Triple Negative Stage IV
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Hi everyone! This is my first post in the forum and I'm glad to find this thread.
I'm from Singapore, 31years old and am a mother of 2, ages 6&8.
I found a lump on my right breast last April, went to check and got diagnosed with bc. I initially went to a Govt hospital and I find it difficult to communicate with the doctor so I went to a private hospital to seek a 2nd opinion.
I received more information then, I was stage 2b. Went for surgery in May 2014 for right breast mastectomy and reconstruction (LP flap + implant) as well as a breast reduction on my left. I have 5 drains and it was really irritating as I couldn't sleep on my side. Results came back after the analysis of the lump as grade 3, triple negative. Got a chemo port inserted as I have spidery veins and don't appreciate being poke several times just to access my veins. It was the smartest move I have made.
In September 2014, I discovered another lump near the same spot of my initial lump. As I was undergoing chemo, my Doctors only did a biopsy in Oct, and yes it's still cancer. Got a PET scan done then went for a day op to remove the lump and surrounding skin. My oncologist did not recommend anymore chemo or rads for me as she said chemo is more for prevention and since my cancer came back so soon, it's better to watch and wait. Got another PET scan done in Dec and it seems all clear. I was really relieved then and went back to work.
In Feb, I felt another lump also near the same area and was immediately concerned. Told my oncologist and she scheduled me for ultrasound, mammogram & CT scan just this past Sat. Yesterday, she received the results and told me my cancer has spread to my lungs and this is considered stage 4. Started googling and trying not to cry when I see the prognosis online.My oncologist immediately put me on Hallaven to see if it helps and schedule me for another CT scan in 6wks. She explained that she'll keep switching drugs for me til I find a suitable drug to stabilise and possibly shrink the tumors.
I'm still in shock as I feel that I'm still young and I have absolutely no family history (My BRCA results were negative). I have 2 young kids and my Husband to take care of so I can't believe this is happening to me. Reading stories of 10yrs+ survivors helps but I'm still feeling uncertain about the future.
I guess this is a battle I have to fight, even to my last breath and I will do anything to stay alive.
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Texas Rose
Wow, looks like you had a great time. Thanks for sharing the fact that we can be Stage !V and still
enjoy life. You are an inspiration.
Rosieo
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Gwen,
I am sorry to read your story, you've been through a lot. Having a hopeful outlook will be very necessary as you go forward. There are LOTS of stage IV people who are living with their disease for many many years. This thread is full of great people who will surely offer you advice and encouragement.
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Gwen, you have definitely come to the right spot for support and encouragement. I too was diagnosed stage IV with mets to my lungs in May 2015. My initial BC was diagnosed as 3A in 2013.
I am still working full time (4/10 hour days) and living life to the fullest. My DH and I just returned from a 4 day trip to Las Vegas. You can do that too! Do not read the stuff on the internet!!! Everyone is different and some of the information out there is so outdated! There are so many options available....if one doesn't work you go on to the next! A positive attitude goes along way. Yes...we all have our pitty parties and you are definitely allowed to have them. Stay strong! We are here for you!!
Julie
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Hi Mamiya & Texasrose53
Thanks for the encouragement! I'm definitely not giving up and as my oncologist says, a positive mindset helps a lot as well as the support of my family and friends. I feel extremely blessed already. I decided not to read too much into prognosis and stages as they are basically useless & discouraging to me. I'll rather read stories of strong women and men who are living with mets and be inspired by them. I guess for now I'll just take it day by day and see how it goes.
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wow, that's great! And I love a good splurge on fine dining once in awhile! Dh and I go to Santa Barbara about three times a year. It's our little getaway place, usually a quick overnight stay but just so restful and beautiful. I've always loved the beach. And it has amazing restaurants
Thanks for sharing the photos and yes, you look wonderful!
