Triple Negative Stage IV
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Glad this topic came up. I was just diagnosed with brain mets today. Get my treatment plan tomorrow - probably WBR. I am so scared.
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Cat,
Sorry about the brain mets. Carolben and Keldel have the same thing going on and I think they are both getting the WBR. What were your symptoms?
I was thinking about you! It might be because I've had progression and my tumor area might be big enough to be biopsied and sent to Caris or Foundation One and I thought about you first because I heard that you had it done. Do you think the genomic profiling helped?
What happened to the trial you were in? Are you still?
Big hugs for you.
Brenda
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Hi Smiley47,
I was ln Taxol for about 16 months before progression. My onc then switched me to Navelbine, which I tolerated well for 2.5 years. It brought ne to NED. I have been NED and out of treatment for the past 12 months.
Lotusblossom
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Thanks for all the advice.Today, i got all measured, a mask made and started the first treatment. He said I might start seeing improvement by tomorrow. That would be great since I am having trouble walking and dressing. I will go every day for at least 10 treatments.
My first symptom was weak left leg and knee buckling. The next day, my left arm became weak and hard to lift.
Yes, I like the gnome testing I had done as it gives me more treatment options if regular ones stop working.
The clinical trial stopped because the felt the drug they were testing wasn't doing the job expected. It was only Phase II.
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Cat, sorry about the brain mets, I don't know much about it but there seem to be many ladies here who are doing quite well.
On the lung/pleural mets topic - I just had my fourth chemo (carboplatin/ gemzar). It looks like it is working because there is almost no fluid in my lungs. The surgeon said he might remove the drain tube in 2 weeks yaay!
I am hoping this will bring some encouragement to others that might struggle with the same issue!
Big hugs to all!
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Hi Cat
Glad they got you started so quick. I know I felt improvement after one or two treatments (and they have me on Dexamethasone). For me part of the fear was not knowing much about what to expect from WBR. My oncologist says its very effective. I had 10 treatments in December. My MRI shows about 30% or more shrinkage so far and apparently it can keep shrinking them for months. I am still fatigued, have short term memory and some concentration issues and am a little unsteady. I take a cane with me when I go out anywhere. I am not driving as I dont feel it would be safe.
I wish you good luck with your treatment. There is a brain mets thread you may want to check out. I have done some posts there too.
Hang in there. You can do this.
Kelly
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Hi Ladies,
I have popped on this board before and I wanted to check to see how things are going for everyone. I am in the process of retiring early and wanted to know if any of you could help me with any info or details if you have done this as well. I am currently working full time and have been since my dx back in 8/13. I worked from home the 6 months on chemo and came back to work 5 months ago while I am still on the study and on my targeted therapy of Avastin (every 2 weeks) and a pill, Terceva/Erlotinib daily. So far have been on this for 9 months and have done very well. My last CT scan was still showing shrinkage on the 2 nodules left on the lung. However, they told me there is a small area in a lymph node behind my stomach that is of concern so they want me to have a PET scan to be sure. So far I am showing 85% shrinkage of the nodules so that is awesome and my tumor markers are normal. I am certainly praying that this is nothing and just a weird thing showing up. They said the saw it on the last CT a couple of months ago and this time it showed some growth.
So this has made me start considering to apply for social security disabiltiy and I hear that some diseases are pretty automatic and will be allowed so that would be awesome. Just wanted to know if anyone has gone this route? Of course my biggest concern is medical and will I be able to continue my treatment at the center I am going too now in Seattle once I am on medicare. I checked my 401k and I believe I am reading it correctly when it states that I can apply for my retirement as a disability with a letter from my physician. So that was hopeful. I would be on COBRA for the first 18 months which will be good.
So anything you can offer or share would be appreciated. I will be checking this thread more often. I am on a different thread for Christian women and there are only a couple of gals with TNBC but they are not mets. It is not the same when we share things and so I thought I would pop in here again. Hope to hear from you all for info and encouragement.
