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Do I stand a chance?

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Priory100 View Drop Down
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    Posted: Jan 26 2013 at 6:57pm
Hello everyone. I was diagnosed with Triple Negative in October 2010, after having been told that the lump in my breast was a fluid filled cyst and nothing to worry about. I could go back and get it drained if it go too big and uncomfortable, but not to worry. Because of that, I did leave it for over a year untill it was really large and I wanted rid of the discomfort. When I went to the hospital, they did various tests, and at the end of the day told me that I had cancer. This was a tremendous shock and difficult to take in. Following CT, MRI and biopsies I was told it was triple negative, grade 3 and aggressive. I started chemo in November 2011 on FEC-D. Following that, I had a full mastectomy in March 2012, followed by 25 radiotherapy sessions, which ended round about June. I had a follow up scan in August which was NED which delighted me. At the beginning of October I had another scan and was shocked to discover that the cancer had spread to various parts of my body, but nothing large. This included bones, some nodes. During a visit to my oncologist she told me that there was nothing I could do to help myself and was unable to give me a prognosis. I asked her if there were any trials for TN and she said no. I left that afternoon very depressed. However in the evening she phoned me to say that one of her colleagues was opening a trial for TN and would I be interested. Of course! I met with the new Onc and he s,aid the trial was for a biological drug called Ganetespib.I agreed to go on it and just had to wait for the study to open. There was a delay and it did not start till this month so I had lost a couple of months. Pre trial scans have shown that I have wide spread bone mets, lesion on liver and adrenal gland, pleural infusion and various nodes. I dont have to be too bright to realise that this is not good. What I did not realise at the time was that to qualify for the trial you had to have a prognosis of between 6 and 12 months. This really was a reality check, and I now find myself heartbroken that there may be no hope. My new onc is optimistic that this new drug, which has been used for lung cancer with some success and HER2, could be beneficial for me. Please please will someone reply to this and help me find some hope. Thanks to all of you. Sorry this is so long, and I have never posted anything before.
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2013 at 9:43pm
Priory100,

I am truly sorry to hear about your story and how depressing everything has been.  First of all, you should not even think that you won't qualify because of prognosis.  In your case, you will be receiving first-line treatment for MBC and there are many different regimens available if the first doesn't have the desired effect.

I took a quick look at clinicaltrials.gov about Ganetespib. It is given as monotherapy. Is this really the best approach?  Can you get another opinion ?  There are other women on this forum who are from the UK -- (unfortunately I don't recall their names offhand).  Perhaps searching on the forum and they may be able to help.  If I am in your position, I would really think hard about getting another opinion from someone who is savvy about TNBC, and as soon as possible. Other women on the forum have received different first line treatment for MBC and have reported good results.  You might want to go to the recurrence/metastasis topic and browse.

Are you having any symptoms from the mets?
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Priory100 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Priory100 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2013 at 11:10pm
hello lee and thank you so much for replying so quickly. I do have quite sever pain from my hips and sacrum. this is controlled by morphine and other pain relief tablets. I have just come out of hospital, where they had put a new pain management plan in place as I had not been taking nearly enough pain relief, and because of that I was suffering from fatigue, nausea and vomiting. Could not eat and the smell of food was dreadful. However the team in hospital worked very hard to get me back on my  feet and I was a different woman when I left.At present there is no other noticeable pain to speak of. The trial that I am currently on is not a long one, and I am halfway through at the moment. Having read many of the posts here, I can see that there are certain chemos that  may suit TN, but I am at a bit of a loss to know which ones to go for. The onc that I am with at the moment felt that this may be an opportunity for me to have a more targeted therapy, and being aware how difficult TN is to treat, I agreed. We have however discussed other chemos that he feels may be worth looking at and he suggested a platinum one? He bucks the trend here, because most of the other oncs at the hospital follow the set line of treatment that they are meant to adhere to, but he is prepared to disregard that in favour of a chemo that has shown results. I feel exhausted by it all and that doesnt help. I cannot sleep, its 4 am here. I look forward to hearing any other advice you might have, as at the moment I am in a very lonely place.
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 12:12am
Dear Priory 100,

Our private message system has been changed and I am unable to send you a Private Message until I delete hundreds of them and I am too tired to do that tonight.