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Hello, Gwen! I read your post a few days ago and have been thinking of you since but hadn't the chance to reply til now. You reminded me so much of myself with the "started googling" comment. I think we all know what it says out there and it's not so great. I got my stage 4 dx while on vacation in Florida last July. My onc sent me to the ER for scans. I left that ER visit knowing cancer was in my liver and that it was extensive but not knowing that metastatic bc was without cure. I surely cried quite a bit as Google and I are figuring this out while sitting in the bathroom of a beach house, my husband sawing logs on the other side of the door. It was a long drive home with my mind full of dark thoughts and the van full of my three young girls. I have learned a lot since then. I knew right away I wanted to live with the joy and positive mindset so many express in these forums but it took me a while to really get there. And, there are still bumps but I can tell you with complete honesty, all in all, these past 7 months have been some of the best of my life. It's amazing what you can choose to be. It's quite a gift this perspective we have. We're here for you. No matter how you're feeling, there is someone here who can relate.
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Hi kaayborg
Yes, Google is an extremely bad companion, especially when searching for the word "prognosis". The percentages of survival basically scared the shit out of me and I just feel so depressed and lost when I read it. I felt even worse when my oncologist told me that I'll be on chemo for the rest of my life as it's the only way to control and stop the growth and spread.
Well, just to share, I have seen more encouraging news on FB recently; 1) In Cuba, there is a developing cure for lung cancer and it's only $1 per shot! Apparently US is getting approval to bring it in. 2) Scientists have developed an ingenious way to trick cancer cells into eating drugs, destroying it from inside out and it only takes about 15hrs for the cancer cells to die! The best thing is it doesn't affect healthy cells at all. They call it a Trojan horse effect. According to the video, it has not entered clinical trials though. Just search on YouTube to get more info.
These 2 news really excites me as I feel it gives me so much hope. There's a chance we could get cured and probably our future generations may even treat cancer as a common flu in future. I hope all of us could live to see that day.
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Hi Gwen, I'm glad I saw your post, since I don't often read the TNBC posts and you reminded me that upcoming options for TNBC don't seem to get much discussion on this blog- for example there was a paper in Cell last fall reporting that CDK7 inhibitors strongly and selectively inhibit TNBC. This would be a targeted therapy, similar to Ibrance (which is a CDK4/6 inhibitor), and clinical trials are expected to start sometime soon through the start-up Syros Pharmaceuticals in Boston. While that may take awhile to get going, existing trials already are trying to combine chemotherapy with checkpoint inhibitors (immunotherapy) for TNBC, and there is much anticipation for ongoing early trials at Stanford and from Celgene using anti-CD47 antibodies, with additional trials planned to open late this year or in 2017 that will combine anti-CD47 antibodies with checkpoint inhibitors for many types of cancers. So indeed there is much hope on the horizon,its hard to keep up with all that is happening.
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Hi Brave Ladies
I am amazed at your strength and courage
As a physician I want to emphasize that not only is there hope but as the saying goes "when there is life there is hope"
And I am not in a dream world , and my specialty is not Breast cancer and when we got the news last August and searched the web we thought all hope was lost
We chose the clinical trial because we knew that we could always revert back to the adriamycins or gemzar or xelota or platinum and on and on
Having said that , triple negative may soon no longer be without receptors in that many of these tumors may be very sensitive to immunotherapy
Cast in point now melanomas lymphoma myelin as bladder and kidney cancers etc
My wife scans have dramatically improved and everyone is amazed
We suspect highly she is getting the anti pdl1
I only hope they soon open the study and if this drug works allow everyone to get it
So keep fighting and feel free to ask any questions you might have
So I agree with the last two posts , and really expect new treatments very soon
I only hope the FDA fast tracks some of these drugs if they show great promise and minimal side effects
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These have all been great posts!! I believe there is hope on the horizon for us! But until it comes I will continue to fight and live life to the fullest!
We can do this!!
