Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Podcast: Hope After a Triple-Negative Diagnosis

1…1516182021

Comments

  • moth
    moth Member Posts: 3,293
    edited March 2018

    momkidsgrandkids38, this forum doesn't thread replies & you can't tag people in your replies either so it can get kind of frustrating.

    Seems most people just put the person's name they're replying to in bold at the beginning of their post & hope that the person sees it (which they might not if they're subbed to the forum & keeping track of new posts...)

    Anyway - welcome :)

  • momkidsgrandkids38
    momkidsgrandkids38 Member Posts: 28
    edited March 2018

    I am new to the forum. I was diagnosed in november of 2016 with IDC, stage 2, grade 3, 2/13 nodes triple negative. Had lumpectomy and 13 lymph nodes removed in December. Dr. Found IDCS in left breast. Suggested mastectomy.

    Started chemo in February: AC-4 cycles, Taxol-12 weeks

    After chemo decided to have bilateral surgery with reconstruction in July.

    Did radiation 5weeks daily finished in November...

    Now here I am awaiting my implant surgery May 1st to find that the cancer has returned in my lymph node... I'm at a loss I don't know what to do, think, or how to feel.. has anyone else had the same experience?

    The surgeon doesn't sound hopeful because of the grade. The size based on screening is 1.2 cm i'm awaiting a consult with surgeon to discuss treatment plan.



  • momkidsgrandkids38
    momkidsgrandkids38 Member Posts: 28
    edited March 2018

    Thanks moth. That does seem frustrating especially if your trying to connect with a specific person..

  • moth
    moth Member Posts: 3,293
    edited March 2018

    momkidsgrandkids38 - I would suggest you post on the recurrence threads. https://community.breastcancer.org/forum/106

    I think you'll get more replies and input there.

    hugs

  • momkidsgrandkids38
    momkidsgrandkids38 Member Posts: 28
    edited April 2018

    thank uou moth I will reach out there

  • scoobydoo
    scoobydoo Member Posts: 20
    edited April 2018

    Just checking in. Still NED after 9 years! For those of you diagnosed triple negative, you can have a long life after diagnosis.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited April 2018

    Scooby, - Thanks for your post! Love reading posts like yours!

    Wishing you (and all here) decades more of good health!!

  • Sweetybert
    Sweetybert Member Posts: 8
    edited April 2018

    Hello everyone,

    I finished myself radiation treatments on April 2nd. I rung the bell and cried. This has truly been an unimaginable journey. I blistered from the radiation treatments and had to stop for two weeks but i made through all 33 treatments. My faith in God continues to sustain me as I try to find some normality in my life. I gained 32 pounds from steroids and just not having enough energy to exercise after teaching 7-8 grade students. My nails. Show signs of clearing up and i feel great. Now I go to the gym and walk for at least an hour and do resistance training twice a week. Sometimes I feel like running but I'm not going to push myself. I have my next visit with my OC, in May along with my mammogram port flush, visit with Radiation Dr and BC doctor. Waiting to exhale until then, living life with a grateful heart.

    Sweetybert

  • momkidsgrandkids38
    momkidsgrandkids38 Member Posts: 28
    edited April 2018

    Hello Sweetybert, I am so happy to hear everything is working out for you. Stay strong and our Lord will do the rest.

  • ettasmom
    ettasmom Member Posts: 4
    edited April 2018

    Congrats to you Scoobydoo on 9 years with ned! I am 6 1/2 years and hoping for many more. Just a quick note of hope for those going through this. I highly recommend the book Radical Remission by Kelly Turner. It will fill you with hope and give you many options for optimal results. Best of luck to all of you and stay strong and positive, attitude is huge!

  • urdrago71
    urdrago71 Member Posts: 500
    edited May 2018

    Hi TNBC group, I know I'm not alone but don't see many posting by TNBC within the monthly groups starting chemo in March or April 2018. so far I'm managed thru 2 cycles of AC and my 3rd of 4 is tomorrow. I was hoping for advice since my next phase will be taxol weekly with carboplatin every 3 weeks.. nervous about the next phase. Is it a must to ice hands and feet for taxol? What else should I buy before Phase 2 of chemo?

    After 12 weeks for taxol combo I will have surgery. How long of a gap between chemo til surgery happens? I know I will be looking during the month of June for plastic surgeon and surgeon for my team. Anyone else I should consider for next steps or be buying before surgery?


