Calling all TNs
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Forgot my other news ladies. After almost 2 mo of fighting I have gotten my insurance company up to paying 80% of my BRACA testing (were only going to pay 50%). I spoke with Myriad today, and asked that since they accept 80% from Medicare, would they please accept this as full payment. They wouldn't give me a definite answer, but said to call back when I get my bill ( $808.00 ) and they will see what they can do. I just made it in under the wire because my sample expires on 7/7. Actually, I hope they make me pay something, because I want to appeal my insurance companie's decision (Catch 22, you're not allowed to appeal, until you pay the claim). I believe, that by their own rules, they are required to pay this testing at 100%, and I'd like to be able to make a difference for my sisters that will be facing this in the future.
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I'm 28 and recently diagnosed with triple negative BC. The problem I am having is with the chemo treatments I'm a horribly sick and unable to function for days afterward. I had a partial masectomy and my lymphnodes were clear. I'm considering stopping chemo and just becoming more healthy. Also what's the 5 yr thing are they saying we only live 5 yrs after treatment?
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Congrats, kathyrnn! Score one for perseverance!
ldbarne, welcome; 'though sorry you have to be here. Before you stop chemo, scroll up a few posts and read LuvRVing's post. TN can be scary, because drugs like Tamoxifen, etc. aren't available to ward off recurrences. On the flip side, chemo is very effective against TN.
I'm not sure what you mean by the 5 year thing. No, many TNs survive and thrive. I've heard it explained, though, that because TN is so aggressive, IF you're going to have a recurrence or develop metastasis, it will usually happen in the first 3 or so years after tx. In fact, by 5 years out, our rates of recurrence actually drop below that of hormone-positive BCs. But we, like all BC patients, have no guarantees and can relapse 5, 10, 15 years later. Most people think that if you've survived 5 yrs after having cancer, you're considered cured. That does not hold true for BC, I'm sorry to say.
ETA: Have you told your oncologist how much trouble you're having? There are lots of drugs now to manage the side effects, so you don't have to feel so sick and discouraged. This is your best shot at stopping this thing in its tracks right now. And I don't want to frighten you, but clear lymph nodes are no guarantee that some stray cancer cells haven't escaped the breast. They can go into the bloodstream and bypass the lymph nodes. Chemo is your best insurance of zapping any stray cells that may have gotten out.
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ldbarne, which chemotherapy regimen are you on, and what side effects are you experiencing? Side effects do vary, depending on the individual and the chemo, and your medical team can very often provide help or alternatives to help you.
Here's a link from the main Breastcancer.org site that discusses the common side effects, and you can also look there to find your specific chemo. We're glad you found this wonderful community - we're here to support you though treatment!
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Inmate - woohoo what fabulous news - dance with NED!
CS, please stay, I look forward to your posts daily!
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Good Morning Ladies
Thank you for having me on this thread. I put my big foot in it big time and hurt someone with a thoughtless comment but I have apologised and we are now friends again thankfully because I could not bear to have her in my life. The only thing I could think of was to get off the thread I was so mortified. So now (as Titan would say, dang it) you have me back. Notice I did not say "bloody". I am turning over a new leaf but not sure how long it will last lol.
Its Saturday morning and I crawled out of bed at 10.30am. Disgusting I know and I haven't even got the excuse of tiredness through having taxol this week cause I didn't get it, but we have had someone off sick at work so I have been typing morning, noon and night so I am just about knackered with my gammy hand. The old fellar is so serious about opening a cafe at the airport I didn't even get my usual breakfast cause he is knee deep in equipment prices. Never mind about my stomach. This could be the start of hunger pains for me.
It must be a nightmare for you ladies with insurance issues. I don't think I could afford to pay all the excess that you seem to be landed with. Do you have public hospitals that you can go to for treatment that is just as good?
Today I might do some cleaning ugh before I go back to typing some more. Today it is sunny albeit cold, so better not complain.