Julie
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Hi all dear ladies and gentlemen,
There is always hope for us. I read up a lot on new researches and studies focusing on TNBC, thus we're definitely not left out. For myself, I will have a prep talk to myself whenever I'm feeling down.
I would also like to share that I have read on some miracle "cures", like the maple sodium bicarbonate and having an alkaline diet etc, which can be really dangerous. In the end it's all about eating healthily and getting regular exercise
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Gwen,
If there really was a miracle cure none of us would be *here* so good that you are reading up and doing some smart thinking about that sort of thing!
There are sooooooo many promising new developments for triple negative right now though, in the world of medicine, I think we are fortunate to be dealing with this now as opposed to 10 years ago (of course we are not fortunate to be dealing with it, you know what I mean!)
Homehelp,
Could you share with us, please, what type of physician are you? And I am curious about your wife, in the "diagnosis" portion of your signature it says "stage 1" is that a typo? I am also wondering if you can tell us what clinical trial she is in?
Thanks!
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I am a urologist
My wife had stage 1.9 cm lesion TN in 2014
She did well post op in 2014 Negative nodes
Last August found to have a localized lesion left lobe of the liver biopsied.....
again TN
The study is abraxane plus placebo or anti pdl1
It was just increased to 750 patients around the world
Also added increase percentages of TN with liver metastasis
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hi all. I haven't checked in for a while.
It's good to hear all this encouraging information while I'm having a hard time staying positive. My clinical trial has gotten off to a rocky start. Bad side effects from the drugs -- a debilitating headache sent me to ER for CT and MRI scans. At least no bleeding in the brain, just a 'usual' headache SE. Then a few days later I developed a rash all over my body --- legs, arms, face and back which sent me back to ER. And nothing the docs give me seems to produce any relief from the ache in my chest. (Presumably caused by tumors in lymph nodes I have IBC). And now dermatologist thinks I might have shingles!! So I'm off the drugs for the trial until all this clears up.
Trying to stay hopeful. Don't know how you ladies stay so strong. Need to work on mindset and be grateful for all the advantages I have. With luck I can stay out of the hospital for a whole week!
Anna
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Oh, Anna! I am so sorry you are going through all of this! Hang in there and keep us posted on how you are feeling. I'll be thinking of you.
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Homehelp,
Thanks for the reply! And I am so glad to hear that your wife is doing so well on her trial!
And, Anna,
I am sorry to hear that you are having rough time on yours. I hope you can get healthy and get back on it!
I go in for treatment #2 on my trial Tuesday. I considered going to the ER today but I am actually glad I waited it out, I was super dizzy and nauseated and vomited. I have been trying to wean myself off of a pretty small daily dose of ativan (I am really drug sensitive) AND I had a mega over caffeinated starbucks drink this morning so with a few hours and some rehydration I am feeling much better. I have been having horrible tumor and skin mets pain and a return to the lymphedema that was part of how I originally figured out my disease "way back" in June 2015. I am hoping this is pseudo progression, which is a possibility on immunotherapy.
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Hi Anna and Mamiya
So sorry to hear from you both about your conditions. Praying hard for you to pull through this and be healthy to receive your treatments. Please do keep us posted on how you are doing. Lotsa hugs~
I just did my 2nd chemo (Halaven) last Mon. It's great that it's a quick session, just need to wait an hr for my blood test results, and the actual chemo only takes about 10-15mins or so. So far I don't have much side effects, just the usual tiredness and a little bit of neuropathy. The lump on my breast seems to have shrink a little but my oncologist wasn't really sure what it is as its really small when seen on the ultrasound. She has also sent my tumor that was extracted last October to Australia for analysis but it will take awhile for the results.
I mentioned to her on my "research" & she was pretty impressed. She shared with me that she just joined in a convention last week and there were many discussion on breast cancer treatments. She explained that although immunotherapy is a raging topic but they will still have a few years to go as more research and clinical trials need to be done before they can establish this form of treatment for breast cancer. She said that breast cancer is very tricky as there are usually lesser mutations so sometimes the immune system is unable to identify it in order to kill it. Same goes for the Trojan horse virus.
