Calling all TNs

anotherNYCGirl

Arlene, - wishing you an easy time today and a speedy recovery!

Secondchance, - this time you'll get rid of it all! as they say, - "second time's the charm"!

Lisa, - great photo!

Hope all here are having a GOOD day!

Hugs from NYC!

WannaCruize

I totally agree with the connection between stress & TNBC. When my 32 year old daughter was diagnosed out of the blue, with Stage IV IBC in 2012, I started riding the stress roller-coaster. Through ups and downs, great scans, and bad scans, etc. When it progressed to her liver, and got really serious in the last few months, it became relentless. I guess now I shouldn't have been surprised at my own diagnosis 2 months after she passed away. Knowing what I know now, it seems inevitable. Maybe that's why BC seems to run in some families absent of any gene mutations?

Cathytoo

WannaCruize...so sorry about your daughter. It's something no mother should face. And, now you are fighting your own battle.

Cathytoo

ACT vs TC...I know that ACT is the protocol for TN more often than TC. And, yet I see many here are getting TC...myself included. Does anyone have information on why one would be recommended over the other. I know CMF is still being used also, but not so often. One oncologist I saw wanted ACT, but I went with the doctor would felt TC didn't present as many risks after treatment. I try not to make myself second guess my decision

PeggySull

Re peripheral neuropathy. I started alpha lipoic acid after a new onc said some of his patients have had some lessening of their neuropathy using it. I started taking it right away at 200 mg a day. After 2 months I started to feel a tingling in my feet, which is supposedly an improvement over my previous numb feet. I'm going to continue taking it. Now that I've read Bluedog's post, I may increase the dosage to see if I have more progress on that dose.

I am very interested in research in this area since my neuropathy really affects my balance to the point I've had several bad falls. Luckily, I had enough fat on my hips that I didn't break anything! This is the only plus in being senior and a bit overweight ):

Hugs,

Peggy

Allydp

Lisa - I'm so very sorry to hear about your sister. She's incredibly lucky to have you. I honestly didn't think BMX and recon was all that bad. However, they started me off with just Norco in the hospital after waking up, which just didn't cut it for me. I asked for something stronger so they gave me Percocet which worked much better. I was still having breakthrough pain, so they ended up giving me full blown Oxycodone for those times. The first few days at home I was taking a Percocet every 4 hours and an Oxycodone every 4 hours...so basically a pain pill every 2 hours. Once I was on this regimen and my pain was under control, it was much easier. I feel I healed quicker as well, as I was able to be more relaxed and in better spirits. I switched over to Ibuprofen about 7-8 days post surgery and only needed a Percocet every few days if I overdid it. In my experience, there's no reason to have to tough out any major amount of pain after surgery. As far as reconstruction, I'm 5'0" and was a DD prior to dx. I went down to a B and am THRILLED with my smaller size. No doubling up on sports bras to exercise or holding them when I run up and down the stairs. I look fine in clothes, but I've got some sunken in areas just above my breasts that need fat grafting. I'm not yet ready for more surgery, but at some point I'll have to bite the bullet and go back for that. After the fat grafting I'll have nipple tattoos. Regardless of BRCA status, I would choose a BMX again no questions. Just my personal preference, as I wouldn't want to deal with mammos and further scanxiety. As someone pointed out before me, radiated skin isn't as easy to reconstruct, and so I think this is where you can run into some issues. I did chemo first, but 5 weeks is longer than I'd be willing to wait for an SNB. I was 3 weeks from dx to SNB and then another 2 weeks when they thought it had metastasized to my sternum waiting on testing and such. No one was happy about the 5 week wait to start chemo. My BS was pushing results hard to get me in the chair asap. Again, I'm so very sorry for your sister's dx. Sending you all lots of love and prayers.

Secondchance - I wish your scan brought better news, but I'm glad your major organs are clear and your onc seems to have a good handle on things. Sending you lots of love and prayers as well.

WannaCruiz - My heart goes out to you. I'm so sorry for the loss of your daughter and now your own battle.

Interesting convo about stress and TNBC. Lord knows I was under some stress the few years prior to dx.

Luvmydobies

Man, I stress all the time! I feel like I'm doomed and will eventually get mets because of the stress! Ugh, sorry to be negative. My stomach has been in knots and my IBS has been flaring the last couple of days. A friend telling me her ex daughter in law's mom died of C Diff last night isn't helping either. She didn't mean anything by it but some of you know I have major PTSD from C Diff!

Anyway, Arlene I hope your surgery went well.