Kathrynn - you are so funny "whip out suitcase" I haven't got the energy to whip out anything at the moment, must be lack of food!. And I just love your "Gigglesnort".
Jan69 - wouldn't that be just wonderful, lunch at the old fellars. My boss came to lunch yesterday and anybody else would give something like sanwiches or rolls with a cake or something but no not the old fellar he cooked her garlic prawns. She ate every bit and raved over it so his head was swelling for the rest of the day. I'm all for keeping things simple.
Idbrne - I am so sorry you are sick with the chemo, nothing worse in my book. Has your oncologist given you adequate sickness medication. I was given Emend and didn't get sick at all. Before you consider stopping chemo talk to your oncologist. Nobody has to suffer through this now when there is so much they can help you with. Remember to hydrate as much as you can. I know its a chore but it really does help. You are so very young but you have a good prognosis with no lymph node involvement so who knows how long we have. First things first, talk to your oncologist. Thinking of you and sending wrm hugs.
Thank you once again ladies for having me on this thread I don't know what I would do without any of you. Have a good day. Annie
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Kathy - before you pack up and move to NH (not that I would want to discourage such a wise, wise decision!!!) here are a couple points...
I was living in the Kansas City area when I had my first occurrence. My first oncologist (actually TifJ and I had the same guy) ordered the Oncotype test because I was ER+ at 8% and my sentinel nodes were clear. He really didn't want to, said it wouldn't make a difference in his recommendation, but I was insistent. I am a Taurus, there is not much point in arguing with me
The Oncotype test came back as TN (I was just a couple decimal points short of being ER+) and thus the high recurrence score.When I turned down chemo and finished the Mammosite radiation, he asked me if I would agree to Femara and I said yes. At that time, he started doing the labwork including the CA 27.29. I think it was that practice's standard of care...TifJ could probably answer better because she's been with them for a while now. His plan was to do one every 3 or 4 months. But the second one came back elevated. We waited a month and retested and it was higher. Then all hell broke loose!
When I started going to Dana Farber in Londonderry, my local oncologist gave me the "not our standard of care" response. She said it's not much value because you don't have a point of reference. I said I had 3 results in my history, so I definitely had a point of reference. She also recognized that I had special circumstances and so that took care of that problem. The CA 27.29 became standard of care for me.
I had a similar discussion about the PET/CT scan and came to an agreement that we would do one only if my CA 27.29 was above normal. In April it came back at 55 and now I'll be having those scans on a regular basis...unfortunately.
Keep in mind that your stage 2 diagnosis is different than the stage 3b that I presented to Dana Farber. I suspect that standard of care may be slightly different for different stages, and 3b has the highest percentage of likely recurrence/mets.
All that said, it's just a blood test. They're probably checking CBC and CMP, so what's another tube for the tumor markers. Be insistent. It's your life, your worries. I doubt your insurance company will balk at paying for it. I guess if DF wouldn't do tumor marker testing, I'd go find an oncologist or PCP who would. Dr. Harris, who is the chair of Radiation Oncology at DF, and directed my treatment, said he was glad he wasn't my MO because he knew we'd butt heads over type and frequency of follow-ups. Nicely, of course!
Maybe the fact that my mets were discovered when they were tiny won't make a difference in long-term survival, as the statistics would indicate. Only time will tell. But I've defied every statistic so far, and now it's time to defy them in my favor, for a change! You can't convince me that finding little mets early isn't better than finding big ones that have festered for years.