It may seem discouraging but she assured me that our current medical world is very advanced and they will definitely have a breakthrough someday, just need to give them some time. So I feel this gives me a lot of hope and I'm sure there's a chance to be cured someday. Til then, we need to bear with the treatments and just stay positive
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hello,
I wanted to update you on my dear friend who was first told it was stage 4, then stage 3... Was just reconfirmed at Stage 4 with 5 tumors in her lungs. She's getting set up with a port next week. She's still very ambivalent about chemo and radiation since she's quite a holistic type person and doesn't do well with meds. I share with her many thoughts and recommendations that I learn here. She was told that even with chemo, she's looking at 2 to 3 years to live. I told her not to listen to that, that doctors have to tell her a timeframe but don't listen to it. I don't any details about her treatment. She will Have chemo first, then surgery. I will be putting a chemo bag together for her as recommended on another thread.
Thanks for letting me share here...bless you all..
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Blessedwith...so sorry to hear about your friend! You are right....nobody knows how long you have! So many have been given life expectancy time frames and lived way beyond! She is lucky to have you as a friend.
A few of my mets are also in my lungs (along with 1 node and sternum) and they are currently responding to the chemo I am on. Everyone is different.....if one chemo doesn't work there are others to try not to mention all the trials that are now available. There is a "mets to lungs" discussion thread that you might want to join.
You mentioned surgery....what are they going to do surgery on? What size are the tumors in her lungs?
You are a good friend!! Prayers for your friend.
Julie
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actually,,I'm not sure about the surgery. I asked about that yesterday and she was in a cloud...she was just getting ready to have her appointment and she says that lately, all her appointments are just a blur. Her husband takes notes and asks questions then they talk later at home. I know she's looking very tired and feeling the strain. The dr called her Thursday and wanted her port done Friday (yesterday) so the chemo could start on Monday. She and her husband are really feeling rushed and not totally secure with it. My thought is that the cancer is moving fast and need to start treatment ASAP. But I didn't tell her that. She still wants a second opinion. I thought she had gotten one but she hadn't.
Initially she had said surgery on the tumors in her breast. But now I'm not sure. And I don't know the size of the tumors in her lungs. I will try to find out.
Yesterday before she had her port put in, we got our nails done. She said I don't care but I'm going to get my nails done! So we went. It was a good way to get her out of the house but we talked chemo and cancer the whole time.
I will go to the mets to lungs forum. Thanks for the tip.
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Dear blessedwith, I'm so sorry to hear about your friend...you are such a good friend indeed! I do understand how your friend feels at this moment since I believe all of us has been through that; the shock of hearing the news, going for surgeries & treatments and basically just feeling like our life has crumbled before us. The prognosis the Doctors gave are just an estimation, nobody can actually predict how long we get to live. I have read stories of 10yrs+ survivors with mets to basically everywhere in their bodies and these women are still living.
The port is really good to have, especially if she has thin veins like mine. Just request to get everything done through the port, 1 jab and you are good to go! I met with a patient who did not have a port and she complains about how many times the Doctors have to jab her everytime and that her veins got damaged from all the chemo.
I too have Mets to my lungs and am also going for chemo at this moment. Apart from a slight change in my diet & schedules and trying to get more exercise, my lifestyle basically did not change. My doctor did not gave me a prognosis as she agrees it's just a figure and they will try everything they can to control the growth. By all means, your friend can get a second opinion if she wants, if she needs the assurance on the recommended treatments.
It's great to go for pampering sessions if it relaxes her, but I would try to talk more about treatment options, new researches, survivor stories or even planning for happy stuff like parties and vacations when she gets a break. It helps me to change my outlook and encourage me to go for the next session. My family was my greatest motivation and I plan to be in their life for a very long time.
