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Old 07-03-2006, 05:00 PM   #1
dawn
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My Profile/ Its Scary

Hi, I've just been diagnosed in March 2006 with infiltrating ductal carcinoma, 5.5cm stage 3 with 8/18 positive nodes. Im er+ and PR+ also her2nu+++. It gets a little confusing trying to figure out what the doctors are telling you. Im on my5/6 chemo treatments, ac and taxotere. I'll be getting 25 rads and will alsp be getting herceptin and hormone therapy. So far there is no NED but Im scared like you wouldn't believe. I have and 5 year old son and and daughter who just turned 2. I plan and pray that I can watch them grown into healthy happy adults but sometimes its hard. They say the younger you are the more agressive the cancer. I had my left breast removed on my41st birthday. But Im also getting conflicting stories on the er+, pr+ and her2 nu. It means a more agressive cancer but a more treatable one. Am I getting this right or am I totally off base. Any support and help would be appreciated. Thanks Dawn
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Old 07-03-2006, 07:01 PM   #2
janet/FL
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Dawn
So sorry about the cancer but you will get good help and support here. With the ER/PR + you will be able to take the follow up drug for that, and with the Her2+ you will get Herceptin. You say you aren't NED, but is there any evidence of cancer? Are they taking any markers for the cancer and the her2?
Others can tell you more about these or just search this site for more information.
Hugs and prayers,
Janet
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Old 07-03-2006, 09:35 PM   #3
Bev
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No real science here. Stage 0's can have problems. You are in the middle, so god only knows. I'm stuck in the middle too. We have no guarantees. We can only read the studies, and push for treatments we think worthwhile. So read on. Best of luck. BB
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Old 07-07-2006, 04:27 AM   #4
dawn
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Hi Janet,
Im a little confused, doesnt NED mean no evidence of disease, what is the difference between that and evidence of cancer. Im still learning all this lingo.
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Old 07-07-2006, 06:15 AM   #5
janet/FL
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Dawn, I am no expert, but I would think that if you were given all sorts of tests, now, they would find no cancer. That is, no evidence of cancer. You had it surgically removed. It does not mean you have no cancer. Cancer is sneaky and hides away in the blood and lypmpnodes, breast tissue, etc. That is why you will continue with treatment to make sure there remains no evidence of cancer. Evidence of cancer would be just that. The doctors would be able to find it in your body as they did when you needed the operation. The drugs you will take for being ER/PR+ and Her2 + are to try to kill off any of the cancer cells lingering in your body. THey will help your body fight them and discourage their growth.
Does this help? If not, please ask again. Cancer can be very confusing. I would say you are Ned and that all the treaments you are having are to make sure you remain Ned. Also, eating well, and exercising are other ways to help your body remain healthy.
Hugs,
Janet
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Old 07-07-2006, 08:03 AM   #6
tousled1
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Dawn,

I too am Stage III and right now NED and I plan on staying that way for a long time to come. You will get to see your children grow up. Try and think positive thoughts and just take it one day at a time.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 07-07-2006, 05:09 PM   #7
dawn
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Kate,

Thanks for the support. For the most part I stay positive, upbeat, happy and try to have the attitude that Im going to kick this think and beat the statistics but once in a while that creepy little thing sneaks in there while Im looking at my children and kind of takes over for a day or two. It really helps to know there are other people out there going through the same thing and Im not the only one with these feelings. I do plan on seeing my children grow up and being part of their life, after all no one can take care of them like mommy right? Thanks so much, I can feel the fog lifting just being on this site. It's amazing .
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Old 07-07-2006, 05:14 PM   #8
dawn
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Janet,