Thank you, Lucy
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Spiritblessing, I am glad you stopped by! This seems to be sometimes a very quiet place. I guess each of us have found some other little groups and we just stop by here every now and then. I do check it daily but postings are not that frequent
I'm sorry I don't know anything about disability, but I'll very very happy if you want to share what you find. I'm 46 but I was born in Europe and I only came to the States 17 years ago. I've been constantly employed since then, but it's been increasingly hard with stage 4 especially with being in and out of hospital. So I thought if I leave my workplace I won't have an income, but it's good to know there are options.
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Spirit - I went on SS disability last year and it was easy and fast. The office did most of the work. Stage IV is fast-tracked after a note from the doc. I was off work for a year which might be a requirement. I got backpay for the year which was nice.
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Spirit, in addition to what Cat said I found this message on another board
Jan 27, 2015 06:18PM Sarah0915 wrote:
Breast cancer with metastisis to a distant site such as bone, brain, or liver automatically qualifies for Social Security Disability (SSDI). It qualifies as a "Compassionate Allowance" case which is fast tracked. That is supposed to be picked up from the diagnosis in the application, but I called and talked to a representative at the local office to make sure my application was flagged for speedy processing. There is still a 5 month waiting period and a 2 year waiting period for Medicare, no exceptions. You really don't want to hear my opinions on that
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I'm a retired public school teacher. I worked an equivalent of 8 quarters before my teaching career began. I need two more quarters to qualify for social security benefits. Does anyone know what 2 quarters mean in terms of how long do I have to work to earn that?
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Evening Ladies,
Lbgal - thanks for the welcome. Do you recommend any other boards? I really like the one I am on as we are all way involved and we all posts daily for the most part. Huge support group and wonderful ladies. I really feel a genuine closeness and care and concern. Sounds like your employer is supportive. I have a great employer as well but I am getting tired lot more these days and fatigue is pretty daily now. I think it is just time to take this next step and spend the last years enjoying some of my time and not just working. Also, thanks for that post from another board. It doesn't state the lung as part of the mets so I was wondering if it was an oversight. I have mets to my lung. I don't understand at all why there is a 2 year waiting period for medicare, that makes no sense at all. The whole purpose is o get medical coverage during this time of SS disability. So what about obamacare? They should have changed this policy during this major change on "everyone should have medical", right?
Cat - I am glad your experience was fast with ss security, that is promising I figured I would need a letter from my MO. I don't think you need to wait a year to be off work. I was told you can actually work but can't collect/earn more than $1,090.00 per month. Which is great but I have to figure out what I need to do and how to go about it all. I also found out that my 401k is open to me as well with a letter from my MO so that will be nice too. I will have COBRA as an option as well for 18 months at least, then obamacare for the remaining 6 months before medicare would kick in. I have some options with my employer hopefully so that will be good and my hope will be to talk with them in the next couple of weeks. God willing...
Well thank you so much for your input and advise. I will share what I can and maybe help someone out here. Thanks again...have a restful sleep...Lucy
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Hi Lucy,
I haven't been on these boards for several months, and have been thinking about you and our text conversations. Decided to get back on and here you are! I am in the middle of applying for SSDI, and to echo the other ladies, a stage IV diagnosis is pretty much an automatic approval that is pushed through in a matter of weeks instead of months (after they get your medical records). I am a few years younger than you, so don't know about the medicare stuff. I was also told that your benefits would start 5 months after your last day of work, and you will retroactively receive benefits if you have been off work longer than that. I went out on disability May 3rd, so will be paid for November forward. However, I have been receiving LTD benefits during this time, so I think I have to hand that check over to Liberty Mutual to recompensate them for what they have been paying me.
I am glad to hear that the clinical trial we talked about several months ago seems to have been good for you. I have had gamma knife for mets to the brain that worked on the 9 originals, but two new ones have shown up so we are taking a look at those at the end of March. I have a CT on Monday with results on Wednesday for the lungs. Fingers crossed on those; they seem to still be growing slowly. I'll be keeping you in my thoughts and prayers.
Aimee
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Hi Lotusblossom:
Thanks for your input on the chemo's that have worked for you. I have been really busy with scans and dr appointments for the the brain met found; or should I say possible brain met. I go today for MRI but worried they will not be able to get the needle in for the contrast due to no veins in arm, I usually have chemo nurses do it because its so difficult but hospital will not be able to do that where the MRI is. It might be a wasted visit and I dont feel well with all the stress and progression of the cancer, I'm tired. How were the SE's for you on Navelbine?
