26 months later...it's back
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Topic: 26 months later...it's back
Posted By: BornInWA
Subject: 26 months later...it's back
Date Posted: Feb 18 2009 at 9:22pm
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Ok, so I'm the new kid. I'm out of lurking and here's my first post. I just found out last Thursday that my cancer is back and my CT scan shows that I have a 1.9 x 3.2 cm tumor with two lymph nodes involved in upper lobe of my left lung. I'm scheduled for a biopsy on Monday. For some strange reason the doctor ordered a CT scan of my chest and abdomen, as well as a bone scan, but didn't order a head CT scan. I'm hoping that the fact that there was only the one spot on my lung is a good thing. I'm searching high and low for some sort of hope I can hold on to. I am a single parent with two teenaged daughters at home. My oldest is 17 and a senior and my youngest is 16 and a sophmore. I also have at son that is 28 and he and his wife are expecting their first child (and my first grandchild) in April. When I was first diagnosed with breast cancer back in November of 2006, I really didn't know anything about triple negative breast cancer. I focused so much on just getting through chemo that I didn't do much research into the type of cancer I had and the increased chance of recurrence. I just didn't allow my head to go "there". Now I've immersed myself in so much information that my head is spinning. I vacillate between hope and despair and keep telling myself that even if I only have a 2% chance of living 10 more years I just need to focus on that. My biggest fear is leaving my kids without a mom. My extended family lives in another state and I'm all they have (and vice versa!) Understandably, I'm scared, confused and overwhelmed yet also determined, and thankful. Thankful to be alive right now and, strangely enough, actually feeling healthier and stronger than I have felt in several years. Which, is a good thing, because I know I have a hell of a fight on my hands. So, with the help of all you fine ladies, I will face this fight with as much pluck, grace, hope and strength I can muster. I don't want to have to face this but I'm glad that I won't be doing it alone. Beth ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Replies:
Posted By: CarynRose
Date Posted: Feb 19 2009 at 1:57am
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Dear Beth,
I have been where you are and we disappeared the tumor in my lymph nodes and in my lungs. Used Taxol, Avastin, Carboplatin, and Erbitux (not sure if they'd use Erbitux at this time).
Know this -- we are at a time when progress and research is advancing on TNBC. The stats are old and we are creating the new ones. Yes, it's going to be tough and uncertain. Trailblazers have to live that way.
I really think we are going to be the first generation of 'chronic' TNBCers, hanging in there while they find a cure.
In the meantime, let's be proactive. If you want a head CT, insist on one, though keep in mind that this cancer is sneaky. In my case, PET/CT, MRI and other tests did NOT find my CNS mets because there were no lesions on my brain or spine. It was a Lumbar puncture that found those mets and only after I'd had a bad headache for a month and half my face paralyzed.
Beth, hang in there.
Hugs,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: BornInWA
Date Posted: Feb 19 2009 at 5:10am
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It's that voice of reason that I need to hear and that's why this place is such a godsend. The voices here are coming from a place of knowledge and experience. They've walked the walk and can truly empathize with you. Thank you so much Caryn for your response. It means more than you know. Hugs back, Beth ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: jody
Date Posted: Feb 19 2009 at 4:13pm
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Hi Beth,
Hang in there and BELIEVE that just like we now have a vaccine for cervical cancer, there will also be one soon for us.
Many hugs! Jody ------------- diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08 La Verne, California |
Posted By: krisa
Date Posted: Feb 20 2009 at 7:17am
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Beth, do you still live in WA? this disease is scary and being afraid is part of the package. i know women who have dealt with breast cancer and feel that they are cured and don't think about it. those women are all er positive with grade 1 or 2 cancer. TNBC is a different animal. the chemo drugs that have been developed have helped us to live longer. i will be thinking of you on monday.  |
Posted By: trip2
Date Posted: Feb 20 2009 at 9:09am
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Hi Beth,
I am so sorry dear to see it has come back but yes hold that hope and remember there are busy little white coats running around their labs right now doing studies, research, trials just for us! Can you imagine.
Just a short time ago we were for the most part ignored! Thanks to the hard work on the part of this Foundation and our members getting the word out to those they touch in their worlds it is getting better and will continue to do so.
Answers are just around the corner and meanwhile they are coming up with meds to help keep women contuing a good life until those answers land in our laps.
