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eryn 
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Joined: May 06 2010 Status: Offline Points: 3 |
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 Topic: anyone frustrated?Posted: May 06 2010 at 6:45am |
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This has been the decade of breast cancer awareness. Corporations and individuals worldwide have been pouring in donations to fund research. And yet, I am undergoing the exact same treatment for my TNBC that I did nearly 8 years ago. There has not been ANY change to what is recommended. This is my third time around. 2003 - left side. 2006- new primary right side. 2009- reoccurance right side. I've had two mastectomies and two different reconstructions and two different oncologists, but always the same old chemo meds. What gives?? Where is our research for this nasty, aggressive little monster?
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: May 06 2010 at 7:37am |
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I have the same frustration and sadness.
 Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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bjoangtx
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Joined: Jan 11 2010 Location: dallas, tx Status: Offline Points: 74 |
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Posted: May 06 2010 at 2:25pm |
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So sorry you have to start chemo again. I'm kind of frustrated as well. I have my first follow up PET scan/onco appt the first week in June. I've done a lot of reading about TNBC and have found the information here and in many of the journals I've accessed to be pretty varied. What truly feels like the wall I'm running into though is that "my team" seems pretty resistant to my questions. I want to find out what their plan is if it does come back. What drugs? dose dense? long term low dose? So I can do some research before I have to make decisions. I honestly feel like I didn't get up to speed on what was actually going on with the TNBC until I was in the middle of my intial neo-adjuvent TAC. I had been told it was triple negative by my surgeon (the first guy I saw for the biopsy) but I was still reeling from the diagnosis. I was in chem 10 days after the the biopsy. I only got started to understand about tnbc when I read an article in CURE whiule I was sitting in my psychologists waiting room. It hit me like a Mac Truck. None of my docs had said "poor prognosis" when we were talking and once I started reading on my own I never saw a study that said "good prognosis". I want to be an active informed director of my treatment but I find that asking questions or bringing studies to appts seems to disturb the medical personnel. Is that common or do I just have a communication problem with these people? I asked about BRAC testing for instance and was told I didn't need it because I had no family history. I was told mine was basal cell but I didn't read it in the path report anywhere. Is BRAC only based on family hx? It looks to me like if we go 4 years from dx DFS our survival rate is better than receptor positives and after 8 years it looks like we're done looking over our shoulders but I honestly feel like getting the information I want is a battle not an exchange.
Thanks for the opportunity to vent. Have you looked into the clinical trials people? I'm thinking of going to a teaching hospital to get some answers. |
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St 2 Gr 3 2/5 nodes dx 8/9 age 56 Neoadj ACT @ x 6 @3wks bi mst. 12/09 Infect expander 12/31 remvd, replcd 1/27. 28 rads 4/10 Brkn rib 5/10 PET 6/10 NED Recon 9/17 & 12/10 Ki67 85% basal
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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: May 06 2010 at 4:09pm |
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Hi Joan,
Yes, yes, very much frustrated.
I had two different Oncs for both dx and neither discussed anything with me. The second time I had done some research, would take in studies, articles, ask questions only to be rebuffed. I asked him if my tumor was basal, he didn't know what basal meant! Our last visit I asked a couple of questions, he turned on his heels and told me to "get a job". He is history.
Many women have commented about this in the forum over time. Some are lucky to have docs who will listen, answer questions. Sometimes maybe they don't know the answer. No one knows what will be in the future.
You should check out this website, http://www.facingourrisk.org
This site explains about the mutations.
Many women who are brca 1 positive have TNBC. It can pass from mom or dad. You really should consider seeing a Certified Genetic Counselor to see if they think you should have the test.