WannaCruize, I'm so sorry to hear about your daughter and now your diagnosis! My heart goes out to you.

Secondchance ditto everyone's thoughts about your scans. I'll be praying for you and everyone else here

(((((HUGS))))) everyone!

Lou53

Cathytoo, I chose the TC rather than the big A. My oncologist told me that 6 rounds of it compares pretty close to the ACT without the harsher side effects. I am hoping that changes in my diet and lifestyle will prevent this beast from returning. I completed round 5 of TClast week and have my last one on the 31st followed by 30 rounds of radiation. Excited to see some type of end in sight, but also nervous.

WannaCruize

Thanks everyone for the kind thoughts. I think I'll look into guided meditation and other options for stress-reduction going forward, don't want my body to take my stress levels as a sign to have this crap come back...

My MO recommended TC instead of ACT for several reasons: I had one single tumor, stage 1, no node involvement and elected for BMX. He did say 6 rounds instead of 4. Didn't want to risk affecting the heart.

Secondchance15

Thank you all for your kind words.

Interesting topic about stress TNBC. I believe there is a connection and that stress contributed to my situation. I was under an immense amount of stress at work in 2014 not long before I was diagnosed. It's difficult to eliminate all stress in our lives...but we can learn better ways to deal with it. I am doing just that.

Here's to peace, calm and relaxation for us all! Hugs!

greenae

thank u, another, i am home and feeling hood! Love NYU and my docs!

Cocker_Spaniel

greenae so glad you are home and are feeling good. I love all my doc's as well and I have great faith in them. Rest up now and forget about spin classes for a while. xxxx

CarolinaAmy

I wouldn't be surprised by a connection between TNBC and extreme stress. The last few years before my diagnosis were EXTREME as far as stress goes. Of course, the entire year of diagnosis was horrific--my MIL (whom I loved dearly) died unexpectedly, the hosting and unsuccessful adoption of another daughter, one daughter who shared info about an incident where someone molested her, and my sister being diagnosed with colon cancer weeks after I was diagnosed. Total suckage.

I'm still going forward with the BMX and reconstruction Friday despite the studies I found. I have to trust my surgeons and oncologists who still think radiation would not be recommended as long as the nodes were clear with no evidence of past involvement. Please pray that I get a pCR, which would go a long way to bringing me peace with this plan.

Cocker_Spaniel

CarolineAmy that is a whole lot of stress and anxiety that you have had to deal with and I am so sorry you had to cope with it all. Life is just not fair at times. I can only imagine what you went through and that would be nowhere near your suffering. Don't read the studies, they are not always correct and have faith in your surgeons and oncologist that they will do their very best for you. I will be praying that all goes well and that you get a pCR. Lots of love to you my friend. xxooxx

Cathytoo

Carolina...So sorry for what you have gone through. It seems that so many of us have had incredible stress and loses. Obviously, our bodies react. I hope all will go smoothly for you. Trust your medical professionals.

Cathytoo

Anyone over 70?...As I've reading through the forums, I'm coming to the conclusion that I might be the oldest woman here with TNBC‼️ I'd love to hear from anyone over 70 with this diagnosis. I'm over 70 but I'm the new 50‼️ Active, young in mind and spirit. Not one other medical problem. My breast didn't get the "Healthy Body Memo"

Allydp

Arlene - I'm glad you're home resting and all went well! Gentle hugs to you and well wishes for fast healing!

Amy - that sure is a lot of stress I'm so sorry you've been through so much. Will be praying for a pCR for you, but please know that's not the end all be all when it comes to recurrence. Plenty of women without one go on to live very long healthy lives. And unfortunately some women who did get a pCR end up having a recurrence. As most of this seems to go, it really is a mystery. All you can do is try to move forward and live your best life for today. Praying the coming days bring you peace with your decision. xo

Just a little update on all that reflux nonsense I had going on a while back... I finally had my scope a couple days ago and my esophagus and stomach look good. No inflammation or ulcers. I'm happy to report I'm completely off the Nexium and Zantac and controlling it with diet alone and absolutely no NSAIDS...as I think those are what caused the flare to begin with. I take OTC Gaviscon about once or twice weekly as a rescue med. It works wonders and allows me to enjoy a decaf coffee or glass of wine once in a while.

Luvmydobies

CarolinaAmy, so sorry you've had to endure so much! I'll be praying for you for a pCR!

Cathytoo you're funny!! All of us may not be 70 but that's ok. I'm about to be 40, but sometimes wish I was older especially since I feel that way with the hot flashes and my period can't make up its mind of it's going to stay or leave! Hahaha! Give cute Scooter a kiss for me!