Use our strength, we are all here for you. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: kidzrn
Date Posted: Feb 20 2009 at 12:59pm
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Hey Beth, I hope I can be an encouragement to you. I was diagnosed originally in june 06, finished chemo jan 07 Scans I was NED in April O7. Scans in April 08 showed lung mets. Had 4 rounds carbo, taxol and avastin every 3 weeks with Zometa once every 6mos. The chemo was very effective in shrinking the tumor. Then I had wedge resections to remove tumor bed, followed by 4 more of same chemo. Now I will be taking just avastin every 3 weeks indefinitely, which is fine by me.....I had scans this past monday, including ct of chest/abdomen, bone scan and brain MRI. Thankfully I am NED again. Hoping the avastin really works till they can come up with something better. Hang in there...There are new treatments coming out all the time. I have 3 teen boys and a 4 year old daughter, So that complicates everything but it also gives me reason to fight, fight, fight! You can PM me if you want to talk...christi ------------- christi 2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, then Avastin every 3 wks until 2012...NED since 2/09 |
Posted By: BornInWA
Date Posted: Feb 20 2009 at 3:13pm
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Christi, Pam, Krisa and Jody, Thank you so much for your responses. I typed out a more eloquent response a moment ago but hit the wrong button and it was lost to the wind! Krisa, I currently live in Southern California but my brothers and Mom all live in Washington. I miss them all so much, especially now when I could so use a big brother shoulder to lean on. But, as much as I'd love to pack my bags and head home, I need to keep my job so I can have health insurance and an income to support my kids! I worked through chemo last time and hope that I can continue to do so this time. I just hope that I don't have to wait too long for the pathology report from the biopsy. My onc kept me on ice for almost two weeks for the CT results and that about drove me crazy. He's got a great bedside mannor but his staff have really been slow and sometimes don't return phone calls or call when they say they will. I need to make sure that I get a second opinion as well and have a few people to call to get some good referrals. So ladies, while I'm sorry we are meeting under such circumstances, I appreciate you and I'm glad to be here amongst you. Beth ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: jody
Date Posted: Feb 20 2009 at 5:50pm
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Hi Beth,
What part of California do you live in? I live about thirty miles from Los Angeles in the city of La Verne...just wondering if you are near by.
Let me know,
Jody ------------- diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08 La Verne, California |
Posted By: BrendaF
Date Posted: Feb 24 2009 at 11:28am
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Beth, welcome, even though I hate to invite you here. I believe I answered you on one of the other boards (I'm Analemma). My original mets were also to the mediastinal nodes, but I'm not on chemo now, since last May. Carboplatin and taxotere kicked ass! It's a tough chemo, but carboplatin seems to be especially effective for triple negs, so don't be surprised if that's what you get. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: BornInWA
Date Posted: Feb 24 2009 at 4:35pm
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Hi Brenda, I already had taxotere with my initial chemo. Would they give it to me again? I thought that if you had a certain type of chemo previously they don't repeat. ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: BrendaF
Date Posted: Feb 25 2009 at 4:14am
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I've answered this twice and it keeps vanishing.
What's going on with the site? ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: BrendaF
Date Posted: Feb 25 2009 at 4:18am
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OK, one more time.
I had taxol for first line, then taxotere with mets. Possibly you would get taxol now, since you had taxotere first-line.
Normally, when you use a chemo in mets, you use it until it fails you. This indicates that your cancer has evolved to become resistant to that drug. In my case, I had a complete response to carboplatin / taxotere after three treatments, NED, but had three more treatments to solidify the results. I've been off chemo since last May. Since I didn't use these drugs until they failed, we can assume that they might work again in the future, so they stay in the arsenal. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: BornInWA
Date Posted: Feb 25 2009 at 4:45am
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Brenda, Thanks for the info. It'll be interesting to see what my onc says. I'm going to try to get my results on Thursday. I hope they'll give them to me over the phone. They haven't been very good about that previous to this point. I'm still learning. ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: The Scoop
Date Posted: Feb 25 2009 at 1:05pm
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Successful teatment in Lung has used a GEMCARBO pack by Eli Lilly. |
Posted By: trip2
Date Posted: Mar 14 2009 at 1:49pm
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Beth,
Checking in on you, how are you doing and what did you find out?
