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Linda S
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Joined: Mar 11 2009
Location: Coeur d Alene ID
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Posted: Mar 12 2009 at 5:24pm |
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This is my first posting. Have been into the site many times, but finally registered. Diagnosed May 2008, six months of chemo (the tumor had been shrinking, but then grew like crazy)!, bi-lat mast November, 5 wks of rad. My onc says he is certain this has met and seems he was right. Current PET scan shows lungs now involved. He has said he may be able to keep me alive for a year after mets. Maybe because of tumor size (4") or lymph node involvement (21). I refuse to think of what time I have left. I live each day as if it's the last. God's in control and I am at peace with this learning experience. I happened on this site and see there are other very strong women out there dealing with this awful disease.
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Bagle
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Joined: Feb 21 2009
Location: United States
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Posted: Mar 12 2009 at 5:40pm |
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Hi Linda, I am impressed by your courage and strength. And I am encouraged. I also have Lung mets, and will start chemo next week. Most of the time I am at peace with this situation, but today seems I am not quite as up as usual. Reading about you and other womens stories here give me encouragement. You are ALL so beautiful, it brings tears to my eyes. I also have lurked and don't post much.But had to say this. Thanks for sharing your story. It meant a lot to me.
Blessings
Rae I love you all!!
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Tripneg RBC Metaplastic
2/08 R Mast.2/08 reconst.
4/08 6wks rad.12/08 CT/PET lung lesions.Waiting..
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Linda S
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Joined: Mar 11 2009
Location: Coeur d Alene ID
Status: Offline
Points: 53
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Posted: Mar 12 2009 at 5:57pm |
Hi Rae:
When you say you are having Chemo for your lung mets, (and this may sound like a stupid question), are they trying new ones, or retrying the ones you had in the past. My onc says anything else he can give me will be experimental and not covered by my insurance. He originally left my tumor in so that he could see how it reacted to the chemo. It shrank over the first 4 mons, but then started growing, fast. Just curious. I meet with him on Monday to discuss my options. I guess I'm like everyone. Don't know when that clock starts ticking on my 'one year.'
Linda
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NancyJane
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Joined: Aug 25 2008
Location: Key Largo, FL
Status: Offline
Points: 241
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Posted: Mar 12 2009 at 6:13pm |
Linda:
Just curious if you have gone for a second opinion. You just never know. Something to think about...
Much love and light to you, and thank you for sharing your story. We are all family here. Each of us grows and learns from the one another. We are each other's strenght.
Sending lots of cyber love to you 
Nancy Jane
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41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Linda S
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Joined: Mar 11 2009
Location: Coeur d Alene ID
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Points: 53
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Posted: Mar 12 2009 at 6:25pm |
Nancy:
Maybe I'm silly but I trust my oncologist with all my heart. (Same goes for my surgeon). He has taken my file to the BC conferences he attends and staffs my case with the other doctors, so I do think he's accessing all the finest minds he can :). This thing just grew so fast in the beginning. From my detecting it until my mammo about 10 days later, it went from the size of a small grape to about 3". After4 mons of chemo it shrunk until it was barely detectable, even on the ultrasound. We were sooooo excited. Then, the week I was to start my final (3) treatments, it grew, literally over night. When they took it out (within days) it was about four inches. By then 21 of 22 nodes were positive, too. I really started to realize then how nasty this triple neg thing is!
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cg---
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Joined: Jul 20 2007
Location: Canada
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Points: 1379
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Posted: Mar 12 2009 at 7:04pm |
Dear Linda,
Unless the guy in the sky lost his job in this economy...we will just let God take care of the life and death punch cards.
What we definitely know is that there are other chemotherapy options available and it just may be a matter of getting a fresh set of eyes to look at your treatment. You did not mention which chemotherapy you did have first.
Regarding whether your insurance will cover other chemotherapy or not - you find out what would be best for you to have for the next chemotherapy - if the insurance refuses, then we will find plan B and C. (approach the drug company directly, or there are foundations available that will cover chemotherapy not covered by some insurances)....Linda - when one door closes - you find a window and open it -
If you need help researching anything - we will see what we can find, and see what is available.
