Calling all TNs
Comments
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Simple= So sorry, I am with you in spirit at your appointment holding your hand. Think positive which is easier said than done. Keeping you in my prayers!!!
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simple
Sending you thoughts and prayers and good, good vibes. Hugs!
Arlene
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Simple, - looking forward to your report of BENIGN!
Arlene, - you look amazing!!
Luv, - i am SO glad that pessary is out!!
Welcome to the newbies here! these boards the BEST and are my survival mechanism!
THANK YOU for the good thoughts and wishes re my lat flap. I got home last night, with drains (ugh) and cant wait to have them out!
I am sure that I wanted to respond to more of you individually, but my mind is mush today =/
Hugs and BE WELL wishes to all!
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Simple, joining the others in wishing you only a clean bill of health! I feel good about it
Hugs
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Simple, You have a great attitude about the upcoming biopsy. Good for you!! I recall that you went through another biopsy a few months back with equal grace. Having just gone through a benign one myself last month, I know there is still, understandably, some anxiety. Wishing you well and keeping you in my prayers for a successful outcome.0 -
AnotherNYCgirl, so glad you're home!!! The drains are so annoying but they will be out in no time. Get some rest and take it easy while you can! Thanks for posting. I've been thinking about you. HUGS!!
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Thx, Anothernycgirl, So glad you're home and hope you're healing quickly! Ugh, not fond of those drains, but hope they do their job, and take a hike!
Hugs! Arlene
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AnotherNYC I'm so glad your home and things went well! I hated the drains but because of complications I had to stay in the hospital a week and as a going home present I got my drains out the day of discharge! You'll feel better once they are out but for now I hope you are resting in the comfort of being home! Yahoo!
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I LOVE YOU amazing ladies!! OXOXO
Thanks sooooooooooo much!!
(Hope you are safe and dry, - here in nyc area the rain is like a monsoon!!)
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Simple...I have been thing about you all weekend. My heart goes out to you and I'm hoping that the lump will be benign. I love your outlook though...at least if it's something it's in the opposite breast and could be a new primary. But my fingers are crossed and I'm praying for you sincerely that it is a benign lump. I hate this disease. I have dealt with this beast twice and my prognosis is excellent.
I'm hoping I'm not sounding like Debbie Downer, but in my heart I know you will be fine. Please feel free to PM me if you want to talk.
Thanks to everyone for your well wishes. I'm hoping the epidural will work this time. This is my 4th injection in about the last 4 years and really they have not helped me much. I take neurontin and the occasional Percocet. My quality of life is poor because I can't stand up for long or walk too far. And dealing with the side effects of cancer is too much even though my last treatment was in January of 2014.
I'm sorry ladies for "talking" so much. Not in such a great mood today. So sick of being sick and tired. Just feel like crying for some reason.
Have a good evening ladies and thanks for listening.
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Simple, sorry to hear this, I'm thinking of you.
Just checking in- saw MO in April and everything is great!! She wants me to do bloodwork and have a followup PET scan before I see her again in July. Scan is scheduled for June 10, so please send some good vibes my way.
I hope everyone is doing well and will have a great summer! We just got back from a week at the beach with all my kids and grandchildren, it was wonderful!! Now back to reality.
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Simple...I so admire your strength and your attitude going into this. Saying a prayer that this is a great big benign hunk o' nuthin!
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Thanks to you wonderful ladies for all your kind words of encouragement. I took a couple days off to try to focus on other things in my life (and try to forget about the cancer) and that went so so... I returned to work today and that was good. Focusing on other's people's problems for awhile was therapeutic for me in an odd way. Plus, we were in the middle of buying a farm when I got the diagnosis. We've decided to embrace positivity and move forward, but packing and moving are not at the top of my priority list. Meeting with the MO on Friday, so I guess? I will learn what the plans are for surgery/treatment, but I have no idea. It's all so confusing. I'm supposed to also meet with a plastic surgeon next week but I'm not sold on reconstruction. Part of me says to again embrace positivity and go ahead, yet part of me says to preserve quality of life and wait until I hit that 3 year mark before reconstructing. Thoughts on that?
