Calling all TNs

BanR

sorry to hear this ks!! its pretty shocking since you were in your early stages with no spread to nodes and this coming back after 5 years!! i feel terrible.. you will be in my prayers.

jenjen...thanks for letting me know about Fighter and happy to hear that she is doing good.

Milwmama

KS-my parents both used this man in the Atlanta (Marietta) area. Not Cancer Center but a specialist nontheless. Just an option. They loved this doctor. My mother was IBC, my dad Non Hodgkins Lymphoma.

https://www.gacancer.com/our-team/physicians/2-rod...

Good luck and hoping for quick and efficient healing.

ksmatthews

thank you all for your kind words. I was having a pain and tenderness in my chest. Went to my surgeon told me it was arthritis. Then a few months later it started again and I also was extremely fatigued. So I went to my primary dr who wanted an X-ray. A spot showed on my lungs so then ordered a ct scan that led to bone scan that led to lung biopsy. Boom! Stage 4 TNBC !

BanR

Thats sad KS! How did your body take the chemo the first time? and now to have to go through chemo once again must be painful. If i remember correctly, Fighter participated in immunotherapy trials. Maybe you can get in touch with her or ask your doctor if you can take part in one of these trials too.

4everStrong

ks .. sending you lots of good vibes and hugs.. hoping that the chemotherapy will do its job and clear you out.. all my prayers to you... stay positive!

Shopgal2

Ks Idon't know you but huge hugs to you. That just sucks. I gotta agree with the others...stupid,stupid sucky cancer.

Jenjen I also am worried about CarolinaAmy she was in my sept 15 chemo group and I also have not heard from her I'll try sending her a pm

Teka

Thanks Again!!

ksmatthews,

megomendy, the 3D mammogram was pretty much like the 2D mammograms and also covered by Medicare.

Valstim52

hello all

Surgery went well. I'm resting, and the BS said he got all that he needed to get and chemo appears to have done it's job Path report will tell all, but it went as expected.

Thanks so much for the well wishes

LoveMyVizsla

Glad you're doing well, Val.

I was able to get into my dermatologist yesterday, thank goodness. She thinks all of the anti-neuropathy supplements I've been taking are causing an allergic reaction. She even wants me to stop the neupogen! I didn't get infused this week, so no neupogen, at least until next weekend. I'm taking 20mg prednisone and 4 Claritan a day. The hives are better, but definitely not gone.

Ag23

I'm still looking for my unicorn😊

My tumor did not respond to neoadjuvant chemo. Didn't shrink one bit. Have been looking tirelessly for a long term (someone who has made it past the 3 year mark) survivor that was also chemo resistant. Please tell me such a person exists! I need to be connected with one. It would help me immensely.

Thank you

SA8PG

Ag23

Have you tried reaching out to ABCD (After Breast Cancer Diagnosis)? They are great about trying to match you with someone who has similarities in treatments, outcomes etc. I am a mentor with them and have been pleased with how they strive to find you someone. You are in my continued thoughts and prayers. Don't lose hope!!!!

Hugs

G

Meadow

SA8, such good advice for Ag.

Ag, hang in there. " Do not despair, do not be discouraged, for I am with you wherever you go" Joshua 1:9

ScotBird

Ag so sorry to hear that the chemo didn't do what it's supposed to do. That's so unfair. I'm sure you wIll find some good news from similar cases. Stay strong, and let us know what you find out, we are all sendings positive thoughts and nod love your way. X

Valstim52

So sorry Ag23, are you having radiation? Though each case is different, my expectations due to the aggressiveness of my tumors was that chemo would hopefully stop the growth, and stop any new tumors, a pcr was never mentioned, but surgery would then get what could be seen and radiation would do a mop up.

Additonally, women that don't have chemo first don't know i they have a pcr. Yet they make it.

I'm sure others will chime in with their results, that is what makes this site so great.

Cathytoo

Ag23...I had a 2.5cm tumor. The core biopsy showed I was TN. However, my breast surgeon never gave me that information or referred me to an oncologist. She went ahead with the surgery. It was then that I was given the TN diagnosis. AND STILL she never referred me to an oncologist. I had to do the TN research on my own and then find an oncologist. So, I'm one of those women who never had a chance to do chemo before surgery. I have no idea if I would have achieved a pcr. I'm just going ahead with the next step and hoping that all will befine. My MO tells me about patients who are 20, 15, 10 years out from diagnosis who he sees once a year just to say hi and wish them well. That sounds pretty encouraging to me. It's hard and scary, but we have to keep looking ahead with hope.

simplelife4real

KS, I'm so sorry to hear about your mets. Dr. Lisa Carey (I believe that's how her name is spelled) at the University of North Carolina is considered a Triple Negative guru. Also, Dr. Ingrid Mayer (my doctor) at Vanderbilt in Nashville is a TNBC expert. If I ever need a second opinion, my plan is to go to Dr. Mayer first and Dr. Carey for the second opinion. Vanderbilt was very fast in responding when I contacted them when I first found out I had cancer. I hope your treatments go well.

Cathytoo, I'm so glad you did your own research and figured out you needed to see an MO. You did the right thing.

Val, congratulations on completing your surgery.