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hi Spirit
I think the 2 y waiting period in that post referred to other people. Stage 4 is fast tracked as Aimee said. And lung is included too. Another board that I check often is the INSOMNIACS, they are a diverse fun group.
Btw - has anyone watched the last episode of VICE? These documentary is about new therapies for cancer using modified viruses and the spectacular results. Gives us all hope! Anybody has more info about where they are with the breast cancer vaccine?
To everybody- I don't know anything about bone, liver or brain mets. But if anybody has pleural and pericardial fluid, I have experience with that (unfortunately).
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The Vice episode about cancer cures was very riveting, to say the least. It bodes very well for blood cancers. Maybe a cure for solid tumors is not that far behind?!
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Hi Aimee I'm so excited to hear from you. I have wanted to call you but wasn't sure. I think you might be able to answer some questions. I will text you this week to see what day would be good to call. Sounds like you're hanging in there. How is DH?
I just need to know when to decide all of this to just make it happen. But it is not easy as I really do love working and have been so blessed to have the employer I do. I know I can work and make 1090.00 per month while I apply for SSDI so would like to do that for a while and still get my medical through the company. Would like to shoot for August as my last month so just need to plan for it.
The more I see that they fast tract the stage IV dx that sure helps. I am so ready to set a date and make it happen. Thank you all for your input.
So what is the statement about the vaccine? I heard there was a vaccine that the mayo clinic was saying was a new exciting trial coming up. Is that what you are referring too?
Thank you ladies and have a great week. Will check back tomorrow. Luc
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Hi everyone I am knew to the site. I was doing a search on triple negative breast cancer when I came across this site. Not so sure what to say here but I will introduce myself as one who has been diagnosed with triple negative breast cancer. I have been battling this sense July 2013 which then was stage 3. I went through 12 cycles of chemo than radiation. But a week and a half after my chemo treatments were finished I found a lump in my armpit. They did a pet scan which found a lump in armpit (lymph node), one under my collar bone (which was there from the very first pet scan) and two lymph nodes under my breast bone. So they did radiation than another pet scan. At that time the lymph nodes under my breast bone was gone and the other two had shrunk and showed very low activity. So they decided to do chemo again in hopes to kill them off. Well when that round of chemo was done a week later I found a lump near my collar bone. The doctor felt I needed another pet scan in which this time it has now spread to my lungs (stage iv). I am just so freaked out. I am not sure how to react. My chemo doctor seems to act as if there really is no hope. There is no experimental treatments right now for me so the only thing to do is put me back on strong chemo, (oh no here we go again). My hair was just growing back, I was feeling stronger and my hope level was so high, only to be knocked backwards again. I feel so alone, so scared!
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Hello Tbryer, welcome to the club, the club no one wants to join. You will find that we are never alone here. And you will meet the most amazing ladies ever. I was wondering what chemo you have had, and what is next. You can edit your profile to add the info so we can all address your questions and concerns with helpful responses.
There are many other threads that may interest you as well. I post on numerous threads, and many other ladies do as well. We always go forward, and you will too. I am Stage IV, but that is only a number to me. And there ain't no 5! So I am kicking butt to do whatever it takes. So what can we do to help you?
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Tbryer - welcome. I am new here as well. I know it is a tough dx we have all been given. I was dx 08/13 so we have been on the journey almost the same time. I am stage IV as well from the very beginning. Unfortunately my initial team overlooked some nodules that were on my lung and so they didn't even look into them. I had my lumpectomy and my surgeon the onc and radiologist all said not to worry about them and they just wanted to focus on the lump in Breast and to remove it. Had surgery after about 6 weeks which freaked me out that it took so long. After surgery I just didnt feel right and so I went for a second opinion. Found that they said absolutely have to check nodules so had a PET and of course cancer as well. So stayed with my new team who are 2hours away but totally worth it.
I have been on a study trial since 11/25/13 which I did chemo weekly for 6 months and now am on a targeted therapy of a chemo drug every two weeks and a daily pill. So far I went from 5 nodules to 2 and 2 lymph nodes in chest to none. It's been a year and 4 months since started treatment and I have done pretty good actually and have worked most the time. I worked from home during the hard chemo but went back to work in May a few days a week and in July I was full time again except for every other Monday when I go for treatment.
