TRIPLE POSITIVE GROUP
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thanks special k! The steroids bloated me and did a number on my skin. Took a long time to recover, and I am just now starting to feel like my old self. So for you ladies that are in the thick of it, it does get better again! Way better
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Laughing Gull My chemo regimen is not the norm, but I started out with dose dense AC / Taxol. That's when they thought I was HER2 Negative. After surgery it was revealed I am actually HER2+ so I am just starting Herceptin/Perjeta this week. I will have CMF chemo combined with Herceptin/Perjeta for 4 cycles and then will finish out the year with just the Herceptin/Perjeta.
Sorry about your experience with the second opinion. Amazing how 'professionals' can be so insensitive. "come back and maybe we can find your CDs?" really? Ugh.
SpecialK and Vicky Thanks for all of your great information. How wonderful for you two to meet and for Vicky to get peace of mind at her second opinion. It's good to know we have a great support system here.
Tresjoli2...Lookin' good!!
Blownaway My hot flashes are more frequent and definitely causing me to flip the covers on and off all night but nowhere near fainting. I be that's scary.
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HapB - It never occurred to me to take my b/p during a hot flash. Guess I could try it
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Hap ... it is the percent of the cancer not returning if I complete ALL treatments (chemo and 5 year estrogen blocker).
Vicky
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Tres. Looking good girl!
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Hap ... it is from my Mammaprint results.
Yes, it is great and I feel fortunate.
Vicky
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I did not know that, Hap.
My MO did the test but only because DH and I insisted.
I had different cancers in each breast (non invasion DCIS, invasive DCIS, and lobular. Both were ER and PR positive. One breast tested HER2 negative and the other HER2 positive.
Vicky
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hap - they generally don’t do a Mammaprint for triple positives because anyone with an invasive component of 5mm or greater will be recommended to have chemo and targeted therapy. The usual purpose of the test is for determining whether chemo is warranted, so from that perspective most oncologists won’t order it since the recommendation is already a given, and often insurance won’t pay for genomic testing when the standard of care from the clinical criteria is already going to include chemo. However, the Mammaprint test is able to be done - unlike OncotypeDx which is not designed for Her2+ patients -and the test can yield important information for the individual, as coach shows. I had Mammaprint one of my biopsy cores way back in 2010 because my surgeon was participating in a trial with Agendia, the lab that does Mammaprint.
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Blownaway,
my psychiatrist gave me Celexa for the hot flushes. it is scary! i’ll see if its effective. she has one breast cancer patient whose response was great....
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Hi girls, haven't posted or even read for a while. So quite a catch up. But good that you all seem to be doing ok, and very interesting discussions going on
Kim cee, I was interested that you have you're herceptin over 60 minutes. Here we do 90, though the manufactures recommend 60 second dose and 30 for subsequent if no reactions occur. Why do you have yours at 60?
My heart function dropped a little from AC ( I have pre-existing cardiac issues stemming from childhood) so herceptin start delayed a week and tamoxifen delayed by a month. Unfortunately my bone density shows severe osteoporosis in spine so arimadex is out for now at least.
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SpecialK, Are you saying that a mammaprint can be done for us even now? Do you suggest that we ask for one? Predict (UK) shows me at 94% five year overall survival rate, I think that's pretty good. It shows 86% ten year overall survival rate.
Vicky, Was your Mammaprint results similar to the Predict (UK) results? Just curious.
Thanks Ladies!
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moody - I am reluctant to take a position on an after-the-fact Mammaprint. The main reason for the the test is a non-issue at this point on the treatment continuum for most of us. Mammaprint does provide subtype info, and recurrence estimate info (mine did not include the recurrence estimate in 2010), but it is an expensive test and if not done prior for determining treatment decisions, such as the addition of Perjeta or a particular chemo regimen, I’m not sure if enough value would be added by doing it at this point. It would be an individual decision based on how you feel any new info would inform future decision making and your state of mind moving forward.
