TRIPLE POSITIVE GROUP
Comments
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Moonflwr - thinking of you and your family...
I slept through the night!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Dr ok'd taking 2 of the tablets last night, and it worked. I slept from 10.30pm to 5.30am. First full night of sleep in a year.
Jenn0 -
Yeah Jennt!
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Hello ladies:
A friend of mine is Triple Negative. She hasn't made it to the blog yet. Hard for some! She just finished her 4 Txs of AC and just developed major neuropathy in her hands and feet. She can put no pressure on her feet and can barely use her hands. She begins Taxol next Friday and is really concerned. She's thinking of stopping treatments.
I didn't have neuropathy so can't help her out her. Any suggestions?
Thank you ladies!
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Thinking of Moonflwr and family...
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Ha ha fluff!
Yay Jenn! Sleep is such a wonderful thing.
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Pbrain and LeeA - you will love Buffs - they are all I wore while hairless. I loved the Pirate way of tying them. The best thing is they are warm if it's cold and cool if it's hot. I even got one with Silver ferns - the symbol of NZ. I got a few here in Oz then ordered from the American site - a lot cheaper and a bigger range. The other best thing about them is that they are not cancer headware and you can use them after your hair grows back.
PBrain - sounds like you aren't as sick this time - that's great. The carboplatin might have been the culprit. Those platinum drugs are evil - my DH had oxaliplatin for his bowel cancer and he was as sick as a dog and then had to be hospitalised every time.
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This really isn't a reply but found an article in the New York Times Health Section today. Study on Tamaxofin(sp). study indicates it should be taken for 10 years not 5. Interesting read if you can get it.
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Bellanan, my oncologist said that the studies being presented right now are early findings and that they won't really know about the additional benefit of the hormone blockers being increased for a few more years. A lot of researchers present preliminary findings at the big meetings because they have proposed a pre-hoc interim analysis during the study duration. So we'll see. I can't wait to start the drugs (NOT!! I had a symptom-free menopause--seriously, symptom free, no hot flashes, nothing...arghhh!)
So how is everyone doing this evening? I had my weekly taxol/herceptin today, feeling fine so far. I'm going to take the anti-emetics, no matter what. My only complaint is fatigue and the skin is peeling off of the pads of my fingers. Plus I have a runny, bloody nose and I'm bald. Ah yes, I feel good!
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I have read just the article, so I am sure that there will be a lot more coming out. Since we will all more than likely be on a hormone inhibitor it is something to chew on. I had thyroid cancer many years ago and after menopause I went on rolaxofin(evista). I was on it for at least 12 years. So much for that protecting my uterus and breasts! This is another conversation my oncologists and I need to revisit.
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Arlene I think that she should talk to her MO about the neuropathy, they might lower the dose, or have some ideas about meds that help with it.
Pbrain - had peeling fingers forever, also feet, it does go away eventually, I had a bloody nose frequently too. It gets better and your hair does come back, enjoy that you don't need to shampoo, dry, style it, it's pretty much wash and go - and NO bad hair days
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Pbrain, meant to tell you I too have a runny bloody nose and a very bald head! I do not feel good- bad indigestion that was preceded by nausea. I am about 10 days out frm treatment so expect to start feeling a bit better before my 4th treatment.
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Hi all.
We got home about an hour ago.
He did replace the tissue expander. I didn't get to talk to him after the surgery but DH did. He said it wasn't all that bad in there.
I felt pretty good afterwards until I got up to go the bathroom (this hospital has private outpatient rooms - very nice setup) and then BAM. My discomfort went from about a 4 to about an 8 (pain)!
Weird how it hit like that.
I woke up so easily in the postop area and I was trying very hard to stay awake and alert so they would move me back to my "room" so I could get something to drink. There was one guy who must have been trying to do the same. I looked over at him and he looked back and we gave the feeble fingered wave to one another and smiled.
At that point I thought "hey, this is a breeze!"
Now, I'm down to one drain and the new JP bulb has a thicker hose for more drainage I assume.
No decision on the PICC line. They just used last night's latest IV line.
Jenn, so glad you got a full night's sleep!
Susieq, the buffs look great. I think those might the the things Relda was telling me about a few weeks ago but I didn't catch the name at the time. I did see Ms Tori's mention of them as well.
I hope you all have a great weekend - or as great as possible considering our dueling partner.
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Bella: I too was on Evista which should have protected us from BC. Ha ha!
Linda: Thanks. She has called her onc and no response yet. I find we have better information here than the doctors.
