Calling all TNs

SA8PG

Cathy

So happy to hear about your 3 year mark. We are celebrating with you. ))

Sylvia congratulations on your upcoming 13 years!!! You are so faithful to help on these threads. Your posts are always encouraging.

To all my TN sisters out there, take it one day at a time.

Much love to the newbies. As our sweet Annie would say to us “keep going!!”

urdrago71

Everyone wanted to show u another immunotherapy

https://apple.news/AN6g8qjHHTjGeKSGl02wEvA

santabarbarian

My only risk factor for BC is my exposure to an endocrine disruptor, DES. No genetic BC in my family tree and long-lived relatives. I got TNBC shortly after menopause, and think perhaps the final dropping away of my hormones left me vulnerable to some chain reaction. Insulin resistance perhaps any hormonally- controlled process. I am considering whether or not adding some bio identical hormones after treatment might assist me in fighting recurrence? Anyone doing or investigating this?

LoveMyVizsla

Rebekah, that vaccinedoes sound promising. I think it’s the adriamycin that has the lifetime limit, not cyclophosphamide. But I could be wrong, I’ve tried to push that stuff out of my memory banks.

Cathytoo, I finished treatment on 10/14 two years ago!

Valstim, I’m dealing with lymphedema too, but at this point just doing dialysis manual lymphatic drainage.

SoniaL

Jennifer522, I read about the vaccine trial as well and wondered how we could find out about entering it.

I see my MO on December 4th so I'm going to ask about the possibility of getting in the trial. The article I read said the vaccine should be taken in combination with Trastuzumab. I'm not familiar with that drug - anyone know anything about it? I took Xeloda after my surgery.

PaulaAtlantaGA

Ladies, I'm struggling. I've been taking Xeloda since July 30, initially 4000, very quickly reduced to 3000. I am 7 days on and 7 days off.

This is the end of my 6th week, or what would have been my 3rd set if I'd been about to do 14/7. I am nauseous. I ache everywhere, especially in my weak points (lower back, knees). I feel like I'm 64 going on 90. Because of my IIIa diagnosis, pre-surgery, and both a small remaining tumor as well as 6/14 nodes positive with axillary dissection, I really need to take this stuff. We TNBC folks don't have many options.

It may be that when my anniversary of treatment came and went last week, it's had me a bit down. Feeling the breeze in my short hair, wearing the clothes I wore for my IV chemo, still struggling with range of motion and doing PT for the surgery and radiation on my right side . . . and now it's been a full year. I expect to start the clinical trial for Keytrude Dec 5, so I will have 35 days off from Xeloda. If I do not get in the medical arm (get Keytruda), my MO will want me to finish the normal amount of Xeloda. That will be 14 more weeks of 1 week on, 1 week off. If I do get Keytruda, I will get it through my port, once every three weeks. For all of 2019.

But I am alive and have every expectation of being alive for decades to come. This is just really, really hard. Thank you to all the NED folks who've boosted us as we go through treatment. And thanks for letting me vent.

urdrago71

Paula, same here at least feeling like I just want a shot and call it done.. right now I dont even know where the end might be. Radation next, than Xeloda with hopes of Keytruda..oh and cording so PT til ?? Mixed emotions on the string of yoyo..

Flynn

Paula, I’m sorry that you’re having such a rough go on Xeloda! I hope Keytruda treats you better. Feel free to vent away.

Totally unrelated** We had a guy over to try to sort out the audio system in this house we bought last summer. We haven’t had tv up and running since August! Anyhow while he was here, I made a joke about those clap on/ clap off things that you’d see on tv years ago. You clap from your bed and your lamp turns out. We had one in our dorm room almost 30 years ago. So the guy looks at me and goes, “wow- you’re really showing your age” I said- well you’d probably be amazed at the things I’ve done to make it this far.

He looked at me like I was crazy. What a dufus!!

santabarbarian

https://clinicaltrials.gov/ct2/show/NCT01990209?te...

clinical trial for AR+ TNBC

Trishyla

Santabarbarian,

Hopefully none of us will ever get to participate in that TNBC trial as it's only for stage IV metatastic patients.

Maybe if they eventually open it to earlier stage patients we can utilize it.

