Calling all TNs

Cathytoo,

I had a pet scan at the beginning of treatment and again due to my stroke. Since they had me in there, I guess they decided to do all the scans possible. All were clear. Since then my MO and my PCP say no scans unless I have symptoms.

As for biopsy pain, it is the most barbaric procedure, in a modern age.

Additonally most think i'm fine now, since i'm not in active treatment. So far from true. I'll never be 'fine' again.

Val...6feetover...unless you've walked in our shoes through the terror and treatment of this horrible disease, you can never understand. People tell me to "just don't think about it". It would be easier to sprout wings and fly. There are some times during a day when I think to myself that I haven't been thinking about cancer...which just means I HAVE been thinking about cancer. I am living my life, moving ahead but I'll never feel really carefree again

I've not had a PET scan either, but am alternating mammograms with MRIs every six months because the mammo couldn't see my tumors.

((Meadow))

hugs to meadow

Sending you healing energy, Meadow!

Has anyone heard from DiV? I haven't seen her post for at least a couple of weeks. I hope that means she's busy adjusting after her surgery. If you're reading, but not posting, DiV, please let us know how you are. There are a lot of us who care about you, and hope you're doing well.

Trish

Ditto, hope you're doing well, DiV.

possible drug to treat lymphedema...

http://med.stanford.edu/news/all-news/2017/05/study-finds-first-possible-drug-treatment-for-lymphedema.html

Hi everyone! So sorry i haven't posted in a few weeks it's been pretty hectic here. I had to go to work and sign my resignation papers. That was a rough day for me saying goodbye to all my co-workers. They have been great to me with donations. Just the other day i had to go to work and drop off tickets for my fundraiser and they gave me another card with more donations. So I've been running around to Dr appointments. Saw my orthopedic surgeon and he says i'm healing well. The pain in my chest is from all the pulling and cutting the ribs out. Phantom pain is horrible. I finally started therapy for it last friday. Due to my last pay check being today my cobra hasn't been processed yet. Monday i get a call from therapy saying they had to cancel my therapy due to not having insurance. The next day i get a call from the Cleveland clinic asking about my insurance. I told them work had to process it yet. Also told them that the clinic agreed to pay my cobra for me so she called the gentleman that's working on my case. Got it all straightened out so therapy on for monday. On monday the 5th i meet a woman i'm friends with from this site came to cleveland from Montana for a second opinion and we met up and had coffee and pastry. I now have 2 friends from this site i have met. This week i went driving for the first time. Driving went good. Oh the freedom i felt. I need to get some modifications done to ny car, blinkers and lights need moved. I celebrated my birthday on the 8th nothing special had dinner with my boyfriend and my parents. I'm just taking it ine day at a time. I really appreciate all the people i have met on this site and who continue to support me. It really means alot to me! Thank you all!

DiV...thanks for the update. You are a true inspiration. ❤️❤️

Ah DIV, lovely to hear that you are doing well and driving again. I don't know whether my post will work, my keyboard has gone a bit funny. Love to all you TN sisters.

this is a strikethrough error and it is likely on your keyboard you are right. I don't know what kind of device you are using to help you reverse it

I find it so comforting to "meet" my warrior sisters in this battle against triple negative. I have been reading your posts and they teach me, make me feel that I am not alone, and they inspire me.

A little bit about me...I found my tumor late last September and was in neo-adjuvant chemotherapy by the end of October. I was diagnosed with grade 3 with a 100% replicity rate. During the 2 months of phase 1 I was nauseous 24/7 and ran many fevers. About a month in on phase 2 my nauseousness decreased (but never went away) and I struggled with exhaustion - finally stopping chemo. I was left with anemia, low blood counts, and neuropathy. Within 2 weeks of stopping chemo I found another tumor had grown so I had a double mastectomy on April 6th. My sentinel nodes were clear. I have healed very well and have complete movement of my arms, but I have a buildup of lymphatic fluid in my chest, pretty severe nerve sensations, and significant bands of scar tissue. (All my life I have been an overachiever in producing scar tissue.) I just started PT. It seems I am always in pain; I feel like I have the tightest bra in the world on with the worst sunburn underneath. Hopefully this will subside soon. My doctor is working on getting me into a clinical trial but even if I don't get in I will begin chemotherapy again in a few weeks.

That's my journey so far. My friends and family call me an inspiration as they see me as so strong and I use humor a lot. (I burned my bras the night before my mastectomy - I'm a 65 year old former hippie. I just thought it was funny to do again and I needed to cheer up some friends so I texted them the picture to get some laughs. It seems my friends were more upset about me losing my breasts than I was.) The truth is, as I am sure you all know, that I have my down times - usually when I am extremely nauseous or when I wake up at 3:00 or 4:00 in the morning. No one understands this fight even when I try to describe it to others. Many think they understand because they have a friend or a coworker who went through this or they once had a biopsy or a scare when they thought they felt something in their breast. No, they don't have a clue, but I know you all do.

Wishing you a blessed night and a tomorrow full of hope and positive energy.

Thank you for the welcomes Cathytoo and Meadow! I guess what Meadow is referring to (the Ki67 protein) is correct. At the time of my biopsy 100% of my cells sampled were in the process of division. Once again, I am an overachiever!