TRIPLE POSITIVE GROUP
Comments
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Oh Rhonda I didn't mean in general, meant right before they want to take u'r blood==I had a problem and the nurse gave me a glass of water and I finished the blood just poured out and I drink loads of water--it was just funny that why I said that. One time I had a tech take blood from my finger and she needed 2 1/2 viles of blood and she bled me squezzing my blood drip by drip from my finger I was laughing so hard I told her I could suck it out faster and spit it in te thing. it was so silly.
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Rhonda2, there was no way I was keeping my port around any longer than needed. It worked great, no problems but I wanted it out. I had it out 5 days after my last chemo. I just assumed it was ok.
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Rhonda my port had it's moments too - sometimes the blood would backfill the tube and sometimes it didn't. Where I had treatment my blood was accessed through a vein though - there were no port trained phlebotomists, so it wasn't really an issue. When the blood didn't backfill when accessed, they just made sure it was going in ok - and it always did.
I couldn't wait to have my port out either, and had it removed about 2 weeks pfc. Could have had it out sooner, but had to wait for the surgeon to be available. I figured if I needed it again, then I'd have another one put in. I'm one year and seven months out from my final Herceptin, and so far so good :-)
Trish0 -
Rhonda, a couple of times during my weekly chemos (I got 12 weekly taxols with herceptin) they had to put tPA in my port. I know the nurses don't like to do that if they don't have to because it drags out the time of the chemo. But it worked quickly for me. The check every 15 minutes to see if they can get blood and they did with me after a half hour.
I've always had Herceptin over 30 minutes, with no problems. I'm wondering if that is why I have the LVEF issues...
Ashla, I'm still cracking up over your Onion post.
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I always like the stories when ports come out--it sounds so uplifting, isn't it? I'm glad for u guys. The scar is just a tiny thing right?
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camillegal I was pretty lucky. My port scar healed so well that my surgeon agreed to go through the same scar. Heeling well now too. I figure after the two year mark you won't even see it. I also had a kiddie port so it was small to begin with.
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Question about how many dose dense herceptin is the norm...
Not counting the weekly infusions during the TCH routine, is it 17 or 18 treatments thereafter which constitute the year of treatment? (I guess if you got dose dense throughout, the question would be 23 or 24 herceptins?)
Thanks.
Mom2C I also had issues when the herceptin was run over 30 minutes. I literally could not keep my eyes open and got a terrible headache It felt like somebody put sleeping powder in the infusion. I came home and was out like a light for hours. So much so that my son, who is an EMT, kept coming into my room and asking if I was ok. The next infusion, I asked that it be run over the 90 minutes and never had that reaction again.
Good luck!
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Camillegal,
I'm with you, I love these stories too. It's a real sense of achievement when that port comes out!
Luckily me and my port are good friends so I don't mind that he'll be sticking around.
Nicky0 -
cgesq some of us had 17 others had 18 infusions total of Herceptin every 3 weeks. The oncs don't even count the same
I had 17.0 -
Hi just reading all ur threads.. I gained a lot of weight during my chemo.. I have my last one aug 19....! I will deal with my weight gain later. I am 42 so I was not near menapuse. But the hot flashes are ok.. I don't have hair so it doesn't bother me so much.. I think chemo is brilliant that u loose ur hair in time for hot flashes. I shaved it 3 weeks into taxol and hercephtin. I'm hoping I have gotten fat enough for my diep flap... I still have time;) is it not a common practice to do rads before surgery? Or as I assume it depends on a lot of other things. I will have surgery thr diep flap then rads. Hope everyone keeps well!
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Have a question when do you start the count for the 5 year recurrence ? At diagnoses? After surgery ? After all chemo are done?
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Lago see 'rs was small and u ad a good surgeon too--that all helps the scarring, if any. Good
Nicky I call mine Pete--Pete the port--it's been with me so long it's it's own person almost. So ar I'm lucky I've had no problems with it. But it's used quite often.
Nursenay I got my rads when everything was done---but I don't know procedures today, there is always so much changing, but most of the time it's sounds pretty much the same to me.
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Nursenay...
I believe rads is almost always last...after surgery and chemo.
Ang..
The countdown begins after surgery.0 -
Camille, my port came out over 3 years ago. It was a regular sized port, maybe a 2 inch line? It's virtually invisible now. I kept sunscreen on it if I went out. I've had a zillion recon surgeries and the only visible scars are the original MX ones. I'm hoping nip recon helps with that!
