Calling all TNs
Comments
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annie---supercalifragilisticexpialodocious...know I did not spell that right but in other words...woot woot
Mags
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Hi Curlylocks, (ps love the name for once again my hair is coming in as chemo curls)
I had asked about taking the brac test back when I found out I had cancer again. They said it is just in my makeup because no one in my family has ever had it. I am the youngest of 2 sisters and a brother. When I was told I had the Triple Negative I had asked about it again and they finally agreed and my insurance paid for it. I came back negative for the brac gene. Yeh! but it concerns me that they say African Americans, under 40, are premenopausal and those tested positive for the Brac Gene are most likely to get Triple Negative. I am none of those. Reading everything on this board I don't see that most of us fall in that category. Very strange. And yes I had estrogen positive back in 2005. Like you said cancer has no rhyme or reason.
I wish you the best and very much enjoy talking to you and everyone on this board. Everyone is knowledgeable and I am learning so much.
Thank you,
LPBoston
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Annie...wahoo on the lymphatic whatevers! no cancer...goodstuff
And...ALhusband...I think I like you....!
Kathy..good to hear from you girl.....
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Hi All,
I'm about 11 days out now from my last infusion of AC. I stopped taking all the antinausea meds two days ago. I am astounded at how much better I feel! This AC had really wiped me out. I was a very active person before I started chemo six months ago. The week before I was diagosed, I had ridden over 150 miles on my bicycle and gone backpacking for three days. Yesterday, I was able to work out on the elliptical for 15 minutes (three five minute sessions). I kept the sessions short because my heartrate kept going up so high, but it felt WONDERFUL to be able to just move again. I have my surgery 20 days from now. I want to get myself in as good as possible physical shape as I can between now and then. I know I need to not overdo it, but I also know that the better my health is going into the OR, the better my recovery will be.
How do you like my latest selfie? I just took it this morning. Because I had Taxol first and didn't lose my hair with it, I made it almost all the way through chemo with hair. I even made it half way through AC with some hair, but AC did it's thing on me and two weeks ago, a dear friend shaved what little was left. The eyelashes and brows left about the same time. I think the loss of eyebrow is what really makes it look strange. I shock myself when I pass by a mirror. I'm guessing pretty much all of us here have had that experience. I may look like an alien, but I'm feeling so much more like a human!
Adagio and Inspired: Thanks for all the talk about dark chocolate. I've never been a huge dark chocolate eater, but a friend of mine with MS that really watches what she eats gave me super heathly recipe for Chocolate Ganache. It's made it with all organic ingredients and healthy fats (coconut oil, MCT oil) and agave and maple syrup for the sweeteners. It's really good. Here's a link to her blog with the recipe: chocolate ganache The one thing I do differently than her recipe is that I mix the ganache with a mixer instead of a blender as she states. The chocolate kept seizing when I did it in my Vitamix. I keep little squares of it in the freezer and have one at night after dinner. I didn't eat any while I was on AC because it just didn't appeal to me. Now that AC is done, your talk of chocolate has reminded me it's in the freezer! I think I'll have a bite tonight.
ALhusband: Nat's thing about the skin cancer makes me think of what as happened to my skin with chemo. I'm of Irish descent and have lots of sun damage. I had 12 rounds of Taxol first. Immediately after my first round and for every round after that, more and more of my sunspots would scab up and then disappear! I jokingly said the chemo was eating my freckles! Around the 10th round or so, I suddenly got this big bump on my back that looked like a wart or something. It hurt and itched. My MO wasn't worried about it, but set up a consulation with the dermatologist for me about it to have it removed. The dermo appointment isn't until March. Anyway, next I started AC. The AC didn't eat my freckles the way Taxol did, but it did a number on whatever it was on my back. After the second infusion of AC, the darn thing dried up and fell off! I said "what Taxol giveth, AC taketh way!" Nice! I'm convinced that chemo has gotten rid of all kinds of potential areas of future skin cancers on my sun damaged skin. If it did all that, no telling what other good stuff it did inside me.
