TRIPLE POSITIVE GROUP
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Hi Everyone,
I'm new to this forum. I just had a lumpectomy on the 19th and I'm supposed to start a regimine of chemo and herceptine sometime in the next month, once healed. Can anyone let me know how they decided whether or not to go through this? I'm really concerned about the long-term effects of these drugs, but don't want to risk not doing it either.
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My treatment plan was determined by discussing all the options with my oncologist. My current health was a factor as to which chemo route we took, and my diagnosis was the deciding factor as to what path I am currently on. Aggressive treatment for an aggressive cancer. I am at the stage of treatment where my DH is bringing me in and I feel like kicking and screaming my way out of the stinkin' BGC. Trying to finish Taxol, had to skip 2 doses due to SE's, but trying to get in as many of the 12 as possible.
I am tolerating the Herceptin fine. Will start tamoxifen and radiation once my taxol is done, 3 more weeks. Throwing everything at this.
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Pbrain I can be done both ways. I was knocked out with a local. I'm glad too because I guess mine was stuck a bit. I did have it in for 2 years and we know that I have no fat from the belly button up so I guess that's why it got stuck.
efcjax It is bases on some any things. Breast cancer is more than one disease. Being that your are HER2+ (I'm assuming since you are posting here) you get chemo and Herceptin (unless your tumor is really tiny) and probably one other drug for sure as well as some kind of endocrine therapy. Also based on tumor size, grade, lymph node status, number of tumors, age, family history and a bunch of other stuff. Ask your oncologist for more information on why. Remember you are paying for his/her service. They are there to explain things to you.
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Sorry but this is a repeat post. reposting:
Update on Osteoporosis treatment. I saw a rheumatologist today
because the endocrinologist I felt brushed me off. Well my feelings
were correct. The rheumatologist feels I should try Fosamax first even
though I have a history of acid reflux. She said not all her patients
with that history have problems. She also told me that I shouldn't be
lifting (strength training) more than 5lbs over my head! I shouldn't be
doing crunches and avoid bending my spine. I'm not sure if I want to do
that. I use 5, 7 and 10lb weights but mostly 7. She said to stick to 5!
No crunches... then my back will bother me. Not happy and not sure if
I'm willing to give up crunches.0 -
NBI, i did arimidex first, for 6 mos, and did have joint paint, then off a month, and on tamox for four. JOINT PAIN BACK,plus, i got really worried about endometrial ca, esp cause i do have fibroids that never went away after meno, and other things. two month break, and have been on femara for a little over a month now. i am just barely noticing an increase in joint pain, but energy level is still extremely high, so am ecstatic abot that! i do notice more muscle pain, too in legs especially, but still doable. as long as i can do stuff, and have energy, i am fine, but if i find myself no energy, no enthusiasm, no joy, then i WILL stop, and take my chances. a half life to me, is no life at all.
i LOVE Pbrains hair! mine did the same thing, crazy! boyfriend was calling me bozo, said i looked electrified, or scared. so when ever he looked at me, i would open my eyes wide, and mouth, and raise my eyebrows, and cover my mouth with my hands! cracked us up! finally, it is relaxing a bit, but has more body than it ever has, was stick straight, and flat, so i do love it.
they asked me last mo visit, if i wanted my port out. i guess i am just not ready to think about that yet, cause i did get a collapsed lung from port insertion. no fun. and they did tell me that they would use it for colonoscopy drugging, and am also not ready to do that! i am gonna give myself six months away from anything, then, ok. actually, i am pretty surprised they want to take it out, considering my rather late early stage. old BS told me, they were surprised i made it this far. i didnt ask what she meant: without progression? Relapse? what?
i will try to update stats, soon.
RobinLK, what is BGC?
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Lago - flexion-based exercises (where you bend your spine forward) put extra stress on the front of the vertebrae. Because of that, when you have osteoporosis, that extra stress can cause vertebral compression fractures. I tell all my patients with osteoporosis - no crunches and avoid excessive spinal flexion.
