TRIPLE POSITIVE GROUP
Comments
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Sol, CONGRATULATIONS! LAST TX, RING THAT BELL! So happy for you.
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Speed reading to catch up.
Lee I went through all those 'os's' except that my initial biopsy was HER-. It was after my surgery biopsy that it changed to HER+. What a let down at the time but thank G-d for Herceptin.
PBrain I had neulasta and still ended up hospitalized twice while doing AC. No neulasta with Taxol and counts were low but not serious.
Peggy0 -
Have been trying to catch up on all the posts. Been away for a while and now feel a little out the loop. Fast moving thread.
Congrats Iago on port removal. What a relief for you or had ya kinda got used to it?
Update on my LE. Now wearing a sleeve but dont need to wear it all day. Last check and the swelling has reduced. Left arm now 6% bigger than right arm. Have adjusted very well despite being on a major downer initially. I suppose its because my LE is only mild at the moment. I am not wearing a hand gauntlet, maybe I should be. No signs in my hand yet.
On friends: Can relate to those trying to help. People honestly do not know what to do for the best. I am meeting a friend from schooldays on Fri but havent seen her in months. It makes me angry because I know she will focus on how Im doing health wise rather than NORMALITY. Rant over.......
Hi and hugs to everyone on various stages of this journey. I am currently trying to support my 34 yr old TN friend who has just learnt she is BRACA 1+ I dont know what to say to her because she is too upset to speak to me and I am a little ignorant of what this news means for her.
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moonflwr I had to be admitted to the hospital and yes I got twilight… which for me means I'm out cold. I've had it in for just over 2 years. I'm glad I got it out because right now I don't know if I'll be going to the same place because of my insurance not renewing the contract with this place as of 2013. My port surgeon is the nicest guy and actually his scars look better than my PS scars
Linda no job at ACS but maybe in the future.
Jennt don't worry about the scan until you get the results. Like your onc said it could just be from Tamoxifen. Usually the brain is the last place it shows up if you have mets.
My port really didn't bother me. I only felt it at times. Just a PITA to have it flushed every 3 months. Also it did show with many of the shirts I wore in the summer. I really didn't care but if I was going in for an interview I would have to hide it somehow.
Wouldn't it be cool if I could get letters of recommendation from you guys. I'd have binders of women
(Sorry I just couldn't resist that one).0 -
Jenn-you are on my mind. Lots of positive thoughts and prayers coming your way.
Thanks to everyone for all of your support. I am up and moving around.
Wow! Drains suck!0 -
Yay Jenn404. I hope your drains come out in a week like mine did. How many do you have? I only had 2. Take it easy. You'll be very tired for a while. Just your body healing takes lots of energy. Don't over due it or you'll be sporting those drains longer.
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Soltantio....I will be taking Adria/cytoxan, followed by 12 taxols. I'm not sure, but I think Herceptin will follow those. Radiation somewhere in the mix after chemo. I'm her2 neu- but the trial is to determine if women with low her 2 can benefit from Herceptin as well.
I had single mx on oct. 22. Doing great except for lack of appetite, which believe me, I can stand a whole lot more of that. I've lost 7 pounds between Friday -Tuesday.
I'm just wondering if the benefits of Herceptin are worth the SEs.
Blessings
Paula0 -
Soteria they won't be giving you Adriamycin and Herceptin at the same time. Both can have heart issues. I would read up on this. Adriamycin can have heart risk that can remain long after being off it. This could be the same with Herceptin (some studies say yes) but the drug is too new to be sure. You must ask these questions of your onc and if your age is a plus or minus.
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Wow....This has been an eventful few days. I can't even begin to comment on these past fews days posts except to be amazed at our brave new world of communication and how this can all help those who follow. We now have our fellow journeyladies reporting from pre op and post surg in REAL TIME!
Congrats on all the milestones reached and best wishes to those who are facing the frightening waits and hopefully minor crises that seem to be inevitable as we move along in our treatment.0 -
Congrats Lago on the deportation and to Solt on last chemo!!!
Jennt - hugs to you! Having just gone through a scare with the liver where the doc wrote "high risk breast cancer" on my sheet definitely gave me the same creeped out feeling. They have to pen it in the most nefarious way in order to get insurance approval (at least that's how it works over here).