Connie
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Suzanne
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Joined: Jun 13 2007
Location: San Francisco Bay Area
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Points: 191
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Posted: Mar 12 2009 at 7:26pm |
Linda, you also might want to look into clinical trials.
I'm rooting for you.
Suzanne
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1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
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Nancy
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Joined: Jul 23 2007
Location: Altoona, PA
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Points: 3814
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Posted: Mar 12 2009 at 7:35pm |
Linda,
Our daughter Lori had 3 opinions, gathered all the information she could on TNBC, had every test in the books, researched all the doctors in every hospital in PA and then made her decisions. Please seek a second and even third opinion. Evidently the chemo regimen that you were given did not did not kill the cancer cells. Many women have reported that. One was on the taxol and it did nothing.
Lori had ACT,,,Adriamyicin, Cytoxan and Taxotere..all 3 every 3 weeks for 6 treatments. She could not be offered neoadjuvant chemo due to a royal screw up by a highly regarded surgeon here in Altoona. They told her it was a "cyst". Operated, and then cut in to the "cyst", did not get clean margins, and then she went a month later for a mastectomy. The radiologist read the ultrasound incorrectly. It has happened to 3 more women here. Thay all make mistakes. Unfortunately, this was Lori's life that was in jeopardy. So, perhaps they read your ultrasound incorrectly also? It does happen.
TNBC is a nasty cancer, and that is why the women on this site will tell you of their experiences, so that you may benefit from their triumphs and their doctors mistakes. Not their mistakes, the medical professions mistakes.
Please reconsider getting those opinions.
Many hugs,
Nancy
Edited by Nancy - Mar 12 2009 at 7:38pm
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Bagle
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Joined: Feb 21 2009
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Posted: Mar 12 2009 at 10:17pm |
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Linda, I have Metaplastic carcinoma, which, in my case is a combination of a carcinoma and a sarcoma, a soft tissue cancer and a mixture of cells that can change. It really is a monster( as is all cancer) that is not very responsive to chemo of any kind. This is my first try at chemo and my doc is doing research on what will work best for this type of ca. My onco says he will focus on the MCA because that is the hardest to find a chemo for. I am really in Gods Hands and I am ok with that. I am at Loma Linda University Hosp. and the docs are up on the latest research. It helps that I was in nursing for many years(altho retired now) and usually know what they are talking about, and my experience is always saying ....Hmmmm. I am open to any suggestions because of the narrow options. I respect the experiences of everyone here on this list and treasure my lurking moments. But I am out of the closet now. The thing about the ticking clock is this: I could be in a car accident tonight - tomorrow and my clock would stop. When the docs told me - 'spots on your lungs' I thought, I'm dying. My next thought was, but I was always dying, since birth, I've been dying, and so is everyone else. God Bless you all and I hold you in my thoughts at all times.
I hope I answered your question. I seem to have gotten on the soap box, but it had my name on it.
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Tripneg RBC Metaplastic
2/08 R Mast.2/08 reconst.
4/08 6wks rad.12/08 CT/PET lung lesions.Waiting..
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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
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Points: 8549
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Posted: Mar 13 2009 at 6:54am |
Hi majjers,
Congratulations on being brca negative!
Have a margarita for me will ya? 
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Linda S
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Joined: Mar 11 2009
Location: Coeur d Alene ID
Status: Offline
Points: 53
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Posted: Mar 13 2009 at 10:47am |
Hi Rae: Sorry to hear about the 'twist' your cancer has. I had never heard of it. I do wish you well. You sound like me: God's in control. It sure makes life easier when you turn things over to Him. And I agree with the whole issue of what time we have left. My husband is so panicked and I keep telling him that this doesn't necessarily mean I'll go first!
I can't believe all the courage the women display!