If it were me and I had osteoporosis, I would not do crunches.
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wow, lago, five pounds is NOTHING! at least compared to what we used to do! i thought the benefits of exercise outweighed potential harms! i know i like crunches too. is that even WITH fosamax?
NBI, it doesnt say what stage you are?
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Pbrain, I was given the choice of general anesthesia or a local. Both done in an OR setting. I chose the local and was awake the whole time, but didn't fell a thing. Since I usually don't tolerate anesthesia well, this worked out well for me.
efcjax, If you are HER2+, you will probably not get to pass on chemo and Hereptin, as it is the best treatment they have right now to fight it.
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Kathec - Big Girl Chair...chemo recliner.
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Oooh!
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Here is an article written by a physical therapist about exercise and osteoporosis. I would recommend if someone has questions about specific exercises they want to keep doing that they get a PT consult with someone who has taken specific continuing education courses on working with patients with osteoporosis (this is important!).
http://nof.org/files/nof/public/content/resource/310/files/134.pdf
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Looks like our Dx is similar. I haven't gotten the final pathology report, but the biopsy prior to surgery indicated stage 1. Which I'm sure is the best case scenario. Thanks all for following up on my question. Just really nervous about doing the "right" thing.
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Pbrain - I had my port removed in the breast surgeon's office with just a local anesthetic. I didn't feel a thing and chatted the whole time with the doc and nurse. I could easily have gone back to work, but had taken the rest of the day off thinking it would be painful afterwards...it wasn't.
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Thanks guys, I was told it was a pretty simple and easy procedure and that it would be done under a local, so I was amazed by the fact that they want "conscious sedation". Weird. I get pretty nauseated from that crap, so they'd better give me a scopolamine patch. I still, after all I've been through, am not comfortable with too much medication. Lidocaine has been my good friend through all of this. Why make me more drugged out than I need to be?
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Good news everyone, bone scan came back all clear!! Whew!
Kathec, she (right?) was surprised you made it that
far??? Wtf??!! Re the 5 lbs, yes I was told not to lift or
carry more than 10 b/c of risk of lymphedema, and I only had 4 nodes
removed. Did your BS not give you that
memo? I remember getting really
irritated with my BS when he told me that prohibition was permanent and not
just for the first month or so after surgery.
Then I realized how ridiculous it was for me to get irritated with him
about that. Cause that really would have
made a difference in deciding whether to have the tumor removed or not, NOT!Empress Susan, you are a hoot. I bet you are an even bigger riot in
person.Pbrain, I definitely did not need any of that stuff for my
port removal. In fact, I thought I was
having a preop appointment to talk to the surgeon about having my port
removed. Turns out they were ready to
remove it on the spot. I rode my
bike! That wasn’t a concern for them,
but I put it off for another week or so because they wouldn’t let me swim for a
week so I wanted to time it to minimize the amount of disruption.Efcjax, I don’t think there are a lot of us who were
enthusiastic about the idea of chemo, but her2+ cancers can be very
aggressive. For most people, the chemo isn’t
as bad as they feared it would be. Not
exactly fun times but beats the alternative.
I did research it a lot myself to increase my comfort level about the
whole thing and I definitely recommend you do that so your are comfortable with whatever you choose.Notbuyingit, you don’t say what stage you are, and also how
er/pr+ you are re the tamox. I am
virtually 100% er/pr so the tamox is a no brainer for me. If you are only slightly er/pr+ it might make
more sense. But not everyone has that
problem so you might see how it goes.I have also noticed that lipoic acid seems to help with the
creakiness.
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Congrats Cypher! Thanks for the reply. Hearing from all of you does help. I meet again with my onc next week to make the final decisions on treatment. Wish me luck.