Ally, I'm so happy your scope was clear and you're feeling better! That's wonderful!!

Meadow

ditto what Luvie said!

SA8PG

Cathytoo. My dear friend is 70 and she had TN. She finished her treatments 6 months before me. She had the Diep reconstruction as well. She's amazing. If you want me to have her contact you send me a PM.

Ally. So great to hear the update. I'm so happy to hear that has resolved. Yippie!!!

Carolina. Continued prayers for you. As Ally said we don't know the why's or the how's but we will live each day moment to moment. Please keep us posted. Praying for PCR.

Arlene rest and take it easy. I'm glad you are home.

hugs everyone.

Cathytoo

Ally do...I have to agree with you about Gaviscon. It's a wonder drug. For years nothing worked for my acid reflux. Finally, I realized that Prilosec, Nexium, etc were making things worse. My doctor said to try Gaviscon. End of story. I chew a tablet whenever I feel reflux coming on. Stops it almost immediately. Only negative is it's like chewing a block of chalk

Shopgal2

chiming in on the topic of stress. After reading so many of our posts on the topic it is nice to know I am not alone in thinking that stress was a major contributor to my cancer developing. In 2014 I was also under extreme stress at work and working for a boss that caused my stress. I worked 6 days a week and 12-18 hour days at times. And I was a part time care giver for my mom who was declining and lived with me. In June of that year I felt like I was having a mental breakdown and couldn't handle the stress any longer. I tore the meniscus in my right knee in June and needed surgery in September of that year. In October my mom had a mini stroke and went into rehab, then assisted living in December of that same year. In October the original mass was found on my routine mamo only to be told to wait 6 mo and watch due to its location on my chest wall. Six months later Mass doubled and I was dx as tn.

Now 3 weeks post rads and after 10 months total of treatment I am scared of reoccurrence due to stress. I finally went back to work the end of Jan and find I am more protective of myself against things or people that induce stress. I am actually scared of stress. I find myself avoiding people that stress me or situations and cause stress. Crazy right? I know I can't avoid stress the rest of my life but at what point does it cause cancer?

StefLove

ally, so glad to hear!

shopgal, I'm always worried about recurrence due to stress. as for avoiding people that are stressful? I honestly think it's a good idea. hard to do when it's family (like my mother who is also in assisted living) but I try to avoid everyone else as much as possible. it's not worth it!

CarolinaAmy

I hope everyone is doing well today! My parents arrived yesterday to help during the initial recovery, and my husband gets back in town tonight. We head to the hospital at 5AM and off I go! I'll do my best to check in, though I can't take any responsibility for what I might say under the influence. LOL

Cathytoo, you have to be the youngest 70-year-old I've ever seen. I thought you were in your 40s!

Cathytoo

CarolinaAmy...I'll be thinking of you until you post again. Be strong. Everything will more than OK. And, thanks for the complement. 70 for me is DEFINITELY the new 50‼️ When we are both through with our treatments we can hang out together.

Meadow

Thinking of you CarolinaAmy. You will do great, check in when you can.

4everStrong

i am scared of the reccurence..

Allydp

Thanks so much everyone! It's nice to not have the daily chest pain causing me so much stress. I also recently had a follow up with my onc who scheduled a chest CT for June to check up on that lung nodule. But now that I've got the chest pain and reflux under control, the shortness or breath and cough are gone as well. I think the reflux was so bad it was causing some asthma type symptoms. I'm not too worried about the nodule at this point, but at least the follow up is on the books.

Lots of prayers to you Amy! So glad your parents and husband will be with you. You're going to do great! As others have said, please check in when you can. xoxo

Cathy - I use the liquid form. It's pretty gross, but works better for me than the tablets. It's instantaneous relief. So glad you've found relief from it as well. And YES! I could not believe when you said you were 70! You look 40...if that!

4everStrong - I'm so sorry you're dealing with the nasty fears of recurrence. You're definitely not alone. Try to take it one day at a time. And even talk to someone if they become too much. I did and it was really helpful. Sending you hugs.

greenae

hi all

Thank u for the good wishes. I am bruised up and sore, but feeling good. Must be the meds. Lol.

Wishing u good luck and an easy recovery, Carolina.

Glad for good news, Ally.

And as for recurrence thoughts, I am trying to live "in the moment," and i have to say the SSRI IS DEFINITELY HELPING ME. Oops all caps, on my fone and silly from meds. Sending Hugs

Arlene

greenae

and Cathy, I am 58, but we can be 39 together! :