TRIPLE POSITIVE GROUP
Comments
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Jenn- meh! So much to look forward to. I really hope it's not 10 years. I'm 90%ER +. I wish removing the ovaries would be enough. This chemopause is bad enough. I don't know. My mom had endometriosis and had a hysterectomy in her mid 30's. so, I always wondered when my menopause would be, since I thought it relied a lot on family history. Well, hello! Guess my menopause started last month. :-/
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I'm thinking I can live with the taxol for 12 rounds. I've done so much better this time. But I hear it gets tougher as you go. Any thoughts from the taxol ladies? Plus do you think it is too wussy to prevent the cancer from coming back? I guess I'm second guessing all of my decisions these days...lumpectomy, chemo that doesn't put you in the hospital...
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LindaKR
I am curious, did you have a mastectomy and still have to get radiation. I thought if you have a mastectomy you don't have to do radiation therapy. I know every case is different. My situation is that I had a lumpectomy in August. My chemo is well underway, I finished the A/C therapy, now am on taxol/herceptiin. I was told I would have to do radiation because I had a lumpectomy. I don't want to do radiation, so I am contemplating just getting the mastectomy done, possibly with reconstruction done at the same time. I have read this is possible. Any thoughts or info? Thanks
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Pbrain, I had a similar conversation with my onc. I was worried that the chemo lite I was doing wasn't strong enough. He said that I had to be alive to have cancer recur. Um, yeah! LOL. So its always a little bit of a balance game, this or that, this much or that, stop or go. Not easy, but you make each choice using the info you have at that time! And go on. Going on, being the whole point of this thing! Much love.
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waitingforthenextstep I was in a grey area for rads. Typically tumors over 5cm get rads even with Mx/BMX. I think the risk in my case (heart, lungs) was to great. My tumor was in the posterior region. I also thought in many cases rads are used if you have nodes.
Pbain the chemo SE get a little more intense each time or shall I say last a little longer. I think it's the length of time and the jumping from feeling good to here we go again that gets to us the most. Taxol is not chemo-wussy. Taxol is just as tough as Taxotere. Same tree just different parts. Taxotore I believe from the needles, Taxol from the bark.
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Pbrain..I did the 12 taxols followed by 4 FEC. My MO explained it to me that the Taxol is like a hammer that goes directly after the tumor and breaks it down and then the FEC goes in and mops everything else up. So I think the Taxol is pretty strong stuff! After my 12 weeks, my tumor was no longer detected by MRI and it was almost 3cms. I had chemo prior to my surgery.
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PBrain, I'm having 12 Taxol and Herceptin. Last one on Friday - yay! This treatment was recommended by my onc, and I trust him to recommend the right thing. I was stage 1a, similar to you. He also explained that there is data indicating that 12 weekly taxol treatments have a better result than 4 tri-weekly taxol treatments. He told me that the total dosage over the 12 weeks is higher than what you would get with 4 tri-weekly treatments, which probably accounts for the better outcomes. The body cannot tolerate 3 times the weekly dose all at once. So with weekly taxol you get a better result and fewer side effects. I know taxol and taxotere are quite similar, but I do wonder about why taxotere seems to always be given with cytoxan or carboplatin - I don't know what those c drugs are for.
Over the 12 weeks I would say the side effects are cumulative, but still very mild. I'm just more tired, get more winded when going up stairs, more C and D issues. I've never had any nausea. Taking L-glutamine and B6 to prevent neuropathy, and luckily I have had almost none of that. I consider myself very lucky to have an onc that recommended this "chemo light" treatment that is still supposed to do its job!
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PatinMN I've seen taxol given with cytoxin and taxotere given with carboplatin. The former I've seen in hormone + HER2- (4tx). Later I've seen HER2+ and -. But I haven't watched that closely.
My gut says if you're getting taxol every 2 weeks it might be too much to have cytoxin too.
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Hi again...
The needle wizard at the oncologist's office had this IV in within three minutes - tops. One try.