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pbrain. I kept my port. I was going to get it out then realized I'm still getting Magnesium every 1-2 months. So i kept it. If they take it out im supposed to have it in OR or interventional Radioghphy. Because I also have a pacemaker on my left and the port is on the right and kinda crosses over the same spots. They want to watch it come out. I was gonna have it done in my exchange for one less scar but the onco nurses convinced me it was in my own best interest to keep it. I have to say since I get my blood tested every 6 weeks for magnesium anyway I get it flushed without anymore trips and when I end up with a mag IV I'm already popped open. LOL
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Great news Cypher!!!
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PBrain - love your new avatar but must say I miss the alien hat LOL.
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PBrain: Mine came out in the office with just a shot of lidocaine. Extremely fast and simple. You might want to chat with them about it. I remember being SOOO nervous and my husband came along because I was so afraid and felt so silly afterwards. Good luck on whatever upi decide.
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PBrain - here in Australia we have to have a full anesthetic to get a port out!
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Yes! for cypher getting a clear bone scan. Relief! wtf is what i said silently to myself- b.s. is full of b.s. i am in the middle of doing a grievance process against her for more serious reasons than that, and so kept my lip zipped. i already have a new one. plus the old, and you are right it is a her, was in denial aboult me even having LE for the longest time, and then had the nerve to call me noncompliant. LE therapist does think i do have a pretty good grasp of what is right for me and my big arm.
i miss Pbrains hat, too, always made me smile to see it!
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Cypher that is great news!
dancetrancer thanks for the link. The exercise they show for core strengthening is not all that challenging for me. Also pushing down on my knee when trying to also uses the chest muscles... and I was told that was a no no by my PS because of my implants. I'm really not happy about this right now. No core strengthening is not an option for me.
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lago - you don't find planks challenging? The article says regular and side planks are ok. Of course if you aren't allowed to use pecs i think you will find it hard to do those without some pec recruitment.
So sorry you are being told you have to give up yet another thing you enjoy doing b/c of a side effect from tx. It sucks.
You may want to consider a PT consult so they can design an individualized program for you that minimizes risk to the spine from osteoporosis while not using the pecs significantly to protect your recon.
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YAY Cyper!! YAY! That has to be a huge relief.
Moon, you just helped me understand something. The group that scheduled my port removal (I love my hospital, they call you, not the other way around) is interventional radiology. I had no clue why they would do it, but I know I have a little wire going to what I think is my subscapular artery...at least I can feel it under my skin going to that area. So will a doctor be doing my procedure? I'm so confused. Trisha Anne, thanks for the info. I guess I'll just suck it up and get drugged. yuck.
Thanks Linda! I had to take a pic this weekend for my mother because my hairdresser dyed a blue streak in my hair on Friday and my Ma was horrified -- "Jane Ellen, you're gonna lose your job!". She's in Philly, I'm in Indy, so I had to send a shot. I told her it was mellow. Bet youse guys didn't even notice it ;-) But now I wake up with a blue forehead.
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Lago, do you swim? I used to swim competitively and there are exercises you can do while swimming laps that are fabulous for your core. One that we used to do to train was to do freestyle laps with no kick. You instead propel yourself through the water by using your arms and rotating your hips. I had a belly of steel in those days. sob....I need to go back and at least get the legs and arms in shape but arimidex makes my shoulders ache.
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Yay Cyper!! Great News.
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LOL Pbrain - I noticed the Blue Streak - I was being polite LOL - just in case it was another "se"
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I thought the blue streak was just the way the sun or flash hit your hair...
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Yes patin I too thought it was the light! LOL
Pbrain yes I think your Doctor foes it. I know mine do. But it might be the "baby" doctor Who do it for practice. I know thanswered put my PICC in was a newbie cause I heard the other doc telling her what to do. so when she was told "not yet you have to..." i answered "you have to clean up all the blood so that your patient doesn't freak out"! Cause I could feel it pour down my arm. LOL she took more than five min. To clean it up there was a lot of blood I felt. LOL it really was funny. And you do want them to learn on little things before they try the big ops! LOL
And cypher I don't think I remembered to say congrats to you! So CONGRATULATIONS!
Much love!
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