now or just that it has received some radiation? I hope all is well with you.
0 -
I am so sorry to hear that Hap. Hopefully its just something from rads. How was it detected, are you having any problems?
0 -
HapB, I hope everything goes well in December, all positive thoughts your way. Cherry
0 -
Hapb, that is disappointing about your lung. So sorry to hear that. Sending prayers your way for a good report in December hugs0
-
Why would you have to wait until December to get an answer on this growth? seems like an awful long time? hoping for good news regardless but just wondering because waiting if one of the hardest thing in all this...
0 -
hi gang,
New to this forum as a triple positive gal. HapB - my RO explained I would forever have some changes on future CT scans or X-rays as the radiation would affect the apex of my lung. It is caused by the scar tissue created by the radiation. She also discussed the breath holds helping in moving my heart further away from the radiation. As she said every centimeter counts with radiation so breath holding helps distance the heart from the source a bit. Hope this helps
0 -
Coach Vicky, You are such an inspiration. Good luck with your journey.
0 -
Hi, does hair grow on Herceptin and Prejeta? Anyone tried that?
0 -
Hi Rachb, my hair grew while I took only Herceptin...
Re: rads, nobody ever told me to hold my breath during treatment? Hmm
0 -
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).
0 -
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
0 -
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.
0 -
Here is an article on brain mets
0 -
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.
0 -
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.
0 -
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
0 -
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...
0 -
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.
0 -
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.
0 -
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.
0 -
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?
0 -
Debiann. Thank you for the link, it was very informative. I read it and it is so sobering.
0 -
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
0 -
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.
0