Ldbarne - it's horrible that you are dealing with breast cancer at your age. And TN is scary at any age. But rest assured that there are many, many long term survivors. There are discussion threads on this specific forum, I think, where women have checked in after reaching survival milestones. As for your chemo side effects, talk to your oncologist or chemo nurse. I assure you, there is a pill or treatment for almost every single side effect you can experience. Last summer I felt like a chemical waste dump, treating symptoms of chemo so I could live my life as normally as possible while undergoing treatment. There are all kinds of anti-nausea meds, treatments for mouth sores, anti-diarrhea, anti-constipation, antacids...you name it, there's probably something that will treat your side effects. There is no pill for fatigue, unfortunately, so you have to let yourself rest when you need it. And there's no antidote to the hair loss. But for everything else, there is help. The one thing you must remember is to hydrate. I'm convinced that hydration is the single most important thing you can do during the entire time you are on chemo. Whether it's water, tea, coffee, soft drinks, watermelon, grapes, soups, whatever...get at least 96 ounces a day. When you're sitting in that chair getting treatment, keep an icy cold beverage right there and drink up! If an hour of hydration and anti-nausea meds prior to getting your first chemo infusion are not part of your protocol, insist upon it. And hang in there because, believe it or not, it will be over sooner than you think.
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I'm late getting to bed, I have to be up early, so just a quick note.
First, *throws Annie to floor and soundly smooches her*
Second, LMAO! "thankfully because I could not bear to have her in my life. ". You really ARE having problems with your typing skills Annie, so let me make that wee correction for you. Thankfully because I could not bear to NOT have her in my life. *runs to bathroom before giggling causes a flood*0 -
Just don't gigglesnort, Kathy!
And bumping for Kimmie.
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Luv - you snuck in while I was posting. What a small world that you and Tifj had the same onc's. Amen to " You can't convince me that finding little mets early isn't better than finding big ones that have festered for years. ". They haven't gotten me to drink the koolaid on that one either. *raises glass*. You keep defying away girlfriend!!!!
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To late Riley!
Ldbarne- welcome, the ladies have (and moderators) have given good advice. Please don't hesitate to come back and join us.0 -
luv i went to the link you posted, i really don't understand how it works though
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Kathrynn - oh shit could only happen to me. Actually my hands and fingers are so bad I cant even turn the pages of qa magazine. I hope to goodness they come right or I am up the creek without a paddle.
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Annie - I had some nasty neuropathy from the Taxol as well. A year later most of it was gone, just still have a little on the soles of my feet.
I have a dilemma. Both my onc and the onc I saw at UNC said I could CONSIDER additional chemo after my rads, but there is no data to support that it helps in the case of a local recurrence like mine. I am totally wanting nothing to do with chemo ever again, but if they told me it could save my life, then yes,I'd do it. But They can't give me anything, not even %s - just not enough data out there
Ladies who have done rads - it it normal for me to start feeling fatigues after only 13 treatments? I've been sleeping 14 hours a day!
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Well as you can see, my getting to bed early didn't work.
Minxie, I remember being tired but I don't know if it was that severe. I didn't pay to much attention to how much I slept, when I was tired, I just slept till I felt like getting up. I do remember complaining to a friend that I "didn't know why I was so tired" and her prompt response was, "duh, dumba**, you're getting radiation!". That's all I needed to hear to get the right perspective, lol. Snooze away and feel better!0 -
minxie, I slept all the time during rads. A few weeks in sounds about right. How is your skin holding up?
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minxie-I was also very tired during rads. That is tough about the chemo, the thought of starting up again is just devastating, especially if you are not sure if it will do any good. I also still have neuropathy
Inmate-Whoooooohoooooooooo! Can you hear me screaming?!
Hi to everyone! Not much going on here with me, and I hope it stays that way after I see my MO for a follow up on Monday! Had my drain removed today, after a week of having it in.
LuvRVing-that kinda scares me that one of your recurrences was found via a seroma! It just seems my seroma will not go away. He sends the fluid to the lab each time, so I hope it is all clear again this time. I'm not ready for more treatment, as I am quite sure you were not! Or anybody else that recurs:( Did I say how much I hate cancer?