Question for you all: I am currently a full-time graduate student. My program is online, so I don't have to be physically present in class. I do, however, have weekly assignments and papers that I am responsible for. Trying to look ahead, my next class starts in July, which is when I assume? I will be undergoing surgery and treatment. Based on your experiences, do you think I will be able to continue with my program? I currently spend about 10-12 hours a week (all on the computer) towards my program. Will I be too tired? too confused? too everything to continue? I have to make a decision soon and I'm just lost. Of course, once I drop below full time status, the loan repayments will start rolling in, so I'm inclined to try it, but I'm totally unaware of what I will be facing in terms of fatigue and general illness.
I hope everyone is well and that we all had a great weekend.
Pavlovsbell
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Pavlovsbell glad to hear you are managing to stay positive until all of your plans are in place and a couple of days off to focus on other things will help. I had my chemo on a Wednesday and side effects thankfully didn't hit until Friday evening and carried on until Monday morning so I was able to work on the computer all the way through my chemo. I found it better for me if I stopped working when I occasionally felt tired (such as Monday mornings) and then went back to it later. You will make your own plans and do what suits you best but it is great that you are embracing the positivity of this journey and are already looking ahead. Your farm will keep you busy and hopefully you won't have time to think about treatment too much. Hang in there, you can do this.
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Pavlov, I actually think it would be a good thing to take the on-line course while you are going through chemo and rads. You might have an issue with weekly assignments if you are getting surgery during that time. The issue would be getting the weekly assignment done during the week after surgery. Even then, I think you could do it if you can type. That would depend on the type of surgery you decide to have. The good thing about the coursework is that it would force your mind to think about something other than cancer. Chemo is draining, but the "mind fog" isn't so bad that you can't do things like read etc. My husband and I moved to a different state about three weeks before I was diagnosed. We still were unpacking boxes when I got my diagnosis. Doing things around the house suddenly took a VERY LOW priority for me, so I hear you on the packing to move to the farm. Hubby and I did what we needed to do to make the house comfortable for me during chemo, but left things (like straightening out the garage) for another day. I'm a little over a year out from finishing treatment and we just now got around to a deep cleaning and organizing the garage. I don't think housework will ever have the same level of importance to me that it did before cancer. My priorities have just changed. I'm okay with that! You will figure out what is important to you. On the subject of surgery, if they do the chemo first, you will have a lot of time to do research and make your decision on what kind of surgery you want. I think you are very smart to take into consideration how hard it is on your body to go through reconstruction. You haven't posted your stage of cancer so I have no idea if you will need radiation. That is something else to take into consideration when thinking about reconstruction. Have you met with your medical oncologist and breast surgeon yet? The MO will let you know if he/she recommends chemo first and the breast surgeon will talk to you about your surgical options and reconstruction. Reconstruction is done by a plastic surgeon. The breast surgeon will hook you up with a plastic surgeon that can explain your options further. I hope that helps a little bit. You will feel so much better once you know your plan of treatment and actually get started. This period before treatment starts is a rough time because you don't really know what to expect. It will get better. ((hugs))
On another matter, my biopsy is scheduled for this Thursday. That means it will be next Monday or Tuesday before I know the results. I'm just going with the idea that it's scar tissue. Whatever it is, there is nothing I can do about it now other than wait and find out. We are going up to Illinois to visit with my son for a week immediately after the biopsy, so that will keep me busy. In the meantime, I try not to think about it too much!! Thank you for everyone's kind thoughts and words of encouragement. I will post what the results are when I get them next week.
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Pavlovsbell: Years ago I had an online classmate that was back to class 2 days after he donated his kidney. My graduate school professor told me that she went through cancer treatment while she was writing up her dissertation (there is usually less pressure about its time frame, though) but it was challenging. I feel you should look at the syllabus thoroughly--maybe ask to see it ahead of time--and discuss with the professor about assignment requirements. So you can do some of them beforehand (e.g. literature review) on the days you feel better. Otherwise, I feel you should focus on your health foremost. Graduate studies are stressful and tax on one's immune system, which is undesirable during chemo.