Trish

santabarbarian

Or if the drug is able to be gotten off label, like enzaludamide can be

VLH

Well said, Flynn! My mom's home health care nurse saw Mom's high school graduation photo on the wall and asked who it was. When my mom identified it as her, the nurse said, "What happened"? Note that my mother is 85 years old!

It's encouraging to hear about the various research options emerging, but my heart goes out to those of you who've endured treatment for so long. It must feel so grueling and unrelenting. I wish we could offer you something beyond moral support.

On a personal note, I'm pleased to share that I had another clear mammogram, this time only the affected breast. I'm now 2 1/2 years out from diagnosis, but only a year out from my last radiation treatment. (Yes, mine was a long and winding road.) I have lymphedema, but I'm very grateful that the chemo-induced neuropathy in my hands & feet has improved. I'm still struggling to regain my endurance and feel like my "everything" is significantly worse (Fibromyalgia, osteoarthritis, etc.). Especially troublesome is weight gain because I've either lost or held steady for the past 20 years (100# loss) and was at my 1980-ish weight before a misdiagnosed herniated disc and the cancer. I tend to think of the joint pain & weight gain as being associated with hormone-positive drugs. Have others had an experience similar to mine?

Hopefully, people in the not-too-distant future will have access to a cure or, at a minimum, less toxic treatments.

Lyn

anotherNYCGirl

VLH, - I was always 'young' for my age, - in appearance and energy level. These last few years, however, have changed that. I ache all over, - some from chemo after effects, some from the many surgeries, and some from arthritis. My hair is thin and I need to wear a top piece or my baseball cap. I take a tylenol or advil each night to get comfortable enough to sleep, but still wake up at least twice during the night. I have so much to be thankful for, - but I feel that I aged 10-15 years in 4 years.

My Mom is gone several years now, but I have even more respect for her than ever. She had BC when she was 68, and lived to almost 99. I know that she, too, had many aches and pains and I can sympathize now more than I could then. She was very private, and in those days missed out on the support and understanding that I have found on these boards.

Yes, - we need a CURE!! or as you say, at least less toxic treatments until then!!

Thank you all for being there.

VLH

AnotherNYCGirl, I think it was Dr. Susan Love who said our treatments age our bodies something like 20 years, but the PA at my MO's office suggested that fatigue from chemo should be gone by one year so my problems must just be the Fibromyalgia. Why, then, have studies shown that cognitive skills can still be adversely impacted five years after treatment? I wear a baseball cap almost every time I leave the house. I had a thin area on my scalp that was easily hidden pre-chemo, but the front two inches of my hairline never filled in after treatment and the rest of the hair is too thin to effectively do my former "comb-over." I've started wearing lipstick & blush most days so that I won't be mistaken for a man. "Excuse me, sir!" What kind of top piece do you use? Wow! You may have some serious longevity genes if your mom is any indication.

Sonia, on these forums, Trastuzumab is more commonly mentioned by its brand name, Herceptin. Try searching for discussions under the HER2 positive threads. I was initially diagnosed HER2+. I declined chemo / targeted therapy (Herceptin / Perjeta); however, when I had my lumpectomy and got the TN diagnosis, ended up doing AC-T. Now it seems that Herceptin might have a protective effect for triple negative folks? Good grief!

Lyn

santabarbarian

I read a recent study from Mayo that discussed estradiol supplementation for TNBC, to prevent recurrence. Evidently 25% of TNBCs have estrogen receptor beta. If they do, estradiol given to people with ER beta receptors helps them create cystatins, which are onco-supporessive. It feels intuitively right for me as my TNBC arose right on the heels of menopause.

Anyone tested for ERb?

urdrago71

santabarbarian, how do I know if Ive been tested for ERb ?

santabarbarian

I have not been tested for it... it's not typical... so I think you'd have to ask your Onc if your tumor biopsy was tested for ERb, and if not, could it still be tested. I am pretty sure they keep the sample at the lab and can pull it back out to retest it if needed...

Flynn

Lyn, congrats on a clear mammogram! Happy for you. I was premenopausal before chemo. I have had joint pain since a couple months after chemo. (I've been on Xeloda for 6 week or so and no change.) But, two of the MO's that I spoke to commented that going into menopause so dramatically can cause joint pain for a long time. They indicated that returning to my prior fitness level would help but perhaps not alleviate completely. I gained about 20 pounds during treatment. I finally lost about 5 but have slowed down on Xeloda. It's so much harder than previously.

anotherNYCGirl

VLH, - the top piece that I wear most is Sonata ( https://www.wigs.com/products/sonata-top-piece-raq...) but I also have Lyric (https://www.wigs.com/products/sonata-top-piece-raq...) My hair thinned during my 10 years on tamoxifin/ femara, but after the surgeries and most recent chemo it was nothing like before.

