TRIPLE POSITIVE GROUP
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lago...
Funny you think 22% is low.. I was thinking it was higher than I expected.
Mammaprint is an RNA analysis that looks at 70 genes and you're right age is a factor in this one too.
It seems I'm not that high in Her 2 expression.
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ashla - I had Mammaprint too. I was also in the High group - I think being Her2+ skews that. I did a BMX because even those the overall survival stats are the same for lumpectomy vs mastectomy, the local recurrence rates are not - do you want to do this again? I don't! So I went for a BMX. Also, I see an awful lot of ladies who initially had a lumpectomy later have a MX or BMX. Although I tried to minimize surgery, I ended up in the operating room a lot due to nodes and skin healing issues.
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Thks was perfect timing as I am sitting in the urologist office waiting for him to come in after a kidney xray. I have a stone they monitor on my left, but my ct scan in nkvember showed a small cyst, which he thought was normal. However, in the last three weks my back has been mildly aching on both sides so I am paranoid that the cyst is not a cyst and something bad.
And....the xray echhad to take 2 xrays.
I may need to go back on my anti-anxiety drug.0 -
Hi ladies. Regarding the separation anxiety - I love that term. I does describe what I've been going through off and on since finishing Herceptin last year. When I talked to my onc about it, she said - "You are taking Tamoxifen - you are STILL in active treatment." That is comforting most times. But my anxiety did motivate me to start therapy last month, and it's really helpful. At first I thought it was just a natural reaction, but after several months, I decided I need a little help with it. My naturaopath suggested therapy when I told her how strict I am with food (vegan) after finishing Herceptin - like I needed to build a bigger lifeboat, and I'm really hard on myself about it.
I'm a therapist, and I thought I would be able to handle this stuff with the tools I already have, but you know what they say about the cobblers shoes or whatever that saying is.
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Oh fluffqueen, I'm so sorry for the anxiety ride...gosh I understand!!! Hang in there - it's amazing how our brains can make this all so much better or so much worse for us. Wish I could rewire myself to automatically be one of those minimal worriers...unfortunately, it takes a conscious effort for me to stay positive.
Ashla, I posted on another thread about the mammaprint score indicating if you were high or low risk HER2+:
Identification of a low-risk subgroup of HER-2-positive breast cancer by the 70-gene prognosis signature
This study talks about the oncotype and also about the mammaprint (70 gene-signature) gene test. I found the results/discussion fascinating. It indicates that a mammaprint test may help actually stratify out which HER2 tumors are lower vs higher risk.saralmom - I can relate! For me, I'm realizing so much of this comes down to control. My life has felt totally out of my control since my diagnosis. I've been grasping at whatever I can to get some sense of control back. It's hard when you get one surprise after another, have no control over getting an appt, scheduling, doctors running late, not getting calls back, having to stop exercise, etc., etc. No wonder so many of us become anxiety-ridden, depressed, and angry. I think the diet is the one area we feel some control in, and for some of us, we focus on that to help us feel like we are in control of something!
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saralmom,
Are you saying you have become a fanatic about what you eat post dx? I suppose that's the way you are trying to take control over something that in fact..we have no control over. It's the same with me and my lumpectomy vs BMX back and forth.
All I can tell you is that my dad grew up in Europe during the war, never ate vegetables or salads and for the past 20 years lived on hot dogs, donuts, cookies and other junk food despite all 3 of his children bugging him incessantly.
He died last summer at the age of 91. No heart disease , no cancer and not even a full diabetic
He died of work related COPD and it only flared up just prior to his passing.
Other than good genes which until recently I thought I had inherited and obviously didn't , I attribute his good health to hard physical work all his life and exercise. He was never overweight.
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dance - Thanks for the article - looks really interesting - I am going to read it tonight!0
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THX dancetrancer..
Very interesting article.
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BTW all you post chemo ladies look great in your pics. You and other BC friends give me hope for appearance improvement soo n because although survival is key..it has a huge psychological efffect.
Until treatment I was relatively slim and trim and despite my age still had a waistline and figure. Now I look like a very pale, bald, puffy faced , stuffed sausage.
I found this from Web MD to be true for me.
