Calling all TNs

Welcome SuprSurvivr, this group of TN's are wonderful and have lot's of great information to share. I have learned a lot from them in the past few months. I am not familiar with the next round of chemo drugs you are opting for but I think a few of the ladies here have done the platinum based chemo and they check in regularly so you should have an answer soon. Another approach is to look at their profile date, the chemo is typically listed there and you could send them a Private Message. Again, every single person on here has been wonderful with helpful tips.

Sorry you had nausea with AC, I am up for that in a few weeks and just spent an hour going over all of the anti nausea protocols. And hoping the neuropathy clears up for you, it seems that it usually does from what I have seen on these boards.

Anne

(((Meadow))) you will feel better soon. Take good care of yourself.

Thank you, rlk58 and all of you for your prayers and good wishes!

I think there was a scan before she was diagnosed with Stage IV. However, she is so depressed nowadays, she breaks to tears when we talk, so I backed off with medical questions and am trying to keep conversations lighthearted. She did mention no mets but locally advanced cancer, but someone in the BC community told me then it should have been stage IIIC, not IV. She also keeps saying "doctors have no plan for my treatment".

What I know is that she went through 18 rounds of Taxol, and doctors originally talked about adding AC or carboplatin but then she was put on Ixempra, and now she does not want to talk about treatment. The surgery was originally planned after 12 rounds of Taxol, but did not happen, and now she says Dr's do not talk about surgery at all.

Us living on different coasts does not help with communications. I'm talking to my boss trying to get some unscheduled time off, so I could go and see her in person.

She's been seen at Dana Farber which I heard is a very good center.

all my best wishes to all TN's fighting out there!

--sfgirl

DiV,

I will be thinking about you and sending strong positive thoughts your way on the 14th! I'm constantly amazed at your positive attitude. I don't know how you do it, but rest assured we'll all be in your pocket, rooting for you.

I'll be finished with my chemo on the 21st. Yippee! I'm trying to arrange my bmx with immediate DIEP reconstruction, but I'm having trouble getting the plastic surgeon to agree to do the surgery. There's no medical reason not to do it, I'm a good candidate, but for some reason she keeps trying to talk me into implants. She doesn't seem to understand that I don't want implants, not now, not ever. The only reason I can see for her attitude is because I am triple negative. Some doctors see that and (wrongly) assume you are a dead woman walking.

I don't know if that is what her problem is, but I don't want to continue with a doctor who is so dismissive of my choice for reconstruction. The problem is thst she seems to be the only plastic surgeon at City of Hope who does the procedure. You'd think a major cancer center would have more than one. I'm so frustrated right now.

The only bright spot is that my breast surgeon is wonderful, and is trying to help me resolve this. Hopefully we can resolve it soon, so I can finally get a surgery date scheduled. I'm kinda running out of time.

Trish

wow ladies a lot to catch up on.

Annie and family sending you warm hugs

Meadow hope you kick that infections butt.

Supersurvivor there is a xeloda thread here you can check out.

Div good to hear from you. Glad that you are doing ok thru treatment.

carhytoo I only had scans when I had my initial bout of costocondroitis. I had X-rays and a Ct scan. Other than my 6 mo mamo last July and my follow up mamo in Jan that's it. I would want more scans to know that everything is ok but with scans comes my scan anxiety. It's tough to be out of treatment and worry about every little pain, ache and weirdness that comes along.

Congrats Adarkadaptedi.

Waving hello to all.

Meadow (((hugs))).

val

hello to all, Have a great day.

Congrats, adarkadaptedi! Good for you!

Shopgal2 - I've been to the Xeloda thread, which is very informative but is mostly tailored to stage 4 and or mets. I'm not going to lie, it's caused me some anxiety to read some of the comments. God bless those folks ✨🙏🏻✨

Cathytoo and ShopGal, worry weirdness is a good term! I find that I'm worrying MORE now that I have fewer rounds of chemo left (5) and I don't think that's because it brings me closer to surgery--it's because during chemo, even though I don't feel well, I do feel like I'm fighting the TNBC cells that might be cruising around my body. Yesterday, on the Susan Love Foundation site, I read about two on-line tools where recurrence and survival statistics can be calculated: Adjuvant! and Numeracy. I have not been brave enough to try them. The Adjuvant! site warns: "Note: These tools are not for use by patients in the absence of health professional input."

just a update....last brain mri and body scan..."good news, we see nothing new, just old dead tumors"

aterry...I think Adjuvant is not on line any longer. I'm not familiar with the other site. I've gone on Cancer Math and Predict UK. They are all pretty much the same. And, again we are not statistics. We can only do the treatment and hope for the best. I met a Breast Cancer Oncologist at the beauty salon the other day. She travels the world investigating new protocols. She said every day there is another breakthrough...another lifesaving phone call for a patient. We are in a good time when TN is a hot research topic. Hopefully, there will be a breakthrough soon like there was for ER+ and HER2.

Hi all,

I have been having unexplained bone pain in one of my elbows over a few weeks with no signs of bruising. It has beeen over 4 years since my treatment. I have moved geographically since then and I'm not very impressed with my new MO but being asymptomatic I have just gone along with his follow up. I saw him a few months ago and he said "come back in a year.

I'm scared. Has anyone else had unexplained bone pain; if so, what was (were) the follow-up tests to rule out bone metastasis.

I find myself holding my breath as I consider next steps...

Hugs,

Peggy

Hi ladies.

I hope everyone is doing ok.

(((hugs)))

~Marie

PeggySull....a few months ago I had unrelenting pain in my right shoulder. My MO had told me that any pain lasting more than three weeks needed to be scanned. I went to a physical therapist the second for an evaluation. After several exercises and range of motion measurements he said that he felt certain the pain was muscular. I began a treatment plan with him, going three times weekly. After two weeks there was a big improvement. Bottom line is that even though the pain lasted a few weeks more, it did continue to improve over time. Of course, it's natural to worry and think the worse once you'be had breast cancer. But, often the pain is just wear and tear in our body not cancer mets. I wish you well. Try not to worry...and see your MO if the pain persists.

DiV,

Congrats on finishing your chemo today. Hope you get a little time off from treatment. Keep us informed about the results of your mri and petscan next month.

I have two more Taxols, tomorrow and next Tuesday, then I'm done until surgery. Whoo hoo!!

Trish