Thanks for the info, Im starting to understand the difference I may be NED but I may still have cancer cells hiding somewhere in my body. So when someone says they are cancer free, how can they be sure? Or is there a specific amount of time? Is this the same as remission and what signifies it? Maybe Im asking too many questions or maybe there is no real answer here, Im probably just grasping at straws for something positive. This site so far has been giving me some confidence and answers for my questions. It is also giving me some questions to ask my onc next month when I visit, that I didn't think of asking before. Thanks for your help with the questions.
Dawn
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Old 07-07-2006, 05:46 PM   #9
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Hi Dawn
I think you are starting to understand the difference as the terms are usually used. If someone says they are cancer free--well, I would understand it as NED. But if they want to state it as "cancer free" then that is up to them, I wouldn't argue. In remission would usually mean NED. Just new terminology. Since this cancer is sneaky, there doesn't seem to be a time limit for its return, but we know that after two years then five years, the chances of its return greatly deminishes. With the treatment you are getting as stage 3 A? is it? (With 3 b it could be a little more complicated) You can look forward to NED--whenever anyone wants to call it--ask your doc--and remain NED. He may prefer to look at it from a different perspective. I have never asked my doctor if I was NED. He just says it isn't going to come back. That is how he wants to see it--and so do I!
You are almost through the hard part of treatment. :-)
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Old 07-07-2006, 06:58 PM   #10
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Dawn, Your DX is very close to what mine was/is. I am stage IIIA, Her2/neu, Er & Pr positive, 5 of 16 positive nodes.

Its very overwhelming and darned right scary when you get that first DX. Your head is spinning. Your life is turned upside down over night. So go easy on yourself. I think we all know what you mean about trying to figure out everything the doctors are telling you. Its alot of information to take in.

I am so glad to see you found this board. Thats a major plus in your favor! There are some really knowledgable people on this board. And don't worry about asking too many questions. As far as I am concerned...you can't ask too many. Everyone is here to help and learn...and support each other.

One of your posts said for the most part you stay positive & upbeat but occcasionally that creepy little thing sneaks in. Believe me...I know I can relate to that...and I don't want to speak for the others...but I am sure it happens to them at times too. You have come a long way already...I see you have already had 5 of your 6 chemos. YEAH. One more to go.

In the last six months that all this has happened to me...I can't tell you how many times I have been up, and then down a couple days like you said. It happens. Some days I will actually feel like I don't have bc and all is right with the world. You are going to have lots of good days...and some not so good. I think its important to let your feelings out. Try NOT to hide them from everyone like I have tried to do many times. I have learned if I feel like a good cry...darn it...I cry! And I always feel better.
Holding in all your feelings doesn't do you any good. I realize you don't want to break down in front of your kids....that i understand. But believe me...you will go through many different stages through this journey.

So when you say its nice to know your not alone in these feelings...no your aren't. Not even close. We all understand all to well.

If you hang around here long enough...you will see many encouraging posts from other her2 gals. You will get lots of support here.

Sending your warm & healing thoughts.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 07-09-2006, 03:19 PM   #11
snoopy
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Hi Dawn

I'm another one with a very similar profile to you -Stage 3. 4.5cm & 2.3cm Ductal - 9/15 nodes HER2+++/ER+/PR+..... - diagnosed in November 2004 when I was 41. I didn't think I'd be still around to see christmas 04 let alone be here today feeling (most of the time) semi human again, NED - and long may this continue. I've had chemo/rads/a years herceptin and an oophorectomy (thats the short version - I never do things by half and have had many problems en route).

My children were a little older than yours at diagnosis (8&10) - its really hard having to put them through all of this - but in a weird way having them has really helped me get through bad times - what ever happens I (and you) are laways Mum - smiles and cuddles are priceless.

Often liken life with BC to living on a rollercoaster - the highs and lows can be extreme and the speed with which I find I can lurch from one to the other is truely frightening and yes the smallest thing can set this off - I really relate to what you say, I'm sure all BC patients - what ever the diagnosis do to some extent. It does get easier as time goes on - I remember be told this when I was newly diagnosed - yeah right I remember thinking, but it really does.

Forums such as this are my lifeline, I'm so glad you found this one - the amount I have learnt from others is amazing (I don't post huge amounts - I tend to just "read") - allows me to ask questions of my Onc/Surgeon and feel that I have some (OK a very small amount) control/involvement in the management of my BC. Only other cancer patients actually know how a cancer patient feels.

If it doesn't sound too odd it almost feels "fortunate" to have HER2+++ disease as this is an area of intensive research - and positive results - the herceptin in early disease studies etc. etc.

