Calling all TNs
Comments
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I have just revisited BC.org after a long hiatus. I'm being worked up for recurrence but I don't think it is. I think I have something new, not BC related.
I found out this past week that I was triple-negative. When I had my pathology done in 1999, they didn't test for HER2, but one of my physicians post-treatment tested and I was negative.
While it isn't as fresh for me as it is for you, I hope I can help you to know that what you guys are experiencing is normal. Chemo is challenging, to say the least. I found radiation a nuisance, mostly because it was a daily event, and since I had had the mastectomy, I felt strongly that the cancer was gone and the chemo had taken care of any errant cells. I was feeling so much stronger and I was getting my energy back, along with eyebrows and eyelashes. :-)
I hope that knowing that I have made it 16 years is helpful for you. I was monitored very closely for 4 years and that was tough going, as you know. Every doctor's appointment, ache and pain scared me. Until I felt that I had had enough of worrying all the time and gave myself rules: Does it wake me up? Is it getting worse? Has it lasted 2 weeks? Surprising how many 'serious' symptoms went away...
For those who are going through treatment, hang in there. Eventually it will be over and you will be able to get on with life.
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Arlene, - thinking of you , - and knowing you will post a good update!
Shopgal, - As Luv wrote, hang in there, and rads will be over soon! It is annoying to have to go every day, but after the first on or two, it is a quick visit, and so much easier than chemo!
Luv, - 3 years! YAYYY! Here's to the next 3 DECADES, - and more!!
Ru, - wishing you well!
Meadow, Ally, Al, and all of you here, - you are in my thoughts and BE WELL wishes are always being sent to you!
Hugs from NYC (where we have our first snow on the ground!
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Ruru99, thank you so much for your post. I have really been struggling lately and needed to hear this! Being triple negative is so frightening and I find myself wondering how long I am going to make it. It's so hard to stay positive when fear grips you and the side effects of chemo knock you down. I have a lot of work to do with changing my attitude.
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Arlene, thinking of you this morning! Let us know how it goes today.
Ruru99, thanks for posting! 16 years is awesome! Keep us posted and I'll pray everything is ok! HUGS!!!
Lou53. Just hang in. It WILL get better! XOXO
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thanks ladies. I really did have a really bad day yesterday and reading your posts this morning helped a lot. I found out earlier this month that the company I worked for 18 years filled my position. My std and Fmla ended in November and I thought it ended in December. I only had 10 weeks Fmla because I had forgotten I used intermittent earlier last year. I was on long term leave and asked my ro last week if I could go back to work. She wrote a release note and I am now waiting to hear back from my employer if there is a lesser level position I could possibly come back to, or worse if I am terminated. It just sucks because all of this crap coincided with my sim, port films, and actual start date of rads last week. A lot of stress that I just don't need. I need health carebenefits and income to pay for my cancer treatment and don't know if I can afford a big pay cut from a lesser position. It's just heartbreaking that a company I worked 18 years for can be this way.
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Thank you, my friends,
Just got out of right mammo and US. They had to repeat mammo and do spot compression for a new spot. But US was good! Spot must be from reduction surgery. I am Good to go! One year down, two to go. Whew! Thank you for your prayers!
Hugs!
Arlene
PS shopgal, i hope your employers Wake Up and give you your job backYou sure don't need this now.
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greenae, I'm so happy to hear the all-clear!
Ruru99, thank you SO much for coming in and giving us the long-term perspective. It's so good to hear of long-term survivors.
Shopgal, I can't believe your company is treating you this way. I do realize they have a business to run, but 18 years deserves a good level of loyalty. And I thought the whole point of the ACA was to prevent stuff like this.
Heading to Taxol #9 tomorrow, and booking our very first cruise for the time in between ending chemo and having surgery. LOL
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thanks Arlene and Amy. Arlene glad your mamo & us were finally clear.
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Shopgal
Man I am sorry. Loyalty is so hard to find anymore with Employers. I will be praying for you & that this situation has a positive outcome especially with pay & health benefits.
((((((((((Hugs)))))))))
G
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Great news, Arlene!!
Shopgal, - good luck with job situation!!
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woo hoo, I got accepted into a phase 2 clinical trial for durvalumab and tremelimumab (immunotherapy)! This is a trial for HER2- breast cancer and since chemo doesn't seem to work for me I am super excited to have this as a possibility, hoping some good results come along!
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WooHooArlene!!!
Shopgal, I'm so sorry to hear about your job situation! That's ridiculous and really ticks me off!! Praying for you dear!
Notdoneyet, so happy you got into this trial! Keep us posted! Congrats!
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Ruru, thank you so much for your inspiring post.
Arlene, doing the happy dancefor you!
Shopgal, just so frustrated for you. Hoping the employer works something out for you SOON.
Another, Snow! I saw the Professional Bull Riders (PBR) were in NYC this weekend, we follow them on tour, participate in the events by picking a "fantasy" team and attend an event in Missouri when the tour stops here....yes, we are Bullriding nerds. Did you see any cowboys in NYC this weekend?
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thanks for all the prayers. I hear tomorrow afternoon if if still have a job or if I get demoted.
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Notdoneyet, congratulations on the trial! I have been reading a lot about immunotherapy and it is very exciting. Praying that all goes well. :
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Meadow! Next time let me know if you are in the city and we can try to meet for coffee!
Didnt see the cowboys, but my husband did mention something about it!
Notdoneyet, - great news re the trial!
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Thank you, my friends!!!
Notdone- good news about the trial. I will be praying those drugs seek and destroy!
Meadow- so funny you mention the Bullriders. I overheard a woman at the Imaging Center saying she had a great time in the city watching them with her kids! She had never heard of professional bullriders--me, either!
