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lucky 
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Joined: Jun 17 2007 Status: Offline Points: 107 |
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 Posted: Jun 29 2007 at 9:41pm |
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Hi annw,
I love hearing this kind of good news! I think it gives all of us a renewed faith in the doctors choices of chemo, surgery and radiation.
Your children must be so proud of you - as you are of them !
 Hope floats!
Thanks so much for posting the name of your breast cancer.
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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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Suzanne
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Joined: Jun 13 2007 Location: San Francisco Bay Area Status: Offline Points: 191 |
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Posted: Jun 30 2007 at 7:18am |
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Hi. In January, I was diagnosed with IDC, Grade 3, Stage 1, triple negative, no nodes but a lymphatic invasion, clear margins, 1.56 cm. I had a sentinel node biopsy and lumpectomy, 4 rounds of AC dose dense, and 4 rounds of Taxol dose dense. I'm now half-way through 30 radiation treatments (25 plus 5 boosts). I'm 56 and Caucasian with no history of cancer in my family.
I usually don't post but am happy to do so if there is any chance this information can be useful to others.
It seems as though the medical community doesn't really know what to do with the triple negatives. I just read that anthracyclines (which includes adriamycin, the "A" chemo drug in "AC") only help 8% of breast cancer patients. (You can ready about that and see a TV clip at http://www.msnbc.msn.com/id/19048185/ .) Is there any good news out there anyone can share?
Suzanne Edited by Suzanne - Jun 30 2007 at 4:30pm |
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cas145
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Joined: Jul 01 2007 Location: Australia Status: Offline Points: 3 |
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Posted: Jul 01 2007 at 1:59am |
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Hi this is my first post on this forum I was first diagnosed in March 06 with DCIS to right breast had a radical mast 16 nodes all neg Grade 3 Stage 2 Trip neg I had 6 rounds of FAC. I have just been diagnosed in May 07 again on right side in node scar with DCIS Grade 3 Stage 2B Neg/Pos still being tested. I will start chemo again on Monday with Carboplatin and Docetaxel followed by rads. Cas
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jmkearns
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Joined: Jul 01 2007 Location: United States Status: Offline Points: 2 |
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Posted: Jul 01 2007 at 6:01am |
 Hi,I have a rare type of TNBC called adenoid cystic carcinoma. My 2005 mammogram showed a cyst that the radiologist thought was just a cyst. (If I knew then what I know now I would have insisted on having it drained or tested with a needle biopsy.) My 2006 mammogram showed that the cyst changed shape and after a surgical biopsy proved to be cancer. The lesions turned out to be 4CM in size even though the mammogram showed it was about 1.4CM. Lumpectomy sentinel node biopsy showed the lymph nodes were clear. I finished my chemo on March 7, 2007. I finished my radiation on May 18, 2007. This weekend I am gardening and living as full a life as I can. My energy is back and I am full of gratitude. Peace to you. Janine Edited by jmkearns - Jul 01 2007 at 6:02am |
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CalGal
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Joined: Jun 04 2007 Location: United States Status: Offline Points: 159 |
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Posted: Jul 01 2007 at 11:24am |
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Ann -
It's so great to hear that you, a triple negative, have been cancer-free for 15 years!! That is wonderful! I wish my mother had been so fortunate ... she was dx'd in 1987 at age 46 and then had a new primary in the other breast in 1992, and a recurr of the orig bc in 1997, passing from bc mets in 2000. She had bi-lat mast (5 yrs apart) and did a ton of chemo ...and had a much worse time of it than me. (Much better meds now!) Although no one referred to "double negatives" at that time, I remember her being very disappointed that "her cancer wasn't the right type for Tamoxifen" (the wonder drug at the time). As I'm BRCA1, I'm certain she also was as well as being a trip neg. Did you consider the BRCA test? Best to you, CalGal |
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BRCA1
9/04 Bi-lat lump, clear SNB 38x Rad'tn 12/05 Recurr bc & mets to liver 06 the year of chemo NED for 13 mos until 7/07 Lung met. PARP trial until ... 2/08 Liver mets again |
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annw
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Joined: Jun 29 2007 Status: Offline Points: 2 |
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Posted: Jul 01 2007 at 11:31am |
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CalGal,
I did have the BRCA1 and 2 test since I have two daughters although no one in my family (going back 200 years on both sides!) had ever been diagnosed with breast cancer before me. I was negative for both BRCA genes. However, my older sister was diagnosed with breast cancer last year--two different primaries (and two different types of cancer--invasive ductal and invasive lobular) in the same breast. Our 85-year-old mother once had a biopsy (many years ago) but it was benign.