I asked a friend Donna123 to write to you, via Private Message and give you my email. If I hear from you I will send you my phone number and I should be free to talk to you from 8 am PST on (3 pm for you Sunday). I am also happy to call you and to be clear, there will be no expenses to you of any kind nor do I accept monies from doctors, cancer centers, drug companies etc.

I am a volunteer patient advocate working actively with women with Metastatic Triple Negative Breast Cancer.

I have referred several women to oncologists in the UK. I cannot/will not give you medical advice but perhaps one of these oncologists might be able to give you a different perspective after a consultation?

warmly,

Steve

p.s. I would offer to speak with you now but I am very jet-lagged from my flight from NY to West Coast.
sorry about that..hopefully we can speak tomorrow.


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Christine63 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Christine63 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 1:03am
I know exactly how you are feeling.  First diagnosed with stage IIb in 3/09, went through chemo, surgery and radiation, breezed through that and had a minor recurrence at same site in breast, more surgery in 10/10.  Thought I was set for life, went to all my 3 month blood draws and starting in March '12, blood test showed elevated liver enzymes.  So the game began again, ultrasounds, MRI, PET scan, liver biopsy..found cancer has metastasized to the liver.  Chemo started in May '12 on carbo/gem and did not work for me.  Had to skip many infusions due to low blood counts, so cancer spread a little more on my liver, lymph nodes on sternum, other tiny "spots" on bones, lungs.  Started Taxotere and Xeloda in Sept. '12 and wound up hospitalized with complications of Taxotere (although we weren't sure at the time if that's what it was),  Tried reduced dose after skipping a month of treatment, still went to hosp. with high fever and infections.  Done with Taxotere entirely but still on the oral chemo Xeloda.  I feel so helpless and hopeless this time around. Have lots of trouble doing even day to day things.  I have to go on for my kids but I'm still in a state of shock that I have stage IV cancer!  I feel like I'm living someone else's life which is totally different from the first time around.  I was so positive and upbeat about it all.  Now I cry several times a day and wonder how long I have and what will happen to my kids..I DO feel your pain and wish you as much peace and calm as much as possible!  I know we must have hope and try as hard as possible to get through..any new breakthrough can come at any time..it's just very, very hard.
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Christine63 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Christine63 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 1:15am
P.S. to last post, YES YOU DO HAVE A CHANCE!!! 
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Priory100 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Priory100 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 10:45am
Christine dont give up hope. I posted on this website because I could see that there were lots of women in the same boat as myself, striving to be here as long as they can. I understand the feelings of desolation.  Not that I am an expert by any means, but I am sure that there may be other treatment that would benefit you. You just have to try and stay strong if you can. I know, easier said than done. Thank you for replying to my post, and your encouraging words, they make a big difference. Have you discussed any other options with your onc? 
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liv View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote liv Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 5:29pm
christine (((hugs)))  go and get another opinion or another 3 opinions.
feel you have not been treated accordingly and leave you so stressed is a sign to find someone that will give you some encouragement.  how are you supposed to get the strength to fight when you are not given much hope.

i was the same after final treatment, i didnt listen to my then onc and moved to another and so much better and im so much more positive that i feel i have someone batting in my corner.

steve now i know why you didnt reply to my email..naughty man, empty that mailbox..you will be flooded with so many PM it will probably use its quota straight away.

christine dont give up - find someone you have faith in and can give you what you deserve.

xx
dx apr 2012
trip neg IBC 10cm.
17/24 nodes -
chemo(adriamycin doxorubicin Docetaxel Taxotere/Cyclophosphamide)
mast 13/09/12.
radiation - finished
current: xeloda - navalbine







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