I laughed so hard that I think it brought my typically high white coat blood pressure down by 20 points on the top number because for ONCE in the doctor's office - the top number was 125 (versus something like 155 or 165).
They gave me my first infusion of Vancomycin in their infusion room so I got a taste of the future (although I had seen it before when Relda walked me through there a few weeks ago).
Tomorrow, I get a PICC line.
I used to not do much of anything but now I do cancer.
I say this knowing full that you all know far better than I do at this point what doing cancer is all about.
I'm wondering how Steiner is doing! Her first chemo was Tuesday.
lago, I hope you get your doctor situation squared away soon. Hopefully, what you said will come to pass - you'll end up with your same team again at some point in the future.
Moonflwr, I'm sorry you had to delay chemo AND lose your tissue expander! I take it you didn't see much of any improvement with the Vancomycin?
I'm hoping this 12 hour delay in getting the first dose of Vancomycin wasn't too much of a delay.
Thanks to everyone for your input, advice, past experience, etc.
One other thing, based on what you said, Bren58, I looked around to see if I saw any women icing their fingernails/toenails and didn't see anyone doing it so I asked the infusion nurse and she said in all the time she had worked there only one woman did that, which really surprised me. I didn't see anyone wearing cold caps but I sure do see the advantage of a port...
Today, sitting there getting ready to do all this I had a big fight or flight feeling/sensation. One of those "I want to start running and never stop running" feelings (I've had 'em since childhood and I'm assuming other people might get them, too).
If it wasn't for reading all of your posts and knowing that you all have worked your way through it - well, I don't know if I'd be able to handle it as well.
I'm so grateful to all of you!
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melster i did not have a SNB prior to neo-chemo. Not standard of care at the cancer ctr were i was treated. I was told the snb after neo chemo was just as effective as prior. To be honest, I would have preferred to have the snb because i still wonder if i had micro-mets in the nodes. My nodes were clear on imaging but we all know that doesn't mean that the nodes were clean for sure, i just didnt have any gross disease. Let me know what kayb's article states, curious what the guidelines are now
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Lee,
"I used to not do much of anything but now I do cancer.
" LOL!!!Unfortunately, this can seem true!! Don't worry, you will develop somewhat of a routine and have plenty of good days, even while undergoing chemo! Listen to the guided imagery cds. They help.
Glad the IV wizard at the Onc's office was able to get the antibiotics going. You should report that other person to their superiors so that others don't have to suffer your fate.
Good luck with the herceptin!!!
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Thank you everyone. I don't know why I'm second guessing, but I suspect it is because I still haven't come to the conclusion that I have breast cancer. I'm still in denial even though I look like Telly Savalas, and not in a good way.
Lee, I'm so glad you are getting the aBx's now and I am a great believer in the port! Keep us posted. Moonflower, you have been through so much. I hope all is going well for you!
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Lee, my infection came in so fast and hard, they didn't even TRY to save the TE. I ran a fever at night, it was 102, at the PS office the next am, in the hospital that day for removal. Um, both times.
Cg, just out of curiosity, which cd is your favorite?
Pbrain, you were really dumped in the deep end of the pool. Just keep moving! And keep your head above water, at least once in a while! LOL
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Pbrain, these words strike a chord with me:
"I suspect it is because I still haven't come to the conclusion that I have breast cancer. I'm still in denial"
I think that, to a certain extent, I am as well. At some level, yes, I am very aware of it but at this other level - I don't know. It's strange. I wonder if it's the mind's way of protecting itself from something that's too frightening to devour all in one sitting. When scary/bad things happen I tend to go into a strange mode. One time my husband and I had a scare with a kid who we thought was going to get really aggressive with us. We were in an unfamiliar neighborhood and we thought he was following us or stalking us (we were on foot for a short time having stopped in the neighborhood). It's like my mind went into this different place. Very practical, flat, cool, whatever but then much later - I completely freaked out about what could have happened and how stupid it would have been because being there and stopping was my idea.cgesq - I need to go download those files right this minute! I have the second email but it came in when I was concentrating on something else so I let it drift down a bit in my inbox. Thanks again for sending them! Re: last night's nurse - I've written up an outline of what happened. I'm torn about how far to take it. On the one hand, I hate to impact a person's job security but on the other hand, these infections aren't anything to mess around with. His orders were to insert an IV and get me hooked up. I feel like he cost me 12 hours on this thing and when it comes to an infection - that's quite a bit of time. It's too late for me - what's done is done - but my vibe was that he was very nervous about placing IV lines. Perhaps he shouldn't be the one doing that kind of work in the future... I have a pretty high threshold for pain but the next person might not - and the next person's infection might be even worse...