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Camille,
Pete the port - I love it!!!! I'll have mine a year next week, and its been used every week since then until march this year, now used just every 3 weeks. I've never had any problems with it and it doesn't bother me that its going to be staying. Haven't named it yet though; I need to think about that one - open to suggestions ladies!!
Nicky0 -
I called mine pumpkin... pumpkin my power port. It was placed on Halloween .
Pepe le pew since it's French? You can do better.... Is this a contest? I can do better if it is!0 -
Definitely a contest! I'll take my laughs wherever I can get them 😃!
By the way, I live in France, but I'm actually Irish!!!
Nicky0 -
Game on.... We've got a contest here to name Nicky's port. Monday is usually a little quiet . We'll have to advertise this a bit! Love Ireland and the Irish . The most soulful music. DIL is Irish American.
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That's cool! Like as I said, its a permanent fixture, so no rush. It's 1 year old next Thursday, so maybe we can unveil the new name then? Your DIL must be great if she has Irish blood! 😉
Nicky0 -
NickyJ
She is a wonderful girl....6 ft tall! Irish on both sides....0 -
My port came out in Feb just a week after my last herceptin. The scar has stretched a bit from the weight of my breast I guess, and there's a circle of scarred, toughened skin from all the jabs into it over the previous year.
I massage it and keep it out of the sun but think it will always be visible :-/
Jenn0 -
Jenn,
I hope it'll fade as time goes by, it's not nice to have the scar as a reminder 😔.
Ashla,
6ft! No messing with her!!!
I'd love to hear how 'Irish' she is - I often wonder about my children. They were quite small when we moved here, it'd be interesting to know how 'Irish' they're children will be!
Nicky0 -
NickyJ,
In the US..especially in areas like NY and Boston...there are very large populations with Irish american roots. In most parts of America, all kinds of immigrants can keep their ethnic heritage ties and still assimilate easily. Everyone comes from a different country..just a question of how long ago.0 -
Ashla,
I've already come across this. My dd's boyfriend has a French mother and a NY Irish American father. His father thinks my dd is great!!
Nicky0 -
Rhonda, my port will not give blood either, but I receive my Herceptin just fine through it. My infusion is always one hour and I always feel good afterward. Had one today and feeling fine.
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My port was one year old on August 2nd.
I propose the name 'Portia' for Nicky's port - in Shakespeare's The Merchant of Venice Portia disguises herself as a male and takes on the role of a lawyer's apprentice to save the life of a man. Our ports are 'in disguise' while not in use and are being used to save or extend our lives.0 -
Websister...
Love that..Portia...that would be a very high brow name for a power port! Gotta ask Nicky J how she wants to pick the winner. Three judge panel?0 -
I think Nicky should name her port "Pop and Go". :-) And I knew you were a native English speaker Nicky because your writing is so good. I work with brilliant Swiss and Germans, and I always have to correct what I call Germlish and Swishless when they send me documents ;-)
So I had an interesting experience today. They slipped me in for my echo so I can get my Herceptin tomorrow (thanks for the suggestions Lago and others, they were wonderfully gracious about getting me in to the Indiana Heart Hospital, which surprised me immensely). The director of the cardiovascular imaging center was able to get a needle into a vein (after many painful tries, but I told him I was not squeamish) and they inected the contrast and took decent images. I asked the director what he thought of my ejection fraction and he very nicely told me he has a lot of experience, but no MD behind his name. The female tech came in and looked at the images with contrast and said I had a fantastic ejection fraction (and with all of the experience of techs, I know they know what they are seeing). So I asked her if I ever did go down to 50% with the last image and she said she'd looked at it and doubted it. She felt the cardiologist who read it didn't have much to go on since my veins are so bad and they couldn't get the contrast in.
So hopefully I get Herceptin tomorrow and this was just a blip. Interestingly, my female tech (Judy) told me that the reason they can't get a good image anymore is because of my left lung. It is in the way. I've had echos before treatment (2) and there were no problems. But I also know I had atelectasis (collasped lung, left) during my lumpectomy. Hmmm....now if only they can always get the contrast in.
I'm feeling so much better about my cardiac function. My feet, hands, ankles and face are still swollen in the mornings, but I think that is still a side effect from all the steroids I've had. I hear they knock the adrenal axis out of whack for awhile.
Yay! Herecptin tomorrow!!!
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Oh, and Jenn, I have the same scars from the jabs in my port, but I am proud of them and it and all it has done for me. I earned everyone of them there scars!
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Pbrain - awesome news!
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