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Hey Annie - Jumped on to read some posts and to catch up and I saw that Navy Mom just celebrated 6 years. Congrats to you and I wish us all 100 more good years, lol! (well - maybe not a 100!). I hit 6 years in February - so as of the present I am 6 years 4 months out - but who's counting! Still love reading all your posts Annie, infused with so much laughter, love spit and vinegar! Hope everyone enjoys a good summer, and will check back in with you soon Annie Girl.
Love you,
Linda
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Thank you, sweet Teka - and you have the very same!
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Simple, hope biopsy went well today . I've been quiet here but definitely getting nerved up about my 6 mo mamo and us tomorrow. Had one 6 mo ago and they found an area to biopsy. It came back benign. Anything that looks even mildly different they want to biopsy. Afraid they will find something every time and I'm always afraid it could be something bad again. I feel thickened areas on my lumpy side but this is expected with scar tissue and all and radiation. On my "good" R side I often get some weird feelings and some zinger type of pains. Mentioned it every time and nothing showed up on mamo or us or mri but I still get nervous as only all of you can understand. So here we go again tomorrow hoping for nothing but trying to prepare if they find something to test further. Deep breaths!
Linda, congrats! Our stats are so similar. I want to be where you are....now!Do you still get so nervous for mammos and us?
Navymom, you too. Congrats!!
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WOnderful posts from the 'old timers'! Thank you for sharing!!
Lisa, - sending wishes for a QUICK and GOOD mammo!!
Simple and Lisa, - post your news!
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Thank you, LisaJ - and you too will get to where I am now, as I know only too well that 6 years ago, when first diagnosed - I couldn't even imagine 3 years in the future and being cancer free - let alone 6, but here I am, as are so many others. While I very seldom think about the ugly "c" word and/or recurrence, I would be lying if I said I never think or worry about it. I do, but with a totally different perspective 6 years later. Get a bit apprehensive before each yearly mammo as that was how my cancer was originally found - but I guess that will always be the "norm" for me under the circumstances. As for sensitivity and zingers in the lumpectomy breast, I too still have that and my Breast Surgeon says it will probably always be that way - it's totally normal for some of us as so many nerves were cut leaving exposed ends. Wishing you the best always,
Linda
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My wife is weakly positive on PR and negative in the other two areas. Her BS and MO are treating cancer as if she's trip negative. My question is...can my wife receive hormonal therapy even though she's not a true triple negative?
Thank you and God Bless!
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Altering the tumor microenvironment: A phase II study of copper depletion using tetrathiomolybdate (TM) in patients (pts) with breast cancer (BC) at high risk for recurrence.
Sub-category:
Cancer Angiogenesis and MetastasesCategory:
Tumor BiologyMeeting:
2015 ASCO Annual MeetingAbstract No:
11008Citation:
J Clin Oncol 33, 2015 (suppl; abstr 11008)Author(s):Eleni Nicole Nackos, Naomi Kornhauser, Maureen M. Ward, Tessa Cigler, Anne Moore, Eleni Andreopoulou, Nancy Chan, Veronica Fitzpatrick, Sarah E. Schneider, Alysia Wiener, J. David Warren, Anna Rubinchik, Amy Willis, Sharrell Lee, Maureen E. Lane, Vivek Mittal, Linda T. Vahdat; New York Presbyterian Hosp-Weill Cornell, New York, NY; Weill Cornell Medical College, New York, NY; Weill Cornell Breast Ctr, New York, NY; New York Presbyterian Hospital, Weill Cornell Medical College, New York, NY
Abstract:
Background: Bone marrow derived endothelial progenitor cells (EPCs) and copper-dependent pathways are critical components to remodeling the tumor microenvironment and creating the pre-metastatic niche. Copper depletion (CD) inhibits tumor metastases in preclinical models. We hypothesized that TM-associated CD would reduce EPCs and other copper dependent processes in the pre-metastatic niche in BC pts at high risk for relapse. We investigated the relationship between CD and its effect on EPCs and other components of the tumor microenvironment including lysyl oxidase (LOX).
