TRIPLE POSITIVE GROUP
Comments
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Ms. Tori I don't know the answer to the antioxidants. I know my PS kept telling me to eat blueberries (I had blueberries).
Pbrain I too found it so hard to tell my mom. I was telling a friend this the other day and I started to tear up. I'm not the crying type. Granted this first part you're going through is the worst. I did cry several times like I never cried before. Scared shit-less. I wasn't afraid of dying… just afraid of pain and never feeling as good as I did… but as soon as I had surgery (my first treatment) I stopped crying. The weight was lifted and the cancer was out of me (even though I still had to do chemo). BTW I did a BMX and never took a pain pill, not even Tylenol. Hell I never took any narcotics (tried once for shingles but that's another story). I never knew I had a high tolerance to pain but to be honest I was just sore.
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Hi and welcome PBrain. Yes, the initial phase is the TOUGHEST. All the waiting is horrible but as others have said, once you begin treatment, the path is clear and you begin to see the light at the end of the tunnel.
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I just can't remember names. I was never good at that but now it's to the point where I say the name and 5 minutes later I can't remember the name. I never really had chemo brain so I'm blaming it on chemopause.
I do take Acetyl-L-Carnitine. It's a memory booster and I swear it works… usually these things don't work for me. I stock up in April and September because it's buy 1 get 1 @ 1/2 price (BOGO)
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Welcome Pbrain! Sorry you're here, glad you found us!
I think crying, shouting, moaning, (ha) whatever makes you feel better....you should do it.
I'm not a person who cries easily (Can't even remember the last time!)....but my grief manifested itself in other ways. I became hyper focused on research and a little ~ahem~ over-bearing when it came to decision making. Oh who am I kidding. That last one is pretty much normal
Right now it may feel like life is over. And life as you knew it IS. I think you have EVERY RIGHT TO MOURN ITS PASSING!
But, you know what? Learning to live with a cancer diagnosis, breast cancer especially, isn't necessarily an automatic death sentence. We're here to help in anyway we can. Please USE US!
(That just looks wrong written down doesn't it...buwahahahah)
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Thanks for the welcomes guys! I'm such a doofus, I've decided the throwing up was because I'm cancer-riddled all over my body and I don't know it yet. I think mentally I'm in a froth, but I am acting very calm. The scary part for me is I live alone and don't know what to do with all the sad, ugly Winter days ahead when I know I'm not going to feel well.
I'm thinking of buying a Kindle and just getting a ton of good books!
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I was in a stupor for the first few weeks from the shock of the diagnosis. I am a cryer and did that for days at a time. I never even considered that I would get breast cancer. We have so many other things that run in the family that I thought one of those would get me. The first person that told me I was courageous and strong, I thought to myself "no, that's not true, I'm a wimp." But I'm here to tell you that even wimps can get through more than they ever thought they could.0
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PBrain...Welcome. I got my diagnosis, cried my eyes out...went to bed, then promptly woke up and threw up. I decided right then and there...I could get busy living, or get busy dying. I got a bit obsessive with research like TonLee says she did, lol...and got nuts with a vegan diet and exercise. I feel better now than I have in awhile. the earliest days are the worst. It gets better!!
SpecialK...thanks for the magnesium link. That definitely makes sense.
Today, at 46 years of age and no period in 3 years....my onc officially declared me no longer menopausal. UGH!! My ovaries are functioning, so he is keeping me on tamoxifen 5 years. I am going to get a little more serious about DIM etc. I think.0 -
I think half of us here on BC.org spent out time researching. So how many times did you google prognosis and get "worse prognosis" when you included HER2+. Seems funny now but in the first few weeks I didn't understand those stats didn't include Herceptin! Hell I didn't even know what Herceptin was… but I did by the time my treatment started.
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Has anyone had lipo in the pit area? I had SNB and BMX with TE. About 6 mo that after exchange, I had minor lipo on the cancer side to even out a pocket of fat tissue. That was 4 weeks ago and the skin in my pit near where the lipo was is still sore and feels lumpy. Does anyone who had had lipo in the pit area or anywhere else know if the lumpyness & soreness is normal? How long can it last? I see doctor next week but of course im freaking out because the lumpiness is in my pit on the cancer side. Could this be a result of lipo??
class='post_sig'>shore1. "It's hard to beat a person who never gives up." -- Babe Ruth.