 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: BornInWA
Date Posted: Mar 14 2009 at 2:52pm
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I wasn't happy with my old onc so I got a new one. My new oncologist specializes in breast cancer. I had my medi port put back in this past Thursday and I have a PET/CT scan scheduled for this coming Tuesday along with a MRI of my brain. My old oncologist said that my insurance company would not pay for a PET/CT but my new oncologist didn't have any problems at all getting them to pay for it. I'm scheduled to start chemo next Thursday and I'm supposed to be starting out with Avastin, Carboplatin and Ixempra every three weeks X 6. No mention of any radiation or anything like that yet. I know there was a concern that where the tumor is in my mediastinum is within the area that was radiated after my mastectomy and chemo the first time around. I'll be seeing her on Thursday so I'll have the results of my PET/CT then. I hope that I don't have any metastasis in other places. Beth ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: NancyJane
Date Posted: Mar 15 2009 at 3:39am
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Beth: Good for you, finding a new Onc! This is too important to stay with someone you have little confidence in. Sounds like you are on the right path. Taking control and playing an active role in your treatment will help you stay strong and focus on fighting this beast. You can do it!!
Good luck on Thursday. We are all here for you sending lots of love and light ------------- 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 |
Posted By: trip2
Date Posted: Mar 15 2009 at 3:40am
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Beth,
Well you know what, if that don't beat all! Thank heavens you fired the first one and found one that can make things happen!
 Good for you, we have to stand our ground.You certainly have alot going on in a short period of time. My prayers and support will be with you that the scans are good ones and the therapy does the job.
I hope you'll keep us posted and update us on the scan results too. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: BornInWA
Date Posted: Mar 15 2009 at 6:11pm
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I start chemo on Thursday 03/19/09. It's going to be Carbo, Avastin and Ixempra, every three weeks x 6.
------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: trip2
Date Posted: Mar 15 2009 at 7:07pm
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Keep us posted Beth on how you are doing. We will be with you in spirit Thursday when you begin your therapy.
Best wishes, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: PineHouse
Date Posted: Mar 15 2009 at 7:17pm
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Beth,
That's a kick a$$ combo. I'd be very very surprised if it doesn't get you NED soon.
Big hugs for now. ------------- Stage IV lung-06/06 brain-12/08 BRCA1 TNBC Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan Currently Abraxane+Gemzar (3/09) http://pinehouse.wordpress.com/ |
Posted By: BrendaF
Date Posted: Mar 16 2009 at 4:10am
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Ditto to what Pinehouse said! I had carboplatin with taxotere and it was tough, but I have no way to know which was tougher, carboplatin or taxotere. I've never had Iressa, but I've heard it's tough, but known to kick triple negative cancer's butt. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: BornInWA
Date Posted: Mar 16 2009 at 9:20am
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I'm nervous about the side effects. I had TAC with my initial breast cancer and I'd have a few rough days after each cycle of chemo. I'm hoping that I won't miss too much work this time around. It's the fatigue that I hated the most. Of course I know that with new drugs come a whole new passel of side effects. Ugh! A few things I'm doing different this time are better diet, better hydration and exercise. I get my PET/CT and brain MRI tomorrow so I'm nervous about that too. Does anyone have any helpful info on Maitake mushroom extract or Boswellia? ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: BrendaF
Date Posted: Mar 16 2009 at 10:13am
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I took maitake during my first go-round in 2005, then stopped when I developed mets anyway. At the time, there was a study at MD Anderson, and then later I checked and it had vanished. There is some data on beta-glucan, which is the active component of Maitake.
I take boswellia now, and I believe Pinehouse does also, as part of the Edge - CAM regimen from NoSurrender's site. Edge has a lot of information on alternative and complementary treatments, and boswellia is recommended especially for triple negs. I also take ECGC, resveratrol, curcumin, D3, and calcium. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: BornInWA
Date Posted: Mar 17 2009 at 6:48am
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I found the post on NoSurrender's site and ordered what I was missing in my supplement line up. I was already doing the D3 and calcium as well as fish oil and CQ-10(?), C, E, etc. The maitake is so darned expensive! I held of on that one for now. Today I go for my PET/CT scan as well as a brain MRI. I should have the results by Thursday when I see my onc again and start my chemo. The incision from my port is healing really well and hardly hurts at all. I hope I'm just imagining that I'm starting to feel a little discomfort from the area where they found my mets (mediasteinum). I'm trying really hard not to be angry at my old onc for not having me do any CT scans or testing other than the tumor marker tests every three months and not ordering a CT when he saw that my tumor markers were up back in October of last year. I know that the tumor marker test isn't real reliable but if there's even a hint I would want to do some other testing to make sure. Ugh...ok, I shouldn't dwell on that and I need to stay present and focused on what I can do from here on out. Happy thoughts, happy thoughts, happy thoughts. Hugs to you all! Beth ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: trip2
Date Posted: Mar 17 2009 at 9:45am
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Beth honey, all my prayers for good scans Thursday.