Take care, Linda
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Linda S
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Location: Coeur d Alene ID
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Points: 53
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Posted: Mar 13 2009 at 10:54am |
Nancy:
my chemo was A/C for 12 weeks (tx every 3rd week), then abraxane and carboplatin for 12 weeks, once a week for 3 weeks with one week off between cycles. It was during the final 12 week period that my tumor grew. I went in for the 1st of the last three tx and in the two weeks since my onc had seen me the tumor grew so rapidly. My husband immediately felt the onc had made a mistake in leaving the tumor to begin with, but I don' t do shoulda couldas. I know he staffed the case w/other drs as well as my surgeon, so am confident he did the right thing. I do think you're right about 2nd opinions, though. Never hurts I guess. I have had people recommend several good hospitals, one near me in Seattle. It may come to that. I am so sorry about your daughter. Is she young? I've heard this usually affects younger women. I was smack in the middle of menopause.
Linda
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Nancy
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Joined: Jul 23 2007
Location: Altoona, PA
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Posted: Mar 13 2009 at 11:15am |
Linda,
Lori will be 47 in April, 45 at dx. So, perhaps the AC was working, and then the abraxane and carboplatin did not? Very puzzling. You had the AC 4 times and Lori had it 6 times, along with the Taxotere. Please seek another opinion Linda. What can you lose?
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Linda S
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Joined: Mar 11 2009
Location: Coeur d Alene ID
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Points: 53
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Posted: Mar 13 2009 at 11:23am |
Interesting. I asked my onc why he was switching chemos when it did appear the A/C was working. He said the risk outweighed the potential benefit and that the most benefit is gained by the 4 txs. Ii am finding that there are as many different answers as there are questions. The more I read here the more I think I will ask for a 2nd opinion.
Linda
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Linda S
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Posted: Mar 13 2009 at 11:26am |
Nancy: My prayers to you as a mother. My son died 23 years ago. He was 3 and a half. I know the anguish that comes with a sick child, no matter their age. I also feel bad for my daughter as she is herself a new mother and I know I am keeping her distracted.
Linda
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Nancy
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Joined: Jul 23 2007
Location: Altoona, PA
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Posted: Mar 13 2009 at 11:32am |
Linda,
Our grandson...soon to be 21 in a week, was dx with leukemia at age 3, and the heart stopping moments when he was dx and for 3 years following were sheer torture. My heart aches for you, as I can never imagine my life without my daughters or grandchildren. He is our youngest daughters' son.
It seems that every woman dx has these feelings of guilt,and that she is somehow causing a distraction in their family's lives. You are not my dear. This is not a journey you have chosen...it chose you. Your daughter will be just fine.
Much love Linda,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Crystal
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Joined: Mar 07 2009
Location: Alabama
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Posted: Mar 13 2009 at 7:12pm |
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My mom had taxotere every other week for a total of 4 treatments then had A/C for 12 weeks. Her last treatment was in Oct 08 and then they found her 2 lesions on her liver Dec 08. The onc told us he was hitting her hard with chemo so it wouldn't spread but then you know as we all do this stuff has a mind of its own. in jan 09 we started with avastin, gemzar, and carboplatin. this week he stopped gemzar and carbo to start Ixempra. He believes teh others had quit working. doesn't know what we will us next we are running out of options. Pray this works for a while and gets us in remission. He keeps telling us that is the goal remission, but I can't find anything out there that tells me once the tnbc has mets you can go in remission is it possible? Has anyone had their cancer spread to other organs then got in remission?
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trip2
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Posted: Mar 14 2009 at 8:37am |
Crystal hon you might post your question in the Recurrence/Metastasis forum and get a quicker response.
All my prayers that your mother does find remission.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Crystal
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Posted: Mar 14 2009 at 8:47am |
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Thanks Pam Ihope so too.
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Crystal, Mom has TNBC
DX 3/08, Mast and 3+nodes
4tax 5/08
12A/C 7/08 finished 10/08
Mets liver 12/08
Avastin/Gemzar/Carboplatin 1/09
Ixempra/Avastin 3/09
Lost the Fight 6/09
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cweed
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Posted: Mar 14 2009 at 11:21am |
Pam,
Did yours come back as a second primary or a distant recurrance (mets) of the original cancer?
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Cathy, Winter Park FL
Dx 12/05
3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b
Double mast
AC+T, dose dense
radiation
NED!!
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