Dx 6/6/2011, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+Surgery 08/22/2011 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)Chemotherapy 09/21/2011 Adriamycin, Cytoxan, TaxolTargeted Therapy 11/16/2011 HerceptinHormonal Therapy 02/12/2012 Tamoxifen0 -
I had a lump after fat transfer right where my cancer was… but it moved around so I wasn't too worried. I did tell my onc. She felt it and said if my PS didn't know what it was then she wanted me to see my BS. PS confirmed it was just fat. It eventually evened out. I wouldn't be too concerned about lumpiness occuring after lipo but yes it needs to be checked.
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Lago, what do you mean it moved around? I don't feel one particular lump, its just lumpy and so sore. Were you sore after fat transfer? I think being in my armpit its getting irritated too when I exercise, walk, etc.
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Was I sore! OMG I looked like I was beat into a gang. Yes I was sore and all bruised. This is not just a little boo boo on your knee
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Shore, lipo can be lumpy and sometimes that doesn't go away. Look at poor Tara Reid. It is a big insult to the body to suck fat out.
What is a transfer? Is that a TRAM-FLAP?
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What's up with the page?
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Pbrain, welcome to the forum. So sad to hear you will be living alone through this. But remember, the ladies in this thread will be with you all the way. Just remember to just put one foot in front of the other. Your path will clear up in time. So many ladies in front and behind you, too.
Sol, i have chemo brain! Or maybe benzo/emotion-wreck brain! Weeks ago i lost DH's atm with the default PIN written on it! I had to tell him, and he was just really trying to keep it in and cut me some slack. I searched EVERYWHERE, nothing. After a. Few days, it just fell out of my purse, the one i use everyday..
Lago, maybe i will try the acetyl L carnitine. Now that im two weeks PFC, my onc is letting me get some antioxidants. I started having blueberries too for breakfast. I also got the gummy bears for omega 3, like SpecialK. I hope i got the same brand, though, Lil Critters?
Shore1, i got lipo in so many areas but the axilla. My abs and thighs have lumps i regretted the lipo on the thighs, it's been three years now and they're still lumpy, like cellulites. The abs i dont mind since i can hide it. My arms initially were lumpy but they smoothed out after some time, maybe around one year. But the pain and tenderness or even areas of numbness persist for some time, too. Maybe for me around 4-6 months. My DH, who's the anesthesiologist in the cosmetic surgery clinic, says lipo, due to the repeated in and out motion of the cannula, really destroys a lot of our cutaneous nerve endings, some of which are permanently damaged.0 -
Lago, pbrain, bcbarbie - thanks for the replies. I used to think I wanted lipo all over, but it really hurt!
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Kb, I read a lot. Truth during chemo, I couldn't concentrate enough to finish a book. I ended up watching tv all the time. I could read magazines, and newspapers, but couldn't sustain the reading for books. This from a girl who reads about a book a day, as well as newspapers and magazines, every day, almost! I am glad I am getting back, I now can read a book in two or three days. My speed is still there, I just have to break it up! But it is coming back. I also too acetyl L caritine and it did help.
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sduch,
I've read that TCH reduces overall risk of death by 34% vs AC-T, and ACTH reduces overall risk of death by 42% compared to AC-T. So this shows what the addition of Herceptin does to reduce our risk. This is from the BCIRG 006 trial. There was no statistically significant difference in overall survival between the TCH and AC-TH arms. The source for this information is this article:
FDA Approves TCH Combination for HER2-Positive Early Breast Cancer
So that 30 to 40% reduction in death is on top of however much chemo reduces mortality risk...which I think I read somewhere is ~50%, but I can't find that source, so I may be wrong.
Note that these are all relative risk reductions, not absolute. You have to apply the percentage to your personal risk of recurrence to find out how much the treatment reduces your risk. The higher your risk, the more absolute reduction you get from Herceptin. ie. 30% reduction of a 20% recurrence risk (6%) is less than 30% reduction of a 40% (12%) recurrence risk. Hopefully I've got the math right and am explaining this properly.
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Welcome Pbrain and other newbies.
Other than hearing that someone you love has been given the diagnosis of cancer....this is as difficult a challenge as one can face in life. We will likely experience the gamut of emotions in the months and years to come . To make things even worse, alot of them will be the result of enormous hormonal changes resulting from treatment.
I was mostly 'uncomfortably numb' f or the first few months. Let's all give ourselves a whole bunch of slack and compassion on weird unstable emotions. Let it all hang out. People who really care will get it or at least try.0 -
My MUGA dropped from 61% to 53%. Next stop - cardiologist. Ugh. No symptoms. I still had my Herceptin treatment. It was the first after finishing Taxol. Not sure what to expect next.
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Kyab, don't fret too much. Left ventricular ejection fractions are interpreted by human beings with a lot of subjectivity. You're probably trending down, but you are not in the danger zone of heart failure, and you'll bounce back up. Maybe you'll get a nice Herceptin vacation! Keep exercising because that helps the heart's contractility too.