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minxie, I don't know if it is normal or not, but I would sleep when I could. I was working full time at that time, would leave from work, and make a mad dash to the Rad center, change into their beautiful gown (hah!), and be called back,get zapped and go home. That was about the time DH took over the cooking(yay!). I would usually nap until dinner, then
n back to bed. So,,,,,,,,,,my theory is get rest when you can. I don't know if was the rads or the stress but I was always tired too.0 -
Ladies do any of you like Andre Rieu. The dear fellar and I went to his concert two years ago and it was fabulous. Well the fellar has brought tickets again for tomorrow night so we are going again, can't wait.
My garage used to house my old fellars fairmont and my little rave 4. Now it houses a new fridge, a new freezer, a till, a warming cabinet, a cold cabinet, two chillers, a large coffee machine, various bowls, chopping boards, knife blocks, dishes of all shapes and sizes, bowls of all shapes and sizes, a mixer, a panini maker, frying pans, toasted sandwich maker and 1000 other things for a small cafe. Needless to say the cars which cost thousands sit outside, make sense!! I hope to God my old fellar is not too old to run something like this. It will be long hours and I will be worried sick about him. Still as long as I get my dinner!!!
Minxie - oh lord what am I going to do if this neuropathy lasts a year, I can hardly type now and have to keep putting it right and I have so much work to do this weekend. I do hope you try the chemo and that it works but I can understand your dilemma. What a horrible choice you have to make. Sending you a warm hug to help with your decision. Annie
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Morning Ladies,
Welcome to the new ladies but so sorry you have to be here.
I'm sorry, had a lot to catch up on but I'm asking one of the new ladies (can't remember her name) to reconsider chemo.
Melissa, congrats on getting thru your first A/C your a 1/4 of the way finished the hard stuff now.
What a roller coaster of emotion this thread is and it's not even 7am for me. Annie, I would be devasted if you left!!! Missed why you thought you might have offended someone and raced to the end to beg you to stay - read Inmate's post. I couldn't be happier for you Inmate!!! And I'll pray that your families issues resolve quickly. And now see Annie, that everything has been resolved and your staying. Thank God. Seriously, I wake up every morning and look forward to seeing your post. I hope your neuropathy clears up quickly.
Well, made it home to see my babies. Boy I sure do miss them! And my Harley's birthday is on 7/5 so we bought a slice of birthday cake for him at Wal-Mart and the lady even wrote "Happy Birthday Harley" on it. Tonight the 4 of us will put on the birthday hats, sing, take pictures and then they get the cake. Yes, I we are that weird! No kids so I have to make due so I torture the dogs.
Poor hubby, he's so clueless, he very proud of himself that he was able to keep up with the vaccuuming that I don't have the heart to tell him the rest of the house is a filthy pit!! So it looks like I'll be cleaning and helping with the yardwork today but I sort of knew that anyway. It will help me to clean out some crap we have anyway.
Have my 3 month followup yesterday and everything was good. Hate the dang anxiety beforehand, its been bad for about 2-3 weeks. My tumor markers went from 7.4 to 8 or something ridiculous but I still can't seem to stop dwelling that they went up along with my weight!!! I gained 6 pounds but I knew I've been socializing to much and not focusing on my diet so I'm back on track now.
Another insurance question - MO seems to think that I'll still have trouble with a new insurance company and even though they have to cover me they may charge me outrageous premiums. Can someone help? We were so excited before talking to him and now he's got hubby all worried again. This dang insurance crap is like a black cloud we can't get out from under!!! Having a pity party for myself, it's so damn unfair that I can't be happy and live where I want to because I had BC. And, while I'm happy to see my boys I DO NOT MISS florida!! It's hot and humid and I just can't take the heat anymore. I'm just a northerner at heart and I'm not going to change.
Hope you ladies are having a fabulous weekend!!!!
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Heather - will you be getting health insurance through your employer? If so, I've never ever heard of an employer-based health insurance program charging more than what has been negotiated between the employer and the insurance company. If it's a large company, they are probably self-insured and the insurance company is really just administering the negotiated benefits. I think your MO is needlessly worrying you, really. And hey, it's hot and humid here in NH, so Florida is probably no worse!!! Now, you really must post a picture of the doggie birthday party - that should bring smiles to everyone! And woohoo on a good follow-up and nice, low tumor markers! I am envious of those single digit results!
