Calling all TNs
Comments
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Oh Annie...sorry your job brings in your face all the time...thats not easy I'm sure...remember you are YOU and not them....I've never envied our oncs and nurses to deal with this every day...they are special...and so are YOU..don't forget that...
Loafer...I had taxol which I think is similar to taxotere..so yeah..you will have the aches and pains in your legs...for awhile....maybe a couple of months or so...I guess I would go a week and think..ok..is it better now than last week..and usually it was...I know I yammer alot about walking and exercise..but have you tried walking a bit? sometimes a little movement gets the kinks out.
That said...sometimes if I sat too long I had a hard time standing up and had to walk to get over the pain...getting out of bed in the morning was the same thing...I still can't sit for too long...have to move around alot...the same with riding in a car...I need alot of breaks..
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Kathy - I love your photos!
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Thank you, you wonderful ladies for your support and love. I must admit I am finding it extremely hard because now they want me to talk to people going through it and although I can do this I am hardly out of the woods myself and I find that bit hard especially if they are TN and then going through all the chemo with them, it feels like I am still on it myself. Still I guess if I can help them even a little bit it might put their minds at rest.
I get pains in my legs too Titan but I have put this down to my age. When I get up from sitting sometimes one of my legs is numb and it takes a few steps to come right. I've probably got OA as well by now just to add to my woes.
On a lighter note its still lovely weather here so thats something and there is only two days of work left.
Have a good day ladies, keep warm and thank you once again for all of your support. Annie.
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hello cocker -i notice a lot of us the last 2 weeks are a bit all over the shop, cried myself stupid on saturday for no reason, wasnt feeling said or in pain just lost the plot.
guess we forget that this demon takes so much out of us and i think we forget that even prior to bc we had good and bad days but now with bc its all so concentrated.
so with that i really hope you are coming through and the darks are passing.
luvs
xx
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Annie - if you are not up to talking about your experience yet - don't do it. I was asked to speak at a fundraiser right after my 1st treatment ended. I couldn't do it. It was all too fresh.
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I had a little arguement with my MO - I asked when I would have my next scan, he indicates that he won't do any blood work or scans unless I have symptoms. I feel he has no preventative measures lined up. Not that I really want to have scan anxiety. It ended with me saying I didn't agree and whatever and him saying you just don't like my answers. We actually have a good relationship/partnership but all that really pissed me off. I was crying even before going to the doctors office yesterday. Very emotional this time, not sure if it is bc it is the half way point for me or what.
Headed back for my daily fluids and the bone pain shot...boo.
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jenjen - many MOs feel as yours does - no scans without symptoms. By blood work I assume you mean tumor markers? I understand you feel worried about this, but when you say you feel he has no preventative measures in place, remember that scans are NOT preventative, they can only show what may or may not be there. It is hard to accept, but I have read over and over on these boards that finding mets earlier rather than later (which is what you are aiming at with scans) has no bearing on length of survival. But at the same time many people like the reassurance that scans can provide. No doubt lots of others will weigh in on "to scan or not to scan" and there is no right or wrong. It is something you and your MO have to work out and be comfortable with. For myself, I am 3.5 years out from diagnosis and have not had a single scan then My MO is in the same camp as yours - and I am happy with the situation.
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Glad to read here that "chemo eyes" AKA tears sometimes go away on their own. My opthamologist told me he would do surgery on the tear ducts to help the situation when my blood tests are good. I'm putting that off as long as possible.
Putting off ANY surgery as long as possible. Also putting off my overdue colonoscopy. If it showed cancer cells, I don't know if I'd have the strength (emotionally) to go through chemo again. Might just give up and die. If my DH saw that comment, he'd have a real problem with it.
So many people have no idea what TN is. I don't bother to explain, just put on a happy face for them...but it's hard not to feel NEGATIVE (pun intended) about the whole situation.
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Hi all,
I am going to post this message on many of the threads please help me share it as I found out about it here.
They will send a free head wrap/scarf. It took about 4 weeks but the wait was well worth it. I like the one they sent me better than any others I have. They even have a little fairy with wand in crystals on the edge of one of the tails. Too cute! They do accept donations too of course but it is absolutely free even the S/H is paid by them and they send a best wishes card signed by the staff. Just overwhelmingly generous and compassionate.