Perhaps energy levels bounce back at different levels with our age?

I wish for prevention for all of those not affected, and a cure for those who are!!

VL22

I can sympathize with the body aches! It was bad enough to make me cry for about 4 months following chemo. Now it is aching hips mostly, but can move around. I really do feel like I’ve aged a decade. I’ve always been a runner and I still am, but it is much more difficult.

santabarbarian

Have people w aches tried curcumin? Which is also anti carcinogenic?

I got on it during chemo and all my prior aches went away!

5thSib

Well, it's been about a year since I have been on here, but I like to drop back in each October and say I have survived another year -- 6 years out this month from my diagnosis. Life is good and I feel great. When my diagnosis was new and I was going through treatments, it always helped to read there were long-term survivors checking in here. Best wishes to each of you. And for those of you who are new -- this is beatable and there is life after a TN diagnosis.

VLH

Shirley, congratulations and thank you for sharing the great news!

Thanks for the links, AnotherNYCGirl. I'll check them out.

Thanks for the clear mammogram congrats, Flynn. 🙂 I was many years past menopause before my diagnosis so I know that's not a factor for me. VL22, I can blame obesity plus a family history full of arthritis even among our thin and active members for my joint pain & difficulty regaining my endurance. It's disconcerting that someone like you in good shape at diagnosis still struggles. Sometimes it feels like the medical world thinks, "Get over it! We only care about overall survival, not quality of life."

SantaBarbarian, if I can recall where in the world I put my Foundation One test, I'll have to see if ER beta is something that was checked. I bought a bottle of turmeric curcumin, but haven't tried it yet. How long did it take before you experienced a positive response?

Lyn

santabarbarian

Lyn, it took about a month of being on the supplements I take, and I suddenly thought to myself, wow, my hip stopped hurting. The Naturopath who is advising me said it was likely the curcumin.

Foundation One did not test me for ERb... I am getting that now. 25% of TNBCs are positive for ERb.

VL22

Santa - I will do some research on curcumin. I’m also on tamoxifen because I had a hormone positive tumor also (lucky me!) so I have to make sure I can take it with that. The tamoxifen definitely contributes to my body aches.

I would really like to address it naturally- I hate taking medicine, especially when it starts becoming taking meds, having SE’s, then taking more meds for the SE’s!

5thSib - thanks for checking in! It is so appreciated. So thrilled you’re doing well

SA8PG

5thsib thank you for sharing with us your great news. Congratulations on the 6 year mark. So incredibly happy for you.

anotherNYCGirl

Shirley, - So good to hear from you and read your update! Thanks for checking in!

VL22, - My first onc suggested curcumin while I was on tamoxifin. I tried for a few weeks, but stopped. I may try again!

Flynn

Congrats, Shirley!! Thanks for checking in.

When I first started complaining about joint pain, my MO seemed surprised. I had to keep bringing it up to every dr that I saw to get any recognition. I'm not sure if the MO just isn't as involved in post treatment issues once she stopped seeing me every week or if she didn't want to scare me off meds. It seems like the drug warnings didn't really mention it. Either way, I was taking any chemo offered so I may have not focused on that aspect.

I will definitely check out curcumin. I will also ask about AR and estrogen beta testing. It may open the door to a trial down the road.

VLH

Thanks for the information, SantaBarbarian. I need to put the supplement in my pill case because I keep forgetting to take it.

Lyn

Gussy

I have just heard a really weird story from my daughter in law re: her older sister's cancer diagnosis. She evidently had a large lump that was treated with neoadjuvent chemo, then had surgery - single MX, radiation. Results showed triple negative in the lymph nodes but nothing in the breast. I'm assuming the chemo eliminated the breast lump. She was burned by the radiation. If the chemo eliminated the breast lump, why not the lymph nodes as well? I guess she is a compliant patient as she has done everything and will continue with post rad chemo but has no fight in her. Has anyone heard of a situation like this?