PBrain: Bad, isn't it. But we promise there is a light at the end of the tunnel. Your spirits seem great though and that is half the battle.
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MsTori, interesting re the dizziness – I had that happen to me a couple of times and no one really knew how to explain it or what it was. I posted about it and no one else chimed in and said they had experienced that. I had this crazy super loud ringing in my ears at the same time – did that happen with you?
SpecialK, I don’t understand what all these scans are?
LeeA, I’m sorry to hear about the TE exchange. Don’t worry about the herceptin delay, it’s not much of a delay and they are actually moving you forward pretty quickly, it sounds like.
Jenn, wow I am a full blown insomniac and temazepam is my go to pill when I’m really having a problem. Ugh, that does not bode well for my tamox experience once I start.
Pbrain, the skin is peeling off your fingers? The fun just doesn't stop!!
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cypher - I won't just blame the insomnia on the tamoxifen because I haven't slept through the night since I was first diagnosed a year ago. I think the stress got me out of the habit of sleeping through and I never got back in the habit. Tamoxifen just made the insomnia a little bit worse but bad enough I couldn't handle it anymore.
Looking forward to another night's sleep tonight I hope :-)
Jenn0 -
Sweet Dreams Jenn (((((((((((((((HUGS))))))))))))))))
Sue
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Jenn, glad to hear you got some good sleep the other night, I hope last night was good too!
LeeA, good news on the surgery and TE not being as bad as they thought. Boo to the extra pain though. Hopefully the bigger drain will help speed up the healing process this time around! I didn't know they came in different sizes.
Bellanan, I saw that article earlier this week (Tamox 5yrs vs 10yrs). At my original consult in October, my MO recommended I'd be on Tamox at least 5 years, maybe 10. I wondered why such a difference in time but she must have known about this study. We're not to that point yet though, gotta get through chemo first.
Pbrain, your attitude is awesome! I swear you've been through the ringer and have every right to whine and cry but you've just got this amazing fighting spirit! I'm glad you're tolerating the weekly Taxol/Herceptin better. I didn't think about bloody noses, but I usually get them anyway during the winter time so I won't be surprised now if it happens
Have a great weekend everyone! I plan to take it easy. Got lots of homework to finish before my semester ends next weekend.
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cypher - PET scans are used to dx cancer from "nose to toes" by scanning after injecting a tracer. I had one pre-chemo because I had surprise positive nodes, previously undetected by any imaging. They needed to do it to properly stage me. I had one post-chemo to make sure all was still well. My MO also likes to do one post-Herceptin, but every previous scan I had done was very close to a surgery so there was some occlusion, and I had just had exchange surgery so I didn't want to do it then. It has been 11 months since any surgery so this will be a very clear look. The CEA and CA 27/29 are tumor marker labs - he does those quarterly.
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Thanks Steiner, sometimes I feel like a giant downer on this board.
Your compliment is very appreciated. I am naturally a positive person, but I do still wonder if this diagnosis has even sunken in. Ports, bald head, psychotic friends who have no boundaries, constant big D--you'd think that would get it through my thick skull....A couple of factoids--my NP taught me how to use immodium yesterday. My potassium levels are seriously punk and it is probably because I poop on the average of ~20 times a day. It's lovely being chained to public toilets. So she said, first bout of the big D, take 2. Take 1 after every next round, but don't exceed 8 a day. So far so goodish for me. It is 11:30 and I've only pooped 3 times. Ah progress.
I'm trained in clinical pathology and I want to warn against the tumor markers Special K mentioned. Physicians also use CA 125. These tests are good, don't get me wrong, but they are limited. First of all, what they are testing for can be made by other tissues in the body, not just breast cancer cells. So they aren't useful for diagnosing a recurrence or metastasis. Where they really shine is reflecting your response to treatment. They are wonderful for the neoadjuvent patient (is this doing anything?) along with people like me who are getting chemo post-surgery. Where the problem lies is if they are being measured after your treatment. They really shouldn't be.
I've had to coach physicians on this over the years. They want to use the tests to see if there is a new cancer or a micro-batch of residual breast cancer cells are waking up and smelling the coffee. But they just aren't specific enough for that.
Feel free always to PM when you get whacky blood test results. I'm happy to give un-official advice. I worry in our field that we have so many tests that scare the living crap out of people. A lot of the pre-pregnancy tests are absolute minefields! I've helped many a sobbing, pregnant coworker who had beautiful, healthy babies after horrifying gestational blood tests
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I concur with pbrain on the tumor markers - many doctors simply don't do them because they are known to be unreliable - if you have inflammation they will escalate. My doc uses them for trending info only - a puzzle piece, if you will. I would estimate that half the oncologists use these markers after treatment, the other half don't do them at all.