A couple of years ago TNBC became a hot topic and there is, finally, research going on but yep,
very frustrating. Still sort of guessing in my eyes.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: May 06 2010 at 4:17pm |
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Joan,
Regarding BRCA and family history. I had no family history of breast cancer, but I didn't know much about my father's side. My grandmother had only sons and I was the only grandchild. Even with no family history, my onc had me tested for the BRCA gene. I was negative. It was a relief to know so that if I was positive, it could change my treatment (ovaries removed) and possibly impact my children. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Julia
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Joined: Jun 14 2009 Status: Offline Points: 156 |
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Posted: May 30 2010 at 8:17am |
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It's crazy, isn't it? I feel almost apologetic towards some of my friends who raise funds for BC, because it's like I OUGHT to have more options, or ideally a strong chance of cure, after all their efforts. And yet, here we still are...
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Diag. 3/09 TNBC, IBC, 55mm.
4 rounds AC, 4 weekly Paclitaxol. Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads. 2 more rounds of A/C, 6 months low-dose CMF. |
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: May 30 2010 at 5:49pm |
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What shade of "PINK" should we come up with for TNBC? I feel guilty when friends of mine ask me if I participated in this "thon" or that "walk" and I say NO. I told a lady the other day who was getting her last chemo treatment for colon cancer that I did not participate in those things because they were not raising money to fight TN breast cancer. She said, "what do you mean; I thought there were drugs out there for breast cancer and I had to go into the spill about no herceptin, no tamaxofin for triple negatives." As I said, it was her last treatment and she was scared because now she is entering that waiting game. I told her that I am in the same boat she is in. Boy do I get tired of explaining TNBC. Anyway, she was really surprised.
I ask the drug reps that come into the clinic about research on TN and they (bless their hearts) look shell shocked and wish I would go away. But we CAN'T GO AWAY. WE HAVE TO KEEP PUTTING THE WORD OUT THERE. WE HAVE TO KEEP BEGGING FOR A CURE. Thanks, Lillie |
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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IndyGirl61
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Joined: May 20 2010 Location: New York Status: Offline Points: 49 |
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Posted: May 31 2010 at 6:21pm |
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WE WON"T GO AWAY! I have had to explain TNBC so many times in such a few short weeks that it is quite, literally exhausting. When I tell my friends & family there are no oral meds for TNBC, they are like what? Yeah I know, they are conducting clinical trials, one of which I am participating in. I want a CURE for TNBC. I want other options for women who have to go through this terrible journey. Mine has just begun and already I am overwhelmed with seeing all the women here with no node involvement (which I have none either) who have had double mastectomies or bilateral mastectomies. I have been going though this since last SEPT & was told no cancer, just a cyst, all tests were performed and during my lumpectomy they found the tumor hiding behind the cyst! I guess I am over the initial shock of dx on April 20th, my daughters 19th birthday and now I am just plain angry! Jeez I can't even get in to see my Oncologist til June 9th. which they are planning 4 rounds of chemo 36 rads but I cannot inform you of what meds they are using. During my tissue biopsies, on both breasts, they found in the right a few very small cysts and I imagine these too well eventually recur on down the line. They did not say that but just from research, it looks inevitable. I have no history of breast cancer in the family but my mother had a benign lump in her breast in 1972. My father died of lung cancer in 1991. So I am going to push, nudge or whatever it takes to get the BRCA testing done. I have two daughters that are grown and worry about them with that. I also have had a partial hysterectomy and still have my ovaries so there is another area of concern.
I pray that my body can handle the chemo. I have "heard" some women just cannot tolerate it or have allergic reactions and are in the hospital for days. I have to get MAD at TNBC, because I have to stand up to it, fight it. Control it and it Not control me. I felt so helpless at first and still have my days but I have to be strong, just have to move forward. LIVE each day to the fullest, STEP OUT on my Faith in God and KNOW I can beat this. My friends here I have met in the brief time I have been a member have helped me so much more than words can express. I thank you all from the bottom of my heart, I am trying so hard to stay positive.  Marianne |
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AGE 48 1/2,DX:April 20, 2010 TNBC(IDC Stage 2)8ct tumor removed 4/10/10. No node inv, clear margins per sent node bio & port insertion 5/5/10.