Ru ru, thank you for your post! Am in your pocket to clear up your health issues, many more years free from TN!
Shopgal, praying your employers are smart---otherwise maybe a lawyer coukd help?
We had our first snow yesterday and looking forward to more friday night. Stay warm!
Arlene
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Another, I have not been to NYC but I would love to, and if I get there, yes we are having coffee, and a slice of pizza. Arlene, you join us!
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Yes, a Pizza Party! NY has the best
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Notdoneyet congrats on the immunotherapy trial. Sounds promising.
Arlene already have spoken to a lawyer.
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Meadow and Arlene, - yes, pizza! just say when!
I am actually escaping the cold for a few days, - heading to FL tomorrow. This trip was scheduled for last January but had to be cancelled the day before departure when PS saw a problem and I had to go for emergency surgery to remove implant . I am hoping that THIS time we do get to FL!
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Enjoy your trip, another!
You're going to miss Big Snow
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anothernyc Florida sounds really nice and good that you get to go before the snow.
Arlene I'm in philly so snow for us here too. I was in ny Times Square 2 years ago during a big storm in Jan. Got stuck there during a work trip. Nyc was really beautiful during the snow, esp when it was coming down. I remember I had no boots and hat. Brr. Cold but pretty
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Ladies,
I am in close to about as south in Florida as you can get. Miami. There is Homestead & The Keys but we say we're South Florida! It is our Winter now (highs below 70 degrees).....😎 Yes spoiled & I know it as was born in Ohio!! I wish all of you could come enjoy Our Winter. If in my area give a shout out. Stay warm & keep smiling (it confuses the grumpies) best to all. Keep looking forward & maybe we'll all just beat this Big "C" worry!!!
Marsha
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Lookingforward, you live in paradise! We feel the warmth from here. The Midwest has an ice storm tonight, schools closing and roads are very slick
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I am in Ohio and yesterday it was a whopping -14 below with the wind chill! Never knew how much my hair kept me warm! Brrrrrrr
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Notdoneyet, I'm excited about the clinical trial for you. I'm so excited about the discoveries being made in immunotherapy!
My Taxol #9 is done, so I only have three left. Now focusing on preparing for surgery and feeling a little strange about the shift in treatment. I kinda had the rhythm of this, so it feels strange to let that go and have to absorb a whole different phase. I get why the end of treatment and surgery can be such a disorienting and anxiety-provoking change!!
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Thanks Arlene and Shop!
Stay warm everyone! (Marsha, - I know that even FL is 'cold' tonight, - but it will still be a nice change from NY
CarolinaAmy, - good to be moving ahead! You'll see!
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Navymom - hope you're enjoying the nice warm weather down there...and the sun on your face and sand in your toes!
Amy - (((Hugs))) You've been through too much. I'll be sending you good thoughts and hugs that the final Taxols are easy going. You're almost there! Stay strong! And thank you for the reassurance on the nodule.
Julie - PCR...fantastic!!! Hope you're resting up and healing well.
Luv - huge congratulations on 3 years!!! Give those pups a squeeze from all of us! They're incredibly lucky to have you! xo
Shopgal - I can't believe your company is treating you this way! As others have said, it's sad companies no longer value their employees as they once did, and the loyalty is gone. My husband was passed over for a promotion he was told was his after I was diagnosed...and they told him exactly that to his face. It's unfair these things still happen. I hope you're able to work something out and keep your benefits. You shouldn't have to worry about such things on top of everything else. Sending you big hugs. Please keep us posted.
Ruru - thank you so very much for your encouraging post! Stories like yours really keep me going.
Notdoneyet - YAY for the immune trial! I'm wishing you all the best and hope it brings you back to NED!
Arlene - I'm so happy to hear your wonderful news! Congratulations!!!
Marsha - enjoy that warm weather and long overdue vacay!
I had a setback with the GERD. Called my onc to let her know and she told me to follow up with my PCP. Very disheartening since she's the one who told me to call her back if the pain persisted, and specifically said she's send me for a GI workup if need be. So into my PCP today I went. Due to "chest pain" they did a quick in-office EKG which was normal as expected. I have an echocardiogram (just to cover bases) and abdominal ultrasound (checking for ulcer) scheduled later this week, and she's going to have a look at the nodule on my chest CT herself. She RX'ed Zantac and Nexium. I'm to take both religiously for a week and follow a strict GERD diet. I was taking both before, but in all honestly I'd miss a day here or there. And I wasn't doing that great of a job on omitting spicy foods...and had a glass of wine the other day. It's hard to understand how I could all of a sudden develop acute reflux out of nowhere, which makes me think I can get away with those cheats once in a while. Clearly I can't. At least not until I get the acid under control. Anyway, I see her again in one week by which time she should have all the results and I'll have an idea how the meds are working. If no change she'll run more tests or refer me out, didn't really say which. I'm half tempted to just make an appointment with a GI specialist myself, but for now I'm just going to go with the flow and hope the next week brings relief again.
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Allydp thanks for the hugs. Hopefully I should have a final answer today on the job. Just sucks cause I could have had my ro keep me out until the end of rads next month and return in March. But I felt OK and wanted to return to work. Staying home since th end of August is driving me crazy.
Can I ask how did you get GERD? Was it from chemo? I only ask because I developed it too after my second ac and was in agony until my mo put me on protonix, which gave me bad SE's after I was on it for 2 weeks. Then I switched to an otc med. Now during rads I had a pretty bad episode sat where I had horrible heartburn, reflux and felt like I was having a heart attack. Yikes! I did tell ro about it yesterday at my visit and wonder if I need to call mo to get a different reflex script. I do hope you feel better and seeing a gi doc sounds like a good idea.
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