Moonflwer, could the doctors tell by the appearance of your skin that they needed to come out? My skin is very red near the incision and the BS drew an outline so we could watch the progression. My fever was at about 100.5 the other night but I felt so much better overall when the fever broke.
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Lee,
I am so glad you're on top of it!
You know...this whole thing with the nurse. Being a BC patient has taught me some hard lessons. I'm gonna share some of my lessons with you, in hopes you might benefit from them. Take it or leave it. I just want to put it out there for you.
You might want to consider effective ways to handle medical incompetence; ways that you are comfortable executing. You are going to be in tx for awhile. More than likely you're gonna run into this type thing again. It helps to have a game plan. But it should be something you know you can do, and easy to remember.
My game plan is basically this.
First thing I say to myself before any medical procedure.
1. This person works for me. Period. (And if I don't like them much for some reason, I think of them as my servant. WHAT?!? lol)
2. This isn't a car, it is MY BODY. I live with the consequences. They go home to their families and forget about me. I will advocate for this body as hard as I would my child's, my husband's, my best friend's.
3. No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of me!
(Okay that last one I don't always say to myself....but you get the gist.)
Some of my hard won "rules" now are these:
1. I don't mind trainees, but they get one shot for a vein or procedure. After that, I am asking politely for a real doctor/tech/nurse/whoever. I will get one, or I will simply stop the procedure and leave.
2. Walking out is ALWAYS an option. Barring emergency medical tx, there isn't anything that can't be rescheduled as far as I'm concerned. A few days won't make much of a difference, and even if it does, so be it.
3. If someone gives me the creeps, doesn't wash their hands before touching me, seems nervous..in short if I feel they do not know what they are doing, I will stop the procedure immediately. Explain, in a nice way, that I am not comfortable and have no confidence in their ability, and would prefer to reschedule/have them call for a replacement/etc.
That's all I can think of right now. But when I read about your nurse issue, I thought...wow, if I'd have posted my hard won rules/knowledge back on page 100...you probably would have been better equipped to deal with the situation. (OCD reader that your are!
As an extremely healthy person my whole life, I can tell you I was CLUELESS about medical care. CLUELESS! I actually believed it was better to be injured than RUDE when I started BC.
But it took me about 3 days into diagnosis to toss that misconception.
I am not talking about snapping your fingers in a "Z," popping your gum, and going ghetto on somebody. Just finding the things you are comfortable doing, planning it out ahead of time and doing it. And never EVER forgetting....be your own advocate!
Though technically your plan could be....Um, I will let my husband be my advocate. And then you can tell him in private all the things that are unacceptable to you. So he can go all attack dog when some sweaty incompetent nurse drips all over you while stabbing your arm with a needle!
(Antecdotal stuff.....My husband is great in this role even though I don't need him to be most of the time. When the surgeon punctured my lung inserting the port, my husband was ALL OVER HIM. It was an accident. But for whatever reason, during the pre-op when the surgeon was going over all the potential complications, a punctured lung never came up and wasn't in the paperwork. My husband asked him how many lungs he's punctured doing port insertion. Why it wasn't listed as a potential risk in the pre-op. Why it happened to me. And just basically went to town with very pointed questions....the surgeon felt like he was being interrogated...and he knew, KNEW that his ducks better always be in a row when dealing with me because my husband takes no prisoners!..lol.
