Calling all TNs

First, congratulations on completing chemo! I hope you celebrated by doing something special! Our dx look almost identical and the tx is pretty similar as well. I completed my 4 cycles of AC in the middle of January...ummm that was brutal. I had my first Taxol + Carbo + Keytruda on January 25, however my last two weeks of Taxol had to be skipped due to my counts being too low. My MO sent in a prior auth for Neuprogen in order to stimulate my bone marrow so I can continue on my current regimen, however my insurance company denied the request. I was a complete wreck this past Tuesday. I had to allow myself to be in my emotions for that day and then with the help of positive quotes and devotionals, I found the strength to dust myself off and find my positivity and fight again.

I feel exactly how you do....how does missing two treatments affect my chance of PCR? Will we have to go to a less aggressive tx regimen if she cannot convince insurance to approve the Neuprogen? Will she recommend tacking those two doses on or just drop them? The questions go on and on...

In love,

PRbonita45

notdefined - that's so great that your 3 year check up went well! Praying that everything looks good on the mammogram in August. Thanks for coming back to share. Wishing you all the best.

Notdefined and Farfalla6:

So glad to hear that you guys are doing well and that you hit year 3. Thanks for sharing the good news.

Great news Piperkay. Thanks for sharing.

On a completely different topic,I noticed that some use Dx dates to calculate the 3 and 5 year marks and some use surgery dates. For those that have surgery before chemo, it doesn’t seem to be that different in time, but for those of us that have had neoadjuvent chemo before surgery, the calculation is extended by at least 6 months. Most of the articles I’ve read use Dx dates to calculate the time, but I’ve met with several doctors (MO, RO, BS, second and third MO) and they do not have a consensus on what date to use when you have neoadjuvent chemo. I thought most of the statistics on recurrence used Dx dates. Is there new data which explains why surgery dates are used?

So happy for all of you. Almost 4 1/2 years now since surgery. Thanks to everyone here for the good company.

Romashka,

Thank you for posting and sharing the good news.

Whenever a TNBC member posts this good news, I get very hopeful. It really lifts my spirits to hear that the treatments do work for many TNBC patients. So thank you, Notdefined, Farfalla6, and Piperkay for helping me and otherswho are still holding our breaths and waiting for year 3 and 5 to come and go.

Congratulations on 3 & 4 years!! That’s lovely to hear. Just heard of a 12 year thriver of TNBC so that made me super happy. I hope we all can get there +++ and that the TNBC vaccine is here soon

Today marks five years since my double mastectomy. My "cancerversary ".

Can't believe I made it. I wish, like so many others on this thread, I could know I was I was out of the woods, cancer wise, but unfortunately I had hormone positive cancer as well. But at least it's one less thing to stress over.

Hope everyone is well.

Trish

Trishyla - Congratulations on hitting 5 years!!

Hi Arjal.

I totally understand how you feel. It is a rollercoaster. After 4 AC-T and a few taxol treatments, MO felt that the chemo wasn’t working and I was enrolled in a clinical trial at MD Anderson. Right before I was going to move to Texas (I live in california), they took an MRI and it showed a complete imaging response (so my MRI went from 5+ cm of IDC to zero). So I cancelled the move and continued on with taxol. I was really hopeful for a PCR after the MRI result. Unfortunately, the pathology after surgery showed one positive sentinel node and multiple isolated tumor cells and IDC still in tumor bed. I cried when I saw my pathology report because I knew that there was at least a 70% chance of recurrence (I was stage IIIc/IV at diagnosis). Well, I had radiation (top of neck to bottom of ribs) and Xeloda after surgery. It’s almost 3 years from diagnosis without a recurrence (knock on wood). This is a tough journey. I have seen your post and you have been doing everything you can. In fact, you have survived through some very hard treatment. Hopefully, your team will help you move forward. There’s more treatment to come. Most TBNC will get Xeloda or more immunotherapy. We’re here for you and we understand.

Arjal - I can empathize with what you are going through. At week 9 of 12 taxol tx I could feel my tumor had grown. The MRI imaging from a week prior did not show the growth and I could not feel it so when I could physically feel the lump a week later, I freaked out. Had my BMX a month later and sure enough, one positive node. It was decided by two RO's that I did not need rads; started Xeloda 6 weeks later, but had to be taken off after 3 cycles as my body just couldn't handle it. A month after stopping Xeloda, I found a lump about a half an inch away from the original tumor. It was ignored (brushed off as a blemish) until July when I had my exchange to implants, when the biopsy came back positive. I was floored. Had to do 5 weeks rads and am now scheduled for more surgery later this summer after I finish Xeloda.

You are not alone, we are all here for you!

Hello everyone - I've been waiting on my FISH and it's today. Officially TNBC. Trying to learn all I can.

41, stage 2, waiting to start treatmrny

~waves~ A blast from the past, checking in with all the TN peeps as I go about updating my passwords on all the sites I've used to save my privacy. I see there are some things have changed in the forums! I'm still here and it's been a helluva trip. After surviving TN, I developed a second head neck cancer 3 years after the breast cancer and had to deal with that brutal treatment. I'm sorta okay now, dealing with long term radiation side effects, neck pain from scarring along with dental issues, thyroid, etc.,

I want to read more about the new treatments and what is working.

I was diagnosed in 2012. Some of my profile seems to be missing and all my saved articles. I guess they had to upgrade.

Hang in there and keep moving.

Mamacure I have known several cases of BC women getting secondary cancers and surviving. Unbelievable that it struck again but chemo & radiation are also risk factors. Troopers all for going through that!

Thank you lovemyvizla for the hopeful article!