Calling all TNs
Comments
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Thanks minxie.
so glad to hear that you are three years out. I know how you feel about the ageing thing.
Lots of love.
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"I think the aggressive ones like TN grow so fast that they do hurt."
Exactly what I was told. Mine hurt before *anything* was done. In fact, my cat stepping on it was what made me (literally) sit up and take notice.
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Hi all,
Haven't posted in a bit....packing and getting ready to move...mixed feelings about it all. Have been busy with work but return to the surgeon for 6 month check up tomorrow. Hope all is well. I expect it will be.
I have breast pains post radiation and still a lot of anxiety but I try hard to get rid of it. I listen to a download by Belleruth Napersack...you can download one 17 minute tape for free on her website and it is very calming.
Today we are having our daughter and son in law for dinner.
Feels very strange to be in a house where we raised our children and now almost nothing is in it.
Love to all...keep posting and charging forward.
Thinking of Laura and Suze35 a lot and hoping they are getting some kick.... .delete... treatment for this. Want so much for them to beat this.
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I felt an electric like shock on the tumor site; I touched the location and walla! there was a tumor. I wouldn't have caught it as soon if there wasn't any pain coming from it. From then on (before tx began), I felt the electric shock sometimes, but a dull pain and tenderness all of the time, and even more intense pain when stressed out. Since tx began, I don't feel those pains anymore, but an array of others from the treatment. Yes, BC can definitely hurt! I wish docs would quit telling people that it does not. I think some people put off getting a painful lump checked out because they have also heard that BC does not hurt.
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Bernie Ellen,
I still have lots of pain in my joints and ribs - of course I'm still on chemo - but had it before I started this trial. The trial nurse told me that often the pain from the chemo can last a year or so - and on facebook, on the TN foundation page, several women said they have had it even after a year off chemo. I try to use the 2 week rule - if something is constant and unexplained, I let them know about it. I had a bone and CT scan in October because of my rib pain.
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My tumor hurt too which made me hopeful awaiting diagnosis as I was always told that BC did NOT hurt....lies and deceit!!
Maggie
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Wow Minxie..your dh creeped on you? At first my DH and family wondered why I was on here..now...they seem to accept it..I even showed my DH the pictures of the cats..and he was actually interested...He doesn't want to hear about our cancer related stuff but that's ok...this is my place...not his...
Wow 3 years out..that is soo awesome! I hope to post 3 years very soon..counting the days.
Shout out to LJ and Suze..miss you ladies..
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wow why did he creep? my hubby knows I get on here, but he never really asks me anything.
I find alot of strength from coming here. This is our place. Only us can understand.
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Titan, i'm not sure, it's AC every 3 weeks, I'm assuming so, i'll ask this Tues i have my onc appt then. They never mention the density.
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Thanks Christina
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Bernie-I have had aches and pains after chemo. I had weird arm pain before I was scheduled for a bone scan, nothing showed up and the pain went away shortly after.
I wonder how much my boobs weighed that they took off with my bmx?! I haven't stepped on the scale since surgery but kinda curious if I lost weight! My whole top area, collar bone, arm pit area all looks much thinner after surgery. Wish he could have done my whole body:). I think bs was very thorough on getting as much breast tissue as possible. 4 days post surgery and still getting quite a bit of fluid from the drains, did I mention I hate the drains?
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Hi bak, thanks for that. Hope you heal well from the surgery. thinking of you.
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Bernie - I feel like I've aged 30 years, it takes a good 5 min after I wake up and move around for my limbs to unstiffen, lots of aches and pains, some in my left shoulder, they go away only for my right arm to start getting achey, etc.....
I never felt any pain with my tumor, I went for my very first regular mammogram and they discovered the tumor, I think I'm still in shock sometimes. I know everytime I catch a glimpse of myself in the mirror I always just say WTH happened????
Hubby hated this site when I first found it, he didn't understand it was my support group, thought it was all doom and gloom - is finally starting to realize that I can talk to people who know exactly how I feel and supports me now.
Went topless for the first time to Universal Studios, even though I have a very sparse buzz but it felt amazing and for a few minutes everynow and then I felt normal and forgot about BC.
Hoping all is well for LJ and Suze35
Happy Monday Ladies,
Heather
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Laurajane, Suze - How are you guys doing? Please write if you get a moment. We are all waiting to hear good stuff from you both. Hope you are not writing just because you are so busy celebrating the season. Have a wonderful holiday season with your families. We are all thinking about you.
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Hi Heather, i know just how you feel. I still don't think it has sunk in with me and i had my surgery in March. The problem is it's everywhere now but it's so difficult to believe it's happening to you.
My Dh know's that these groups are my lifeline. He works abroad four weeks on and then four of. I know he talks to the lads at work and that helps him.
Good for going topless, i have enough now to get it coloured. Growing back snow white.
Take care
Bernie
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Well, when I was first diagnosed my husband did all the online research because I was too terrified. He came across this site and has found it very useful, and was glad when I started using it. Except when I obsess over the worst case scenarios.