BanR, I remember meeting you here on this thread when we first joined. I always like seeing your posts.

I decided to grow out the pixie cut I've had for the past two years since chemo into a ponytail. As I grow it out, I'm noticing that I have significantly less hair than I did prior to chemo. It's going to be a skinny ponytail! I didn't realize that when I was keeping it short. The good news is that it feels like it's growing pretty fast compared to how slow it grew out the first few months after chemo. My profile pic here is about eight months post chemo....including chemo curls. Now, it's back to straight, albeit thinning, hair. I don't care. I'm just happy to have it!

Wishing everyone a wonderful day.

Lookingforward66

AG23,

I had surgery first, so not knowing if chemo would be effective on my cancer, I started chemo for insurance. After 2nd A/C infusion I developed an allergic reaction to chemo. After discussion with MO & BS I stopped chemo. I have allergies to 99.9% of drugs. I mostly do natural cures & try to avoid flu season. In the morning I go for my 3 1/2 year check up with monitoring MO. I am basically on my own if it comes back, because chemo is not an option anymore. I have no major symptoms to think that it is back and I'm trying to live the healthiest life I can. Positive outlook can go along way. If I would have continued chemo there was and 99% chance I would have been a "Death by Chemo" statistic. I am happy with my decision and doing the best I can every day. Not thrilled with arthritis but that I can take. Hope this puts your mind at ease. My double Mastectomy was to me is very successful and my end of March 2016 PET scan showed NED.

Take care keep positive.

Marsha

Lookingforward66

Lookingforward66

70 in October!!!

Valstim52

Lookingforward, thanks so much for posting. You give us all hope whether we had chemo or not.

Ag23

Wow, Marsha. Thank you so very much for sharing your story. I really appreciate it! Everyone that I've come across has been pCR or near pCR, so it's nice to know that there is hope for living recurrence free for those of us who do not respond to chemo. I love your positive attitude! I try so hard to live like that, and am successful most days...and then the fear creeps in. Mostly when I look at my little guys face - he's only 1, and I just get so nervous that I won't be around long enough for him to remember me. I'm planning to collect stories like yours and tuck them in my notebook to read on those days when I begin to worry or question whether this can be beat. Thank you for giving me hope )

Has anyone on this board had genomic testing done on their tumor? My report showed up with mutations of MYC, TP53 and FH duplication. Just curious...

Have a great day everyone!

Valstim52

BS gave me good news. My path report shows PCR and clear margins, so my chemo did it's work. They took out 17 lymph nodes no traces of cancer. Considering my PET scan in January was lit like a Christmas tree, I'm very pleased.

hanley50

Great news Valstim!

Maryann

ALHusband

Ks, Simple just gave you some great advice. Dr Ingrid Mayer at Vanderbilt is the one who recommended my wife's course of treatment and Vanderbilt was absolutely excellent! Dr Mayer was not my wife's Onc...but we did see her for a second opinion when there were some complications with my wife's diagnosis. She sent her recommendations to my wife's Onc...who carried out her treatment locally here in Alabama...simply for convenience's sake, rather than the 2 hour treck to Nashville each week. However, had my wife's Onc not agreed to carry out Dr Mayer's recommendations...we definitely would have gone to Vanderbilt each week. Excellent Doc and TNBC expert. But she does NOT sugarcoat things. She will hit you right between the eyes with the facts. I have also heard of Dr Carey in NC and have viewed some of her lectures on TNBC. Either would be great docs to consult.

avmom

Excellent news, Val!

I just got back from my post op outpatient appointment. Unfortunately, I'll be keeping both drains for now. I was hopeful about losing the left drain, but then it put out 50 ml in just 20 minutes after emptying the drains this morning. On the plus side, I don't have any indication of infection, and my nausea should subside once I'm done with the clindamycin. That can't come too soon

Angtee15

Congrats Valstim!!!

Ag23--I had my BMX on 5/11. After finding out I did not have a complete response go the chemo I fished around and saw only about 38% of TNBC gals have a PCR to neoadjuvant chemo. So obviously 60%+ of us can't be doomed! I know it's hard because my oncologist was so enthusiastic about how well chemo works on aggressive TNBC cells from the get go. So of course you kind of expect the cancer to be obliterated!

Valstim52

I agree Angtee because I was sure with my dx being IBC and TN that I would be happy if it didn't keep growing and spawn more tumors. PCR I was told is great but if that was all that was needed was chemo you would not have a combination of treatment of chemo, surg and rads.

So no way are all of us doomed no matter what the pathology and I have come to hate statistics.

Valstim52

Avmom, I still have lots of drainage, and had several clots that the visiting nurses had to get out. So that slows the drainage.

BS says will take out next week unless i am still draining a lot.

Dr Lisa Carey was my 2nd opinion, I'm in NC.

She did admit she is a TN expert but my MO had more experience with IBC. I really appreciated her admitting she was not the know all of everything. To me that is an excellent doctor

kellychameleon

Valstim, that is such good news - so happy for you!

I have my surgery (bilateral mastectomy) tomorrow and hope for the same. I had a sentinel node biopsy last week and found out today that everything came back negative there, so that was a huge relief.

Valstim52

Kelly sending healing hugs your way for your bmx.