It is hard to come to terms with a "poor" prognosis. I keep trying to remind my self that the figures we get quoted are just statistics - population studies - no one knows which side of a survival line they will fall. Just try to live my life as well as I can, and live it now. I (and you) will do it better on some days than others.

Good health to us all.
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Old 07-12-2006, 08:13 AM   #12
lkc Gumby
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Hi Dawn,

I am another stage IIIer.
Dxed June 05 with Stage IIIC , 12/14 pos nodes, er/pr neg, and Her +++.
They iniitially tied a partial mast. , but sinec surgical margins were not clear had a MRM right breast June 30, 2005. started DD A/C x 4, then Taxotere evry 3 weeks, with Herceptin, then 6 wks rads-4 fields, then 1 wk rad boost to scar.
Still on Herceptin, but will finish soon.
Had a prophylactive left mast 3 weeks ago, which turned out to be atypical and hyperplasia, so thankful I pursued getting this one removed.
Had bilateral recon. at same time, and am happy with results.
Just placed on Tamoxifen for left breast abnormality.
Happy to say I am NED.I feel that Herceptin is a God send to us, and Lapinitib is right behind. So although our cancers are aggressive these targeted txs are quite effective for us HER girls.
I KNow when I was originally dxed I felt sooo alone, but actually there are alot of us out there doing really well.
God Bless and Good Luck.

Linda
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Old 07-12-2006, 01:15 PM   #13
dawn
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Thank you Linda,

I have been doing so much better since finding this site. It makes you feel not so alone and answers a lot of my questions. Everyday, it seems like theres someone out there like me and doing so well. I have also been finding there are people out there with a lot more problems than I have. One thing Im really having a hard time with is health coverage in the world. When you are faced with a terminal illness and the emotional, physical and mental stress of cancer you should not have to worry about whether you can afford or get the treatment you need. It just makes me so mad. Im one of the lucky ones to live in Canada where we have provincial health coverage. The only thing I have to worry about is getting my anti sickness pills, which I have insurance for, but if I didnt our social assistance program would kick in so that you do not have to do without while you are sick. So Im learning that even though I have cancer, Im still a very lucky person to live in the country I live in and to have so many options available to me.
Linda, thanks for the email, Its great to know theres so many out there for support and help.
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Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.


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Old 07-12-2006, 08:30 PM   #14
yellowfarmhouse
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HI! I had almost same pathology except I had two tumors that added up to about 4 cm - -4 + nodes and triple positive. I was dx 2/05 and over a year later ( after dose dense chemo, rads, Herceptin, bilateral mast, and reconstruction, I'm doing well. I have five kids age 5-13 and my plan is to watch them grow up! Hang in there. I found that during chemo I was mentally really tired and discouraged but as my physical strength came back I started to feel much better in all aspects. I live in U.S. and had huge insurance deductables to pay but managed to stay afloat ( by the grace of God!). But, I too wish that we would not have to stress over finances as we get better. Glad you live where health care is provided. Give those babies big hugs from us. We're all in this together.

blessings,
Wendy
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Old 07-13-2006, 10:11 AM   #15
dawn
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Thanks Wendy, Its posts from people like yourself that helps continue and instill hope in us all. If we didn't have hope what would we have. Im taking that firm stand that Im going to raise my kids up and beat this thing or the next best thing to beating it. The drug manufacturers, govenment, health care makes so much money of these drugs and treatments. It just infuriates me, that someone has to do without because of money. When in the greater scheme of things money is the least important. Health, Happiness, Family and Friends! I did my 5th chemo today, not feeling too bad just a little tired. One more to go ! Yes!
All the best
DAwn
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Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.


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Old 07-16-2006, 02:23 PM   #16
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Another Canadian on-line

