TRIPLE POSITIVE GROUP
Comments
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Dance,
Ugh. They punctured my lung during port placement too! It appears to be a bigger possibility if you are small on top...narrow, whatever. Even though I had a juvenile port, they still flattened my tires.
lung totally collapsed. They had to put in a chest tube (the day after surgery) and I was conscious for that!! That hurt worse than anything so far....YOUCH.. And dragging that tube around for two days on an iv pole was no fun!
All that to say, you'll make it! Hang in there! A couple days and your lung should pump back up.....
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Thanks everyone....about the heart, this is what I'm being told.
Women who get their EF back tend to do it within the first year. If that doesn't occur, there is a "significant chance" it will never come back. Blah blah blah, something about damage to the heart at the cellular level, blah blah blah...mostly I was just thinking...COME ON HEART.
I think I'm going to ask for another cardiologist. This one says there is nothing he can do for me...I don't think I'm going to accept that.
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TonLee if he says there's nothing he can do for you then I look at that as an open invitation to see if a different one can.0
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I plan on doing that Lago. Thanks.
He says there is nothing he can do because he gave me the weakest dose of the med that starts with an L, and I couldn't tolerate it. It brought my BP down way too low. He said that was his "weakest" drug and if I couldn't tolerate that...then I certainly couldn't do the more potent ones.
I dunno if I'm buying that....so I'm going for a second opinion.
Also the fishoil and hawthorne for the last 4 months haven't done a bit of good....
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Ton Lee - wow, you 2!!! yes, she said if u r thin, it is a higher likelihood.
your ENTIRE lung collapsed? OMG. Thank you so much 4 sharing your experience. I've heard the chest tube is terribly painful. ugh! looks like i will escape that. thank god!Spending 2nd night in hospital. Off oxygen now, 100% O2 sat at rest, dropped 2 86% walking ~ 100'. crackles and intermittent pain w/breathing. all around improving, just tired and uncomfortable.
i sure do hope u get improvement w/your heart tonlee!
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Welcome, Teresa. Let us know how the visit with your oncologist goes; hope you get a good one!0
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Geewhiz....I was thinking that exact thing today, and also the little cirle things around the nips. He did not give me tips on how to get that off and taped back on.
Also, my compression garment that I have to wear for a month 24/7, although he did say I could do spanx also, is black.Really....i cant wear white jeans or light colored tops. Why wouldnt he order it in a nude color. I plan to have that conversation with him.
He is funny tho. I made my husband tape the post op conversation so I would have all the details, and he went on and on about the third nipple he installed in the middle. Funny guy.0 -
lol fluff!!! your onc is a hoot!
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Dance,
Keep us posted. The lung thing can be a real bear....they were "hoping" I wouldn't need a chest tube when they discovered it a few hours after surgery....but the next day, flat tire...If they decide to go the chest tube route with you ask them to put you out. They gave me something in my IV but I was awake and felt it.
Here's what to expect if it is required. Don't read this if you freak out easy.....lol, I just find it comforting to know what to expect and I didn't for this....
They make an incision between the ribs at the bottom of the flat tire side, push fingers in the incision to seperate the muscle, then shove a tube in there and fish it up to the collar bone so it can suck out the air that keeps the lung collapsed (at the top). Not pleasant. I recommend being unconscious for it. Demand it if you must have a chest tube.
Getting that thing out was also uncomfortable, and they didn't give me ANYTHING...they just said, "Hang on" and yanked that sucker out. Ouch! But it was such a relief to have it out. I didn't know whether to hug or slap the tech.
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Thank you Ton Lee - I'm one who always wants to know what to expect and how to prepare. I've heard chest tubes are horrific...how barbaric that they would cause you so much pain when modern medicine should be able to prevent it. They said my x-ray looked a bit better this morning again, and agreed to send me home. I will be re-xrayed in just over a week. She said it takes time to resolve. Fingers crossed that it doesn't worsen. I am going to take it EASY. I'm still desaturating with walking, but got to about 250' today before the alarms went off.
Happy to be home!!!!
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Hard,y need pain pills. Only when I move. Lol. Really though, justtook one now, but other than that only had one last night. I think the compression garment is bruising my ribs. It really sucks things in. I thouht I might order one one line in a an color so I can switch, but they are a h ded bucks. Think I will call the ps to see if he can get a better deal.
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Fluff if you do get a spanx type garment I found it most comfortable to wear inside out if it had seams.0
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Hils I was reading a few pages back and you asked about working during TCH. I just had TCH #3 and I am still working full time. Days 3 - 8/9 have been the roughest and I can count on needing to make them short days or just staying at home those days. I get treatments on Mondays so that works out to be Thursday through the following Monday for me, as being the worst days. I think for my future treatments I'm going to just take the following Thursday and Friday off to rest. But yes, you can possibly continue to work during all this. There's no way I could do this otherwise.