Annie - I hear your fears about running an eating establishment. Hard work, long hours, high percentage of failure (at least here in the US). On the other hand, your fellar is taking steps to live his dream, so what's a gal gonna do? And do talk to your doc about a med for the neuropathy. There are several out there...neurontin, celexa (I think), and others that can help relieve the symptoms. It might not take it away 100%, but it certainly should improve things so you can function better. Please don't suffer needlessly
It's going to be a lake day today - close to 95. For a change, we have no plans this weekend so I took out a small turkey that's been in the freezer and tomorrow it's going on the barbie along with some wood chips. Smoked turkey, here we come! And my DH should finally be getting our little inflatable dinghy into the water - he was missing a couple of cotter pins that arrived yesterday. So he can install the little electric motor and take me out for a 3 hour tour, a 3 hour tour...
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Bak94 - congrats on the drain gone and prayers for Monday. LuvRV scared the chit outta me, too.
Beccad - after your comment and my experience, I'm thinking of making a pattern for a Rad shirt, that can be whipped of and on easily, to bypass that Johnny thing.
Cocker - have seen Andre and I'm jealous. Just went online the other day to see if I could get tickets to take Mom, but he's not in the US this year. (sadly, I don't think she'll be up to it by next year). I hear your fears, but old fella is living the dream. Hopefully if it's to much, he'll be able to hire some help. Maybe even a career change for you when you're thru treatment.
McCrimmon - Yay to good follow-up and a weekend with babies and hubby. Like Luv said, if your insurance is through work, I think you will be okay.
*sings along with Luv". My "3 hour tour requires paddling the whole way. Hopefully the tide is running in the right direction for us.
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Oh ladies, it seems this crap just won't let up with my mom. She had to stay overnight in the hospital last night. Woke up yesterday morning with a swollen left arm, slightly blue-ish, and it felt heavy to her. She called the nurse at her onc.'s office and she told her to go to the ER. They did an ultrasound and found a blood clot somewhere near her collar bone, they are pretty sure it's from that damn port that hasn't worked right from day one. They are taking it out this morning. They will also take a close look at her lungs to see if she's got a clot going on there too, since she's had so much trouble breathing. Other than the breathing, she feels good. Just wanted to give an update as I'm reading everyone else's. Hope everyone has a good weekend!
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Not sure if this is going to work, but this esp. for Annie who requested it. If it works I'm only going to leave it on for a couple days
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Luv- yes, Dr. M has me do labs every 3 months along with a feel up! This will go on for another year and a half then will go to every 6 months for another 2 years. My BS still has me in every 4 months for a quick feel up and she also has me on a 6 month mammo schedule for lefty! I guess I get felt up year round!
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Annie, posting as promised, but this is the best I can do. Link will take you to my Photobucket album. Once there, click on the "album tab" and the Trapeze video should be first on the list. For personal reasons, it won't be on there long, lol
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yes Minxie...fatigue is normal. When I was on the Jan rads group some would get the fatigue early on. For me it was right around #14 or so. Overwhelming to say the least. Just move out of my way whilst I climb into bed for a long nap.
Tough decision for you ...to chemo or not to chemo....Hopefully you can find some answers soon
Maggie
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Good Morning from sunny California---I hope everyone is having a SE-free weekend.
I've been wondering about this BC returning because of all the follow-up scans. Like most, if not all, of you, I've had so many CT, PET, MRI, US, Mammo, xrays and so on, plus 37 rads, since I've been declared NED. It's always nice to hear the NED results of these procedures, but what is the cost to my body of all the radiation I'm accumulating? Again, like many of you, I feel sometimes I'm just waiting for the other shoe to fall. I wouldn't change the treatment plan we followed, but...............
Jan
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