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Hi ladies. I have been having trouble keeping up with this thread, but have read bits and pieces. So busy and so much going on, I have to take the weekend to catch up. I believe I had mentioned to you about two weeks ago that I was having a consult with my onc regarding all of my drugs and what to do going forward. I have been stage 1V, with bone mets since 2001. At that time I thought it was the end of the world, but here I am 11 years later and still working, still working out and living my life pain free with hair. We're hoping that it continues in the same way, with just having to change the drugs periodically. Interesting development that I thought some of you ladies might be interested in. I am currently on Herceptin/Perjeta as well as Afinitor, Aromisin, Tamoxifin and Tykerb/Xeloda. Not too difficult, but I have to say that the addition of the Perjeta was probably the worst part of it, with all of the big D, but even that is getting better. In the consult my onc mentioned that he wanted me to get a Her2nu Elisa blood test. This tests the Her2nu. I guess it makes sense since I last had my Her2nu checked in 1997 when I was originally diagnosed. The unsettling thing is that he mentioned to me was that when he had my bone mets biopsied two years ago, the Her2nu did not show up in the biopsy, but he assumed that it was still there, and just wasn't in the sample that they took. Also disturbing he didn't tell me then. My guess is he's questioning the value of the perjeta and if it is working since my markers have been stable since beginning the perjeta. Has anyone ever heard of this test? I don't know what to think if they tell me that the Her2nu is now negative. I wonder if that is a good or bad thing. Has anyone ever heard of it becoming negative? I know that ER/PR can change status and many times does when you have mets. Luckily mine is still very positive, so it does give us lots of options. Just wondering if anyone knows anything about this. It's a beautiful day here in NYC, so I am going to see if a little retail therapy brings up my mood. Usually works.
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shore - during chemo the sheet with usernames and passwords disappeared from the shared desk in the study. I went through every file I had touched in the entire file 4-drawer file cabinet. DH was not happy thinking it had been thrown away. I re-created it - changed passwords, etc. It was gone from spring of 2011 until a couple of weeks ago. Turns out it was picked up by HIM and filed in the folder for his car. I have never touched that file in my life! I was pretty excited to see it again though!
I also cound not read anything other than a magazine during chemo but found that this improved quite a bit after I went to Herceptin alone. I brought my NOOK to those appts. because I asked for Herceptin over 90 minutes.
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uh-oh - this thread is doing that weird thing again - it just put my (SpecialK) avatar with pearlady's post.
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Had my normal follow-up breast MRI yesterday (they do them on me despite BMX b/c I had close margins multiple places). Doctor just called me personally to say the breasts look fine, but the MRI caught the upper edge of my liver in the pic and an "indeterminant hypotic liver lesion" was seen. She said she really doesn't think it is anything - these "incidental findings" are often seen, and with all the treatment I had and the tiny size of my tumor, it is highly unlikely to be METS. However, she said that now that they have seen it, they are obligated to follow-up and do "due diligence", so she wants me to have a contrast enhanced CT of the abdomen/pelvis. They will call to schedule me. Good God. And I was just trying to move forward and get the cancer recurrence demons out of my head. I know Lago you had these things followed for years, and they didn't have anything come of it...turned out benign...holding on to that knowledge very tightly. I suspect I will have to have repeats done like you to see if it grows over time, unless they somehow can tell something specific from the first scan. I appreciate any insight you might have for me. I know most of the time these things are benign, trying to focus on that. I know you handled it so well, but you aren't a worrier like me. Ugggh. So hate my type A worry personality!!!
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Dancetrancer I had 3 of those lesions in my liver before chemo. Had another scan after chemo, then another 1 year PFC. Then this last one 1.5 years PFC. No change…and I'm now done with those scans. It sucks but they have to follow up. It's like having a pimple on your liver but unlike your face they can only see it if they scan. Most likely just cysts like mine.
pearlady I do believe HER2+ status can change but not sure. This is a good question for the stage IV threads.
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WTF IS UP WITH THIS FORUM TODAY!!!
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They did breast MRI's prior to chemo and this was never caught then (Aug 2011 and Nov 2011), and I had a PET scan done in March that was clear. So apparently this is something new since chemo. Just doesn't seem possible to be a cancer growth since I've been in treatment since April, so here's to hoping it's a cyst.
And yeah, the forum misalignment is driving me batty!
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cysts come and go all the time. I had 4 after the 2nd scan. Not sure how many I had on the first. But only 3 now, stable, never grew or anything.
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Interesting - thanks Lago!
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