TRIPLE POSITIVE GROUP
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Candy: Needed that today-thank you!
Dragonfly: Happy Birthday-what an awesome way to celebrate!! here's to many more!!!!0 -
Dragonfly--Wow that was awesome!!! Kudos to you, you are so brave!!! I have always thought it would be cool to do that, but don't have the guts!!! You go girl!!! Happy Birthday too!!!!! and hears to many many many more!!!!
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queenie9556 Thanks for your story!!! such great news and oh so wonderful to read!!!0
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Candy...thank you for those great words. Made my day...and many others too!
Keep us updated!!!
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Candy, CONGRATULATIONS!!!! That's great news.
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Candy thank you for your encouraging story! You are right that each day is a gift, we had a dear friend drop on the golf course with a heart attack this weekend, he was only 54. We just dont know and need to always live like its our last day.
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Candy - LOVE to hear your story! Thanks for sharing! Inspiration for sure!!!
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Hi Queenie Thanks for sharing & congratulations! Love your story and it's inspiring.
Carberry sorry to hear about your friend but it sure does put this into perspective. Today was the first monday since Feb 7th that I did not have get TX no H for another 2 weeks!I am doing a tiny little happy dance inside. DH is at work, the weather is cool and calm and for now I am finally still since this whole craziness started. I think next a little post chemo med leftover into the garbage ceremony!
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nmoss - how are you feeling? Any better?
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Hey SK , still retaining water like crazy. The legs are a little better I am walking around and moving through the pain but man do they feel like a ton of bricks. The calves are still burning but I would say there is improvement. How are you doing?
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nmoss - hanging in, but still have the water retention deal too. I was prescribed a diuretic the day of #5 because of swelling in my node arm and stayed on it until I ran out (no refills) in the middle of last week. By Friday when I had my CBC I looked like a human balloon and my arm was killing me so they put me back on it and I have lost 5 lbs since Friday, my feet are no longer round, so I am feeling better but still tired and bleh! I am working on a cookbook project for my MIL's b-day party this coming weekend so I am glad I can walk around - it was hurting last week! I sometimes get the burning muscle thing at random moments, like when I am just sitting around - weird, huh? I really need to get back to the Y and do my Livestrong but my arm is making me nervous and I need to talk to my onc on Thurs when I go for the first Herceptin only tx.
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I am the lasix and it works but I hate that I am dependent on it. Yes Burning muscle this is annnoying. Now that your done with TX are they doing any other testing on you?
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I am on Maxide (Triamterene) and I don't like it either but it was quite surprising when I went off of it I really blew up. I was so uncomfortable. By testing do you mean scans? I had all known cancer surgically removed so as far as I know there is nothing to look for. I had a PET prior to starting chemo for a baseline and it was clear. I also had a CA27/29 prior to chemo and it was normal.
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Ah good, I was curious my onc said no testing until I display symptoms. which I found odd after going through this hell.:)
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I think because they can't detect anything tiny on scans they have to wait for some symptoms. From what I have read on these threads that is the standard of care. Kind of scary though because other than a lump among my other lumps I had no symptoms of BC!
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Same for me...no scans unless symptomatic. Of course, I now have a weird bump on my knee laterally. I, too, had no symptoms of BC. And, it was hell.....
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I think it will be a challenge to wrap your mind around the "watch and wait" mentality. At what point does one relax a bit?
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Hi all:
I alway ask about what tests after and get pretty much the same response...there really isn't much they can test for until something shows a symptom. When people asked me how I felt, I would get a bit angry since I felt fine and wouldn't have even known I had b/c had they not told me. I felt fine and they also found mine during my routine mammo and could never feel the lump.
Special K: We'll be moving back to Melbourne in a month or so and I'll need an oncologist - suggestions in your area? Not so sure about the ones in Melbourne so figured I'd go to either Tampa or Orlando. I'll have all my treatments completed by the time we move, but will still have my Herceptin to finish which should be easy to do in Melbourne.
Arlene
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ArleneA - I had surgery at Moffitt Cancer Center on the campus of the U of So. FL in 2008 to remove what ultimately was a B9 nerve sheath tumor. They are the premier facility here in Tampa but may be difficult to get a doc without a local referral. I go to Florida Cancer Specialists, which is statewide. I am seen by Dr. Wright in the Medical Park office accross the street from USF, adjacent to University Community Hospital. About 8 docs work out of that office. Nice, new office building and the staff there are very caring and knowedgeable. I have no complaints so far.
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Good news today - had my yearly mammo, and all is clear.
(now if I could just trust the mammo - I kind of feel like they are childs' play at this point, since the one I had 6 months before I found my lump on my own didn't see anything. Will feel better after my MRI in Dec.)
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I too am still on Triamterene. We keep trying to ween me off but I still retain fluid but not as bad. Before it was like 8lbs now more like 3-5lbs. I only take 18.75mg (1/2 a pill) and it really helps. I'm going to start to ween off again in a month.
I was told that I'm taking a bit longer than most.
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lago - I am taking a larger dose than you are and now I am super nervous to go off of it after what happened last week. They gave me refills this time so I think they are anticipating it will be a while. Even on it my node arm is pretty much painful 24/7. I have my first Herceptin only on Thursday and I need some definitive answers on what to do about that. Even my skin hurts on my arm if I get at all overheated.
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SpecialK I was told to ween of slowly. Basically go for every other day for a week or so then every 2 days etc. Of course I'm not ready. Some people take a longer time. 1/2 pill is really a very very small amount. Even the pharmacist argued with my NP that I need to take an entire pill. My NP just said OK but told me to continue to take 1/2 even though the directions say take the full because the 1/2 works for me.
So even37.5MG is a small amount. I still think that Herceptin might be contributing too the retention too although they say no. Remember my last chemo tx was Jan 18th. I'm way ahead of you. You might be like me and stay on it for several months.
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lago - That is what I am thinking too - it may be awhile. Seriously, my feet were round. Your exchange is coming up right? Are you excited or nervous, or both?
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I'm sorta neutral because although I'm excited to move forward and get these hard stripper boobs out I'm not looking forward to the downtime. I know it's like 10 days but I feel pretty good right now. Exercising again. Getting things done. I'm going to have to stop that for a while. I'm also concerned about what this will do to my LE. Although it's not bad I've been in a battle with some swelling in my lower left arm since before Memorial Day.
But yes I get my breast cancer boobie prizes this Friday.
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Good luck Lago!! Hope all goes well.
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lago - I second that! I hope everything goes well for you and that your result is excellent. I know it has been a long haul for you.
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lago - I don't know if you have access to a swimming pool, that seems to be very beneficial for my LE swelling. Easy does it swimming that is! When is your exchange scheduled?0
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Thanks everyone. I'm sure the surgery will go fine.
Yes my building does have a swimming pool. I on the other hand do not have a bathing suit. I don't think I've worn one since the mid 90's
But of course the chlorine will mess up my hair color
The other day I was walking all day and it was hot too. My right arm was bothering me but I don't wear a sleeve on that one. No swelling and not officially diagnosed. My arm actually felt great that day after walking around. I just need to keep moving that's all. The 1 hour power walk just isn't enough for me. Now not sure what to do with the left arm but it will eventually go down. It's a lot better and not near as numb as a few weeks ago.
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Good luck with the exchange Lago.....hope it's smoooooth sailin'!
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