About scans: I don't think I'll be getting scans either after treatment. At this point, I'm okay with that. I may feel differently if I'm having what I think are symptoms, but I know that I tend to stress out waiting for test results after being diagnosed. I really personally like and trust each of my doctors at Vanderbilt. That's why I go there. I figure they are highly trained specialists and they have my best interests at heart.
On the BRCA testing: My insurance pays for BRCA testing for anyone diagnosed with TNBC provided they are 60 years old or less at the time of diagnosis. I was exactly 60 years old and just made the cut off. My paternal grandmother died of BC so I did wonder if I had the mutation. I did get tested, and I did not. The genetic counsellor told me that apparently Medicare pays for BRCA testing in the US. I haven't researched it and don't know the details. Hopefully, as the cost of testing comes down, this will be much less of an issue.
For everyone in dealing with bitter cold weather (including me), let's try to find ways to have fun staying warm ....spring can't be far behind!
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ALHusband,
I had a bunch of pre- cancerous bumps (they looked like freckles but if you touched them you could feel the bumps. They were the result of getting sun poisoning when I was a teenager and I'd been putting off having them removed. They all disappeared toward the end of my chemo for BC. Some silver linings to the cloud we live in during what was for me a really crappy experience during chemo.
Peggy
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My onc or bc does not suggest scans. I was told that with evidence there is no better chance of survival by doing scans when there is no symptoms or signs. The scans cause unwanted radiation and stress that you don't need. I am ok with not doing them, I just make sure I stay in tune with what's going on. If I have a pain I monitor it. I was told anything over 2 weeks needs to be checked. So far so good! I will be 3 years out in March.
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I just wanted to ask you all to pray for a friend of mine. Her mother, sister and her all 3 have Breast Cancer and all are undergoing treatments, surgeries and etc. It's bad enough for one person to have it but 3 in the family at the same time, has to be hard.
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ksmatthews - my oncologist told me exactly the same about scans and pain. I am also glad not to be having ongoing tests because I would personally find it quite stressful. Congrats on being clear for 3 whole years - that is wonderful!
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Never had a scan..will be 5 years out in March...I asked about one earlier and my onc told me same thing...why put yourself through the stress....
Simple...no way are you 60...really?
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Annie: Not sure I did this correctly, as I've never posted a picture before. But here is Bryanna with my other daughter, Jennifer, that lives in MInnesota. Jen is my first born, Tiffany, Bryanna's mom was my second bundle of love. Be well, Annie. Think of you all the time! Love, L.
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Linda..your girl's are beautiful...like YOU! inside and out
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SimpleLife: I'm going to need to see your ID! If this is what 60 looks like, then it is the new 30!
Update on the dark chocolate - thank you for the recipe SimpleLife - I will make it next weekend and I love the idea of putting it in the freezer and breaking off a square.
I found the Black and Green (or is it Green and Black) Organic Dark Chocolate at WalMart last night. It is $2.12 a big bar. I was most pleased! They also had one that has mint in it, but a little less cocoa - like a Junior Mint, so we got it... and sampled that last night. It was awesome - not overpowering and not too sweet either. I'm coloring my hair now. Blonde is easy to do and blends the gray, just use something with a good rating from the EWG site if you can.
AlHusband - such great news about your wife. I bet the chemo did zap it. Wow - that has got to be a great feeling!
Oh Linda, I love the photo!
Regarding having fun staying warm. Heat a blanket in the dryer until it's hot, pull it out and run to the couch and cuddle up in it. While it is heating, make a cup of hot green tea and find one of your very favorite tv shows to watch ... or get a game of scrabble ready.
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I am not active and I am having a difficult time trying to get active during chemo. The first week is a lost cause, too sick. The second week is a more normal week. I think I am going to try to bump up some house keeping this week. It needs it. It w ould be a good start.
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Oh Linda the girls are absolutely stunning. My God no wonder you are so proud. They have such kind serene faces and Bryanna looks just like you. Geez I can imagine her in her wedding gown. You surely have something wonderful to live and strive for and I can see they would adore their mum and nana.
No on going back for another look I can see they are both like you, you awesome lady.
Lana well done on your rads. Nearly there girl, keep going and yes you have been strong. Those beers will taste great to you.