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Thanks Gwen, good advice. She doesnt have a start date for chemo but shes leery about the drs urging her to do some clinicsl trials. I told her from what ive read here, thats pretty common. She in turn is distrustful. Ive explained that chemo,is a means to an end, to eradicate as much cancer from her body as possible. And i tell her that very thing....that these time frames are just guides amd so often people,live over and behind those timelines. But she feels strongly that chemo does more harm than good. So its a constant conversation.
Im so happy to knpw you and so many others here are doing well and share the ups and downs and the reslities. And i do pass that along to her. I tell her of the coursgeous women who change their lifestyle, eat better and exercise and do what is necessary to beat this. I fear that shes delaying treatment finds excuses for postponing...and in the meantime, her cancer just grows.
I will have to learn more about options, Gwen, because even right now, i dont know what plan is in place for her. She seems hesitant to tell me.
Also odd...
She has not seen any of her images. She went to a chemo class and the nurse was speechless when she found out my friend hadnt seen any of her images. Is this common?0 -
My doctor doesn't show me images unless I ask, which I did once but truthfully, it didn't change my understanding of things much. Looks like a lot of black and white and is hard to notice any really changes at this point. Now I just focus on the measurements of my large tumors and actually keep a sketch book of their shrinking size because I love that picture! As for chemo, I think largely its reputation is worse than reality. Maybe it really is horrid for a few but for most of us, we go on living great lives because of it. I"m not at all scared of chemo, only of the time it stops working its magic for me. I would love to talk with your friend. I'd love to send her a letter of encouragement if I could.
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Kaayborg, youre so sweet to offer writing to her. Thats so thoughtful. I have talked to her at length about chemo and that it may not even have the effects on her that she thinks, and how its temporary. But anyway...at least shes agreed to undergo the tx.
I did look up clinical trials and found some good info on current trials that have successful positive results. I passed on the info to her and she appreciated it alot. I asked her if she was androgen receptive and she didnt know but thinks she is. The hold up now is getting all her reports and scans together before starting tx. It seems to be taking forver. Im more impatient than she is...0 -
Blessedwith6....it does seem forever when you are just beginning your journey. But then once it gets going and you have a routine established it seems go by fast. The part we forget with our Dr's/ONC's is they have many patients. Tell her to hang in there it will get a little easier.
Prayers for your friend!! You are doing a great job supporting her!!
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Checking in on the Triple Negative Stage IV crew.....hope everything is good!
Today is a great day! I share another birthday with my daughter and granddaughter! Yes...we all three have the same birthday! A very special blessing.
I have to share a picture of my beautiful girls.
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has anyone had SBRT done for bone mets? Any success? My mother was just diagnosed with a single bone met to her T1 in her spine. I don't know the exact measurement of it but they have said "it's small" so they are going to go ahead with the SBRT. She's has several CT's and MRI's and the doctors have yet to find any other cancer in her body detectable by those scans. She is scheduled for a bone scan on Friday so I am praying nothing else pops up.
My Mom was at 19 years remission and now we are in this living hell again after all this time. She's been healthy all these years so this news is devastating and so hard to digest. She is having the SBRT treatments beginning next week with a goal of three sessions but potentially up to five. She'll then follow with Taxol, weekly, for 2-3 months.
Just looking for any thoughts on the stereotactic body radiation treatments. Reading these boards gives ,e hope that her life can feel "normal" and not completely surrounded by this awful disease. She has so much to live for and we want her as long as we can have her.
Thanks,
CM
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Texas
What a beautiful daughter and grand daughter . And how special that all three of you have the same birthday!!How great is that. It sure beats having to remember the dates!!!! :-)
HAPPY BIRTHDAY TO YOU AND YOUR DAUGHTER AND YOUR GRAND DAUGHTER.
i hope you will be able to spend many more with them
Rosieo
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