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Thanks Christina for that I was hoping that could be the case (I know that everyone is different) but I am hoping that I will be able to work through this time as otherwise it could become quite interesting on the finance front.
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Looking like that Her2 targeted cancer vaccine trial in San Antonio is going very well!
"A vaccine to prevent breast cancer's return in women with a history of the disease has triggered the desired immune response in early research.
The vaccine under development is aimed at preventing recurrence in women who have a form of tumor known as HER2-positive, according to researcher Dr. Diane Hale, a research resident in general surgery at Brooke Army Medical Center at Fort Sam Houston, in San Antonio.
She is set to present results of the study on Monday at the annual meeting of the American Association for Cancer Research in Chicago.
The vaccine, known as the "HER2-based peptide vaccine AE37," is designed to harness the power of the patient's immune system, based on its reaction to a cancer-linked peptide (protein).
"The theory is that once you form that [immune] response to the specific peptide, if the body has a recurrence, it will recognize that cancer as a bad thing, a foreign thing," Hale explained in an association news release.
The study is a phase 2 study, meant to evaluate the vaccine's effectiveness and any side effects. Phase 3 studies are needed before the vaccine could be approved.
The science is early, Hale stressed, and it will take at least five years before the vaccine could conceivably be available if ongoing studies bear out."
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ashla, I am planning to participate in that study at Wake Forest. My onc is submitting all the required paperwork now and if I meet all the criteria, I will start in May. Means a lot of driving or flying and they do not cover expenses, but I think it is one way I can give back and maybe also gain some benefit.
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fluff - my friend the histopathologist did my HLA typing last week (she drew my blood in her kitchen and then we went out to dinner, lol!) and I am an A2+ so I would fall into the arm that receives the GP2 peptide vaccine and CSF, or CSF alone. It is interesting that I would go in with at least that knowledge, it is good to have friends in the right places. I am still deciding about whether or not I want to undertake the expense - I don't have hotels to worry about but I would have to fly every time. I need some dental work done that will be mostly out-of-pocket, and I also want to add more extensive lipo to my FG as you did. It would be a lot of $ if all I get is the CSF, but it is in the name of progress on the Her2 front as well. I need to assess how noble I am feeling.
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fluff/special k
what is the study called? i am going to look into it here in canada
thanks
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rozem - here is the link, but the only international locations right now are Greece and Germany.
http://clinicaltrials.gov/show/NCT00524277
I don't know where you are in Canada, if close to Washington state, and the location there is military, so don't know if you could get access.
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I thought Greece or Hawaii would be nice, lol. PS lipod out 1800 ccs, i think. Special k, I am sending you a pm
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fluff - I know - Hawaii or Greece does sound much better! I PMed you back.
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When getting lipo along with reconstruction /exchange, that is not something covered by insurance, is it? Would a PS at a cancer center do more extensive cosmetic stuff that isn't related to the reconstruction?
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Shore, the lipo for fat grafting is considered part of reconstruction on my insurance. Extra lipo may not be covered. I would talk to your PS
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My lipo was covered both times. 1st time was with exchange. 2nd time was with nipple recon.
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Would love to participate in this trial but I'm not sure I qualify...on the margin with timing since end of May is 6 months for me....Need to check with my onc. I could probably manage the NC trial...I may be reading it wrong but looks like you need to be Grade 3....but I think other factors over ride the Grade 2. Need to read it again.
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Im disappointed my PS didn't offer it (lipo or fat grafting). I had exchange Wednesday & will ask him about it, but I think its too late now. My weight is good - better than before chemo, but it would've been nice to get rid of some stomach flab in this process.
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shore - not all PS do fat grafting, so that may be a reason it was not mentioned.
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SpecialK, does the lipo usually get done only with the fat grafting? Or do some get lipo with reconstruction even if their PS doesn't do fat grafting?
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From what I've been told the lipo is done the same time as fg. If your ps doesn't do it consider finding a ps who will. It is considered reconstruction so insurance should cover it.
I saw my ps today. I am having fg done sometime this summer. I had my exchange last week. Right now the new breast is just weird. It takes a while to settle down. I'm larger than I wanted to be so in six weeks the ps is going to talk to me about putting in a smaller one. I heard if the implant is smaller with fg that it feels more like your own breast. Right now it feels like a prothesis under my skin and the sad thing is I can't take it off like you would a prothesis. It's heavier than your own breast. I kept my left breast so I have it to compare with. I hate that I had to lose my right breast...still greiving
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evebarry I believe silicon is heavier than breast tissue. I say my new boobie prizes add at least 2lbs to my weight. Granted I did got bigger/ fuller.
Also note if your PS is take fat for fat transfer only it's only a little bit. You will not notice any reduced size in the donor sites. If you want lipo you must ask and they charge for that… and you will have more discomfort afterwards.
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