Yep look forward, the past is history, you got it!
Please share with us your results.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: BornInWA
Date Posted: Mar 18 2009 at 2:38pm
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Insurance companies are EVIL! I just got a call from my oncologists office telling me that my insurance company will not approve the chemo combo that my oncologist submitted. So, while I was scheduled to start tomorrow, now I have to wait to start chemo! I'm pretty sure I'll still get the Carbo and Avastin but they wouldn't approve the Ixempra. So I may get Taxol or Taxotere instead. What on earth is their issue??? ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: Nancy
Date Posted: Mar 18 2009 at 3:03pm
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Born,
They are not just evil they are bas*****!! Who are they to decide the treatments? They are not doctors...oncologists...there are not enough swear words either in the dictionary or street language to describe these monsters.
The people sitting in those cubicles should be made to see you and all those denied treatments/meds face to face. They had better hope that they or a loved one never is dx with cancer. Why not the Ixempra? Cost?
How long do you have to wait to start chemo? Oh I get so bloody angry when you gals write of all that you have to go through.
Hugs,
Nancy ------------- 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 |
Posted By: PineHouse
Date Posted: Mar 18 2009 at 6:36pm
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Evil bastard!! There, Nancy, I spelled it for you. I don't know why WE allow insurance company to play doctor, second guessing the practicing oncologist who's obviously more familiar with the particular patient's case.Beth, if I'm not mistaken you are in California? I have had experience with fighting & appealing for my treatment (two different times). I'm fiestier than the doctor's office, I appealed to the ins co. unsuccessfully so I took them to the state's independent medical review. Both times the state ruled in favor of us (doctor and I). But yes, the process was exhausting.
Does your oncologist think that settling for that modified combo would be ok for your particular case? ------------- Stage IV lung-06/06 brain-12/08 BRCA1 TNBC Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan Currently Abraxane+Gemzar (3/09) http://pinehouse.wordpress.com/ |
Posted By: BornInWA
Date Posted: Mar 18 2009 at 7:23pm
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Yes, the nurse who called me today said that I could do Carbo, Avastin and Taxtore (I think) instead and she felt that that would still be a good combo with no compromise to the effectiveness. I hope she's right. I should know more after my appointment at 10:15 Thursday. The nurse also said that my PET/CT and MRI held "no surprises". I hope that means that the cancer mets are only in the one spot in my mediasteinum. I'm keeping my fingers crossed. I just want to get started because it just makes me so nervous to sit here doing nothing. I did get some supplements I ordered today and I'll start on those tomorrow and take them until I finally start some sort of treatment. My oncologist isn't against the supplements but asks that we not take them 24 hours before and after a treatment. I'll check back in tomorrow after I find out more at my appointment. Big hugs to you all, Beth ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: trip2
Date Posted: Mar 19 2009 at 9:03am
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Beth,
I hope you hear good news today. It is just awful what the insurance companies are doing and it seems many people are having even more trouble since so many companies made changes beginning at the first of this year.
http://www.cancer.gov/cancertopics/druginfo/fda-ixabepilone - http://www.cancer.gov/cancertopics/druginfo/fda-ixabepilone
Pinehouse has fought and got what she rightly deserved and I admire her for that. It is a sickening shame women who are going thru what we do to also have to fight the system for help!
Let us know what you find out, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: BornInWA
Date Posted: Mar 19 2009 at 7:48pm
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I saw my doctor today. The Carbo is out. The tumor sample they sent to the lab for sensitivity testing came back as not sensitive to the carbo so we aren't going to use that one. She wanted to go with Ixempra and Avastin as a second choice and is going to try to see if the insurance company will go for that one. Third choice will be Avastin and Taxol. Either way I'll be starting some sort of chemo next Tuesday.