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Many things contribute to weight gain. One reason for weight gain could be premature menopause brought on by chemotherapy. Menopause makes it easy for you to gain weight. That's because it causes your metabolism to slow down. There is also a change in body composition. Your body gains more body fat and loses lean muscle
A second reason for weight gain during breast cancer is the use of corticosteroids to help with nausea that often occurs with chemotherapy. These types of drugs can cause an increase in your appetite. In addition, they can cause a redistribution of muscle mass from the extremities into the abdominal area as fat.
Normal weight gain involves a gain in both fatty and lean tissue. The weight gain brought on by chemotherapy, though, involves only fat. The loss of lean body mass and the gain of body fat are typical of the normal aging process. A woman having chemotherapy ages the equivalent of 10 years over the course of just one year.
Some research suggests that weight gain is also related to lack of exercise. The drop in the level of physical activity may be due to the fatigue, nausea, and pain that come with breast cancer treatment."
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Left the urologists office. He feels that the right side is a somewhat small kidney stone that did not show up on the ct scan in November, but he also can't say that it isn't a calcification with a blood vessel, but doesn't think it is. That is comforting...and so not helpful. He did say he was more concerned about the bigger one on the left side as if it decides to loosen up, it will be difficult for me to pass it. I have decided to have it blasted in a couple of weeks, if all my docs ok it. At that time, he said they can "manipulate things" (not sure what that means and not sure I want to know) to see the right side for a clearer definition of what it is.
He also went on to tell me that he has never had a single case of kidney cncer being a breast cancer. I told him he needs to read more, and that he just cursed me into being his first, as I have been on the bad side of all the statistics except nodes.
Saralmom...I "de" Pristriq'd myself as I didn't feel I needed it for anxiety and it wasn't helping the hot flashes he prescribed it for. I refuse to restart it just because I can't get past the fact that I won't be getting medicine. I may go talk to someone too, after I get through everything.
I am also trying to get into an her2 vaccine study at Wake Forest so am hoping that will keep my mind on something else, other than every ache and pain. I keep saying that once I get "this thing" fixed, then I will feel better, but something always crops up to worry me again.
Ashla...my picture is pre-bc. I am hoping that my stylist can finally actually create some sort of style when I see him in a couple of weeks. Allt he thin spots are finally hiding my scalp, but I just don't have much in the way of bangs, which I hate. And, I have some waviness around the sides and back, and then on the top, where it is thinner and fine, it is stick straight. I am pretty sure he will have a challenge on his hands!
I did not gain any weight through chemo, or any of my treatments, however, I swear that now I am off pristiq, I have gained five pounds. I am pretty sure it is all due to tamoxifen as it seems to be settling around my belly. I am having my PS suck it out and put if around my foobs.
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dancetrancer and ashla - yes, I have become very strict with food and lots of other potentially toxic things in my environmentafter finishing treatment - and it is for sure some kind of attempt to control my risk of recurrence. So, while in fact I do think the way I'm eating now is best for my overall health, I am very hard on myself emotionally about it - too much pressure about it. And that's the anxiety of it.
fluffqueen - my obgyn recommended lexapro for me, but I'm sticking with therapy for now. And my naturopath gave me some anti anxiety supplements to try too.
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fluff--that sounds like great news! I guess a kidney stone is better than the alternative...
Some anti-depressants interfere with tamoxifin. My onc questions me about what I am taking every time I see him.
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Forgive the ignorance...what is mammaprint? I didnt do an oncotype because with my nodes and her2 that ship hqd sailed.
I have a checkup next week...getting my questions checklist all ready....0 -
And while I am thinking about it...has anyone heard if one AI is better than another for triple pos or her2? I know that I will be coming off tamox and onto one next week.
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geewhiz my onc, who specializes in HER2+ prescribed me Anastrozole. I don't think it matters. My guess was at that time it was the only one that was generic. I think it just went generic or was just about to when I first met with her.
I think the best one is the one that gives your the fewest SE. That's the one that you will continue to take.
