Calling all TNs
Comments
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Question for everyone...how often does your MO do scans? Mine does not do any unless I would have an unusual symptom that lasts three weeks.
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rlk58
, please hang in there. the surgery will tell the whole story. sometimes tumors flatten out, instead of getting smaller or sometimes become non active. I know the waiting is terrible, we are in your pocket. The taxol, may still be working like the AC did.
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Cathytoo - I didn't have any scans done at all during or after.
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Cathytoo, I only had scans when I had an issue.
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Hello all!
Haven't been on here for awhile and wanted to check in. Welcome to all newbies-sorry you have to join us. There is so much news! To our dear Annie - I am so sad to hear your news. You have been such an inspiration to so many on here. You gave me hope when i was first on here and scared out of my mind. Know that I am in your pocket! You are always in my prayers. We love you!
Ally - I am so thrilled about your baby news! Such an exciting time for you and your hubby!
To all who are struggling, there is always hope and lots of support on here to all who need it! I have just had my three year mark! My dr is pleased with my progress. I actually have days when I don't think about cancer...never thought that would happen! I am trying to live each day with gratitude.
Hugs to all! lilyrose
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Cathytoo, since studies indicate that frequent scans make no difference in survival, my MO said that most insurance companies won't pay for scans absent symptoms. I had a lesion in one lung disclosed during my baseline CT so they should allow a scan in six months because of that.
I don't care if it makes a difference in in length of life. I want to know ASAP if there's metastasis.
Lyn
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Scotbird - Thx. I hope I have the same results as you too. Awesome!
LoveMyVizsla - Thx.
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Val,
Thanks you for replying and encouragement.I just worry about the tenderness and swollen lymph node.Did you find out you had positive node after surgery?I had a needles biopsy and that was negative,but my node has been swollen before.
Rhonda
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sfgirl,
I am so sorry to hear about your friend and am sending prayers.
They determined your friend was stage 4 without a scan?
Maybe I missed something.
Rhonda
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Hi, my fellow TNBC friends! I've been lurking on this thread for a while so thought I'd introduced myself. I noticed a lump in Feb 2016 but just thought it was a cyst as I'd had them before. No family history, relatively young, busy with work, etc. Finally got to dr in May and by June 21 it was confirmed as TNBC.
I started NA chemo asap. Lots more nausea than I anticipated on AC but T was much easier. I did get some neuropathy in my finger tips and big toes, but its been slowly going away (take glutamine 3xday). I also got some messed up finger/toe nails, but again that's slowly resolving. Of course, I also lost my hair, including eye brows and lashes, which seemed the worse! But, the tumor went from 3.8 to 1cm tho unfortunately not PCR. Ki67 is 74%. BS thought a few nodes might have been cancerous but the 7 removed were clear! So, now doing standards rads (see Jan rad thread).
I have signed up for a second round chemo study - will either get platinum based for 12 wk or Xeloda for 18. Will start in late May after the oldest of my two boys graduates college. If any one knows this study or has experience with these chemo drugs, please share! 🤓 I didn't realize what TNBC without PCR really meant for recurrence, so hoping the new chemo will help
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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
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Welcome suprsurvivr! 2 boys will definitely keep you busy. Glad you are here.
Amw, and rlk, you are almost at the end of chemo, congrats on being such warriors.
Val, hugs as always. Ally, thanks for the well wishes. So others don't have to scroll back, I am recovering from a bad infection, I had surgery to repair some damage to my boob from radiation, and it became infected. Had to have surgery again to remove the implant. Failed! Still on 2 Antibiotics. I had to go back on this past Monday to reopen the incision, and leave it open to drain. Now getting better, slowly. Good grief.
Hello to all!
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(((Meadow))) you will feel better soon. Take good care of yourself.
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Thx so much (((Meadow))).
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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
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Hi ladies! Just an update on my treatment. I finish rads tomorrow yahoo! Just in time too my skin is starting to burn and i'm getting open sores. I finish chemo monday the 13th double yahoo! All of my doctors have been in touch with each other so next step is petscan march 14 and mri march 16. If scans are clear with no metastasis my arm amputation will be march 20. Put me in your pocket and pray that tumor is still contained. If cancer has spread they won't do the surgery and that would not be good.
Sfgirl I am so sorry to hear about your friend and I am praying for her. Got her in my pocket!
Meadow so glad to hear that your infection is starting to get better.
Annie I never got to speak to you but your an awesome lady! I'm in your pocket and praying every day for you. Your such a strong brave woman! You give me encouragement! Thank you!
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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
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Stopped by to check on our dear friend Annie. Hope all are doing well. Just wishing everyone a happy, healthy, safe weekend! Love and prayers to all.
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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.
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Made it another year! SO grateful! Happy b-day to me!
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Congrats Adarkadaptedi.
Waving hello to all.
Meadow (((hugs))).
val
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Thanks, Val! Never thought I'd be so happy to be 49!!!
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hello to all, Have a great day.
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For anyone interested, I started watching the Coursera on-line class, "Introduction to Breast Cancer". I'm doing the free version though you can pay to take a certificate version. InspiredbyDolce posted information about this on Feb 4th, with a link. Thank you! I have found the course to be very informative. The very first video went over very common knowledge but as the videos have gone on more detailed and complex material has been presented. The instructor is clear and easy to follow. I'd like to hear from others who decided to watch these.
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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 ✨🙏🏻✨
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ShopGal...I know what you mean about worry weirdness. Today I felt lightheaded and dizzy. First thought? Cancer has spread to my brain‼️ OMG😱 I'mnot sure the worry ever ends. I just keep hoping I have lots of birthdays in my future. It's good to have this group so we can express our worries and know that someone "gets it". Hugs to everyone. ❤️❤️
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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."
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hello dark adapt, I just wanted to wish you a happy birthday!! With many more for your future!! I will be celebrating the third anniversary of my 49th birthday on Tuesday and couldn't be happier about it!! Lol
Keep shining bright!!
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just a update....last brain mri and body scan..."good news, we see nothing new, just old dead tumors"
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LisaJ514:
Yes, I still take Metformin. Studies typically show mixed results anyways, without ever a 100% success in the total population of the participants. The materials that I have read to date, shows numerous benefits both in some TNBC individuals, and in regards to overall theories regarding cancer stem cells, and circulating insulin cells, and therefore, I feel it has tremendous value. I've had 3 different Primary Care Physicians since I started it (one retired, one started a new business, and now my 3rd PCP). All of them have also mentioned excellent benefits, and said it was no problem to stay on it - such a longstanding drug with little side effects. I have no side effects, but I take brand name Glucophage as well (have read some generics can be hard on stomach). When I got on Metformin, it was the first time I had slept a full night's sleep since being dx'd, because it made me feel a little more protected, and that translated to taking a little edge off the worry for me, so I could relax just a bit. So for me, in that respect, it has been very beneficial. I'm glad to see that you are also doing so well in your survivorship! Keep up the excellent work!!
PS - Another thing that has been studied to an extent, is the 13-hour fasting period overnight. I do that. So whatever time my last bite of food was at night, I don't eat before the 13 hours is up. Also, regardless of whether the final outcome is on if alcohol is safe for survivors or general population in general, I removed alcohol and diet drinks the date I was dx'd and haven't had a drop of those since in all these years. Some things are easier to give up than others, and surprisingly, these 3 items were easy for me to give up...something I thought would be near impossible to do at one time. LOL I really, really used to love my Tall Beer at Chili's.
Much love and prayers to everyone!
xo,
Debra
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