Well done Mags couldn't have done better myself at that word. Shall we call you Julie from now on lol.
Titan woo hoo one month to go. You have worked really hard to get to five years and looked after yourself, must be all that running or the excitement of the casino. I will join you one day!!!! If I could prize myself out of my lazeboy it would be a start.
Go on Inspired, spoil yourself and have two squares lol. That's another thing I must give up. Never used to eat chocolate before chemo but there are so many left over from Christmas. Just let them go to waste can I lol
KSMatthews sending lots of prayers up for your friends. What a terrible thing for all of them to go through at the same time. The only good thing, if there is one, is that they will all support each other.
Tewriter don't worry about the house keeping it will always be there. Save your strength to get well. Cleaning can just wait.
Been gardening today. It looks so lovely. Laurajane would be so proud of me. I have a three day weekend and also took Friday off to go with it so it was a lovely break but Tuesday is coming around quick.
Off to bed. Goodnight ladies.
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I maybe should have gone into more detail on the house cleaning. I am doing my office early this morning for a bit. I work from home quite a bit so when we bought our house out in the country it had a home office. well I am turning it nto an office/craft room this year. My son and his fiance seem to think it is okay to play horrendous music at 10 decibels to clean. Yesterday they miserablized the enter house for around 4 hours with their gawd awful music.After I have had a healthy dose of coffee say 9am Blake Shelton's Kiss my Country Ass shall reign supreme and awaken the entire home. Followed in quick succession by you and tequila a few others. They hate country.
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Hi to All,
Haven't posted in a while. I finally was lucky enough (sarcasm) to catch what I term the family cold. Started with my grandson, son-in-law, husband, daughter, me, son, only one still out is daughter-in-law.
Let me tell you I had forgotten how much mucus the sinuses can produce.
Sore throat, swollen glands, painful sinuses, plugged ears, headaches. The up side is no chest involvement. All head. Some days opening my eyes hurt. Today is day 12 & I finally think I have turned the corner. So very tired of the gagging, blowing, & just dribble nose. I couldn't go to my yoga classes. Exercise what's that? Not in my condition. Too much blowing to try to do anything else. Ran out of tissues and attacked the toilet paper stash for blowing. Rudolph has nothing compared to my red (sore) nose.
Prior to BC I very rarely got sick not even a cold. Have always had allergies but learned how to manage them. This was another ah ha moment. Don't take anything for granted. I did have a moment of worry when glands got real tender. But was able to "Dutch Uncle" talk myself back to sanity & not panic mode. Does anyone else get those times when the "what ifs" try to take over your brain?
The family has been keeping in touch by text messages as some of us lost our voices (me included) for a couple of days.
We kept each other going & which ever one of us was healthy or the strongest did the grocery runs. We are very lucky to all live within 5 miles of each other.
Consensus is no get togethers until everyone clear for at least a week. No sense in relapses or passing a slight different strain of this miserable bug.
At least our weather is not too bad. Cold for Miami but to warm up again.
To all the good news I add my woo hoo!!
To those fighting & worrying we love & support you.
Take care all,
Marsha
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Titan, Inspired and Annie -
Awww, thanks for all the compliments on the girls. I adore them both, just wish my daughter Jen lived closer, being in Minnesota, and the rest of us here in GA, doesn't make for a lot of visits other than the holidays, but at least I know she is happy, healthy and thriving living up there with her Arctic weather!
Love to all,
L.
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Tekwriter - Don't worry right now about trying to be more active during chemo. Put yourself first right now. This is the one time in your life that you really need to put yourself first, and to let the treatment do its thing. When I had chemo, my Onc was very serious about telling me to not push myself. Do what I wanted to do he said, but if I started to feel tired, he told me not to push myself, but to stop for once and rest. If something is driving you bonkers, and it makes you feel good to clean, then it's probably healthy. Only do what you really want to do, and don't push yourself - your body will tell you when it's time to get up and start moving. Don't put yourself on a preconceived plan of what you think should be happening or where you think you should be - everyone is different. Play it day by day and see how you feel.
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this weather is nasty....Annie...can we all come over for summer with you?
