Calling all TNs

Dear Meadow so nice to see you. YOu really encouraged me when I first started on this journey. I just reached 6 years NED. I had the kitchen sink, I never thought I would get to the time where I rarely think of BC.

To all, I give a virtual hug.

Val

I am a co-caregiver of my best friend. We have been close for over 35 years. She has one child, a daughter. My friend lost her husband a year ago Nov 6th after an almost 10 year struggle with lung cancer that went to the brain and then palate of mouth. The daughter is a PHD who is a breast cancer researcher. My friend had put off medical care for 10 years to be with her husband. We finally got her going on doing her med catch up. Thus the mammogram…

She was diagnosed about 45 days ago. It was a small contained tumor which the surgeon said he got it all. Not to worry. Stage 4 Metastatic Triple negative breat cancer. We tried to have them do a PET SCAN but was told it was not necessary AS IT WAS CONTAINED. About two weeks ago her hip broke for no known reason. Ortho-surgeon put rods in and sent sample of fragments to lab…two days later found out it was breast cancer in hip bone. Took another week but we got a PET SCAN. Maybe we didn't want to know but breast cancer in the bones. Radiation is over and doctors not recommending chemo. My friend is 75 years old. My question is:

IS THERE A SUPPORT GROUP FOR TNBC with active cancer and their caregivers? My friend is great with me but screaming hateful things at her dear daughter…a day or two later she apologizes. Could this be dementia/Alzheimer’s? We are waiting for the 90 day waiting period for her long term insurance to kick in so her daughter can have more hours of help.

Due to COVID the daughter has been able to work remotely. Her hubby is fending for himself and she and the granddaughter are living with my friend. I have been at all her radiation treatments and doctor visits. She asks me why her other friends are not visiting or helping. I told her that I would always be there for her way back when hubby got sick and I meant it. I cannot say why others are not but many are afraid of the big C and afraid of our pandemic…maybe that istheir reasons.

MountainMia, I am glad you brought up the scanning. I was wondering why a scan wouldn't be necessary, wouldn't they show a met early? There are other MOs who don't believe in periodic total body scans either.

PiperKay, Not sure as to why they are starting this now, but it's a good idea! With dense breasts it's it can be difficult to see abnormalities on mammo alone. Having mri being it's a cross-sectional image is definitely beneficial. On my first diagnosis I had a mammo in May and a couple months later mri which my mass was seen I also had dense breast tissue, so it's certainly worth it. Best wishes.

Thanks, everyone. I pretty much knew that the MRI is better for dense breasts although my 8mm tumor did show up on my annual 3D mammo three years ago. Maybe the change is at least in part because I'm going back to annual mammos. Either way, I'm certainly fine with the added look since I'm also down to annual visits to the surgeon and semi-annual visits to the MO and all they do is poke and prod. LOL!

Merry Christmas to you too, Martaj and all!

Same to you Santabarbarian. I hope 2022 is a good year for all

OK so I am replying to my own reply...but...this is tai chi for insomnia related to breast cancer survivors. UCLA. so ya know, REAL. I don't know if I can post links, I'm trying:

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https://www.youtube.com/watch?v=G-nNPJb73P0

Tai chi helps breast cancer survivors with insomnia | UCLA Health Newsroom

SUBSCRIBE

A low-cost, widely available forming of movement meditation – tai chi – helps relieve insomnia symptoms in breast cancer survivors. A study led by Dr. Michael Irwin, a professor of psychiatry and director of the Cousins Center for Psychoneuroimmunology at UCLA's Semel Institute, found tai chi works better than medication and just as well as talk therapy, the "gold standard" treatment for insomnia.

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So, this is youtube. I am totally going to start doing this. Like I said before, I do arm curls already and that does help too with the lymphedema. Also, the nerve damage pain, what's that one called again? Neuropathy? That seems helped by exercise and stretches as well. Not completely and it comes and goes, but the more active I am the better it is. That's my update! I've had a great semester of pain reduction with m,y new Kaiser Physical Therapist so I would recommend just getting one if you can through your health provider. For me, they're like personal trainers but ya know, doctor-like as well. Anyway, I may be spouting stuff everyone already knows, but just in case everyone doesn't and this helps someone. SLEEP try tai chi. I'm going to try it. My mom loves tai chi. She used it after back surgery to get back in shape. I was DX in Feb 2019 so I'm almost 3 years out.