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Hap, Specialk, et.al. I basically begged and pleaded with my MO at JH for a Mammaprint because of my situation, although what I really wanted was the Blueprint results, but to no avail. Perhaps I didn't try hard enough, but I felt as if I had pulled out all the stops. They said they would not order it because it would not change what would have been my treatment plan.
Blah
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Binniebin, that's just me. I am supposed to have the Herceptin over 30 minutes but I tell them to do it over 60 minutes. I can not remember the reason but I read something somewhere that made me do it over 60 minutes. Crazy right? Lol.
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Thanks for the insight SpecialK, as always I appreciate it.
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moody - happy to help
binniebin- Genentech dosing instructions allow for a 90 min first infusion, then subsequent Herceptin infusions can be done anywhere from 30-90 minutes. All of my Herceptin infusions that accompanied chemo were infused over 90 mins, no issues. My first Herceptin only infusion was done over 30 mins and I had intractable hip and leg pain for about a week. Slowed the subsequent infusions to 90 mins, no more pain. Anecdotal at best, but there are enough of usthat this holds true for that makes it worth consideration if you experience discomfort following infusion. Also, on pg 912 of this topic, in several posts, the OP Tonlee offers her thoughts on Herceptin infusion speed and heart damage.
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Moody, I am with SpecialK on the after-the-fact about the Mammaprint. It is expensive and a personal decision.
For me, my MO's percentage was 80% to 85% for non-recurrence. That was not high enough (for me) to do five years of Arimidex. That probably does not make sense but that is how I saw it. I remember telling the Nurse Practitioner this and she was surprised that I considered not taking Arimidex. I reminded her that it was my body and my life. Everything I did to my body was a deliberate choice one step at a time (surgery, then 6 rounds of chemo, hysterectomy, continue with Herceptin ...).
I am also eligible for early Social Security and with his numbers, I would have started SS early. When the Mammaprint came back higher, I was willing to take the Arimidex and delay SS.
Vicky
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Welcome all new members, even though it makes me sad every time I see a new introduction, this diagnosis is so unfair. I am reading all the posts but do not have so much time to post every day like I used to, have to get myself moving in order to lose my 10 extra kg I gained while on chemo. I am 2,5 weeks PFC and yesterday I tried to run, made it to approx 800 m until I got a call from a friend I had to take. I was talking to her and wondering for myself whether I actually was able to run even longer. But I have to admit it still was very hard, I have not been running for over six months.
LaughingGull, I am in Sweden and did extra chemo for my tumor size and stage just to have the peace of mind. When I was comparing all the treatments I red our national guidelines that are based on the latest scientific results where it was stated that in terms of survival weekly Taxol and Taxotere spaced three weeks apart are equal meanwhile weekly Taxol is being less toxic. But Taxotere is often given with Carboplatin and in that case you have another drug added to your treatment. If you have smaller tumor weekly Taxol is the baseline treatment for you. I have to admit reading so many posts about doctors being late sometimes for hours just appalls me since it simply cannot happen here, this country is so punctual. If you are late you have to call and tell people you will be late, no one will wait longer than thirty minutes, it is considered to be so disrespectful. If it ever happens again just go to another doctor, you have enough on your plate so a crappy doctor make you feel even worth.
Tres, that was a lot of hair in a year and what a fabulous color you have, do you dye it or is it your own? I had similar color but I had to dye my hair because it is mostly grey around my face. Very brave of all of you to post pictures, I wouldn't dare though, on the other hand I have no much hair growth to show yet, and what is coming is mostly white. I do have some eyebrows and lashes now, they make me look more or less normal when I wear my wig and my hat.
A question: do you dye your hair and what dye do you/your hairdresser use? I have a lot of grey hair straws since I was thirty, it runs in the family from both sides. There is no way I will go without dying my hair and those organic brands I tried before my diagnosis did not cover my greys, any suggestion anyone?
Regarding vaginal dryness, I have been given Repadina to try by my clinic, it is natriumhyaluronat 10 mg, and prescribed Replens, which is basically a water-based lubricant. This is what they offer here in Europe. I did not try any of them yet, I have almost zero sexual desire and below zero sexual appeal, I would not want to have anything to do with myself when I look into the mirror so why bother. I do not know, maybe it will change when my running gets me back to my initial 65 kg. I am actually willing to try to run my usual track today, doesn't matter if I will not be able to run 3 km, at least I am trying.
