TRIPLE POSITIVE GROUP

Hi everyone,

I tend to jump off the boards for a week and then want to catch up. I always am trying to find a balance of what I can handle...

CoachVicky, yay to you. That's wonderful. I am fearful of stopping treatment with just two Herceptins left. I wish I could reframe that.

SpecialK, I too am stunned by your knowledge. I keep thinking you must be a PhD!!!

Today I went to the hospital with my neighbour's mum as her family is out of town. She is 77 and has a smaller hormone positive tumour with just one node affected. As the radiation oncologist was talking to her about nodal involvement, I felt so emotionally triggered, I.e. Here I am stage 3. I get so scared (with neoadjuvant chemo, I don't know how many nodes were affected - my MRI didn't quantify really?! I had pcr, but I'm still frightened a lot). I don't think I can help out that much right now; I was glad to be there for her, but it's hard. And later, she was saying how badly she feels for younger women like me who have younger children - I am 48. I wonder if this anxiety will ease at all???

cherry - I think there are a lot of people walking around with burdens - who knows what the people you pass each day are dealing with in their lives. Since cancer strikes so many, surely it has personally affected many who seem to be going about their lives without apparent problems - just think, they may be looking at you thinking you couldn't possibly understand what they are feeling if this is happening to them too. You are not alone out in the world dealing with this, and be assured that we here totally get it - you are never alone when you're here.

As to your question regarding Herceptin resistance - there are two kinds, primary and acquired. There is some segment of those of us who are Her2+ for whom systemic treatment fails off the bat. I don't think that number is all that high, and try not to preoccupy yourself too much about that. I have been here on BCO for a long time and have seen it only rarely. Acquired resistance usually happens to those who are on these meds for a period of time as advanced stage patients, usually longer than the standard treatment timeline for an early stager. Resistance, specifically to Herceptin, happens when the medication can't overcome the signaling by Her for the cells to divide. This can happen also with anti-hormonal meds and different chemos - you see this also with advanced stage patients who are often started on anti-hormonals as their first line therapy, then switched after the particular med stops working, or are switched to a different chemo cocktail. For those with primary resistance it can be difficult to suss out what is not working - is it the Herceptin, or the chemo, or both? It is difficult to know which aspect of systemic treatment is not responding to some tumors - since the chemo and Herceptin are given concurrently, chemo is known not to be particularly effective on highly ER+ tumors so it is hard to determine which thing is not working when you have a highly ER+, Her2+ tumor. However, prior to the use of Herceptin, the prognosis for TP patients was more grim, so Herceptin, and now Perjeta for those that qualify, have greatly improved our odds. For the record I was 96% ER+, weakly PR+ and strongly HER2+, node positive and grade 3 - which all constitute an aggressive profile. I am coming up on 7 years, didn't have Perjeta since it was not being given to early stage patients yet, and I am still here posting, so take heart.

As far as hormonal receptor percentages - it works like this - the pathologist looks at a slide of 100 cells. If 60 out of those 100 cells have an estrogen, or progesterone, receptor than you would be considered 60% positive. It conversely means that 40 of those cells lacked the receptor and are not fueled by that hormone. It is entirely possible that a different slide of 100 cells might have a somewhat different number of receptors, as many tumors are not consistent throughout.

ERBB2 does mean Her2+, it is the genomic test indication for a Her2+ type, along with Luminal B, but I believe that Mammaprint is the only test that delineates this type of identification. Not many oncologists will run Mammaprint on patients who are chemo-bound anyway, so it is unlikely that you will be able to know, but it never hurts to ask.

posey - you were so nice to go with your neighbor's mom - it is hard to subject yourself to the added stress of someone else's cancer when you are dealing with your own. Offering your support when you are already worried shows your character. Good on you.

As for my PhD, it has come by osmosis - I have supported two of my work colleagues, diagnosed with breast cancer after me, by accompanying them to treatment and surgery - a 69 year old and a 35 year old, both single without family in town. I have had an inordinate number of friends who have been diagnosed with breast cancer, more than a dozen. There were three at the same time as me - which is bizarre. One lives here - two others in different parts of the country, all are fellow military spouses I have known for years. My dad and brother were both stage IV patients de novo with different cancers - lung and bile duct. I accompanied another young friend who had been diagnosed with a stage IV sarcoma to all of his treatment last year. My father-in-law passed away from leukemia late last year, and my mother-in-law has just been diagnosed with MDS in the last couple of weeks, which is rapidly progressing. I have had more than 30 skin cancers, a number of which have had to be surgically removed by wide excision (a lumpectomy) or MOHS surgery, and of course my own breast cancer. The silver lining for me is, and will always be, to be able to help someone else.

