TRIPLE POSITIVE GROUP
Comments
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Thx, Rozem, I know, that is why I am not panicked. but the studies are just beginning and they don't have any data yet, after all who is going to agree to cut short tx without proof, and is it ethical? I believe it is empirical data based on people who had to quit. (Hopefully, not me!) Oh well I dont know how that study is done, but as I said, its whats keeping me sane, but perhaps they found those two or three little points today. LOL.
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rozem - I have been waiting to read the results from those studies of 6 vs. 12 months!
moon is there a poem in there about ports and flushing and deporting and stuff???
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Hi ladies, I have a stupid question regarding ports. Why do you have to keep the port in after you have completed chemo and herceptin? I never had a port,my doctor said I did not need one, because I had good veins.. I had 6 cycles of chemo and 11 herceptin infusions. So far no problems. I guess I have been lucky
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Eileen my onc wants all her patients that get ports to keep them for 2 years because:
- Risk of recurrence is highest in the first 2 years
- The place where I get treated will not place a new port in the same location because of increase blood clot risk.
She said it was up to me. Granted once she told me why I didn't want to jinx anything so I kept it in. Glad I did because they did use it for my colonoscopy. (Wouldn't let the nurse use my foot eventhough she knew how. More risk of infection in the foot and colonoscopies are dirty business. Also had a blood draw this spring.)
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Thanks Lago, Wow, that's concerning to hear..Thank God you made it 2 years NED. Club NED is a great club to belong to,may you be a member for many,many years.....
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eileen - it is a doc philosophy thing. Mine won't deport post-Herceptin until I have a clear PET scan. I don't want the PET until a significant time has elapsed since my last surgery (Feb) because all the PET sees is the surgical inflammation and does not get a clear look at the BMX site. I have one scheduled for December, so we will decide after that. Some oncs don't like to deport until their Her2+ patients are past the early recurrence timeframe since it is problematic to place a port in the same location. For me personally, the port was placed during BMX so I do not have a scar from placement. My port is subclavian - in plain sight all the time but it is so small nobody knows it is there. If I have it removed there will be a scar that is visible 100% of the time. I am pretty content to just leave it there - also, my BS concurs, he says to leave it. PS wants it out since it is a clot risk.
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hmmm....interesting discussion on ports. I have to decide in Oct if i want them to take it out during my bmsx surgery, I only have 1 more herceptin after so i was thinking i would just get it done through my veins. My friend said its probably better to have the PS remove. Not sure what to do, they are leaving it up to me (i think) noone has suggested leaving it in after H
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Thanks Kathy, As I told Lago the 2 year recurrence thing is concerning,but I still feel lucky not to have had a port.I got black and blue just one time during chemo,all the rest of the times were very easy.
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Ports are a love hate thing....and Moon if you could work flushing into a poem...lol...it just hit me funny today...when I think of the things we flush.
My port hurt when I exercised, so I wanted it out.
My Onc nurses told me I had to keep it for 5 years. But I had it removed after my last Herceptin.
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GREAT NEWS LAGO,
My doctor told me she prefers the port taken out when not a need for it she said that other wise need to have it flushed every 3 weeks and if not there could be problems. I am having mine taken out asap... when I am finished with herceptin in march 2013.
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UGH
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Congrats Lago!! Love the poem Moon!!
Question.. My EF have been steady 60-65% range. I have started exercising a little harder and getting my heart rate up. Could this effect my next ECHO? Dont want to over stress my heart.0 -
I still have my port. And I am totally done with all chemo and herceptin. I've haddifferent things happen to me and my port has akways been used since my arms can't be used and I'm happy about that if they're not being used, I get them flushed but lately I've been in and out of the hospital with my port always bein used. Besides my veins weren't even good fr chemo and the rest. I know techs can't use them, but most of the time they get a nurse of my scans or they do use my foot. So my port is very handy for me.
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Blue Moon tonight!
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Ok, just remember you guys asked for it!
A port's a thing in my chest
Made to give veins a rest
And though it will hurt
When first they insert,
Even with flushing it's best!
Well, it includes ports and flushing..... LOL0 -
moon - I love it!
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ALOST LOOKS LIKE ONE 0 -
great job moon
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Oh boy, Ton Lee, you started it! This one is very relevant to me, if you remember some of these things I did! LOL
When I think of the things we flush
Like keys and oatmeal mush
I don't think of ports,
Or little toy forts
But the big D in a great big rush!
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Lol Moon...and let's watch the blue moon together Camillegal! They say weird stuff happens during the full moon!
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Well, we can count the poems as weird stuff! LOL
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Hey Moon good one----
Ashla----Once in a blue moon eeeoooooooeeewwww---Doesn't that mean there's 2 full moons in one month? I know I could look it up, but I don't hahahaha
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You're correct...only happens " once in a blue moon"....actually every few years,!
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Moon do you work for a greeting card company? These are fabulous.0
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lol Moon....good ones!
Too many clouds here ....crowding out the moon
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LOL Moon!!!0
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I'll admit there are some upper body exercises where it does get in the way and mine is little. My only concern is of course what I'm going to do for a blood draw. I can't seem to find any place that will take it from my foot.
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Lago can they take it from u'r hands for a blood draw?
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Lago- congrats on the 2 yrs NED. I appreciate you- in my early days here especially. You are so kind to help so many.
Moon- quite a poet! Love it!
I still have my port. MO, PS, & BS said it was up to me. I have visits every 3 months (with labs) & bad veins. When I go to every 6 month visits, I think I am getting it out. Go every 6 weeks for a flush. Hated the port the first week, and have been fine ever since.
I hear you all about the cardiac risk. Personally, my echo went down slightly during (didn't have one post). I am so much more worried about recurrence than long term cardiac issues in my personal situation. (I am 99% ER+ and slightly PR +).
Hope you all have a great blue moon evening & wonderful weekend!
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Re: Port flushing. I had a power port and had it flushed once a month. Both oncs suggested that. When I was deported 2 weeks ago, I grabbed the packet they gave me when I had it put in and I had never opened that packet. The instructions for the power port are to flush once a month....can't believe I never opened that packet....there was a wrist band in there that I was to be wearing all this time to alert emergency people if I had a problem.
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