Calling all TNs

Teka

Shari,

anotherNYCGirl

Shari - I'm glad that you have those big pockets because I jumped in, too!

This terrible fear that we get whenever we have a pain is awful! ('cancer-itis') TRY to not let your imagination run away with you. Drs usually prefer face to face visits (more income, maybe??)

Sending hugs and BE WELL WISHES!

BC Husband, - THANK YOU!!

Luvmydobies

Shari, even those pant pockets aren't big enough for all of us that are in there. We need some space to breathe! LOL!!! I wish they could tell you something now because we are all waiting and I for one am not patient!!! I'm still holding your hand, hugging you, and praying. XOXOXO!!!

greenae

shari I am jumping in your pockets, too! The waiting is the worst. And these imaging tests all have their faults, and every little "light" has to be "explored." Can't researchers speed this process up??

I am waiting to call about my MRI results. I am at work trying to stay focused and busy. Ha!

I am sending you prayers and hugs. And May all these images turn out to be Fine.

Arlene

Allydp

Shari, I'm jumping in that big pocket! I'm so sorry you have such a long wait to find out what's going on. I'll be thinking of you.

Allydp

Did anyone catch the name of that receptor they mentioned discovering in the article on the vaccine? Are they saying they discovered that 80% of TN tumors have a folate receptor? So in my extremely limited understanding of that...does that mean we should probably be avoiding folate? Just as those who are estrogen positive avoid estrogen? I could be way off, but I'm curious.

Also, anyone know how to get into this trial? I'm sure they're only taking those fresh out of treatment, but I'm curious what eligibility will be.

Meadow

Hi ladies, lots of excitement about the new vaccine. Does anyone know if bc tumors must be present to receive the vaccine? Can those who are NED status receive it/benefit from it? T thought I read where it was for TNBC where tumors are present. But, I do not always know what I am reading. Inspiredbydolce...where are you!

Also, I saw this on another thread, I signed this petition to urge Komen to declare more openly where their funds go, and to spend more on research. Research is giving us hope with this new vaccine! Read the link if you are interested in signing.

Meadow

https://www.change.org/p/keep-a-breast-foundation-...;

Meadow

bchusband and alhusband, do you know you are kinda like "our" husbands? and have you told the wives? lol!hugs to you both!

KSteve

Shari - You might have to add a big handbag in case your pockets aren't big enough!  We're all with you, and completely understand the fear that all of this brings.  Sending positive thoughts that it's NOT breast cancer related.  Wish you could get in earlier because the waiting causes so much anxiety.  I'll be thinking of you especially on the 11th.  Fingers (and toes) crossed. 

Hugs,

Kathy

Tobycc

Im jumping right into your pants!!! Hope that got a giggle anyway

Prayers, prayers prayers: and think more about calling. Hugs and love

Kath

greenae

Hi All I Need You. I spoke with breast surgeon today re: MRI (yesterday) Report. At my core biopsy I was told my mass is 8mm x 7mm x5mm. My MRI shows a 6CM mass. How is this possible? I am so upset and anxious, again. I have to have an MRI guided biopsy 2/10. The radiologist will place a second clip at the posterior margin of the mass which is at 10:00, left breast, 5cm from nipple (that's where the first clip was placed during core biopsy) I am so afraid this changes Everything. 6CM vs. 8mm. That is 6 times bigger. I think I am losing it. It's non-palpable... the mammo and US did not see this 6CM? I feel like I just went from Early Stage to...it's everywhere. I just want it out...and now another week added because of this finding. help, please.

Meadow

Greenae, I am so sorry you got this news today. I know you are so scared. I want to encourage you to go deep inside that place where you store up your strength. Go there and hold on tight. Even with this news you can win this fight. You can. I hope you are comforted by prayer, it really works. And let your support team know you need them now.I was told by a wise therapist that "Love Heals". Stay calm and positive and love yourself, dont fear dont despair. We are here for you.

lilyrose53

Shari- make room-I'm jumping in your pocket too!

Greenae-we haven't met-but I just read your last post. Sorry you got this news. Hang in there-we're all here for you.

I will keep you both in my prayers. Hugs, lilyros

greenae

Thank you, Meadow...I just am in shock. My surgeon was only on phone with me a few minutes because she was in the OR. Is this a common occurrence? To multiply the size by 6? I feel like I cannot function properly with this not explained to me. Maybe I want to put my head in the sand and think it's a mistake? I have been told for the past month by radiologist, surgeon and MO..."It's so small, you'll be fine." Then the Triple Neg, now this... I am really having trouble feeling "Warrior-like." I will try to find strength. No choice, I guess. Really need to have this week go quickly. Thank you for your supportive words and advice

arlene

anotherNYCGirl

Greenae, - it doesnt matter what size it is, - just get it taken out and proceed from there. Grade 2 is already better than some of us had. Wait and see what is ahead. Dont assume the worst!!