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Congrats Lago (port removal) Sol (last chemo ) and Shore (last herceptin). This thread moves so fast it is hard to keep up.
Lee - thinking of you,prayers that all went well yesterday.
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Sol- yayyyyy! Congrats! And thanks for the kind words too. Stupid water keeps coming out my eyes and can't stop it. Stupid tears. Chemo mood stinks too.
((Jenn)) and ((Rozem))
Okay, scar tissue under left arm feels like a knot. PT said gentle racking motion over it and arm exercises. Thoughts? They went back in twice at this sight. First time sentinel node, second time- ALND.0 -
Congrats Lago, Solt, and others on the MILESTONES!!
During cancer tx life became a dance from one milestone to another. Like watching my feet while walking.
However, I can report over a year out, my vision has moved up and out. There are days at a time I don't even think about BC in terms of myself. Now when I think about it, it's in the context of this site. So life does move on.
Bren,
Wow. 1" lymph? Have you had a PET scan yet? Please keep us posted. Your case is unique, as I've mentioned before, and I'd personally like the information on tx. Just in case
Pbrain,
Um, this isn't very charitable..but regarding people who want to help. When I was dxed. It amazed me how friends backed off, and people I barely knew, met once or twice at events/functions, stepped up.
I don't like anyone helping me though. Unless of course I need it. I didn't go bald out in public for the same reason. To ME, it screams..."I have cancer. Feel sorry for me!" Even if the woman's intent is not sympathy simply comfort, sympathy is what she'll get. So knowing that, I couldn't go out bald. I can't stand sympathy. It just pisses me off.
But that's me.
During tx (here's the uncharitable part) I saw breast cancer "groupies." I define a cancer groupie as someone who: barely knows me, generally knows no one close to them with breast cancer, walks every year in Oct, and wears pink to SUPPORT BC and has tons of BC paraphernalia, and shows up at things that make actual BC survivors wonder...Why is she here?
Essentially women who use BC as a "cause" without any real motivation to do so outside the fact it is the "cool" cause at the moment.
For instance. One woman comes to our BC survivors group (call her A). She started coming 5 years before with a friend (which is nice). She never had BC, and only knew one person, the friend who brought her, to the group.
The friend stopped coming and moved on with life. In fact, moved out of state. A, despite knowing NO ONE in the group, continued to come. She knows NOTHING of BC tx, contributes in no way to the group.. She just shows up. Oh, and has about 9 pink ribbons on the back of her car, and tons of t-shirt slogans about ta-tas, pink ribbons, etc
So I asked her......Are you active in a local BC arm of research, financial support? Are you in the medical community?
Nope. Nadda.
And yet, every month, there she is.
I don't understand it. It seems a perverted type of voyeurism to me. And because the women in my group are nice pleasant people, they ask her about herself and her kids, grand-kids.
It's bizarre.
I don't even know how to speak to her. We meet to discuss BC, the latest studies, tx problems, offer support, and she contributes nothing to that.
She did say, when I asked, that it was kinda a habit to come.
Um, ok.
I think that's weird.
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Hey, you guys can't all be getting done with chemo if I'm just starting! Not fair!!
Sol, seriously, congratulations! I can't wait to be in your shoes! Jenn, you are going to be just fine. I just know it. We take so much crap, of course we have headaches! Hang in there and take a nice nap in the machine (unless you are a claustrophobe like me, and then take a giant xanax!)
Jen, glad to see you're up and wandering around. Kitchenella, I'm praying for a germ-free bubble to surround me all Winter. Jackboo, I can absolutely relate to what you are saying. I find some people just want to hover around the "sick" one. I'm starting to sort of regret telling people I even have this...
And Lago, you absolutely crack me up!! I want to be in your binder
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Tonlee..
Was thinking the same when I just read Pbrain's post. I was disappointed in many people I once considered close friends and some family and their reaction to my dx. I never needed or wanted physical help but real friendship and concern came from the most surprising sources!
Btw...congrats on 2 years NED! You never mentionned it at the time. That's a biggie.