Another time a new tech tried to draw blood from my arm, got the vein on the first hit but forgot the tourniquet. So no blood came out and he was pulling on the plunger trying to use suction. Before I could say anything, (I wasn't paying close attention because I was talking to a lady beside me) hubby told the kid to "get away from my wife. I'm not even a medical professional and I know you don't draw blood without a tourniquet. Where did you go to school? Get the hell out of here and find someone who knows what they're doing.")
But even if the husband is the advocate, it's good to have things in your arsenal...he can't be with you every second and fight all your dragons!
Does any of that make sense?
I'm kinda rambling here.
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Well, it was spreading fast. This last time I wasn't red when the fever began at 8 pm. By morning, it was red over half my breast and swollen. By the time I was in pre surgery, it was red all over and on part of my side, so yeah, I guess they could tell. Also, I am allergic to so many abx, they don't like to take any chances. But, that's all done for now. They won't touch me for reconstruction for at least a year. The real unhappy part, is they won't do my knee surgery either, so just call me gimpy, smile and wave when you see me bumping along the sidewalk!LOL Much love to all.
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Waitingforthenextstep I had 5 positive nodes, at the time I was diagnosed anything over 3 positive, or over 5cm, got radiation (now I think they're finding that any positive nodes might benefit from rads). Plus the tumer was almost 5 cm (4.9 I think), and the margins were clear, but not as much as the surgeon wanted - added up to 30 rads, including supraclavicular rads. They covered all the bases!
I see that you have 0 positive nodes and your tumor size is NOT 5cm or greater, so you would probably NOT have to have rads if you had a MX. You'd need to double check with your docs, but that's what I understand.
Lee - glad you're getting the drugs, finally!!!
Pbrain - I thought I looked like Lex Luthor - the one from the old Superman, I think it was Gene Hackman
- YIKES! How are you doing with the wig - I couldn't stand it, wore hats and scarves out and nothing at home. And with makeup I didn't look quite like Lex Luthor. On my 2 year cancerversary I had a melt down/panic attack about having cancer - I had this thought that kept going around and around in my head - Oh my gosh I have cancer !!!!!!! Just like I had just found out (only I didn't have thata reaction then) Talk about a delayed reaction
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Lee, I would tell the home nurse's boss that he could not hook up your IV, despite numerous tries. That was his job, and he didn't get it done--and probably stabbed you several times in the process. Moreover, as you point out, he cost you precious time. If his boss isn't aware, he might send him out again without better training and he will hurt somebody else.
As for the mp3s, look for the 3rd email. As I wrote to somebody, I will never have a career in sharing mp3s!! It took me 3 tries to link these, and they are legal!!! If you have trouble, pm me and I'll send you the correct link again.
Moonflower, the mp3s are pretty similar, they just focus on different things. There is one for breast surgery, chemo, relaxation and positive thinking. Then there is one with just soothing music. Pm me your email address if you are interested. Now that I know how to send them, it shouldn't take 3 times!
I had TCH treatment # 5 today. The clinical trial nurse came in to talk to me about the metformin trial. I'm still on the fence, but she said it is filling up so if I'm interested, I need to tell them soon (not sure exactly what that means.) In either event, I wouldn't start till probably mid/end of January, because you have to be off chemo for a few weeks. You can still be on herceptin while doing the trial.
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Ha, thanks Kay...I might do that...clean it up a bit first
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Waitingforthenextstep,
Just got back from a survivors forum at my treatment center i with the foremost direct to implant nipple sparing plastic surgeon in the country. It's a great option if it's available to you . The results are superb. I'm seriously reconsidering my lumpectomy decision after tonight.0 -
TonLee, You are absolutely right!!!! You go girl!!!!!!!!!!!!!
Sometimes, it helps to have a good cop/bad cop routine going, so using your husband like that is a great idea. However, you are right to be your own advocate. Subpar medical treatment is not acceptable, because we have to live with the consequences!