Thanks, Sheryl
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Jenjen - I can tell you that his answer to you is very common among oncologists, especially when dealing with TN. At one of my first 6-month checks, I had one area of my blood that was elevated (December 2011). Due to this, he ordered a PET scan. So I had the anxiety of the scan, and the wait until results, only to find everything fine (thank God!). He no longer does blood work at my 6-month appointments. Not specifically because of what happened in my case, but because of findings in national breast cancer studies. Most likely, our cancer would present with other symptoms if it reoccurred, which would send us to be checked, not because of our blood work. I am definitely on board with that approach. Less stress is good! It just takes some getting used to.
Kathy
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Sheryl - I received a Good Wishes scarf in the summer of 2010 when I was doing DD AC/T. It really was beautiful. Last summer our neighbors were having a party and I noticed a lady wearing a scarf. I found out that she had just started chemo so I got my scarf and gave it to her, seemed the right thing to do. Now I could use one...maybe I'll just order one. I think I'm going to be bald for a very long time (brain radiation).
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jenjenl,
I hate to be a downer but the way insurance is now days if there are no symptoms or cause they won't pay for it. There is very little they pay for prophylactically. Usually mammogram and we all know how that worked out and generally a gyn check-up. Ask him is that is why. If not and your insurance will pay get a family doctor to order it and have results to him and if anything suspicious then get a copy to MO or get a new MO. This is your friggin life we are talking about here. Just because he has MD after his name does not mean it stands for MEDICAL DEITY, sometimes they need to be reminded that you hired them.
Sheryl
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Thanks for the link, Sheryl. I am way past needing scarves as my hair is all grown back now. But it is certainly a good link to provide to the newbies. While there, I also found a link to the Triple Negative Breast Cancer Foundation (http://www.tnbcfoundation.org) - it mentions that March 3, 2013 is the inaugural TNBC Day. It also has links to guides to understanding TNBC, so others MAY want to check it out too.
Doreen
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Doreen,
For some reason I don't care for the site for triple negative foundation. I don't find it really user friendly and get so much more from the threads here for TN. Glad you posted it though someone else may find it exactly what they need.
Sheryl
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Jen Jen- Gill has made all the points I would have. I'd also add that you don't want the extra radiation. You will feel a bit abandoned when your treatment is over and you aren't seeing doctors all the time. But then you'll get back into life and thevfear will lessen. We're all holding your hand. You've got this!
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Luv - wondering how you were doing with your latest treatment - nice to see you on the board.
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Kim - I had carbo #2 of 3 today and it went well. They finally gave me Emend so hopefully it will solve all the nausea problems. I will have #3 next Wednesday then we are leaving at 3:45 am on Thursday for Kauai...a last minute decision that replaced the trip we were contemplating to Hilton Head. It just wasn't going to be warm enough and there would have been several days of rain. My DH said let's go to Hawaii and we were able to put the whole trip together in 24 hours! This will make up for the trip cut short in October when my mom had a brain hemmorhage and we had to go home early. I am thrilled to be able to do this!
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Luv- I have a blue scarf I received free from Good Wishes and I have never worn it. Scarves just weren't me- I wore my wig. I'd be happy to send it to you. Just PM me!
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luv...we are plannng a trip to HHI this summer....after Hawaii now..go to HHI this summer...! We can do some shopping in Harbor Town, get some sun...and DRINK!
Liv..and all..I hear you on the emotional stuff lately...a friend of mine just had an lx today...turns out there was a bit more cancer than expected..maybe has traveled to the nodes...and her incision is pretty big...I'm just freaking for her...the tumor was small but has spread to the nodes...no pathology yet..but I'm thinking she maybe in the tn club with us. She really doesn't want to know anything...which freaks me out because I wanted to know and still want to know everything....never been one to just do what the docs say...i have to know why and what benefit it will be and what other alternatives there are...I found most of my info here....I still think that we as patients need to be informed as much as possible...I did do everything the docs said (except for a port)...but at least I knew the why of it...