I didn't think he came here much over the past year. But apparently he did, and read a post where I described something that happened that morning and he immediately knew from the situation described that "minxie" was me.
At that point he should have stopped, but didn't. He searched for and read more posts by "minxie" and came across one I never wanted him to see.
So I wouldn't say he "creeped" but I wish he wouldn't have persued it. Though I do know if the situation was reversed, I would have trouble reining in my curiousity as well.
We have reached a tentative peace. Though I will not be posting anything here of a personal nature again.
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Heading for a second opinion from another ONC. Hoping he sees my side of things instead of thinking his opinion is all there is.
KS- Awesome picture and thanks for sharing it. I love pics like that. They always brighten my day.
CatWhispurrrer- The tumor doesn't hurt but it can certainly sit in a position where every nerve in the area is effected. I can't believe all your dr's are the tumors. What about the surrounding tissues they effect? I think sometimes the medical profession has gotten so secular they forget there are other things going on outside the cuts they want to make to get the tumor. Yes the area hurt around my tumors as they were swollen so bad that you could feel them. Hang in there.
Titan- I have the most absurb cats. Nothing pleases them. I have purchased the grass time and again, and they look at me like I'm stupid. It sits and turns yellow and I wind up swearing I will never purchase it again. But I do and they remind me and I throw it away. Vicious cycle they enjoy watching.LOL
Hang in there naan - I hope it's not too severe on you. Sorry to hear your going through all of this.
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Thank you all for thinking of me - it has been a rough week, but I'm hanging in there!
I'll write more tomorrow, but I officially flunked my clinical trial, so I'll be starting Halaven (eribulin) on Wednesday.
Have a great night everyone
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Susan0 -
(((((SUSAN)))))
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Minxie..wonder if your DH saw our page on sex?? Haven't told my DH about that conversation yet..waiting for the perfect time..ha ha...
Suze..have read some threads on here about Havalen...sounds like its good stuff..I hope, hope, hope it does it for you..
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((((Suze)))
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Thinking of you tonight Susan. ((((((((hugs)))))))
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Thinking of you, too, Susan, and sending you all the positive energy I can muster!
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Suze- so sorry to hear you're having a rough time. Sending you good thoughts and a warm hug.
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Suze: So good to hear from you - I'm only sorry it wasn't better news with respect to the clinical trial. I've seen some positive stuff about halaven - fingers and toes and everything else crossed for you. Healing vibes, warm hugs...
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(((( Suze ))))
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Good morning all!
First, let me say that I've been enjoying the lighter side of our TN thread this past week
- I'm so glad we have this place to talk about some of these more, *ahem,* intimate issues.bak - great news on getting surgery over and done! I'm keeping fingers crossed for your pathology report, you'll get that today, right?
Heidi - MacFry (I probably got his name wrong, lol) looks all ready to go for Christmas
. Have him send some of that enthusiasm my way!!~~~~
So unfortunately, the clinical trial did nothing for me. We knew it was a bit of a gamble - I am resistant to Taxol, which is all Abraxane really is, but I did hope the experimental drug would be helpful. I chose to do it now, knowing that I would be risking some progression - better at the start of the treatment was my thought. But boy, this damn cancer moves fast! I am very glad I did not let the standard 8 weeks go before a scan each time - as I've had "moderate" progression all around.
Both my MO in town and my MO at Dana Farber are very enthusiastic about Halaven - it is well-tolerated, and shows a lot of promise for resistant tumors. Our goal is to get my disease under control - obviously for as long as possible - and then when I do have progression, I can look for another clinical trial. Right now there are some new Parp inhibitors (separate from the ones we all know) that we are keeping an eye on for the future. I also have a few more standard chemo choices - 4 or so - that we can try.
Physically it just sucks because I am starting to get really bloated around the mid-section, ugh, and my cough is rough. Morphine keeps it under control, but also keeps me in a state of perpetual fatigue, and so all the things I'm trying to get done - photo albums, cross stitch, letters, get pushed to the side. It is a tough catch-22.
On a positive note - while we just don't know what this chemo will do, based on the recent studies we are hopeful it will knock the cancer back and bring me some physical relief. My doctors seem to think it will - so I am going to go with that
.I'm still fighting this like a girl, and will do my best not to disappear on you guys! Have a great day everyone!
Susan
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Love ya Suze!!!! Take care ((((((((HUGS FROM US ALL))))))))))
Any updates on LJ??? Worried.
What a family we have become.
Since we have lurkers I'll stop all the sex talking
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Hi Suze, thinking of you, lots of love.
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Hi Ladies,
I have recently joined your "family."
age 52, diagnosed 11/11/11. I am in that waiting stage - waiting on the results from the BRCA test and waiting for bilateral MRI. Surgery options will depend on results. Because of (at least 1) positive lymph, nodes will be removed and chemo and rad guaranteed in the future. The only definite is the diagnosis...
I'd love to hear ideas on how to keep things in focus until I have a plan. And yet, I realize waiting will probably not be the hardest part of this fight!
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