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TonLee, didn't see your post before, we must have posted at the same time. you are right. We do need to advocate for ourselves. I did let the student put in a port needle in the hospital, but her supervisor was right there. AND I watched her every step. If she hadn't gotten it right. I would probably have said no to a second try. But then again, my daughter is a student nurse, and I might have let her try again, but that's just Mr. LOL. But I did walk out on a echo, when they told me they hadn't gotten an ok to get it yet. I had called the week before, to make sure it was ok, then again the day before and they hadn't gotten the ok. Then I got a call at home by the imaging supervisor teaming me out for waiting to the day of the echo to check. I explained I gave them a call the week before, and it was scheduled for more than a month, why is it my responsibility to make sure they got the permission? That's their job. Sigh. All the fun we have. Much love.
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TonLee,
I agree with KayB 100%! I am copying your post right now and emailing it to my husband!
The thing is - I was a hard @ss during my husband's illness. I had to be the one to more or less fire his gastroenterologist and it made his (new at the time) primary and his rheumatologist really nervous because the gastroenterologist was who was the referring physician to the rheumatologist (you know, that unspoken referring code...) but I said "I don't care - my husband was in excruciating pain for several hours and the nurses are so intimidated by this guy that they were afraid to call him."
Last night's debacle took place in our master bedroom. I was in my chair and my husband was in another chair across the room so I could look over at him during all of this and we kept giving each other the eye, i.e. the WTF eye...
The vibe I got from this guy was strange. It's almost as if I could sense that he was nervous about putting in the IV and was first delaying it and then almost holding me responsible for not having good veins...then, he wanted me to drink all the water so as not to make me into a "pin cushion" and despite all of that he STILL made me into a pin cushion.
I never realized that placing an IV needle was so difficult but I did get a sneak preview of that one morning in the hospital when an older nurse could not draw blood from one of the veins in my hand and after three attempts had to bring in the ninja nurse who did it on the first try and left the room without a word.
Because I was so nervous about getting this antibiotic in my system and because he was in our home - and I never like to be rude to anyone in our home - everything was a bit off.
My husband later said that he was getting concerned bordering on pi$$ed off but was kind of following my lead and I think my lead was just "come on, let's get this show on the road."
As I was starting to see the same shows being repeated yet again on CNN I'm thinking "this is taking wayyyy too long" and I even had the feeling that he was trying to draw it all out, perhaps so as to get PAID more per hour - in fact, he said his supervisors said he needed to move along faster (or something like that).
I learned a valuable lesson last night and one was this (that one of our people on this thread was kind enough to email me) after two tries (stabs) someone else needs to come onboard.
Being polite got me nowhere last night. I don't know if being rude would have gotten me any further but it might have at least gotten him out of our hair an hour earlier.
This constant juggling of schedules for my husband's work is really stressful and this guy cost us more time today.
I hesitate to bring up the billing with this company until after it's all over but I definitely will be alerting the insurance company as to what happened because after all, this place is in their network.
Again, that's a great manifesto, TonLee, and I truly appreciate you putting it together - not only for my sake but for all our sakes. Definitely should be must see reading for people entering into this cancer maze.
One idea...perhaps not such a great one because it will make your initial post (the one starting this thread) pretty long would be to edit it into that post so it appears at the top of every single page of this thread - but it's NOT just triple positive specific - it's a must read type of thing for ANY patient, cancer or otherwise.
Live and learn.
Or perhaps learn so we can continue to live!
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Pbrain-I had taxol only weekly for 12 weeks with herceptin. My onc really follows all the things going on in Europe, and he said taxol is easier to tolerate, especially the weekly version, and as effective, and a little more effective in some cases. Out of the four oncs I interviewed, the person at IU med center that I loved recommended the same protocol, for the same reason, so I felt comfortable when I decided.