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Geewhiz
Mammaprint is an RNA genetic test that is done at DX. See you've been there, done that diagnosis, staging stuff already . Hope all is great at your checkup.0 -
ashla - so true what you said about not wanting to look at your breasts. When my breast surgeon asked me why i was considering a bmx i told him i felt like i was "sleeping with the enemy"
lago -i never had a mammaprint that i can remember seeing, maybe this is done only in the US? does it matter at this point? so the same prognosis stats for grade 3 similar size tumour, no nodes her2 is still different for ashla and I???
saralmom- i went to see a nautropath aswell, i don't know if I can follow everything she told me (make your own almond milk anyone???) but i will try to adhere to the big ones; little to no red meat, no dairy, no sugar, refined/packaged food, caffeine (ok maybe just a cup o jo in the morning), plant based diet etc...
fluff - im sure its just a stone! but i know how we worry about every damn ache
as for looking good while in treatment, last week my DH had a work thing and i have not been attending much lately b/c i feel so ugly. He really wanted me to go so i put the wig on, did my brows as best i could, had a friend put on some eyelashes, put all the makeup on and painted my nails OPI dark brown since they are black from chemo -it took me half the day to get it together!!!!! i used to get ready in a half an hour!!!!!!!
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Rozem I didn't have a mammaprint. Yes the stats can be different because of age and your personal health issues (or non issues), family history and probably a host of other things we just don't know. I know when my onc gave me my stats she did mention this was for women with my pathology and age. I'm not sure what else was included.
I believe this was from adjuvent online or some tool like that.
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just a quick question - for those of you who are pre-menopausal is there anything other than tamoxifen to take?
also - i know this issue has been covered somewhere on these boards but i have asked 2 oncs and they have said that they do not use the metabolizer test for tamox - has anyone had this done ?
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Rozem I have read the test isn't thought to be that reliable. Other options is Luprin shots so you can take an AI or surgery (which to me is a bit over treatment unless you are BRCA+).
I was peri, age 49 when I went through chemo. My mom started menopaus at age 51. My sister finished as age 53. Given my family history my onc felt my cycles would not come back so she put me on Anastrozole and monitored me for several months with blood tests to be sure. I've been on Anastrozole for a year now. My last period was 2 weeks before chemo. I also have some stiffness from Anastrozole so I know it is working.
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rozem - Mammaprint is available world-wide, actually I believe that it was begun in Holland. It is not as well known as oncotype dx, but my BS has worked on some studies with them so I had one at his request. It is a genetic assay, and he believes that it will help guide customized treatment in the future.
Today I had a MO appt., had my port flushed, and received a Prolia injection since my osteopenia has worsened on the AI. Also scheduling a PET for next week, and got a scrip for my final echocardiogram to be done after exchange. They are really hard to do with giant TE's in place! Then I had a routine appt. with my BS, and we discussed what the PS can do about nipple symmetry when I exchange for implants next week. Also discussed de-porting - he recommends keeping it for a while. Then I went over and did my pre-op for surgery - what a day! It is a good thing all these offices are right next to each other!
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special k - do they do routine PET scans there? i have never had one and no one has mentioned any for follow up care
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Rozem There is huge variance on the PET scans. I was given one at the time of chemo as a "baseline" but I think it was essentially a staging tool to rule out mets. I was told this week at my first followup that there will be no more scans unless I have symptoms that warrant one (just mammos because I had a lumpectomy). I'm good with that but I'm glad I had at least one. Having said that, even PET scans are not perfect-they often miss lesions/tumors smaller than 1 cm. I know that other women have never had a PET scan at all and others have had several-depends on the MO.0
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rozem and dragonfly...
I had this conversation with my bs yesterday. I have not had a pet scan either. My mo doesn't seem to do them . Is the theory that if there's mets, finding it at the point where it's visible on the scan doesn't increase the survival rate substantially?
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rozem - my MO likes to scan and test, but many do not. He also does tumor markers at least quarterly, as well as CEA, CMP and Vitamin D. I also had two positive nodes so they needed to scan prior to chemo to properly stage me for treatment purposes. I also had a scan just after chemo ended, and this one is ostensibly for a port removal decision. The timing of this one is also because I had so much surgery prior to chemo that it may have obscured anything that would "light up" because of all the trauma in the chest. They are trying to squeeze this one in prior to my surgery next Friday because otherwise I would have to wait until the inflammation from that one dies down again. Both of the scans I had done comment on an unclear picture in the chest area - I have not had surgery since July so this is the longest margin of time since a surgery! Also I cannot have an MRI right now because of the tissue expanders and port, so this is the only imaging I can do after BMX which was Nov. of '10.
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My mo says scanning or checking tumor markers will not increase overall survival and sometimes can lead to more stress. He will scan if/when I have symptoms. I have only had a head CT because I was having headaches and dizziness (from dehydration). (I am stage 1, grade 3).