Chemo 6/23 AC/TAX for 4 mos, 2Xmonth & 6wk Rads after. |
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eryn
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Joined: May 06 2010 Status: Offline Points: 3 |
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Posted: Jun 03 2010 at 2:21pm |
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thanks for your stories. My heart goes out to all of you. Lillie, I too have to explain the constant misconceptions that all breast cancer is alike and is like having "cancer-lite". To the rest of you dealing with ignorant and non-commital medical personal and arrogant onocologist, the fact is our prognosis is not good and they don't have a to way to deal with it, so they refuse to "deal" with us! I agree. We need a new color! :) The public is unaware of our dilema. What can we do to promote help for us?
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tnbcsucks
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Joined: Jun 02 2010 Location: Michigan Status: Offline Points: 76 |
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Posted: Jun 03 2010 at 3:23pm |
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Indy Girl, I too was just diagnosed (IDC) April 22nd with a lumpectomy done on 5/11 3.5cm tumor with clear margins, and no nodes positive...grade III tho....but scared to no end of the outcome. I get my port tomorrow so I can start chemo on Monday the 7th. 20 weeks of it with 6 weeks of radiation to follow. It seems like this is a wait and see where and when it comes back. Trying to focus on the positives...but hard to some days. For those that I explain this to...am I correct in saying TNBC means that we can't take oral drugs that we only respond to chemo, and even then we have a higher chance of it metastasizing to
somewhere else. And then when you throw the grade III on there (for me) the chances of it coming back are even higher? Is there another way to explain it to people...I'm new at this so trying to learn all I can.
Thanks!
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mwall47
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Joined: Jun 05 2010 Location: Pearland, TX Status: Offline Points: 23 |
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Posted: Jun 05 2010 at 1:24pm |
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I am in the same boat as you, and I have mets to chestwall. So far, I have had (4) different chemos which prevented me from the Parp trial. The radiation actually stalled the cancer better than chemo. Mostly, the chemo hasn't worked for me, except Xeloda (pill form), then it stopped too. I am waiting on the Parp results too.
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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: Jun 06 2010 at 7:49pm |
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Hi Mnwall and welcome although I certainly am sorry to read you are going thru this once again.
There doesn't seem a way to group us up really, we all respond differently to treatment.
What did you have before and what will you be using now?
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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mwall47
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Posted: Jun 06 2010 at 8:19pm |
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I started with only radiation which worked fine for just over 18 months, and then in the summer of 2005 I sought medical attention for chest pain. No cardia problems, and the GI doc found Acid Reflux. I still had chest pains after meds, Endoscopy, etc. My GI doc ordered CT which showed a mass on pleural area. I had a lung biopsy in 12/05, then chemo (which did nothing), radiation again, and again it slowed the growth. About March 2006. the CT showed progression of growth, new area too in chestwall. Xeloda for about 1 yr with a short break after hurricane IKE. After Xeloda, Doxil from April until August, then clinical trials - one without chemo, then Everolimus + another pill. The side-effects were nasty, and I had to have a Colonoscopy, had infection of thumb, bleeding lips, mouth sores, bleeding nose and rectal area, not to mention vaginal sores. I am taking a break. All the docs say is more chemo via clinical trials. That is my story in short, but I am so grateful to be here since 2003. I am 63 years and worked full-time (with over time) up till last September.
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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: Jun 06 2010 at 8:44pm |
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You are amazing, my goodness with all that you have been thru and to work thru most of it?
Thank you for sharing your story.
The last few years for you have been a nightmare. I can understand your wanting to take a break.
My fingers are crossed they can come up with something that works which isn't so hard on you.
I too am 63. This disease tends to strike the younger women but we have several in here over 50.