Wow. What can I say. Thank you and what an inspiration you are, SpecialK. I appreciate everyone's support - thank you all.

As an aside, my profile is very similar to yours, SpecialK...

Sleep well, ladies. This last weekend I was in a dragon boat regatta and there were about 7 bc teams. They have these opening ceremonies and the women's boats come together and flowers are thrown in the water. I blubbered as I'm new to it. It was both emotional and uplifting

Hi just popping in - had my last Herceptin last Friday. What a long year. Feels strange not having an appointment to "look forward" to in 3 weeks. Losing some weight and more exercise is next on my to do list. Thanks for all the posts I enjoy reading and learning what I can from your experiences

Thank you all for the congratulation wishes.

Yes, our home was filled with celebrations!

Here was my blog from Tuesday: http://leaderlines.net/it-is-over/

Many of you have written me about the struggle to continue. I understand. At Round 4 (my hardest) I did not think I could do Round 5. But I did and so can you!

When it was just solo Herceptin for 12 rounds, I questioned if I should continue. I continued and so can you!

I think the struggle is what my MO explained to me about 1/2 way through my treatments as, "I asked you to make life changing decisions when you were in shock." He re-answered every question I had about everything. I think there came a time when my heart began to heal and my head was ready to listen and understand. It was April 2017 when this happened. It was also when I returned to surgery to remove a benign lump from my left reconstructed breast.

For those of you with Arimidex in your future, embrace this with open arms! It took me about 4 months on 2 different manufacturers before changing to the brand name product. I documented every side effect to give my MO what he needed for the brand name referral. Now, I can hardly tell I take it. Very few & mild hot flashes and that is it. There are great forums here on the product and how women react and deal with Arimidex.

Best wishes,

Vicky

Helen.  Excited for you!

moodyblues, I grew up in a family farm too, well until I was seven we lived with my paternal grandparents, then we moved to the city but I still spent every summer there when I was a child and also lived there when I went to university. I know what a hard work it is to keep ecological gardening. I love beans, me too, but cannot digest them very well, so I am trying not to eat those so much. I know I have been eating unhealthy as well, all this hidden sugar and obvious sugar, and even if you prepare your meal from scratch you always eat some popcorn, chips or ice cream time to time but still weekly, not to mention wine and drinks. I cut on those completely after my diagnosis but berate myself for not doing it earlier even if I tried to. Now when I stopped and never even had a dash of abstinence I just think that for not being an alcoholic I certainly did drink way more I should have. It was all just stress and life became more fun with a drink. I did exercised on a weekly basis too. I have some ideas of why I got bc but I think I will never know for sure, the doctors so far said that the only reason I got it is because I am a woman, some of us do. And now some food is not good for this particular bc, no one ever mentioned that anywhere. I have a book with anticancer recipes, they state 12 foods that are good to eat if you want to avoid cancer, beans, pomegranates, curcumin are among those. Go figure.

You are on your 4th round, wow, good luck. I have not even started yet, I will be meeting my oncologist tomorrow. Many of the chemo drugs come from the plants, at least I know Taxotere does. It does not make it healthier for that for sure. I do not think that you can be very picky about your diet during the treatment, some of us feel so bad that one will be lucky to eat just anything, and the body needs protein in order to build new cells otherwise it will start taking it from the muscles I red.

cherry - yes, chemo works on any residual cells left after surgery, Herceptin targets the Her2+ aspect, and anti-hormonals are considered systemic treatment as well, and will hopefully block, or suppress, estrogen fueling, depending on which medication is used.

Cherry.  I was on the CombiPatch- lowest dose for hormonal issues for two years and I think it fed the cancer, I blame that but of course one will never know.  Maybe some day they will understand it all clearer but, not now.  We can't give up e.v.e.r.y.t.h.i.n.g., what would life be worth if we gave up a bowl of good chili or a glass of wine (for those who drink) on occasion....   We will just have to be diligent and splurge on occasion and enjoy this life we have been blessed with.  

