Calling all TNs

Thank you, Rebekah.

I'm fortunate to be able to talk to friends who have helped me, including you!

Hello, all! I was diagnosed in December 2017. I've mostly lurked here but I did reach out to others with multifocal. I'm currently doing weekly Taxol with Carboplatin every third week. My last Taxol was delayed due to low counts. MO says now we will do Carbo weekly so it's more tolerable. This scares me a little. I just want to get my treatments on time. I did fine with AC and mammogram and MRI showed significant decrease. You ladies have been such a wealth of information and source of hope. Thank you all for sharing your experiences.

Beckham2, I had weekly Carboplatin and it was no big deal. Hopefully it will be the same for you.

Mike, I’m so happy for you and your wife and this gives me hope too. Congratulations!

AgathaNYC - I think the most common way is to count from date of diagnosis

Hi, Charmell,

I know you're scared. I'm sorry that you find yourself here, but am glad you've found a group that understands what you're going through. My Ki-67 was 90% and my tumor 2.2 cm so larger than yours. I initially found my lump nearly two years ago and, fortunately, have no evidence of disease so far. I hope you'll be sharing a similar report two years from now. 🙂

Mike, fabulous news about your wife!

Lyn

Mike hugs to you and your wife. Thanks for being a source of hope. To all in treatment, newbies, lurkers there is hope. Stay close and vent as needed. As you can see from my signature I am 2.5 years from a nasty IBC/IDC dx.

I’ve had my challenges post treatment. Especially lymph edema, and radiation issues. The forums have been such a source of help.

Most don’t achieve PCR, and still are here many years later. Same with treatments. 2.5 years ago MD Anderson told me Xeloda was a stage 4 line of defense. Only extreme cases would a lesser stage get it. Now it is given after surgery. Hopefully more good things will come. MD was my second opion

This is a club no one wants to join, but once in you never leave.

Val

Mike - I so appreciate your attitude!

I'm not going to pick my diagnosis. It was Sept. 11 of last year whenI got "the" call while I was at work in the (new) World Trade Center. Needless to say it was a crappy day all around. I'll celebrate all the others with pleasure.

Just checking in - at exactly 100 days post chemo I really started to feel like myself. Because of also having an Er+ tumor I am on Tamoxifen, but so far so good.

So now it’s just living - no appointments until June. It is strange and scary and exciting all together. I’m thankful and fearful all at once. Most of the time I’m calm and happy. But I won’t deny that I can let my mind wander and worry, which is a waste of time. Key for me is not to read anything about TN - most information is still presented in such a dismal fashion.

So I’ve planned 2 great summer vacations, Busch Gardens/Williamsburg in the RV and Glacier National Park, and we’ve started college visits with our older son, who will be a senior next year.

Life is sweet and I’m thankful.

Please give updates!!

Congrats to all who are staying healthy

I was surprised about the Tamoxifen too. But I had three tumors - 2 of which were strongly ER+. I had micromet in an intramammary node right next to one of the ER+ tumors, so the thought was take the hormonal as a precaution. I truly hesitated, but I figured I should take it and see how I handle it.

Redeesides - any word on Xeloda?

Over the last few weeks I've observed an increase in pain on the right side. Below the ribs and to the right of the belly button. I have this pain/pull feeling, sometimes sharp. It's inconsistent but present. It's heighted when I bend down (ie to tie a shoe it hurts) but doesn't hurt if I push on it sitting or standing.

I have an appt with onc on Monday but coming here to learn more about what the pain feels like if it has metastasized to the liver.

This is a very different pain then I've experienced in the past. I had a scan January last year and it said:

Gallbladder, Pancreas, bladder, Liver and spleen unremarkable. Lung bases are clear. Clips are seen in abdomen. Small umbilical hernia is seen containing only fat, with no inflammation.

Div, I followed your 'journey' last year. I was so impressed with your courage and strong will to beat this shitty disease and now this is happening:(  Can't you ever catch a break?! I am so sorry you have to go through this again!!  I am so hoping that doc. are wrong and biopsy will be benign against all odds. What a horrible card you have been dealt! You will be in my thoughts! You have an amazing spirit to fight!! 

Div - This sucks. God, I hate cancer.

Jen - Hoping this is something else. Please let us know.

VL22 - Xeloda is a GO. Just got my pills today, but don't start for a few weeks. I'm still doing radiation until the end of this week and then I will take a few weeks off before starting Madame X. I also have a 3rd opinion with a research doctor. Hoping to get some insight as to whether an immunology trial would be worthwhile. I don't 'think' it would as I am PD1/PDL1 negative, but I have been reading some things that make me think there may be a small chance it's still worth it. So I will talk with this guy and let you know what I find out!

For everyone that is battling this every day, I pray that researchers come up with something soon. I feel like they are getting so close to some major breakthroughs. I pray that they have clarity and speed to help all of us.

Rebekah

((DiV)). I hope that doc is wrong. Please let us know as soon as you know.

Jen, what kind of surgery did you have where the abdominal clips are, and how long ago?

DIEP flap 4 yrs ago

Div, I am so sorry to hear of more challenges for you. We have GOT to get at the bottom of this cancer epidemic. There is so much money being thrown at it- I know its complicated stuff- but, come on......

Jenjeni- I had pain in that similar area after treatment was over. It eventually went away when I stopped thinking about it. I think we can guard ourselves and make ourselves sore in areas that we focus on......there are many layers of muscle in our abdomens and easy to strain/pull than we sometimes think. Have you done any different kinds of exercise/other?