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Hi all. Sorry I've been absent for a while.
Lee- yes, the website SpecialK gave you. Their is also a site at buffwear.com, but they ship from the UK and took forever to get here.
SpecialK and Fluff- yes, thank you for participating in this trial. I was looking it up and looks like phase 3 has numerous sites here in Florida.
cypher- I am feeling better. No more dizzy spells. I didn't have any ringing in the ears. Not sure what happened. But when I get out of bed, I sit on the side of the bed for a minute before standing up. Haha! I took an Ativan that night before bed, but I don't think that was it. Been hot flashing. Thanks for all the suggestions. I am now able to fall asleep without problems. Now just waking up with flashes. Lovely. Meh!
I'm getting ready to go for my 4th treatment this next Friday the 14th. I guess I'm officially in chemo pause. More at night than during the day. Covers on, covers off, covers on, covers off. :-/ trying everything. Also, been waking up at 5:30-6 am every morning.
Moon- my thoughts are with you and your family.
Pbrain- I feel the same way. I thought I was the only one. I want to be positive. But it's hard with this chemo. Seems like whenever I do get on here I whine. So we will whine together! ;-)0 -
SpecialK, do CT scans entail radioactive tracers?
Pbrain, you are NOT a downer! This all sucks and you have been having a hard time of it –that’s what we’re here for, to support each other. Also could you please PM me with your email address? I want to take you up on your offer….
Ok TMI alert – I am now on herceptin only, possibly with pertuzamab b/c I’m on a double blind trial. I am having a lot of GI issues – basically really gassy and … sometimes unable to tell whether it’s just gas or … you get the idea. Also a lot of joint stiffness. My first thought is – are these SEs of the herceptin (and possibly P)? 2nd thought – well I’ve been on those herceptin + pertuzamab/placebo since July, so how could they be? 3rd thought – maybe either the chemo drugs masked these effects (b/c those drugs are so much stronger) or the drugs they gave me to tolerate the chemo masked these effects? I know that chemo is anti-inflammatory so it may have masked joint pain, whether that joint pain/stiffness is just me or whether it’s from the H. Thoughts? I’m particularly curious about the GI tract stuff b/c I have been inclined to think that I’m in the placebo group but I have also heard this can be a P side effect.
JennT, if you want the cocktail that finally worked for me for insomnia, please PM me. It involves pharmaceuticals among other things.
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Mine also uses the tumor markers to show any trends, so they have a base line. He said it's just one piece of the puzzle too. He does them every 6-12 months, but explained to me that he doesn't base any diagnosis on them, but if they rise, then he would suggest more tests, or if I get pain and they go up, then...... He gave me a bunch of examples.
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re: nausea -
When I mentioned often having nausea following general anesthesia the anesthesiologist offered up a nausea patch to put behind my left ear.
I don't know the brand/name but just thought I'd throw it out there (I'm wondering if it would work for chemo).
RE: CEA test -
my gynecologist ordered one in late July during (because of the lump) and mine was 1.6 (normal is 3 and below for non-smokers). He put 1.6 with exclamation points on the prescription/referral for a breast surgeon (he thought that was a good sign it was cancer - but it was).
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cypher - in the archives there is a funny post about herceptin gas. I'll see if I can find it for you.
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It turns out it wasn't all that long ago (the post(s)) - be sure to read the entire page because I think there are several mentions:
http://community.breastcancer.org/forum/80/topic/764183?page=411#post_3297725
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cypher - here is a link that explains the contrast material used for CT scans:
http://www.radiologyinfo.org/en/safety/index.cfm?pg=sfty_contrast
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LeeA, nothing odd about the smell. Ok well if it's the herceptin ... I already knew I was on that drug. Oh well....
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LeeA, since you're such a whiz at this -- I need to get those soft camis they sell at target, but I'm not sure which ones! If I do a search for "target" a LOT of other stuff comes up.... In case you remember seeing that. Or if anyone wants to chime in with something that i can use to identify the camis!
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Are we talking these ones? http://www.target.com/p/mossimo-womens-micro-rib-tank-assorted-colors/-/A-13224843#prodSlot=medium_1_1
I'm hoping to order on line so I don't have to go there--it's a madhouse and I'll spend about $100 on random stuff I don't really need!
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