Thanks, guys! I keep meeting TNs everywhere, Seems I don't know anyone with positive receptors. OK my sample size is 2 right now on campus,. I am not counting breast cancer support groups where everyone is everything. Good night! Happy Holidays!

Happy New Year everyone. I hope it is a healthy one

Hello TNBC Sisters and Happy New Year!

I see some familiar names on here posting some good updates, and I see new names.  I'm sending much love and prayers to all, and to the newcomers, I'm sorry you have to be here, and I'm glad you found a way to these boards, and the collective sharing of information, love, and friendship that transpires.

I'm celebrating my 10-year healthy victory this week!  I guess I should really say I'm announcing it, because literally every day is a gift, not just the milestones.

When I was on these boards, the women were amazing, and I looked forward to seeing updates from other Survivors who were years out from my diagnosis. So this is me doing that!  And in particular, I came across a SylviaExMouthUK on the UK Threads, and she is many many more years out from me. As well as someone by the name of Noni Jones, who sometimes posts on these TNBC boards, and Titan, the OG of the TNBC Forum, who kicked it off, and showed us how it's done!  I hope you can find continued encouragement from seeing annual posts from Survivors.

I pray in 2022 we can all live a little easier, dream a little bigger, and love a little stronger.

Love, Debra  💗

Ugh! Just tested positive for Covid. Supposed to have 2nd chemo on Tuesday. Anyone have to postpone once they started? Will I have to do extra, will it mess things up?

serendipity. Everyone in the house has had same symptoms starts with sore throat then feels like a bad cold with lot of fatigue. Sleep seems to be the only thing that helps. Im pretty sure I'm moving to the upside and should be fine in another day or so

Hi All, I am a new member to the site, but have been reading posts and articles for the last 6 months since I was dx with TNBC stage 2 in August, 2.3 cm tumor with no lymph nodes involved. I wasn't ready to post anything, but reading others stories have been beyond reassuring and very helpful. I finish my last weekly Taxol tomorrow. I have had 4 bi weekly AC cycles followed by Taxol/Carbo weekly for a total of 11 treatments. I did have skip one weekly treatment and my DR decided not to make this up. I also receive Keytruda every 6 weeks and will continue this for 6 more months. I have personally found the chemo mentally and physically exhausting. I had a pretty hard time with both drugs, lots of fatigue and body aches. My DR also decided to 1/2 my dose for my last 3 weekly treatments. I have such anxiety about my dose being cut and skipping a treatment. I worry that this is going to effect my chances for a PCR and I know that is so important with TNBC. My Dr has assured me that I have received plenty of chemo. I hope this is true! Anyone else have to skip a dose or reduce your dose? I have my MRI next week and appointment with my surgeon to schedule my lumpectomy. Then at some point I will start radiation, don't know much about that yet. I know it will be much more tolerable than chemo, I sure hope so anyway. Well, I wish everyone well! Sending encouragement & support to all! Staying hopeful that my MRI shows my tumor has melted completely away. I want to watch my 3 kiddos grow up for many years to come. Take care.

Mountain Mia, thank you so much for sharing your story. I am 38, but otherwise sounds like our stats are similar. This makes me hopeful & positive that I have received plenty treatment. I am sure this is a concern of many of us on this journey. Everyone around me always tells me to stay positive & not worry. Don’t think the worst. Some days that is easier said then done. Some days it’s hard not to be fearful that one day this will come back & worse. You are right though, I will trust my Dr. I know that I don’t want to live always thinking eventually the other shoe will drop. Just going to try to take it day by day & continue living my life. Definitely celebrating my last chemo tomorrow! It‘s been a long road. I will check back in after the MRI. Thanks again for the support!

CKelly05,

The current standard of care for TNBC is so intense and so much more chemo than when I was treated (mid 2019), that you and all those receiving the current treatment, should be applauded for handling the current treatment. In fact, the one year between Mountainmia and my treatment, they added Xeloda as adjuvant for those that do not achieve PCR. I have read many other TNBC members who did not have the Xeloda kicker who are doing really well. In fact, when I got Xeloda, I was really upset that I did not qualify for the keytruda adjuvant trial, but so far (knock on wood, cross fingers and toes) I’m past the 2.5 years from dx and doing relatively well. I think all of us with TNBC hold our breaths until the 5 year mark.

Celebrate finishing chemo. You deserve it