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Hey Ladies and ALhusband,
I am sorry I have yet again not been here to offer support. A lot went on last year and some is carrying over to this year.
I lost my dad in February, my beloved dog in April and then my other beloved dog in December. She had surgery to remove two cancer in March and we thought
all was clear, but we all know how cancer works. Everything was fine and then she got this "bruise on her belly" .......wrong. It was the first sign of lymphoma and we lost her not a little over a month later.........we tried chemo, but she did not respond. My heart is still broken. I went through chemo for the second time and had to do radiation. Then hubby's work has just gone all crazy and to spare the details, it has brought a bunch and I mean a bunch of stress to us. He is looking for another job, but jobs are not just around every corner anymore. With my cancer we have to make sure I have some kind of insurance. I am just really stressed. My brother was suppose to have open heart surgery and he got the flu right before so it was put off and has been rescheduled for February. Then there is me..............Oh I am just a whole Oprah story in its self.......I have gained weight instead of losing, I am NOT NOT NOT eating right, and get no exercise other than letting the dogs out....(we got a new puppy). On the exercise part I have to be careful with my heart issues and my back, but my eating.............what the hell is wrong with me.....:( I still have major issues with my lymphedema and tightness from the radiation and other stuff you all know about. I need to have my gallbladder out and probably my ovaries just to have a life of no pain............but I am CHICKEN!!! Don't beat me up to bad because I do enough of that myself. I guess the bottom line is I am miserable and do not know how to get over it. I have to be the one to do it, but just don't seem to care enough to do it. I think it takes to much energy which I don't seem to have or just don't care............maybe a little of both. I don't want to die, but I am terrified to live. Being agoraphobic makes EVERYTHING WORSE too.......
As always I wish the best for you all and I am sorry I have not been here............seems to be the same ole story with me, but hey it's my party and I'll cry if I want too.........:) : ) Seriously though, I don't like to bring anyone down but I need to vent to those who understand what is behind all my fears, and pain. Has anyone else had Lymphocytes that were low after chemo? Mine are low but the doctor did not mention it, I seen it on the results. I know chemo can make them low and I am hoping that is why she is not concerned. I will be talking with her about this, as it has me scared.
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Titan - come on over then girl. I'll put me best frock on, spruce up the old feller and I'll even put a bow in Chloe's hair (not a pink one). I'll put the jug on (kettle) and we've got some lovely fresh cream cakes to go with it. You will be very welcome.
Stupidboobs - I'm sorry you are going through so much crap in your life. Would it help to take the dogs for several short little walks each day. They need a walk and it might help you to get some fresh air and it could improve your motivation. What about five smaller meals per day. They reckon you can lose some weight like that. I also have lymphoedema in my left arm which is twice the size of the other one but it's a case of carry on because I have to type. Your lymphocytes might not be low enough to cause your doctor to be concerned but you need to discuss it the next time you see her. Hoping your hubby will get a job soon so that will ease the stress on you.
Lookingforw - I hope you manage to shake of that cold soon and that you are feeling better by now. My family have a sort of intercom (phone) whenever anyone is sick and we all agree to stay away until its done it worse. Luckily we all live in Taupo as well.
Tekwriter - gotcha now with the housekeeping but make sure you still don't over do it. When I was going through chemo my work set me up at home and I could work when I wanted to and not if I didn't. It was really good because on the days I was having the dexamethasone it would keep me up all night so I would type all night. I would go down to work the next day and load up the computer stick and away I would go again. It also kept my mind occupied instead of on cancer all the time.
Gilly - did you get my post abut New Zealand? I would be interested in your comments, good or bad.
Well ladies I have had a long weekend this week, Fri to Mon and its been bliss. Got all my housework done early, got the gardening done and the washing and ironing and even went to look at another car with my old feller. My little two door Toyota RAV4 is getting a bit older now but I do still love it. Believe it or not it's a deep rose pink!!! though it does have grey at the bottom. It only takes me five mins to get to work so it's been ideal for just me. The old feller needs a bigger car and likes a bigger one. Typically the days went quick and it's back to work tomorrow. I don't really mind though because its a great place to work. There are about 36 staff and 12 doctors and I love every one of them. We have so many laughs.