To help,with joint pain and neuropathy, I took Acetyl-l carnitine.....high doses. I had very minor joint pain. Neuropathy was only tingling in fingertips, and freezing cold feet and hands. I used hot water bottles in bed at night. Worked better than the heating pad. Iced toes and hands, all the way through herceptin. Toes and feet still are harder to warm up .
Also kept the shellac nail polish on. Nails stayed great until I was almost done with herceptin, then they were so thin and painful, I couldn't do the shellac. Now, they are mostly better, but still very brittle and break easily. I tried a shellac again when we went to Thailand and it worked pretty well, but I don't think they are ready for it on a regular basis.
I did not take any steroids in pill form, however,I was given aloxi and decadron via IV.
No problem with nausea. Occasional queasiness and I would take one of the dissolving zofran a, and it worked great.
Let me know if you need anything, I can easily run up to meet and or help you. mwas just on the north side yesterday.0 -
Wow, LeeA, that is horrific. I would be apoplectic at all that. He sounds wildly incompetent, maybe just a brand new nurse, but why the hell would they send someone like that out for a situation as serious as yours?? I’m horrified. The guy is incompetent, I wouldn’t worry about costing him his job. He caused what hopefully will MERELY be a lot of unpleasantness for you (hoping you’re tsill getting the antibiotics in time so you don’t have to redo the TE, or whatever it is). But someone this incompetent could cause a much bigger problem for someone else.
Pbrain, I had various people say how strong I was to be doing as much as I did through chemo, but really I think I was just lucky that for whatever reason it didn’t hit me that hard, as it goes. I didn’t exert will and force myself not to be violently ill or something….
MsTori, I’m like almost 100% er+, so I’m guessing you and I will be stuck with the tamox for a good long time. I asked my onc about an ooph and he said he preferred to have me on tamox – unfortunately I don’t remember why! Will have to ask again and take better notes.
Moon, it sounds like you have been through the wringer!
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Melster, I am completely new to all this. I have been told that I am stage IV triple pos even though I have not had any successful biopsies (other than the biopsies of the breast) of bone and lymph node that are hot in all scans/scans/MRIs. Drs were unable to access sites using FNA and feel that the risk of waiting for an open biopsy of bone and lymph to heal before starting chemo would be detrimental to my prognosis. I had my first chemo last week. I hope this helps, Bren.
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Checking in quickly, had first chemo Tues. first day was great no reactions or SE. Yesterday had awful heartburn and a little tiredness and by 6 or 7 I felt ready for bed. Woke up an hour before my work alarm today, I think I'm going to at least try and get a half day in. I can feel my body weakening and slowing down a bit but still able to function alright! Went and got my haircut after infusion, donating it makes me feel better that losing it all haphazardly on my pillow or hairbrush. Looks kinda punk rock, I do a little pompadour up front and a having fun trying something new even if just for a few weeks!
LeeA, wow on all the infection/home nurse/picc line stuff!! I hope your antibiotics are kicking in and doing their job.
Pbrain, I'm so glad you are tolerating the Taxol better! I hope you get through all 12 rounds as good as or better than this first one.
Bren58, so happy to hear you're on the upswing after 1st treatment. I'm day 3 today so expecting some new or more pronounced symptoms. So far no n/v or D thank goodness!
Moonflower, I'm very sorry to hear about your MIL. My prayers are with you and your family. Have a blessed day everyone!
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TonLee - I totally agree that that should be a post by itself for newbies. It is so helpful and would and would be a great benefit for those just starting to enter this frightening fight to know that they do in deed have some control in their care. Especailly since we feel like so much about this disease is totally out of our control!
Lee - "learn so we can continue to live" - I like that!
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Mustangwild...
Welcome to the forum. Lots of wise, wonderful ladies and infinite wisdom lurking in these pages! Always need more!0 -
Great advice TonLee....so many women ...including myself....are intimidated in the health care system ....
I remember Lago admonished me when I was frantic trying to get a "permission letter" from my mo for my BS in order for him to remove my port. She reminded me it was my body and I didn't need permission to remove it from my body!0