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Jenjen..My MO says the same thing. You have to have symptons before we can do a scan. I asked my MO how will I know and she said you will have a pain that you have never had before. I feel I'm ok with that as I'm so ready to move forward with my life.
Sheryl..I don't care for the TN website either. Their discussion boards scare me. So I just stay here.
Luv..Enjoy your trip. I want to go there next year when I'm better. I've never been to Hawaii. Life is to short, so I plan to see some sites.0 -
Liv - sometimes it doesn't just rain it pours. I have just heard my beloved sister has died in England. All I keep doing is crying for her and for me!! Some days lately are just crap.
Re scans. We don't get them here unless an issue arises. I think I would be able to tell fairly straight away, as I have always been well, if something was wrong. Plus I don't think I want the anxiety every time of waiting for results. I do see my breast surgeon every three months and if I do report anything going wrong such as my port blowing a fuse I think they would be onto it pretty quick. But still if you feel you need a scan I think I would be talking to my onco and letting them know you would feel better knowing you were having one. I guess it does make you wonder just what is going on inside these bodies of ours because I didn't feel unwell when they found my cancer on mammo so is there a chance I might miss something important.
Luv - good to know you are about to go to Hawaii. Wish I could come with you and Titan and shop until I drop. Just don't have the inclination or the energy today. I'm all cried and energied out.
I don't look at the links anymore. I'm sick and tired of seeing it written 'break through in TN'. I don't want to wait I want it now for all of us. What the hell is taking them so long to get going. I just wish they would get their finger out.
I feel like a crabby little shit today and can't even summon up a smile. So will say goodnight to you lovely ladies and hope tomorrow brings a better day, at least its Friday. Big hugs Annie
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I just keep thinking what a complete load of bollocks cause real life aint like this. Hope I feel in a better mood tomorrow lol
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aww annie = ((hugs)) what next, no more for you, you are certainly having your time tested right now.
so sorry about your sister. just seems you are having one thing after another.
loves and thoughts. xx
titan i'll come with you great holiday food, drink shop, food drink shop.
yes that would be nice.
lucky luv, enjoy
xx
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Titan - you let me know when you're going to HHI. My DH loves to play golf, I love the ocean and shopping. We'll see if it can work around my treatments. I figure by summer I can get some flexibility in my cycles.
Annie - this is for you:
My favorite hibiscus picture from Kauai in May 2010
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hibiscus are so old and so beautiful always reminds me of my beautiful gran, she was a picture always in the garden.
xx
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Annie---I am so deeply sorry for the loss of you beloved sister. You deserve a good cry so go ahead. We are always here to listen and hopefull give some comfort. All your TN sisters are here!
xoxo Maggie
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Annie: sending you positive mojo and a smile and virtual hug. Sucks when you feel taht way. And I agree about the 10 things you can do.... bollocks. Except #2 - only NOW is important.
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Annie -- I am SO sorry to read about your sister. Sending you lots of hugs.
Luv -- Enjoy your trip!
For those talking about scans, my MO does not do scans either. He says it is a quality of life thing -- the anxiety it causes can be debilitating. He had to release one of his patients because she was so anxious seeing him for a check-up, he released her so that her primary care physician can do the monitoring. I do understand the anxiety after having to have a biopsy last week. Turned out okay but I sure was a lot more scared than I thought I would be. My MO also says to watch for unusual lasting pain -- two weeks worth -- and that having a scan versus watching for pain will not change the outcome. Meaning that watching for signs/symptoms, your outcome will be as good as if you had a scan. Sorry, feel like I am talking in circles here. O_o
That said, I am glad to be in a TN radiation study as I feel I will be monitored a bit longer and possibly closer. Ending treatment is really kind of scary -- almost as scary as beginning it.
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My PET/CT scans don't cause me anxiety. After getting a diagnosis of mets, I expect the scans to show something not good. The day they show regression or NED, then I'll get mighty excited!
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Oh, Dear Annie - I am so sorry for your loss. It must be difficult living so far from her family at a time like this. I'm glad you have your own dear ones to help you through this difficult time. I lost my brother a couple of years ago. I felt like a bit of my childhood died with him, but then I realized if I told my own children all my stories, they would live on. Sending love your way...
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