Calling all TNs
Comments
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Or if the drug is able to be gotten off label, like enzaludamide can be
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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
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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.
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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
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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?
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santabarbarian, how do I know if Ive been tested for ERb ?
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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...
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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.
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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!!
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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.
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Have people w aches tried curcumin? Which is also anti carcinogenic?
I got on it during chemo and all my prior aches went away!
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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.
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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
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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.
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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
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5thsib thank you for sharing with us your great news. Congratulations on the 6 year mark. So incredibly happy for you. 0 -
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!
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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.
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Thanks for the information, SantaBarbarian. I need to put the supplement in my pill case because I keep forgetting to take it.
Lyn
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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?
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I can report that my breast tumor disappeared before my lymph node tumor did. Now they both appear to be gone but I believe that sometimes the secondary site is harder to get rid of. I read that this is so. Sometimes the cells are morphed, or there are more stem cells.
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I don't post much, nor do I read a lot...……..so please if you want to talk (anyone here) e-mail me so that I will see it. I am sorry that I cannot be here but my mind won't rest when I am. Please reach out to me though if you need to talk.
I just wanted to say that I am still cancer free at 7 years after the 1st diagnosis and 5 years after the 2nd. Thank God.
JUST WANTED TO OFFER SOME HOPE FOR THOSE THAT ARE SCARED AND FIGHTING HARD!!!
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I'll jump on Stupidboob's bandwagon too! I am here and doing great 8 years later. So grateful for my life. We just celebrated my daughter's wedding in September and my husband and I are planning to retire in 3 years (at 57) with lots of traveling plans before and after retirement (and hopefully grandkids at some point
. Can't wait for the next chapters of our lives! For those in active treatment now, I know it can feel like you don't want to plan too far in the future. But you will get passed that. Hugs to all!Kathy
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Thank you for sharing and Congrats Stupidboob and Kathy..
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Thanks for sharing Stupidboob and Kathy. I'm just now starting this journey and scared spitless. (my mother died of breast cancer in 2003) It's really great to hear from people who have beat this beast and are still thriving.
Hugs
Susan
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Hello Susan,
I just wanted to say that I read your post and wanted to tell you not to be afraid. You can get through this journey like the rest of us have done. I can understand how frightened you must be with your mother having died of breast cancer in 2003. I was diagnosed in 2005 with triple negative breast cancer, IDC, and I am now 13 years and 4 months since diagnosis and am living a normal life. You can do this.
Love.
Sylvia xxxx
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Just wanted to say hi at 2 years after the treatment.
For me it was important back in the days to see people who didn’t disappear from here. I remember seeing someone’s last post/log in moths ago and thinking “something happened, for sure”
So... hi!
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beautiful, encouraging news!!
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Glad you stopped back in Joy777. Have a wonderful Holiday season!
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Flynn - I had lost 20 pounds before Xeloda . . . and have gained 15 back. My oncologist suggested i take my nausea med from the earlier IV chemos twice a day as I was eating for comfort for my tummy (breads, crackers, simple carbs). I know better, but I craved them with Xeloda. I am at least holding now, and maybe losing a few pounds. If nausea/queasiness/icky tummy are problems for you, you might consider asking for a nausea prescription. Mine is Ondansetron.
VL22 - I am amazed you can still run! My mother had rheumatoid arthritis which, thankfully, I do not. But my lower back and knees have become so painful post-IV chemo. After being sure my lower back was not TNBC, I have had two epidurals for pain and have found enough relief to begin exercising again. My knees are tremendously week, and when I'm off chemo (mine is a long path), I plan to give attention to them. I've had so many steroid shots I don't think I want to go that route again. BTW, I was still on the smallest dose of Minivelle (estradiol patches) when I was diagnosed. My hysterectomy at 40 put me into instant menopause, and I had to educate myself about "natural" hormones (vs Premarin, etc.) I'm 64, but both my gynecologist and my psychiatrist felt that remaining on this small dose of estrogen was OK since I had significantly reduced estrogen in my system beginning at 40. That was, of course, before TNBC. I weaned myself off the patches in three weeks.
While I do take curcumin, I have learned through trial and error that I am gluten- and dairy-intolerant. Eliminating those from my diet resulted - in 5 months, not overnight - in considerable less pain/inflammation in my joints as well as ridding me plaque psoriasis that I'd had for 30+ years. And until I discovered all the delicious gluten-substitutes (breads, pasta, cookies), I also lost those 20 pounds.
We CAN do this ladies. If, like me, you feel at least a decade older than you are, perhaps we can take consolation in simply being here. I'm not saying that quality of life does not matter - I'm just glad to be here.
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