Think that woman is lonely.0 -
TonLee, you hit on some things that really speak to me! I did have a lot of my closer friends back off, my sisters have too a little bit. It's strange, but I understand that they are scared for me and for themselves.
I'm like you, sympathy makes me seriously annoyed. Kindness and just being there for me means the world to me, but don't hover over me like a vulture. And I too know an odd BC groupie (great term!) She was actually interviewed by our local news channel as a breast cancer survivor after our city's BC walk, but here is her story. She goes to some quacko doctor on the north side of the city and he ran the BCRA 1 and 2 test on her, even though our insurance won't cover it unless you have cancer. She came out positive for one of the mutations, so she had an elective BMX. I think she just wanted the reconstruction done. She has big, perky boobs now.
This lady is in her mid-60's. Seriously, if she was that prone to BC wouldn't she have had it by now? All good, it was her choice and I've never said anything to her about it, but she walks around covered in ribbons and talking about saving Ta Tas and she even sends out some sappy email every year talking about her BC experience and trying to raise money for ACS. She didn't have BC...WTF?
I'm like you, this is one club I had no desire to join and these hanger ons give me the creeps.
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Munchausen syndrome?
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Btw...
For the first time I was awake when they wheeled me into the OR for port removal. It was interesting to see what it looked like. Lots of what appeared to be clean laundry piled up around the place. Looked like a laundry room!0 -
Good call Ashla! They might also be lonely. Or maybe they had someone close to them go through this?
Did any if you start your period right after chemo? I started this morning. Called my mo and he said he didn't think it was a big deal?0 -
Morning Jenn...
Other than the period, how are you holding up? Can't catch up on the thread yet.0 -
Jenn28 and Special K...
I agree with Special K...seeing in writing what we all face with every new SE is chilling. That's what all of us would be thinking.
Thankfully your mo is not taking chances and is checking it out...and immediately. There are many of us here who have had to fight to get tested for worrisome SE's.
The odds are in your favor for a negative CT!0 -
Jenn,
I started my period pretty quick after chemo. My Onc also didn't think it was a big deal. So I posed this question:
"My cancer was highly ER+. You didn't think my periods would come back and they did. How do we know that Tamoxifen is beating my naturally high estrogen to any remaining cancer? Is there a study, some sort of proof?"
He said: "The proof is your cancer doesn't come back."
I said: "And if it does?"
Him: "Then Tamoxifen didn't work for you."
Ouch! Too big a risk in my opinion...so I researched and discovered women whose periods come back after chemo, who are ER+, benefit by up to 30% (reduces recurrence and death) with an Ooph or getting Lupron (chemically shutting down the ovaries) than women whose periods come back, are ER+, and on Tamoxifen (linked back in this thread a couple times, most of the studies are from asia and have a few method flaws, but I consider them to be good.) Also I've seen reports that Tamoxifen doesn't work for everyone.
That was way too big a chance for me considering all I'd done to get rid of it.
However, that was MY decision. Had I been in my 30's I may have opted to keep my ovaries because of all the health risks associated with losing them. So, an Ooph isn't for everyone.
And I've heard some Oncs really discourage them. Not based on any type studies, but preference.
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TonLee, I did have a PET scan and nothing else showed up, thankfully. In addition to the MRI and PET, I have also had a bunch of blood work done, an ultrasound of my uterus and overies (just to be sure). I saw my nutritionist last night who said most of my numbers (blood, urine, saliva) look good. Meaning that nothing was elevated that would indicate cancer in the bones, liver, etc. My WBC is a little low but has been for many years. She has been working with cancer patients for decades and is committed to helping me stay as healthy as possible thru this. I am starting to get the idea that my situation is not falling into the "normal" category, even though none of the docs has said it outright.
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Thanks Solt, I think I'll be ok too...just kind of not feeling like a happy puppy for a few months! I'm thrilled to hear your cast iron pan is out and working. My poor father had hemachromatosis (genetic disposition to absorbing too much iron). He didn't get diagnosed until he was in his 60's and he was turning bronze! The poor guy was "head chef and bottle washer" in our house and he always cooked in cast iron. His nutritionist told him at this diagnosis that that was the richest source of iron in the world! He had to buy no-stick pans and he just wasn't the same after that. He said his cast iron made him feel like a cowboy out under the stars
Ok, question. I took my first steroid pill this morning. I feel ok, but I have low-level trembling. Is that weird?