Hugs across nyc to you!

breastcancerhusband

Hugs back at ya Meadow!!

greenae - that sounds odd. Was the original diagnosis made with ultrasound or mammo? In larger dense breasts and younger women mammo's are not ideal for picking anything up due to the high background. Ultrasound is much clearer. Its seems implausible that whoever scanned you, measured the mass at less than 1cm if it were indeed 6cm. Also a 6cm mass would feel big. If that was missed first time round someone needs to be finding a new job. Some tumors can grow fast, but a grade 2 going from 1cm to 6cm in this time frame doesn't fit.

If it is 6cm don't panic. It may be that the MRI is picking up inflammation as well making the mass appear larger than it is.

Try and stay calm. I know its easy for me to say, but do whatever you can to hold it together.

Hugs and prayers from the UK

BCH

breastcancerhusband

The receptor being targeted with the potential vaccine is the folate receptor alpha and it is indeed over expressed in TNBC - especially once the f*****g cells have got very aggressive. One study in rats has linked folate to enhancing some breast tumors - but since cells have multiple ways of obtaining and processing folate, I wouldn't have thought this would be an issue. But this is possibly something that should be looked into. Probably a random link and me looking for a cause, but my wife suffered two miscarriages before the current pregnancy - between May 2013 and pretty much up to her diagnosis in October she was taking folate supplements - so who knows. More research needed.

This is great news about a possible vaccine though - fingers crossed!! I work in research myself - specifically blood clotting. But have been getting more into cancer research over the past few years and with perhaps cruel irony had just set up some breast cancer related projects before my wife found her lump. The idea I've been pitching to get funded and which this week have been given a small amount of money for, is to give breast cancer cells chicken pox! Sounds mental, but the idea is to target a protein on the cancer cell surface that the cell needs to grow or invade - and we'll target it with a small molecule that will stop it from working. But linked to that molecule will be one of the immunogenic parts of the chicken pox virus. The concept being the small molecule binds to the cancer cell and inhibits something and at the same time decorates the cell with part of the chicken pox virus. Since most people have had chicken pox the theory is the immune system will simply recognize the cancer cells as being like chicken pox and produce an immune response.

Anyway, as always hugs and prayers all around

Be brave and strong

xxxx

greenae

Anothernycgirl -Thank you. I like your attitude. I want it out now! I really thought the phone call today would include planning a surgery date. ugh. Another week to wait.

BChusband---That's what I am thinking! How can there be such a huge difference in size? Mammo, 12/29/14, showed focal asymetry. First targeted US, 1/2/15, showed 10mm mass. US during Core biopsy 1/12/15 showed 8mm x7mm x5mm.Had breast exam, 12/2/14, nothing felt. Then 2 breast exams (surgeon and oncologist) 1/28/15. NOTHING on palpation. I really want to say, "WTF!" (Getting mad makes me feel better And I know it didn't grow that fast in 3 weeks. I am so hoping it's inflammation from the 4 cores removed and the clip placement? I am trying to stay calm. Thank you for your thoughts and support. Would like to take a Road Trip to Jacksonville and help myself to that vaccine!

arlene

breastcancerhusband

if you've had 4 cores done and clips I'm not surprised its glowing like mad on an MRI. The internal area is likely to be bruised and full of inflammation.

Tell you doctor to stop messing around with scans and measurements and just get the thing out!

xxx

greenae

thx bchubby! I am afraid now they will take so much out, whats the point of lumpectomy??

Luvmydobies

Arlene I'm praying for you! Try not to put the cart before the horse.Here's to hoping it's just imflammation. It just doesn't make sense that it grew that fast, especially since it's grade 2. HUGS!!!

Allydp

Greenae - I am so sorry you're going through this. I agree with everyone else, there's no way it could grow that fast and I can't imagine a 6 cm mass not showing up on US or not palpable. Sending you thoughts and prayers and you await some answers.

BChusband - the chicken pox theory is fascinating! Good luck with your research! I was also taking folate for infertility at time of diagnosis, but also taking DHEA which has been linked to TNBC as well.