Even though I am done with chemo I still feel so blue, because I still have Herceptin, rads and Tamoxifen and no clue whether the treatments worked or not.
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I met with my surgeon today to get the results from my sentinel node biopsy and lumpectomy. I am still considered Stage 1, Grade 1, estrogen and progesterone +, and HER2+. The doctor said again how highly unusual this is. Port placement will be in March. I will have 18 weeks of chemo, followed by 6 weeks of radiation, 5 days a week, with one year of Herceptin given through the port. The mass was 1.3 cms. I have to figure out how to put all of this info into the little block below my posts. She removed two lymph nodes during surgery and both came back cancer-free. Also, the tumor had clean margins. I am so glad that I have found this forum!
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thanks cherry! I throw a few highlight in once or twice a year, but mostly my color. I loved my hair before I got sick. It was thick and long and fabulous. Losing it was extremely painful, so I'm happy to be getting it back...not quite what it was before chemo...but moving in the right direction. This was the night before my lumpectomy. I took the kids to friendlys for ice cream. That is the girl I miss!
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Tres, you boy is so cute) On your latest picture you posted before you look just like the night before your lumpectomy to me, but I know that on inside we will never be the same. I believe I am past the worst shock for now and with the help of my anti-depressives I realized that life had a turn when it never be the same anymore and just like you I miss my pre-cancer self so badly but there is nothing I can do to get it back and just everyone else here I am moving on. But I have to admit that losing my hair was so dramatic, if I knew it I had tried cold capping. I am gulping every time I see myself in the mirror. I hope therapy is working for your little girl, just recalling you posted about her being afraid of you getting ill again. Hugs,Cherry
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tld2017, it looks that your surgery went well and you have a plan. Did they also tell you what KI67% your tumor had and whether there was LVI? I am just curious what KI67 grade 1tumor can have since being Her2 pos usually means highly developed cells that divide very rapidly.
Now when you have your treatment plan ready, how do you feel? Usually it can bring some relief knowing that you are doing something about this bc. Will you be doing weekly Taxol or even AC? Or is it Taxotere and Carboplatin? Both are very effective. Monthly chemo group are starting every month here on BCO, our August chemo group moved to FB and we all grew very fond of each other, these bords are truly a life saver.
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Cherry sw I am triple pos grade 2 and my ki67 is 10 which is pretty low
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wabals, it is pretty low even for grade 2 and for being Her2+ is extremly low. Mine was 50%
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hi Ladies, so i had my first Lipo and fat grafting. Oh my the pain. Anyone else have this done?
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shelabela- yup, multiple times - each day it gets better. After a week or so it felt like I went too hard at the gym or did too many sit-ups I recommend wearing compression in the donor sites, it actually felt better for me.
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specialK.-- they have me in a compression wrap, around that area and one around where they did the grafting. I have 2 of them. Told me to wear it for 6 weeks. How long did you
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Cherry sw Maybe because I was 72 at diagnosis. I think it gets less aggressive with age
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shelabela - I did not compress the graft area as my PS did not want the new fat to be squeezed, he felt that this might compromise fat survivability. I did not have a wrap for compression at the donor site, I had a Spanx-like highwaisted panty with a snap crotch. I wore it for 8 weeks, no gym - only walking and a lifting restriction for the first two weeks. Compression at the donor site is important because the tunnels made by the lipo cannula can fill with fluid and become firm or cause a seroma, just like after mastectomy/lumpectomy.
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Cherry-sw, I don't know any specifics. I have the pathology report but I do not see anything about KI67. What is LVI? I feel so completely unprepared. Is Taxol the chemo? The surgeon said I would have chemo every 3 weeks for 18 weeks. I'm not sure what AC, Taxotere or Carboplatin are.... Wow, this is so much and I feel painfully ignorant. I am so sorry that I can't answer your questions because I feel like I should be able to. I know that I will learn all of this in the coming weeks and I will update as I find out.
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