Ladies, those who are close to my age, remember the movie the Warriors (street gang trying to get back to their turf).  Another gang taunted them and sang out "Warriors, come out to play", "WARRIORS, come out to play".  Well, we Warriors aren't playing, we will beat this!

Hi everybody, I had a meeting with my oncologist now. They offer me weekly Taxol with Herceptin in 12 weeks, radiation one months after chemo, Herceptin for the rest of the year with antihormonal afterwards. How does it sound for my diagnosis? I am ER80%, PR60% and my Her2+ is 13.8 according to IHC. Isn't it very high? They do not usd FISH here. I do not have so many hospital choices, everything is centralised here and we basically have three clinics that collaborate with each other. You can always seek a second opinion but everything is so standard. We have general medical insurance that resembles the one they have in Canada. I asked him why he is not ordering Taxotere and he said that it is concidered to be too toxic for my case. AC is out of picture because they want to start with Herceptin at once. But still I am grade 3 and it is pretty aggressive. No scans until symptomatic, according to him they may as well not show anything that is visible. No CA 27-29 or any other tumor markers because they find those inconclusive. I tried to tell him that different testing and scanning are idely used in US but he told me they don't have higher survival rates in US do they? Overall I am so distressed because they cannot give any answers except that yes, the recurrence statistics is approx 25%, lymph mode negative is a good thing but it may spread through the blood. This is all I got. What do you think? I need every piece of advice, thank you in advance, Cherry

Hi fluffqueen!

Good to hear from you. I recently had to switch MOs, too. (Long story.) I now have the youngest MO in the practice; she seems OK. She has me pegged to doing AIs for 10 years. The day-to-day side effects are bearable, but after two years, I have full-blown osteoporosis. Yay. I'm now on Fosamax.

It sounds like your day-to-day side effects are less bearable. If I were diagnosed at Stages I or II, I'm not sure I'd do an AI for 10 years.

Ugh, yes, about the working out! Thankfully, my kids are back to school as of today. I got on the exercise bike this morning for the first time in weeks.

Good luck with selling your house! Yes, house responsibilities can be so onerous.

Hi All,

Any of you notice blurry vision (like you want to rub your eyes)? I've noticed a drop in my eyes and am not sure if it's attributable to Femara (I think I've seen reference to ocular side effects) or Herceptin? I am going to get some eye drops today to see if that works. I'm noticing 'sores' in the corners of my mouth and my nose also goes through cycles of scabbing in the tip. Wondering if all this is related to dryness.

I had wondered if 10 years was the standard now for an AI...I had switched pretty quickly from Tamoxifen to Femara once my ovaries were out.

I am wondering, in cases where there is no node involvement and tumor is not near chest wall, why is lumpectomy and radiation considered a "less aggressive" treatment than mastectomy without rads? They are both treatments, one is not "less" or "more" aggressive than the other. To me, losing my breast is "less" aggressive than radiating my body. Why don't doctors always explain both options? Why do doctors think they should make these choices for us? Why aren't we always given all the options and encouraged to make the choice that is best for us?

I work with a woman who had DCIS 9 years ago. The only treatment recommended for her was lx and rads, which she did. She continued to have areas of concern throughout the years and finally asked if she could have a double mx since she was tired of all the scares and biopsies. She recently had the mx, but is having trouble with reconstruction on the side that was radiated, and this is nine years later. She said that at the time she had the lx, she wasn't told that she could skip rads if she had the mx. She said the mx was no big deal to her and she definitely would have opted for that over the lx with rads, had she been given that option.

I have talked to many women who went the lx/rads route without being told that an mx might spare them from needing rads. I think both options should be thoroughly explained and it is the patients right to choose.

Thanks, BJI...I was done chemo late October, but have still got 2 Herceptin treatments left. I noticed the eye blurring moreso over the past month.

I will try all the drops you mention - thanks!

Re: prunes...wow. That's a lot of prunes. If we buy the juice, I wonder how many cups that is? I don't mind drinking a glass a day...

You are right, Elaine Therese, there is always a chance a positive node could be found and rads would be recommended anyway, but there are many instances when it is almost certain an mx would mean no rads, and that, I don't think, is properly presented to many patients.

I've heard too many women say "my doctor said I didn't need an mx, that would be too aggressive". That's what I have an issue with, the doctor making the decision. Perhaps, if they knew their options some would prefer to skip rads, for whatever personal reasons. For women who have no desire to reconstruct, in my opinion, the mx is the LESS aggressive treatment over lx/rads.