For all the women on Metformin - what is the recommended dosage you're on? And do you have any literature you could pass along stating that recommended dose? My PCP has agreed to prescribe it for me, but she wants to see the studies and dosage info first. I'm supposed to fax it over to her today. Thanks so much!

slv58

Thank you EVERYONE! Didn't get home till 9:30 last night-very tiring. Well after reviewing my mammo and US, the radiologist came in and said that I have a lot of scar tissue but there was a small spot (exactly where I was experiencing a new pain) that was a bit darker than she liked. She was good enough to do a core biopsy right there and put a stat on results so I may have that by the 11th. They finally posted my hip x ray results, shows no mets visible! Nothing on bone scan yet. My bloodwork from yesterday is also posted and my calcium levels are elevated and just above normal. Hoping to discuss parathyroid on wed. because I'm hoping nothing else shows! Maybe if it's parathyroid it would explain all the bone and muscle pain I've had.

Greenae, big hugs hon, hang in there. My tumour was originally 2.2 cm with first diagnostic mammo but by the time I had biopsy and clip placed they changed it to 3.3 cm. I don't think it's unusual to have different size after biopsy etc.

hope everyone is well and I thank everyone for your love and support, it means so much and I would thank everyone individually but I'm exhausted and need a nap! I'll let you know how it goes wed.

eileenpg

TNBC trail=Ok here is the skinny on the clinical trial for the vaccine. I called  Mayo Clinic in Jacksonville,Fl. They are awaiting for more funding to go through. They have not started the trial nor have they opened the trial for enrollment.  I gave my name and some very brief information. It will be sent to the oncology clinic and they will call me if interested. She told me it could be months until this is started.

Greenae=easier said then done. Just to relax. I hate all the added stress we get after being diagnosed. I was told I had leukemia after I was dx with TNBC.. I have since found out I do not have leukemia. Just a low WBC count. I was totally freaked and stressed out. Best of luck!!

ALHusband

Ally the trial dose is 850mg twice a day. That's what my wife is on. Her PCP prescribed it first, but her Onc has been prescribing it since.

Lisaj514

Also taking850mg 2xday. Was told to ramp up slowly, 1/2 tab 1xday, then full tab 1xday, then 2xday. I had no side effects. SE could be diarrhea but I had none, no upset stomach, nothing. So I'll continue. My MO prescribed it. We also talked about low dose aspirin today. She said ok. May decreases cancer risk for colorectal, breast cancer, and its benign, no concerns she said so I'll prob start. Anyone else have input on this from their docs?

Cocker_Spaniel

Greenae calm down girl you may be getting yourself all worried for nothing.  Was your cancer found as a lump or calcifications as mine was.  Calcifications can be scattered throughout the breast and over a wider area than if it was a lump. If you have neo calcifications then the area is taken as a whole and could be 6cm hence the reason only a mastectomy was offered to me.  I had nine core biopsies taken but it still does not give a true picture of size as your surgery will.  Your cancer will not be staged properly until you have had your surgery and your final histology report is in as this can change from test to test.  As a dear friend used to say to me "Don't let worry take the joy our of your day".  Find plenty to do, enjoy walks, eat well and exercise if you can because there is no point in worrying until you know for sure what is going on (I know easier said than done).  Everyone of us on here have felt like you do and I'm sure they would all agree that getting worked up about something that may not be so,  is pointless yet still we do it.   Whatever your final results, you can do this even though you might not think so. We are with you all the way and sending huge big hugs.        

Shari so far, so good, with the hip x-ray showing nothing abnormal. The parathyroid is only four little tiny glands that control calcium levels.  Calcium balance is essential for normal functioning of the heart, kidneys and bone and it must be controlled to alleviate any weakening of bones or bone and joint pain. This may be a chance to discuss Zometa or Aclasta with your doctor. So this may be the answer to your pain.   Hopefully the other results will show normal.   Have your good rest now you deserve it.  Big hugs to you.

slv58

thanks Cocker! I'm feeling a bit more optimistic. I developed thyroid problems after rads and am already on synthroid but after reading up on parathyroid, it seems like this may be why I havnt felt better on synthroid-still very fatigued and I have bad bone/joint/muscle aches from waist down. Was tested for rheumatoid and negative, my rheumatologist thinks it's inflamatory arthritis from chemo, but now I'm wondering if it could be parathyroid. I will discuss this with my mo on wed! I'm going to take a mental break from worry, thank you for reminding me that Cocker! and enjoy the week end!

Hugs to all

Shari

Allydp

AL and Lisa - thank you very much!

Eileen - thanks for the vaccine info!