  • Hariry
    Hariry Member Posts: 100
    edited May 2018

    Hi urdrago,

    I've completed my AC in Feb, I must say that 3 months were awful. Now I'm undergoing weekly taxol, just did #9 yesterday. This is much much easier. I've been taking vit B+ lipoic acid, I didn't ice my extremities, neuropathy sat in after#7, gradually but tolerable. Taste buds were dead few days right after chemo. I'll post a list shared by another forum friend., recommended while on taxol. If you can presevere for AC, trust me, taxol is manageable.

    My tumor was 1.5cm hence the BS did a lumpectomy before starting chemotherapy. I guess they will wait for 3-4weeks after you complete the chemo before doing the surgery. Of course we've heard different scenarios, different stories. If lumpectomy is the surgery basically you need to take 2 weeks off, and nothing much to buy/stock.

    Warm wishes,

    Hariry

  • Hariry
    Hariry Member Posts: 100
    edited May 2018

    image

  • vl22
    vl22 Member Posts: 471
    edited May 2018

    My MO only suggested the complex B vitamin and the drink enough water.

    My team is very anti supplements. Also never saw anyone icing during my 5 months of chemo.

    Funny how every place is different. I will say that I had no neuropathy during or after Taxol, but I had horrible muscle and bone pain for week after I finished.

  • urdrago71
    urdrago71 Member Posts: 500
    edited May 2018

    Thanks for all the suggestions. My MO is okay with vitamins , so I will be stocking up my cabinet even more. Right now I'm sitting my infusion it's 3rd of 4.. Cannot wait to get off the AC and onto the weekly infusion. .just means I'm getting closer to the end goal. Got a metal taste in my mouth already. So nothing taste good, I usually eat well days 6 thru 13..

    Does taxol change ur taste buds more so eating specific food during AC, u no longer enjoy ?

  • vl22
    vl22 Member Posts: 471
    edited May 2018

    I was so nauseous on AC , but I ate through it - my MO said I was the first person he ever met who ate to feel better! On Taxol I had no nausea and had no food phobias like I did on AC - certain things just made my stomach turn. Taste went back to normal.

    I will say that for me Taxol made me put on weight. I lost 6 pounds on AC and gained it right back on Taxol. After 12 weeks I had an extra 5 pounds and for a couple months I couldn’t get rid of an ounce. It was discouraging. Then it slowly started coming off.


    Good luck!!

  • urdrago71
    urdrago71 Member Posts: 500
    edited July 2018

    vl22, thanks for the information. Everyone reacts differently just hoping I will have the less SE's ..hugs

  • cccmc2
    cccmc2 Member Posts: 102
    edited May 2018

    I am triple negative....regarding lymph nodes: I had no lymph node involvement , or vascular invasion as well as clear margins with my breast cancer. Supposedly it was all removed with surgery. I am now doing 4 rounds of AC, and 4 rounds of taxol, which dramatically decreases the reoccurrence rate. My question is this: can breast cancer spread without being in the lymph nodes or vascular system?? I didn't think so? I was on another breast cancer site earlier talking with someone who said she has bones Mets front her breast cancer But she had Clear lymph nodes. She said it traveled through her blood. Now im really scared and I wasfeeling really good about my prognosis. My Dr didn't feel i needed a body scan with my diagnosis. I had To beg my Dr for chest ct scan which was clear. Any info or advice Iswelcome!!

  • Lovemyyorkies
    Lovemyyorkies Member Posts: 43
    edited June 2018

    I just joined. Hard to believe life can change so fast. Lumpectomy 5/25 .I have TN IDC multi foci stage 1a grade 3. (2mm and 1.6mm. )And DCIS grade 3.(12mm) Unknown on lymph node as had false uptake and DR. didn't think I needed one since such small area. I will see radiation oncologist 6/12 regarding mammosite radiation. Dr didn't think chemo would benefit a whole lot. Any suggestions or has anyone had this?

  • moderators
    moderators Posts: 8,633
    edited June 2018

    We are sorry you have joined us, Lovemyyorkies. Sounds like there are a few things going on. Have you had also a second opinion?


  • Lovemyyorkies
    Lovemyyorkies Member Posts: 43
    edited June 2018

    Will see radiation oncologists in AM . Hopefully he can answer some questions. Scheduled for mammosite catheter insertion on 6/13. To start radiation 6/18. Twice a day for 5 days. Dreading not being able to get shower for 10 days

  • JCA1984
    JCA1984 Member Posts: 3
    edited June 2018

    My wife just started her 1st of 12 Taxol sessions this week and they used the ICE mittens and booties on her hands and feet. It is supposed to help reduce/limit the chances of developing Neuropathy.