Have a good day tomorrow ladies. Love and hugs to you all. Annie xx
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Thanks Cocker_Spaniel all good ideas...............:)
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HI all, thanks for the tips. I seriously listen to my body and when I am tired I stop even if it is in the middle of soemthing. My disability plan does not work that way. If I work part time I need to be there. It will mess up my time. I am not sure what will happen during my next phase of chemo when it is not so bad. We will see. I know it will go for a year but by then I will be on long term disability and if i want to work i will have to start all over when i need to go back for surgery and things I am not sure it is worth it. We will just have to wait and see. I think I have enough comorbities to keep me happily here at home.
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I have a question I'm hoping someone can answer. When I had my breast biopsy, I was told it was TNBC but 2% of the cells were ER+. I haven't had my surgery yet still finishing up chemo. Today I saw Rad Onc and he said it could be ER+ and I should talk with my MO about hormonal therapy. Would they consider 2% of cells enough to consider it ER+? I did BRCA testing but haven't gotten the results back yet. Has anyone had that low ER+ cells?
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Hi Gram. The general rule is that anything under 5% is considered negative. However, some MOs feel that any % positive should be followed up with Tamoxifen and others do not. I am 3% + and my MO treats me as negative and did not prescribe Tamoxifen saying the side effects would outweigh the benefits. I would certainly ask your MO what he/she feels is best for you.
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Hey Cocker - yes this is my first time on for a few days. I'm trying not to come here every day. Like Titan, the five year mark is on the not-too-distant horizon (June), for whatever that's worth, so I don't have a lot to offer to newbies, except support.
So yes - DH and I spent almost five months in NZ (October-March). He is a college professor and had a sabbatical year, 2008-09. So this was immediately prior to BC. We were based in Christchurch and rented a flat right down town and loved it. We did not have a car and did lots of stuff in Christchurch using public transportation, and rented a car wen we wanted to take a trip. We spent most of our time on the South Island and did some very touristy things like the fjords, Mt Cook, Queenstown where DH did a bungy jump at that original bridge. A lot of the time we simply "lived" in Christchurch, doing every day things like going to the library, walking to get fresh fish (often!), the bakery and the greengrocer's - walking everywhere. We played badminton and table tennis at places where people knew what they were doing. In the US, badminton is considered a game to play outside on your lawn!!!! DH is a squash player and played several times a week. We spent just two weeks on the North Island, visiting Wellington, Rotaroa and Auckland, then flew to Sydney (Brisbane and then Cairns) before returning to the US. We had a great time and would love to visit again. You may recollect I am from England, and it was lovely to go to the little shops and buy pies and cakes etc. We loved being able to get a huge variety of fresh fish so easily. Seems so long ago now...
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cream cakes and whatever you have in that kettle sound lovely....I'll wear my best frock too!
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So much good news from everyone!!!!! (Dormac, Adagio, AL Husband and everyone I forgot)
On my IPhone so I have to keep it short .....or lose my mind..
Simple, were you the person concerned about ALND and exercise? I was concerned after surgery, not because I'm doing exercise, but because I have you do a lot of heavy yard work. My BS said the more I used it the better!! I didn't do any special exercise after surgery, but I did stretch the arm and made it do everything the other one did. The ALND was really no big deal for me. One tip: make sure you have someone measure your arm at various levels ( wrist, forearm, above elbow, etc) so you have a baseline to evaluate any problems by.
LRM - your girls are beautiful and I think she comes home because she loves her Nana.
Annie - just to reassure you.......I still have a tarped over hole in my roof!!! The combo of 6 mo of chemo, Mom almost dieing and an insurance company that doesn't want to pay a fair amount put it on the back burner till I was feeling better. Hopefully I'll be hell on wheels once the good weather comes.
LP - I only got initial scans also. When "I thought" my cancer reoccurred, I went by the 2 week rule. I told two oncology practitioners (4 months apart) that I thought my cancer was back, and they didn't listen. I had to go to my primary to get a CAT to prove it. Because of that fact my doctors are practicing a little "tails tucked between the legs medicine" . My doctors now do scans when something warrents it.