Man, you'd think I would know this stuff, but I'm clueless in the cancer world...
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Jenn I found most of my friends helpful but my sister insisted she come out and help. Initially I said no because she would get nasty every time I would talk about the "plan b". I wanted to know what plan b was just in case this didn't work. She would say I was being negative blah blah blah. At one point she even said something like "this isn't all about you. It effects others too." Anyway I broke down and let her come. She arrived 2 days post BMX. She wasn't much help, actually was driving my DH and I crazy. Nicely asked for her to leave early. I think she was pissed about that. Finally 1 week post BMX I kicked her out for being so verbally abusive that I almost called the cops… I was scared and hid in my room. That was over 2 years ago. Since then I've been through chemo, shingles several reconstructions surgeries… and haven't spoken. I do believe she is waiting for an apology. This is my older sister (2.5 years) with a PhD & MA in Social work from the U of Chicago.
You'd think she'd know better. BTW my husband as called a few times including when I was on chemo and asked her to put an end to this and call. She said she would and never did.Anyway my point is if your gut says to say "no thank you", stick with it.
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Bren 58,
So what are you thinking it is that takes you out of the " normal" category? Your PET was clean. Could it be that there are multiple ways to treat you and that it is very complex? My MO told me honestly that when things get more complex he seeks out advice from multiple trusted sources on ways to proceed.0 -
Sol - congrats on your last big Chemo!!!!
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Lago, so sorry for the rift with your sister. I had to laugh when I saw she was a highly educated scholar of all things social. Ivory tower peeps just don't always get it. I'm sorry you had to go through that at such a rough time. I think in so many ways our situations bring out the super uncool in some people.
I had someone comment that it isn't all about me too, but she was being funny and snarky because I was complaining about no coffee on surgery day. It was almost like she was thinking "what's the most inappropriate thing I can say that will just make her laugh out loud" and I did when she posted on Facebook--it's not all about you, you know. How about the other people who have to be around you after you've had no coffee? This was nestled in with all the sweet "we are praying for you" comments. She is a serious hoot that lady.
And I've had the plan B talk with the chemo nurse who gave me instructions on a living will and power of attorney. These are things you have to be an idiot not to think about.
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It just takes a few hours to be behind on this forum!
Lago - that's so sad about your sister, and how in the world did she get a degree in social work - YIKES! I was so lucky, between my husband and grown daughters (one was 17 and still living at home), I had an awesome support system. My mom wanted to be more involved, but she would have driven me nuts, I was able to placate her, make her feel good, and less worried, and she handled (and still does) it all by buying me hats, scarves, camisoles, earrings!!! It was hard to talke to her though because it became all about her - "you shouldn't have to watch your children go through this", "your children shouldn't die before you", "your dad and I sit by the phone crying, just waiting for a call from you, we can't call you becaue it's so awful for you and we don't want to bother you".. Ended up by calling her right after each TX on the way home, I'd lose cell phone signal about 10 minutes from chemo, that way she knew I was OK, then DH or DD's would call her in a couple of days and tell her I was fine. Crazy way to get through chemo
People would call and ask my DH or DD if we needed anything, so they made it easy for me.
I'm always into plan B too Lago - it makes me feel more in control, and I think that I actually worry less, knowing there is a plan B.
Pbrain - the steroids can make you shaky and sleepless - the first time was the worst for me with the steriods. After that I'd take an ativan the night before chemo so that I could get a little sleep, but it's a great time to read, watch some TV, clean the drawers, etc... I wouldn't have been able to sleep anyway. Good Luck - it wasn't near as scary or as bad as I thought it would be, it was different than I expected. The weird part is that it starts to be "normal" after a bit, particularly if you're getting herceptin too, because it's more than just the 6 treatments.
Hope you all have a great day! I'm off to my literary club!!! One of the joys of staying home again.
Linda
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ashla, I guess it is because I went thru the BMX and recon 12 years ago and now I am coming back and doing the chemo, ALND and probably rads too. I don't think BC docs see many like me walk thru their doors on a regular basis.
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