My PET/CT scan came back and showed that the mediasteinum is the only spot that shows cancer. The tumor isn't any bigger than it was on the on the CT scan I had done back on January 29th but there are a few more lymph nodes involved, the biggest of them is about 1 cm. The brain MRI was also negative and I'm going to have an MRI of my neck next week as well.
I'm relieved that there's no other mets spots. I hope that's a good thing. I should know more tomorrow about my chemo. Fighting with the insurance isn't worth it right now because I can't afford to take the time. I should have started on something at least a month ago and to wait any longer would just be too big a risk.
Oh, and the Avastin, Taxol combo would be once a week. My onc tells me that's much easier to tolerate. Any one have any experience with it?
Hugs to you all,
Beth ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: trip2
Date Posted: Mar 20 2009 at 6:12am
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Hi Beth,
No I have no experience but I'm sure someone will jump in soon.
Here is some information for you though.
http://www.sciencedaily.com/releases/2007/12/071227183824.htm - http://www.sciencedaily.com/releases/2007/12/071227183824.htm
That is good news the tumor isn't any bigger and that the brain mri was negative!
Well you know having the information ahead of time that the Carbo is a no go will be to your benefit. Wonder how many women are given meds w/o this testing, I am so glad they did this.
http://www.breastcancer.org/treatment/targeted_therapies/new_research/20080225.jsp - http://www.breastcancer.org/treatment/targeted_therapies/new_research/20080225.jsp
Big hug
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: dmwolf
Date Posted: Mar 20 2009 at 8:18am
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Beth, One thing to be aware of is that the chemo-sensitivity testing may not be accurate. (what type of test was performed??) My understanding is that cancer cells behave very differently in our bodies and in test tubes. I haven't read anything on this in detail, but I remember many women on this site posting that their chemo-sensitivity test results were very inaccurate, purporting that chemos that had worked well should not work and predicting high sensitivity to chemos that did nothing. So...I'm not sure you should rule Carbo out. In general, it is a very good drug for TNs. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: HairSprayMom
Date Posted: Mar 24 2009 at 8:51am
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Hi. I am a newbie to this site as well. I feel like my story is your story. I did no research into my cancer when I was diagnosed either(Metaplastic Carcinoma Triple Negative), I just wanted to be done and move on.Well I am one year post chemo and I just heard triple negative for the first time friday at my oncologist. I am sure it was said before, but I was so numb that I missed it I guess. How the hell did I wind up with the 2 most rare forms of cancer together is what I keep saying to myself. I also have kids at home Nikole 3, Andrew 15, and Frankie 17(a senior). I have been checking out the stats and what little I can find does not make me happy! My onc ordered a PET Scan for April 1st and I am anxious to get the results, but realize I cannot take that big sigh of relief til I hit 5 years! I just want you to know that I am thinking about you and if you need anything...to laugh, cry, scream, pound on a wall...whatever just let me know.
Love and Hugs!
Regina
AKA HairSprayMom  ------------- 39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy! |
Posted By: BornInWA
Date Posted: Mar 24 2009 at 4:00pm
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Today was my first chemo treatment. I ended up getting Taxol and Avastin weekly. I'll have the taxol for six weeks and then just Avastin for awhile. I'll know more from my oncologist when I see her next week. I don't have to have Neulasta until my third week. I've been doing some research and have found that the spread to my mediastenum is sometimes considered a regional recurrence as opposed to distant mets. My PET/CT showed that I have the one tumor as well as some lymph nodes on the same side of my sternum, under the ribs on the side where I had my mastectomy and that's the only place in my body where the cancer showed up. I know it's pretty likely that it's going to spread but for now I guess I'm just looking for some hope. Hugs to you all and thanks for sharing your experiences and thoughts Beth ------------- DX 11/06 Stage IIB, Grade 3, IDC, Negative for BRAC 1&2 Modified Radical Mastectomy, chemo TAC x 6 (every 3 weeks), Radiation. DX mets to mediastinum 02/09. Currenly on Taxol/Avastin. |
Posted By: trip2
Date Posted: Mar 25 2009 at 6:11am
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Hi Beth,
I hope these treatments go easy on you, you've had alot going on in the last year or so.
Keep sending the updates and letting us know how you are doing. That is interesting to read about the mediastinum spread sometimes considered a recurrence, that is good news.
I really hope this Avsastin does the job! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |