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snickers
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Topic: Diagnosed with Liver and Lung Mets Posted: Jun 13 2012 at 9:07pm |
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I am in a total shock. I had a bi-lateral mast. did 6 months chemo (a/c + taxol) and went to the doctor yesterday to start radiation on my chest wall to reduce chances of re-occurrence. I asked the doctor to do a full ct scan as I was experience some small pain in my lower sternum. Found out today that my cancer had metastasized to my liver and lungs. My chemo doctor is shocked as no one has re-occurrence or metastasized so quickly after chemo (I finished my last chemo in May). Chemo did not touch/stop my cancer. So, chemo onc. is going to try and find me another chemo treatment to stop the continual growth of my cancer to liver and lungs. I know that my days are numbered and am so shocked as I am only 49 years old and have done EVERYTHING I could do to stop this nasty disease from spreading. I am not sure if anyone knows of any drugs/treatment/chemo that can help me at least live for another year or so.
thank you Snickers
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DX 10/31/11 6/13 lung/liver mets 9/13 NED lungs,liver met part.rem 5/4/13 NED lungs&liver 11/5/13 NED lungs..liver mets back LOTS LVR METS had y90 liver trtmt mets contrld 1/3/14 num brain mets
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123Donna
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Posted: Jun 13 2012 at 10:52pm |
Snickers,
I'm in shock too. I can't believe this after just finishing chemo. I'm not sure where you are being treated, but can you get a second opinion regarding treatment, maybe from MD Anderson (Dr. Gonzalez), Dr. Carey or Andrews and UNC-Chapel Hill? There are lots of other chemos you can try. What about clinical trials? My friend has a gynecological cancer and she had her tumor analyzed for chemo sensitivity to identify which ones would work the best. She's been stage 4 for two years now and her tumors are stable.
Here's a link to clinical trials for metastatic TNBC. You can further refine the search to the state you live in or facilities close by.
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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Grateful for today
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Posted: Jun 14 2012 at 12:59am |
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Snickers,
Just wanted to send some caring and supporting thoughts to you.
You got thru the shock of the initial TNBC diagnosis.
You will get thru this new shock......and what a shock......so hard to fathom life.
You have a lot of strength and you know how to research info........as you did about radiation.
Have your consults.......gather the information.
With a warm cyberhug and plenty of good thoughts,
Grateful for today..............Judy
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turtle
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Posted: Jun 14 2012 at 1:22pm |
Oh Snickers,
I am so sad to hear this. This just seems so unfair right after ending chemo, and offering yourself up to yet more treatments. I echo what Donna and Judy have said, particularly with respect to looking for clinical trials, and being prepared to be as aggressive as you care to.
We are here for you, please feel free to vent if you need, cyberhugs
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DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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TriplePositiveGirl
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Posted: Jun 14 2012 at 9:33pm |
Dear Snickers,
It is hard to know what to say. I can totally feel (and understand) your shock and despair. I am your age, and this really hits home for me too. I know the idea of more chemo is unsettling to say the least, but hopefully, your doctors will find the RIGHT combination that will get you back to NED. Don't give up hope. From what I have been reading, there are many new and effective drugs in trials that have fewer side effects and offer much hope to cancer patients experiencing recurrences and mets. Celldex is one drug that is showing great promise. I will be thinking of you often, please keep us posted with your progress. Love and Hugs to you, Lisa
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Tonya98
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Posted: Jun 14 2012 at 10:46pm |
Snickers,
This is competely unfair and I understand your shock. But I want to tell you my story to give you some hope. I had a recurrence 3 short months after finishing rads. My doctors were very concerned for me. I thought I was dying. Well, that was over four years ago. At this point, I'm considered stable and have been for two years.
I agree that a second opinion is in order. AC/T didn't work for you and it didn't work for me but there is lots of other treatments to try. Please let us know how you make out. I'll be thinking of you.
Tonya
Edited by Tonya98 - Jun 15 2012 at 11:00am
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2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.
1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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rmichaels
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Posted: Jun 15 2012 at 12:27am |
hi There, The same thing happened to my mom but much earlier in the chemo protocol. It just plain sucks. She going to do her third round of Cisplatin + Vinorelbine and then a scan to check progress. The Onc Doc says this is an aggressive round so I'm hoping it's the magic cocktail to get some tumor shrinkage. Stay strong!!! Rachel.
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Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.
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snickers
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Posted: Jun 17 2012 at 9:26am |
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Ladies
Has anyone else out there who have just finished chemo have come down with mets? I need your advice!! Has anyone also had mets to the lung and liver that was "controlled" or had shrinkage? I am trying to be hopeful, but also realistic. I am not looking for a miracle cure, just one that will give me a few years. Please help!
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DX 10/31/11 6/13 lung/liver mets 9/13 NED lungs,liver met part.rem 5/4/13 NED lungs&liver 11/5/13 NED lungs..liver mets back LOTS LVR METS had y90 liver trtmt mets contrld 1/3/14 num brain mets
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TriplePositiveGirl
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Posted: Jun 19 2012 at 1:12pm |
Hi Dawn, I was just reading on another thread today about how Gemzar/Carboplatin got rid of lung mets for another woman who had a recurrence only 4 months after her bi-mast. Maybe this could be a helpful chemo combo for you. I too had gemzar/carbo neo-adj for my tumor. I know that it did reduce the size of my tumor prior to surgery significantly (I only did half the cycles before surgery, then the other half after the surgery). I know that Gemzar is used often for pancreatic cancer as well. Another positive is that there were fewer side effects to this combo. Lisa
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TriplePositiveGirl
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Posted: Jun 19 2012 at 1:13pm |
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Dawn - the members name was Kita who just posted today...maybe you should connect with her?
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Kita
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Posted: Jun 19 2012 at 6:34pm |
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I also had a quick recurrence after my bmx and chemo. The lung mets are gone now but I didn't respond to my last chemo do now it's on to another one. My dr reminds me we have many choices, I've used quite a few already but I don't give up hope. Try to get on a parp inhibitor trial there are some all over. That's my next try if this Abraxane doesn't do the trick.
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snickers
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Posted: Jun 19 2012 at 7:58pm |
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Kita Can you tell me a little more about your treatment, including dates of orig. diagnosis, what orig. treatment you had, etc? What chemo did you not respond to on last chemo?
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DX 10/31/11 6/13 lung/liver mets 9/13 NED lungs,liver met part.rem 5/4/13 NED lungs&liver 11/5/13 NED lungs..liver mets back LOTS LVR METS had y90 liver trtmt mets contrld 1/3/14 num brain mets
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Kita
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Posted: Jun 19 2012 at 10:06pm |
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In oct 2010 had a lumpectomy to remove a mass that they thought was fiber. Turned out to be cancer that had already gone to my internal mammary nodes (non operable) had taxol/avastin for 16 weeks followed by 8 weeks of a/c. Then pet scan was Ned in April 2011 so u had a bilateral mastectomy. In aug 2011 I was having scans for radiation and found out the cancer was back in the same place plus 2 spots on my lung. Went on a clinical trial with gen/carbo and a kinase inhibitor which worked for about 6 months and got rid if the spots in my lung. My blood counts went too low too many times so I had to get off the trial and I went on xeloda/Ixempra which didn't work. After 12 weeks in that I had progression so now I'm on Abraxane (similar to taxol) and might go in a clinical trial of parp inhibitors if I need to after this.
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denise07
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Posted: Jun 19 2012 at 11:33pm |
Snickers,
I am so very sorry you have to deal with this. I am praying your next line of chemo will knock those darn cells to the curb. Did you ask about the parp trials? There are some promising treatments out there, I am sure your onc will treat you aggresively if not may be a second opinion is in order it never hurts. I am praying for NED for you. I am here for you.
Hugs,
Denise
This tnbc sucks!
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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denise07
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Posted: Jun 19 2012 at 11:37pm |
Kita,
I am also sorry you are dealing with this also, the good thing is that your lung met is gone don't give up keep the treatments going, praying for NED for you also.
Hugs,
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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denise07
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Posted: Jun 19 2012 at 11:40pm |
rmichaels,
Praying for your mom also. I hope this one is the magic cocktail too. Hoping for the best.
Hugs,
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Grateful for today
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Posted: Jun 20 2012 at 12:57am |
Rachel and your Mom, Tonya98 and Kita,
Sending lots of caring and hopeful thoughts.
Grateful for today...............Judy
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snickers,
Sending you caring thoughts for your Tuesday appointment.
Do not have any specific info on sunitinib (sutent) and laptanib (Tykerb) which you had asked for
info on another thread.
Had some thoughts...................
- When you consult with your physicians on your plan of care, consider the input of all -
the medical onc, surgeon and rad onc. Mentioning this as somewhere on a prior thread,
someone mentioned not to forget the surgeon and rad onc for what they have to offer for
the plan of care in addition to the med onc.
- When there is distant disease (lung and liver), one works with one's physician for the best
plan of care for one's particular situation. The input of additional consults at Comprehensive
Cancer Centers with TNBC expertise is something to consider.
Think your rad onc had access to several experts re: radiation plan of care. Hopefully, your
med onc also has access to other experts for exploration of all and the best options for you.
- One might consider asking the medical oncologist:
Would having any particular chemo drug now exclude certain chemo drugs in the future?
(Believe there is at least one chemo drug that once one has that drug, there is another
chemo drug that one would not be able to have in the future.
Cannot remember which drug it is.
Hoping this matter will be a non-issue for you in that the first plan has good results)
- One might also consider asking the physician:
Specifically, the pros and cons of each option given.
- Donna has already put the link for clinical trials in an above post......which you may consider
printing and bringing to your appointment.
You may have already noticed that Tanya (had lung nodules) had posted on http://forum.tnbcfoundation.org/taxol-avastin-metmab-trial_topic9662_post101825.html?KW=#101825
about her results with a clinical trial.
Think the clinical trial is: http://www.clinicaltrials.gov/ct2/show/study/NCT01186991?term=breast+cancer++MetMab&recr=Open&no_unk=Y&rank=1&show_locs=Y#locn
With thoughts of strength and care for you,
Grateful for today...............Judy
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snickers
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Posted: Jun 20 2012 at 7:24pm |
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Judy and others.... I met with my med. onc. today and he said I had no mets to brain, small mm nodules in both lungs, a few "suspicious" but can't confirm activity in my upper left rib and right hip, but can't confirm if it is mets. The biggest concern is the mets to my liver, which are numerous, largest being 8.5 cm. He said if we do not get that under control soon, I am not long for this earth. He will be starting me on Carboplatin and Gemzar this Friday and will do 2 cycles (6 weeks), re-CT scan and see if chemo is doing any good. If not, he will switch me to Xtempra and Xeloda and if that does not work, Carboplatin and Avastin. The curious thing about all this is my liver tumor shows 10-15% estrogen receptor positive....weak to moderate reactivity. With that said, the pathology report still support a dignosis of metastatic breast cancer from my left original breast tumor, so this is not a new cancer. Has anyone had mets that came back positive for estrogen or progesterone and if so, what does that mean? I am going to seek a second opinion at University of Washington, who has an expert on TNBC. Won't change my prognosis, but maybe shed some light on my situation.
thanks for all the support and cyber hugs!!! Snickers
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DX 10/31/11 6/13 lung/liver mets 9/13 NED lungs,liver met part.rem 5/4/13 NED lungs&liver 11/5/13 NED lungs..liver mets back LOTS LVR METS had y90 liver trtmt mets contrld 1/3/14 num brain mets
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Grateful for today
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Posted: Jun 23 2012 at 2:10am |
Hi Snickers,
Thank you for taking the time to update us with your treatment plan.
Hopeful thoughts for the carboplatin and gemzar.
So good to hear you will also get a 2nd opinion at University of Washington.
There is a thread on gemzar-carbo treatment that may or may be helpful:
http://forum.tnbcfoundation.org/gemzar-carbo-treatment_topic8136.html?KW=gemzar
There are 2 threads on gemzar:
http://forum.tnbcfoundation.org/gemzar-and-gamma-knife-treatment_topic9903.html?KW=gemzar
http://forum.tnbcfoundation.org/gemzar-any-familiarity-with-this-chemotherapy_topic9900.html?KW=gemzar
A few others have posted that their receptor status changed.........some had the change
on the surgery path after neoadjuvant chemo and some had the change with distant recurrence.
Don't remember the specifics.....but maybe if those members see this post, they might also post.
The issue of possible heterogeneity of a tumor may explain some of the receptor changes.
The initial diagnostic biopsy only checked part of the tumor......? if the entire tumor had all the
same receptors. There could be the question on some cases where the path report after surgery
was not inclusive for all the receptors thruout the entire specimen.
There are a few articles on tumor heterogeneity on page 7 on 3/8/12 11am on:
http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440_page7.html
Note: Others please post any additions or corrections to what I said about receptor status change. Thanks.
Sending you lots of caring and supportive thoughts with plenty of cyberhugs,
Grateful for today............Judy
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TriplePositiveGirl
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Posted: Jun 23 2012 at 2:37am |
Hi Snickers,
I hope the first cycle of gemzar/carbo went well. I was just thinking about you and hoping this gets this stinkin' disease under control for you.
Big Hugs - Lisa
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