I worry for my girls, and tell them to be vigilant.
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lucky
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Joined: Jun 17 2007 Status: Offline Points: 107 |
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Posted: Jul 01 2007 at 9:56pm |
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Hi,
Thanks for posting your breast cancer type. I've done a number of posts on why I think the name of the breast cancer is extremely important in addition to it being triple negative.
Yes, I believe whatever info anyone shares on here has a way of helping all of us.
Thanks everyone !
 I think the good news lies in exactly what researchers are researching.
Are they only looking at the triple negative status, or are they also looking at the type of cancer in occurs in.
Interesting to note is that most triple negatives seem to have Invasive ductile. Haven't yet seen anyone who has lobular triple negative, or clear cell breast cancer.
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QUOTE=Suzanne]Hi. In January, I was diagnosed with IDC, Grade 3, Stage 1, triple negative, no nodes but a lymphatic invasion, clear margins, 1.56 cm. I had a sentinel node biopsy and lumpectomy, 4 rounds of AC dose dense, and 4 rounds of Taxol dose dense. I'm now half-way through 30 radiation treatments (25 plus 5 boosts). I'm 56 and Caucasian with no history of cancer in my family.
I usually don't post but am happy to do so if there is any chance this information can be useful to others.
It seems as though the medical community doesn't really know what to do with the triple negatives. I just read that anthracyclines (which includes adriamycin, the "A" chemo drug in "AC") only help 8% of breast cancer patients. (You can ready about that and see a TV clip at http://www.msnbc.msn.com/id/19048185/ .) Is there any good news out there anyone can share?
Suzanne [/QUOTE] Edited by lucky - Jul 01 2007 at 9:57pm |
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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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lucky
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Joined: Jun 17 2007 Status: Offline Points: 107 |
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Posted: Jul 01 2007 at 10:04pm |
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Hi,
When all your treatments are done with - please consider having the other breast removed.
I had a double mastectomy even though the cancer was only in One breast. I also had 26 nodes removed from the side where the cancer was ( Left side )
Wish you very well with your next round of treatments and thanks for mentioning your specific type of breast cancer!
Please let us know how it all goes!
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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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lucky
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Joined: Jun 17 2007 Status: Offline Points: 107 |
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Posted: Jul 01 2007 at 10:13pm |
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Hi,
There is another member or members on here with your type of rare cancer. Mine is rare also.
I agree - everyone should insist on having a cyst or any lump in the breast removed before it can change into something else.
Hope everyone is using a high strength of suntan lotion when they are outside once the radiation has Stopped !
Using suntan lotion before the radiation stops and your skin is clear - causes the radiation not to work properly.
And - to have the maximum protection from the sun's harmful rays - please make sure your suntan lotion contains the ingredient called
Parasol, or Avenbenzone.
Happy gardening !!
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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jul 02 2007 at 8:13am |
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Welcome cas145 to our group and that sure stinks you've been diagnosed again on the same side. Are they calling it a recurrence or a new primary? Let us know what your test results are, will you?Just makes me shake my head, here you are headed back to chemo today, I so understand.
 I too am going thru my second dx and halfway thru Taxotere treatments.My very best wishes for a smooth treatment time for you. Please keep posting and let us know how you are doing, we will just have to do some more fighting, that all!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jul 02 2007 at 8:21am |
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Welcome Janine! I believe this is the first time I have heard of your type of TNBC. Congratulations on finishing your chemo and rads, what a relief huh?
 It is refreshing to hear you are gardening and living life as full as you can, you deserve some enjoyment now, you've been thru alot.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jul 02 2007 at 8:25am |
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Wow Ann it that is fantastic.
Congratulations and thank you so much for sharing some good news. Edited by trip2 - Jul 02 2007 at 8:26am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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jmkearns
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Joined: Jul 01 2007 Location: United States Status: Offline Points: 2 |
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Posted: Jul 02 2007 at 3:02pm |
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Thank you for the encouragement. Thankfully I am young (46) and otherwise healthy. I was able to bounce back and for that I am grateful.