    Her Doctor has also suggested she take B6 and L-Glutamine during Taxol.

  • moth
    moth Member Posts: 3,293
    edited June 2018

    Hi JCA1984 & welcome. You & your wife might want to join the weekly Taxol group as well :) We talk specifically about how we're dealing with taxol there.

    https://community.breastcancer.org/forum/69/topics...


  • Donniebella
    Donniebella Member Posts: 1
    edited June 2018

    hello ladies. i was diagnosed with tnbc in febuary 2018. i have completed my first roud of chemo, which was hard for me, and i have started my weekly chemo for 12 weeks well im on week 6 of 12. i actually gained weight with chemo (20lbs) my friends said my diagnosis must be wrong because i eat like a woman expecting twins, i wish i was lol.. i dont have a lot of the side effects i see women complaining about from chemo. when i get the metalic taste in my mouth i suck on a jolly rancher and it goes away sometimes i brush my teeth. what i experience is a massive headache that comes on at different times of the day. i do appreciate reading how cancer can be beat and the positive words that we share with eachother on here. lets keep our heads up a continue to be supportive of each other hugs kisses and prayers

  • nurseruthie
    nurseruthie Member Posts: 2
    edited July 2018

    Nance, my 35 year old daughter was just diagnosed with TNBC last week. She has been offered participation in a study at Yale with immunotherapy in addition to chemo and it will be 12 weeks of treatment, so that sounds similar to what you did. She will then have AC for 8 weeks (2 weeks on and 2 weeks off) for 4 cycles. Next step as I understand it will be surgery to remove tumor bed followed by radiation. Do you have any words of advice? And how are you doing my dear? We will be praying for you along with all of you other TNBC girls.

  • janinev
    janinev Member Posts: 1
    edited July 2018

    Hi There!

    ...just checking in, too!

    Been a REALLY long time since I've logged into this community, and

    I'm still "dancing with NED" 8yrs + 5 months after my dx of stage1 BRCA1 TNBC, back in 2010.

    Sooooo...I'm very happy to report that It's most definitely SURVIVABLE!

    BTW...if you haven't already, I suggest reading "Surviving Triple-Negative Breast Cancer", by Patricia Prijatel

    {{Huggs}} to all :)


  • karentwriter
    karentwriter Member Posts: 113
    edited July 2018

    cccmc2,

    If it makes you feel any better my doctor also said that with chemo and radiation (4 rounds of Red Devil (AC) and 10 or 12 rounds of Taxol and 6 weeks of radiation) my doctor didn't do any scan either. They check my blood every so often and I have a mammogram scheduled in September. My numbers of survivability was about 92 or 93% with all of this? But they all (all my doctors involved) feel like I have a great prognosis, like you. They are confident it was taken care of with surgery and everything else is to increase odds and be sure no random cells escaped and set up camp somewhere else. I have heard it can spread otherways besides lymph nodes, however, that is why we put our bodies through hell with the chemo, right? :)


  • meow0369
    meow0369 Member Posts: 126
    edited September 2018

    janinev, thanks for your post and I checked out your website. I really liked it and all the info you put together. Well done, thank you for doing that for us Braca 1 carriers. We do have a very different situation than others and hope more will be brought out. I'm hoping my kids do not carry it, my mother and four of her 7 sisters were carriers too. My mother is still around but have lost 3 sisters. I heard on the Today Show last year there is a vaccine that is very promising and is currently under trial. I believe for teens, etc.

    You should post on the Braca forums here, it's hard to find people with our genetic history.

  • donnadio
    donnadio Member Posts: 674
    edited September 2018

    i too, have the BRCA 1 Gene. I had that diagnosed with a genetic counselor when i had the DX of my triple negative BC back in 2008. I had my ovaries removed after surgery and chemo. It is so awesome to hear that there is a vaccine in the making as the research has to be expanded here for this type of cancer is very challenging to say the least emotionally. I am grateful I have been ok for the last decade and able to help others in this dreadful disease. We are here sharing a genetic info and appreciate all the info shared here!

    Hugs,

    Donna

  • momkidsgrandkids38
    momkidsgrandkids38 Member Posts: 28
    edited October 2018

    Donna your story is amazing. It gave me confirmation "there is a light at the end of all this". Thank God for your health!

    I am inspired to share my story. I was notified of stage IV mastastic bc earlier this month. This is the 2nd occurrence within one year. Tonight is actually my first night of chemo (xeloda). Intial treatment was AC and Taxol, radiation, bilateral mastectomy, and lymph node dissection. Praying mediation won't have sevre side effects.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.