Methods: In this single arm, phase II study, BC pts at high risk for recurrence, defined as node+ triple negative (TN), stage 3 and 4 with no evidence of disease (NED) were enrolled on a trial of CD with TM. We utilized TM to maintain ceruloplasmin (Cp) between 5-17 mg/dl until end of treatment or relapse. The primary endpoint was change in EPCs measured by flow cytometry before and during treatment with TM. Secondary endpoints included tolerability, safety, and its effect on other markers including LOX.
Results: We enrolled 75 pts. The study treatment duration was 24 cycles (28 days each). Over 2021 cycles have been administered. The median age is 51 (range 29-66). 45 pts have Stage 2/3 BC and 30 are Stage 4 NED. 48% of pts have TNBC, and 40% of pts are Stage 4 NED. Median Cp level decreased from 28 at baseline to 16 (p < 0.0001) after one cycle. Copper depletion was most efficient in TNBC. TM was well tolerated and the only grade 3/4 toxicities were reversible neutropenia (2.5%) and anemia (0.04%). CD was associated with a significant decrease in EPCs (p < 0.001) and LOX (p < 0.001) in the 2 year analysis; the 5 year analysis is ongoing. The PFS for all 75 pts from the start of TM treatment was 81% including a PFS of 94% for all stage 2/3 pts with TNBC at median f/u of 5.6 yrs. The hazard ratio for relapse is zero at two years.
Conclusions: TM is safe, well tolerated and appears to affect multiple components of the tumor microenvironment creating an inhospitable environment for tumor progression. This seems to be most striking in TNBC. Further phase III trials are warranted.
Clinical trial information: NCT00195091
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Key Points for This Promising Copper Depletion Therapy Clinical Trial:
1.This trials began from Dec. 2003 and ended on June 2014.More than 10 years.
2.48% of total 75 participants have TNBC è 75 * 48% = 36 TNBC participants.3. After Feb., 2013, about 25 TNBC patients enrolled this phase II clinical trials.
4. 94% progression-free survival for all stage 2/3 TNBC patients at median of 5.6 years è Only 36 * 6% ~ 2 of 36 TNBC participants relapsed within 10 months after using tetrathiomolybdate, one patient recurrence at month 2 and the other recurrence at month 10.
5. Further phase III trials are warranted by FDA, and waiting for funding.
6. P.I.Dr. Linda Vahdat told patients
I. In order for TM to work, it needs 5 months before relapsing.
II. All participants who stopped the pills after 2 or 4 years, no one has relapsed. It means that patients don't have to take tetrathiomolybdate forever.
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You ladies are so awesome and I so appreciate your advice about my school program. If I can get the universes to align, I would elect to have surgery during my final four days of class, because then I have a week off before the next class. I saw the MO today and she says I am "clinically" a stage 1a...and of course, we hope I remain there after surgery. She said I could either do chemo then surgery, or surgery then chemo. She feels strongly that from a oncological perspective, they are equally effective. I'm wondering if things are different from a patient perspective?
Loved hearing from those of you who are years (yay!!) out from diagnosis!
Lisa and Simple, you are in my thoughts and I'm sure we are all ready to hear your good news.
Pavlovsbell
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Hi Friends
Lisa and Simple...thinking of you...sending HUGS! and good results.
Welcome, BAT...great info and friends are here. My PR was weakly positive...which is really negative...no Hormone Therapy for me. Surgery, Chemo, and Recon is next. Wishing an easy road for your wife.
Linda, CONGRATULATIONS! and thanking you showing us light at the end of the tunnel!
To all who are still doing chemo...minimal SEs are my hopes for you...I have 2 more weeks til I am" freed" from my last TC.
Sure don't want to be vain...but do you know of any tricks to get some hair and eyebrows growing? I am not sure if more lashes and brows will go? I lost half to 3/4 of each. I have 1/2 " white and brown fuzz and hairs in patches on my head. I hate that I have to go to Recon SX July 7, with no hair or wig. And I totally forgot this dilemma...what do I do if I make it to a pool or beach by summer's end? I try to distract myself from TN worries by thinking about getting some "normal." I know the hair is months away...as long as it comes back...I'm good.
Hugs to All!
arlene
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Thank you, Arlene
I was afraid of that...just one less bullet to shoot at the cancer. UGH!
Vr,
BAT
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That's ok, BAT.
We Are Tough and We Will KILL those cells!
Chemo works more efficiently on (KILLS!) rapidly dividing cells, i.e. TN, high grade cells.
WE GOT AMMO!
hugs!
arlene
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hi gals, mammo and U.S. were clear! Yay! Radiologist said scar tissue and normal surgical and radiation changes on L (lumectomy) and normal glandular tissue on R. It was the same radiologist that has seen me prior that read the scans. I actually asked her "are you sure?" I really was ready to hear that there was some suspicious area to biopsy. Relieved! I was actually calmer that I thought I'd be at the test. I think we get mentally stronger as time goes on. I'm normally a crier when I get nervous. And it hurt on the L sid but I worked on my breathing to stay clam, except for when they tell you to hold your breath, Lol!
Well thanks for the good wishes.
Waiting for your results, simple, and hoping for good things
slyv, how are you doing with your treatments?
Arlene, I was so anxious about the hair regrowth also. If you have 1/2" already, that's great! It will grow fast now. And this is the perfect time of year to go really short. No one will probably notice, and you live in NYC, so you'll look edgy and cool. Wear big earrings, some cool sunglasses and go for it. I actually used coconut oil and castor oil on my head. Look it up. Supposed to stimulate hair growth. Don't know if it helped but it felt good to do something. Rubbed it in my head then put a bandana on over and left on for an hour or so then washed off. I bought something called model brows online rec by a BC.org girl. Brushed on brows, maybe helped. A friend sells essential oils and cedar wood oil is supposed to be good for hair growth. It just felt good to be trying something. Made me feel like I was in some control. This was how I looked last summer
when just starting to go top less. About 2 wks after this I finished rads and no covering full time unless in an air conditioned place then wore a baseball cap. Filled in eyebrows here. Second pic is a 5k I ran 1 wk later!
g
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Lisa
GREAT NEWs! I am so happy for you! And I know you feel relief. Ugh. Waiting for results is the worst.
Wonderful pics, and thank you for the hair advice. My hair is much more sparse than yours is in the 2 pics. I am afraid. But I just had last TC 1 week ago, so hopefully, in a month or 2 it will thicken. And I will try some coconut oil, tree oil, and ask my MO about vitamins, etc. Love your earrings, and funny... Date of first pic is date of my upcoming recon sx, and I see my favorite salad dsg in your cabinet. Lol! Great shot of you finishing! I can't wait to get back to the gym. One more week of SEs, and I shd be good to go!
You look Mahvellous!
Stay Healthy!
Love, arlene
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Lisa-YEAH! I'm so happy to hear everything is normal and good for you for being proactive! Please Ladies never give up on self checks and being aware!
Simple waiting to hear from you- we are all here sending prayers and positive thoughts, hugs.
Arlene you look so great! I know your nervous about your feelings after chemo, but trust me, with time you will feel more confident in your body and know things will be fine. Cancer won't be on your mind all the time and daily life will resume with much more normalcy.
My daughter forced me to go out without my wig a little before I was actually emotionally ready, but she thought I looked great (love her!) and knew I needed to get past the hurtle of wig wearing. I have to tell you having her support during my "coming out topless" experience was not only really helpful but I never wore my wig again!
I hope everyone is doing GREAT! I'm making it through chem with very few SE, thankfully! My hair is thinning quite a bit as this chemo attacks cancers ability to replicate rather than fast growing cells. Not sure if I'll loose all my hair again but it's ok- been there and it's really not a biggie in the scheme of things! Love to all
Shari
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