Titan - I'll be joining you at Annie's for tea and cream cakes but I ain't wearing no DAMN frock!!!!!
I saw my BS Thursday and she couldn't have been nicer. They are biopsying my breast Thursday. They are not sure if they can get the rogue lymph nodes, but I have an appt. with her after the biopsy, and that's probably what they want to discuss. I hope she's right and it's just inflammation, but I brought her some objective info that made her stop and think. She thinks it's inflammation because the uptake was mild at 1.7. I asked a kind of trick question......"what uptake would you expect to see with cancer?" She said in the 4 to 5 range. At that point I directed her to my previous reoccurrence PET, where the cancerous tumor only uptook at a mild 2.3. Since she knew how that story turned out......it made her stop and think. The other good news was that if the biopsy is positive, I actually may qualify for the new Enzalutamide clinical trial. (But they're only taking 80 patients, so I know my odds would be slim). Even if I don't make this trial it's nice to know there's a chance for me in the future.
My friends and I have been laughing our asses off all week. I always knew I have "big balls", but I didn't know it was gonna come back to bite me in the arse! It amuses me that I have something that is histologically similar to prostate cancer in my boob!
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Ooops, forgot.
Stupidboob, you're in my thoughts. Be kind to yourself!!!! You have enough stress in your life to fill a pool. Keep it simple. Just try and do something every day that brings you joy, even if it's as simple as reading a good book or watching a good movie.
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Kathy, thanks for sharing your experience about exercise after an ALND. I love to bicycle and I also do a lot of heavy gardening. It's good to know you haven't had problems with exercise after your ALND. I hope things go well with your biopsy and you get good results.
Stupidboob/Sadie, I'm a newbie here, but I just want to say we're here to support you. I know from my own past experience (before being diagnosed with BC) that I knew how to eat right, but was just too depressed or unmotivated to do it. Sometimes, "bad" food is what helps us get through the rough times. It's okay. We each do what we need to do. I hope your new puppy is bringing you love and snuggles and laughter.
Tekwriter, I just finished chemo 2 weeks ago. For the last 5 months while I was going through it, I rarely had the energy to clean. Sometimes the kitchen floor drives me nuts, but I don't clean it and I don't ask hubby to either. He's been doing a lot to care for me....I've just had to learn to go with the flow on how the house looks at times. I know eventually my strength with come back enough to clean that floor, but today is not that day.
Yesterday was a llttle frustrating, my heart rate kept going up like a rocket when I would try to get on our elliptical to SLOWLY exercise. I'm guessing that it might be a bit of a low red blood cell count issue since I've just barely finished my last AC. I believe everything is okay and this is all just part of the normal recovery process. I just would like to have as much stamina as possible for my surgery in 15 days. I've been drinking fresh green veggie juices three times a day in addition to eating really healthy to try to give my body all the nutrients it needs to help repair itself after chemo. There's just not a lot more that I can do to speed this recovery process along.
I'm looking forward to this afternoon. My husband and I started going to a weekly ballroom dance class at the local senior center right after I got diagnosed last August. They happened to take a winter break that was perfectly timed with when I was going through the worst of the AC chemo. Today is the first class they have had since early December and I'm going to be able to go! I doubt I'll be able to be on my feet for the whole hour, but it will be so much fun to get back to it. I used to have to drag myself to the class while I was doing my 12 weeks of Taxol, but I ALWAYS walked out feeling a thousand times better. I think it's the combination of music, movement and just focusing on trying to learn a new step (thus taking my mind off cancer for a nanosecond at a time) that makes me enjoy the classes so much.
I had hair when I went to my last class, now I'm completely hairless. I don't think I'll fuss with my wig and makeup today (don't have that much energy yet). I think I'll just wear a soft cap and go. I'm not real big on vanity....I'm more about comfort. It will be okay.
For everyone dealing with this bitter cold in the USA, stay warm! The days are getting longer and spring can't be that far away!!
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- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
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- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
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- 5.2K Lymphedema
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- 591 Pain
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- 109 Welcome to Breastcancer.org
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- 11 Info & Resources for New Patients & Members From the Team