But there are alot of posters here who have had the scans. I might be the minority.
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Scans make me have less stress, but we all react to them differently. Then again, maybe they stress me less because so far the PET have all been clear. Mammo and MRI were both useless for me - missed the cancer, the ADH/ALH and both nodes.
Also - this fun note - MO wants me to have a colonoscopy. It has been 5 years since my last one, so bring on the good times, yeah!
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Ashla, that is what I've have been told. My new MO has ordered one for me, primarily I think because he knows I'm about to lose my mind worrying, and he wants to give me peace of mind (one way or the other). He acknowledged that he does not run them on everyone. I go in tomorrow morning for it. Interesting the prep - not allowed to have anything to eat other than protein after 5 p.m. on tonight. Nothing but black coffee or water in the morning. I'm guessing this is because they inject you with radioactive sugar, and they don't want any other sugar from your diet influencing the test.
I have mixed feelings about getting the PET. I'll be happy and relieved, of course, if it shows nothing. However, since false positives happen, this could lead me to more needless worry. I suspect my MO is pretty confident nothing will be seen (since my risk is low), and he truly wants to give me peace of mind. He has additional training in psychiatry, which is a bonus as he really seemed to hone in on the mental stress this has caused me.
Although I will add that I did report an unusual pain under my ribs on the R lower side followed by coughing the day before I saw my new MO. So that may have raised his suspicion level a bit. The pain has never occurred again, so I doubt truly that it was anything.
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"
FDA has granted priority review to pertuzumab (Genentech, a member of the Roche Group) in combination with trastuzumbab (Herceptin, Genentech) and docetaxel chemotherapy for certain breast-cancer patients.
The treatment is aimed at patients with HER2-positive metastatic or locally recurrent, unresectable breast cancer who have not received previous treatment or whose disease has relapsed after adjuvant therapy.
FDA confirmed the action date is June 8.
"We have been researching HER2-positive breast cancer for more than 30 years, and we hope an expedited review will help us quickly bring another personalized medicine to people battling this aggressive disease," Hal Barron, MD, chief medical officer and head, Genentech Global Product Development, said in a company press release.
The pertuzumab application is based on results from the pivotal phase 3 CLEOPATRA study. The study demonstrated a 6.1-month improvement in median progression-free survival (PFS) for people who received a pertuzumab-based regimen (pertuzumab combined with Herceptin and docetaxel chemotherapy) compared to those who received Herceptin and chemotherapy alone (median PFS 18.5 vs 12.4 months). People who received the combination also experienced a 38% reduction in the risk of their disease worsening or death (HR=0.62; P<.0001, according to independent review).
Adverse events (AEs) were consistent with those seen in previous studies of pertuzumab and Herceptin, either in combination or alone. Rates of Grade 3 or higher AEs with more than 2% difference between arms were observed for neutropenia (low white blood cell count), febrile neutropenia (fever plus low white blood cell count) and diarrhea with 48.9%, 13.8%, and 7.9% in the pertuzumab, Herceptin and chemotherapy arm compared with 45.8%, 7.6%, and 5% in the Herceptin plus chemotherapy arm, respectively.
The pertuzumab-based regimen was not associated with a higher incidence of cardiac AEs or left ventricular dysfunction compared with Herceptin and chemotherapy. Left ventricular dysfunction occurred in 8.3% of people in the Herceptin and chemotherapy arm and 4.4% of people in the pertuzumab, Herceptin, and chemotherapy arm.
Pertuzumab is a humanized monoclonal antibody being studied in early and advanced stages of HER2-positive breast cancer and advanced HER2-positive gastric cancer. The HER2 dimerization inhibitor is unique in that it is designed specifically to prevent the HER2 receptor from pairing (dimerizing) with other HER receptors (EGFR/HER1, HER3, and HER4), a process that is believed to play a critical role in the growth and formation of several different cancer types.
By preventing receptor pairing, pertuzumab is thought to block cell signaling, which may inhibit cancer cell growth or lead to the death of the cancer cell. Binding of pertuzumab to HER2 may also signal the body's immune system to destroy the cancer cells."
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Wendyspet.
Mine feels precisely the same way. I still think maybe a baseline one early in the process might be a good idea. After that..I might just wait for symptoms and try to live my life the best way I know how to stay healthy.
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