Please keep us posted on how you are doing and I'll look forward to seeing your posts. Make yourself at home.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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mwall47
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Posted: Jun 13 2010 at 12:45pm |
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This board is great, and I can't wait until we all get some results from the Parp Inhibitor. My doctor, Dr. Frankie Holmes, wants me to try another Clinical Trial. I am going to M.D. Anderson to find out their options, but they are so big and have given me the "run around with appointments." We really need to be informed and advocate for ourselves.
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trip2
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Posted: Jun 14 2010 at 5:09pm |
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MWall,
Please keep us updated on what you are going to do. Sure sorry to hear they are giving you the around at MDAnderson. It is stressful getting everything ready for them. Good luck..
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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mwall47
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Joined: Jun 05 2010 Location: Pearland, TX Status: Offline Points: 23 |
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Posted: Jun 14 2010 at 8:04pm |
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I finally got in to see a doctor at M.D. Anderson, but they sent me to the Phase I Target Therapy clinic,a nd the doc there said I was supposed to see another doc. Long story; they called later this last week while I was on my way to the dentist and had my schedule really confused.
Finally, I was in to see the doctor, the right one at the Breast Center, and I liked her. She has a Phase II study with the Target drug Dasatanib (sp). I received the consent form to review at home. I may try this, but other than that I am stuck with more chemo. She is also waiting to learn the results of the Parp Inhibitor; M.D. Anderson doesn't have any trials with the Parp at this time. She said the Carboplatin works best if it is used as first chemo for patients.
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IndyGirl61
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Joined: May 20 2010 Location: New York Status: Offline Points: 49 |
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Posted: Jun 15 2010 at 12:06pm |
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Hi tnbcsucks....and boy that's the truth. The name says it all. It is nice to meet you and I am glad we have this site. They did not really give me a grade, but just said it was "HIGH" so I am assuming that is not good. What confuses me is that my Oncologist never mentioned anything about removing my breasts as an option and most all women here at this site seem to have double mastectomies or bi-lateral mastectomies. I have no node involvement at all, margins clear, but I see alot here with that too and still got their breasts removed.
I called my Oncologist nurse just a little while ago because I wanted to ask her the percentages of recurrance with or without mastecotmies. My husband was supposed to ask yesterday at our appt. and had my questions all wrote down, but God Bless him, he was very nervous and concerned and forgot. They did seem to think the chemo and rads will take care of it, as I am getting the "dose dense" which I guess is very strong approach. I wish you peace of mind and strength beyond measure for your journey. Please stay in touch for I will be just a few weeks behind in the chemo. God Bless and you are in my prayers! Marianne |
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AGE 48 1/2,DX:April 20, 2010 TNBC(IDC Stage 2)8ct tumor removed 4/10/10. No node inv, clear margins per sent node bio & port insertion 5/5/10.
Chemo 6/23 AC/TAX for 4 mos, 2Xmonth & 6wk Rads after. |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jun 15 2010 at 12:27pm |
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Marianne,
High Grade is usually Grade 3. As you probably can see from most of our signatures that TNBC is usually Grade 3. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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tnbcsucks
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Posted: Jun 15 2010 at 1:57pm |
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Hi Marianne, my first week of chemo went good, no real side affects, a little nausea, but the meds took care of that. I just slept lots. This week feeling really good, back to work. I go back in on Monday for my 2nd treatment. I got my hair cut short in anticipation for it to fall out.
From speaking with a doctor last week, I was told the lumpectomy with treatments afterwards is as successful as the masectomy. not to sure if that is the norm or not. If anyone has any lite on the topic, please share.
But did learn that if my BRCA test comes back positive they will recommend a double masectomy along with my ovaries to be removed. Is this just so it doesn't come back in my breasts? Whats the benefit of the masectomy? It can still metastasize right?
So much to learn! This site is wonderful as all of you ladies for your support! THanks!
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TNBC DX April, 2010,Lumpectomy May 3.5cm with clear nodes,Stage 2, Grade III Started Chemo on June 7: 4 A/C every other week and then 12 weeks of Taxol. followed by 6 weeks of radiation.
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