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Griffin
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Joined: Jul 04 2007 Location: United Kingdom Status: Offline Points: 1 |
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Posted: Jul 04 2007 at 8:51pm |
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Hi everyone I had a lymph node at the bottom of a duct which was a mixture of primary and metastases, 8 out 20 +ve nodes, nearly five years ago. 8 FEC 30 rads. Recurrance ductal, non invasive, caught early, same duct but higher up, last summer, mastectomy, no further treatment. The recurrence was assessed as radiotherapy failure. |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jul 05 2007 at 2:29am |
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Hi Griffin and welcome!
It's really good to see you here.
Sorry to hear you had a recurrence but glad to hear they caught it early.
I'm so happy to hear things are ok now, you've been thru alot.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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JaneRA
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Joined: Jun 03 2007 Location: Great Britain Status: Offline Points: 24 |
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Posted: Jul 05 2007 at 3:23am |
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Mine is ductal. Grade 3, Stage 3, 23/25 nodes at diagnosis Oct 2003.
April 2007: regional stage 4 recurrence in chest wall and supraclavicular nodes.
Jane
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Jane
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jul 05 2007 at 4:24am |
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Hello Jane and welcome.
It is so crappy that you have had a recurrence, how are you doing with your treatments?
Warm hugs and best wishes to nip this in the bud this time.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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JaneRA
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Posted: Jul 05 2007 at 5:05am |
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Hi Trip
Thanks for yur good wishes
Yes its crappy...and I'm hoping for remission though been told only partial remission expected. ..for who knows how long???? This is according to my oncologist 'the good end of stage 4' ie. not curable...but hope for 'management' for as long as possible.
I am having a combination of 6 cycles of navelbine and xeloda, the idea being to keep me on xeloda afterwards for as long as it works. Just done 2 cycles but had very bad diarrhoea this time with xeloda so had to stop...waiting for oncologist's view on whether to resume (see her Monday.) Doing the two together is a bit of a gamble...better trial results than singly but when it fails you've lost 2 options together.
My remaining options are limited when/if this combo stops working (assuming it is at least a bit as one lump shrinking)...one of the platinum based chemos...cisplatin or carboplatin, gemzar, and possibly a revisit to taxotere or taxol (had taxotere already.)
Avasitin which is used for secondary bc in USA is not licensed here in UK.
I'm hoping to live long enough to see more spotlight on triple negatives but utterly realistic that there's pretty nil chance of 'nipping it in the bud' for good. C'est la cancer. C'est la triple neg cancer.
very best wishes
Jane
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Jane
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jul 05 2007 at 6:14am |
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Well we will be praying for remission for you to have a long and healthy life. They are already calling breast cancer chronic so there isn't really a cure, all we can hope for is remission and I feel so bad for those who have had it go onto other major organs or bones as this must be very stressful but hopeful as there are more meds available now than before so we've got to hang onto hope and drive ahead to see if we can get answers.
Is Xeloda a pill? We have a product here called Imodium AD which works great for diarrhea, do you have something like that in the UK?
Let us know what you find out from your Onc Monday after your visit, ok?
Hopefully doing the two meds together will work for you. That is good that the trial results proved better to do them together.
Try not to worry about the what if's, I know it isn't easy, we all do it, nearly impossible sometimes and take it a day at a time if you have to.
Sometimes when I read someone saying that I want to scream at the puter, lol, I feel like I'm pretty realistic and know that we have a hard fight and you are going thru a even tougher fight right now but let's get out the boxing gloves and go for it!
Hugs,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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JaneRA
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Posted: Jul 05 2007 at 6:35am |
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Hi Trip
Yes xeloda is a tablet (oral chemotherapy) and yes we do have immodium here! but sadly it didn't touch my diarrhoea for 24 hours.
As to 'what ifs' well....by realistic I mean just that..I'm 58 and am not going to get a long life now but I'll be pretty happy right now if I get a year in remission and then we'll take it from there. I know that new tretaments are not going to come along in time to save my life unless I have unusual and exceptional and unlikely good luck. I consider myself very lucky to have lived well for 3.5 years past diagnosis. And I'm doing my best to live as well as I can in the shortened time I inevitably have left.
Those who know me from UK forums know I call a spade a spade...I expect to die from breast cancer (wow I've said it) but I don't think saying it means that I'll get a shorter life or a more miserable life, or that saying its means I've 'given up'..it just helps me to be straightforward rather than euphemistic....oh and I don't do prayer or fighting cancer either.
very very best wishes Jane
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Jane
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