Just discovered this website and decided to respond to your particular email given our kindred Canadian connection, albeit I am communicating from the west coast (Vancouver) and not the east coast (although I did visit Newfoundland last year and loved it). I was 45 when I was diagnosed in Dec 2001 (Xmas eve) with Stage IIIa, HER2, er+ (weak response) , 5 cm tumor, and 6/11 positive lymph nodes. Had 3 surgeries, chemo and radiation. Fast forward 4 1/2 years and so far so good -no signs of recurrence. I did not receive Herceptin at the time because it was not widely used as an adjuvant treatment in Canada, excepting people on clinical trials... so others like you who receive herceptin will have even better odds than me.
I thought that I was "toast" when I was diagnosed and started preparing a list of "suitable" available women for my husband when I was gone . I am thrilled to still be here and am grateful for this gift of time, no matter how long it might be. My experience with a life-threatening disease has had a tremendous impact on my life - it has helped me address my fears (I lost my mother to cancer when she was 56), clarify my priorities, make the most of every day, and open my heart to others. I wish that this had not happened to me - denial of my mortality was more fun but I know that I have a much deeper appreciation of my life, and of my relationships than I had in the past. I am hopeful that I am around for many more years to take advantage of this "new" insight and encourage you to keep hoping as well..Carla
PS I am turning 50 later this year and am thrilled to bits. I cannot understand how anyone can be sad about such an awesome milestone.
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Old 07-17-2006, 12:38 PM   #17
dawn
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So good to hear from you especially today. Im having one of my blah days today. Just finished my 5th chemo 4 days ago and still smelling the chemicals. But cant get my mortality out of my head or let go of the fact that someone else could possibly raise my 5 year old son, and 2 year old daughter. Im having a weeping afternoon and this morning in the shower it was an all out ball fest, with hysterics included. I must admit I did feel a little better after but this breast cancer thing really makes you wake up and face life. So of course, I went to my lawyers office, got a copy of my will, updated it for my childrens sake. I have a sister, who has been my angel since this whole thing started and of course my children think of her as another mommy. I know she will always be here for my kids and treat them like I do, but there are just days you cant get past it. All this pessimisim is coming from a woman who just got all her scans and results back, all clear, nothing showing anywhere but Im having a GOSH IM SCARED TO DEATH day. More for what I'll miss with my children, than anything. Wow, 10 years ago, you would have been talking to a self centered, I don't care about anyone else in the world only myself, person. Now look at me! Anyway, had to get this off my chest, blub, blub, blub. Im hoping I can follow in your footsteps and many like you and look at my children 5 years from now and say. Thank You God, I've gotten them this far, Im so blessed. All we can do I guess, is hope and Pray and put it in gods hands.
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Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.


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Old 07-18-2006, 06:00 AM   #18
fitztwins
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Dawn,
When I found out that I had frickin 17 lymph nodes, I thought I would goner for sure. I have twin boys. They just turned 4 at the time.

I truly believe that with all of the advances that we will be the new generation of Stage III long term survivors.

Your fears will be pushed back with time the farther you are from treatment.
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Enjoy Every Sandwich


dx 12/2004, er/pr+ her2+++ Stage IIIC
AC/Taxol dd 4/4,33 Rads,
Herceptin ( every 3 weeks) 5/05-5/06,
Tamoxifen 1 year
Femara 2 years
dx with Mets to pelivs bone 6/08,
herceptin, 6 tx Taxotere, rads, zometa
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Old 09-07-2006, 01:08 PM   #19
deb-steph
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Smile hope for confusion

just read your note. if you are estrogen or progesteron positive then the cancer is far more treatable. the wild card is the her2 which makes the cancer more agressive. now having said that i know a lady in my town who is her2 positive on the same regimen that i am now currently on and she is a 9 year survivor. i have 3 children ages, 17, 12 and 10. i too hope to watch them all grow and become who they are meant to be but the truth is i have to travel to ft. worth, texas for treatments and being on the road so much may be more of a factor in my death than the cancer. hang in there, you have so much strength right there in your own home.
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Old 09-07-2006, 05:42 PM   #20
dawn
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Smile Thanks for the UPLIFT

Thanks DS.

You know today of all days I just needed that little boost that you just gave me. My 5 year old son started Kindergarden today and of course when I was at home waiting for he to get out all I could think about was how far will I see him go? Then spending so much extra alone time with my 2 year old daughter Im thinking, will I get to see her go to Kindergarden. I think your note came at just the right time. Even though all my results are clear, Im finished my chemo and due to start my rads in two weeks. Everything is looking good but you can't help but think about it sometimes.
Anyway, Im going to sign off and watch a movie with my wonderful hubby.
Thanks once again for the uplift
Dawn
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Dawn

Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.


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