As part of the trial I have to have a CT scan every 8 weeks. My last one I had three weeks ago showed a lymph node behind my stomach that they want to look at so I have a PET scan on the 9th.
I am new to this board but I have been on another board since my initial dx and the ladies there have been amazing and they are family to me. I have a strong Christian faith and this board is for women who are Christian and want to get and give prayer and support in their faith.
It's easy to be fearful in our journeys but stay focused and positive. If you like you are welcome to PM me anytime. I am also opened to phone calls and texting for support so let me know.
I in the early process of checking into applying for social security disability so hoping it goes well and just see what my options are.
Beachbum what other boards would be good to check out?
Have a blessed evening and restful sleep...Lucy.
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Welcome SpiritBlessing, look through all of the active topics and see what will interest you. You can read through them, and join in where you feel comfortable. I have met the most amazing ladies here. They are so helpful and kind. It is nice to offer experience to the newbies along the way. I hope you enjoy the threads as much as I do. Cheryl
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i appreciate everyones response and I am very curious as to what this experimental treatment you are going through, spiritblessings I believe was your name? Also ty for your support.
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As i said before I am still trying to figure out how this message board works lol. As for the chemo medicines I have done so far i am not sure. I told doctor my last visit that I wanted a print out of everything but I forgot to re mention it before I left. So needless to say I walked out without them. But I noticed how you all have everything listed at that bottoms of your pages so I will be updating all mine here soon.
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Welcome Spiritblessing and Welcome Tbryer, this is a great board and you will find lots of support here as I can tell you I have - whether things are going well or not.
I have stayed out of the social security discussion as I am in Canada. I have also been enjoying a visit with Stable Boy. My CT result last week shows every thing is small, really small in my neck or stable since last scan. My brain MRI shows tumours shrunk by 1/2 or more or are gone. Apparently the whole brain radiation can continue to shrink them for awhile after treatment stops so I may see more reduction. My oncologist seemed really sincerely happy about the results. Ofcourse I am too but always a little cautious as to how long this will last. But hey I try to take it one day at a time and live the best day that I can and enjoy it with my husband and little dog.
I wish all of you find the sunshine in each day even if its raining.
(((HUGS)))
Kelly
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Hi tbryer and welcome!
We understand you are scared. The met diagnosis is pretty scary, and some doctors who look at older research might have a less optimistic attitude. But the truth is that things have changed a lot in terms of treatment and survival of metastatic TNBC. I don't have lung mets, my mets were in the pleura (the membrane around the lungs) so there was pleural fluid accumulation around the lungs and heart. They drained it and then I started chemo which reduced fluid production to very little so I'm doing fine and continuing the chemo.
I assume your original chemo treatment (standard) was adriamycin, citoxan and then taxol. The next step is usually either xeloda or gemzar/carboplatin (I'm on the later). I was on xeloda before my mets diagnosis.
It's kind of weird that your doc said there is no experimental treatment for you and 'it's back to chemo'. Besides the fact that there is always an experimental treatment (unless you exhausted all the clinical trials out there) 'back to chemo' is in fact the standard approach. They will use first the drugs that they know will work in most patients, the approved and tried ones before the experimental ones.
So don't lose hope. You are just starting a journey, and it will have some ups and some downs, but we are here to encourage each other and to share information that could help.
Btw - if you don't like your MO - change him/her. Their job is not only to treat you, but also to guide and help you through this journey (psychologically). So if needed, find a better one with whom you communicate better and feel great talking with them!
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adnerb - I sure hope the solid tumors are next for the viral therapy! But if I'm not mistaken the first patient in the VICE episode had neuroglioblastoma, which is a solid brain tumor, so it's getting there!
Cat- how is your treatment going? How are you feeling?
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Tbryer -I concur that you should get a second opinion, and maybe a third until you find one with good rapore and that you feel comfortable.
My body scan showed no progression anywhere! Yeah! I finish my WBR wih 3 more treatments. I feel almost back to normal except all the steroids. Then, the following week, I will go back on Cisplatin while my MO looks into a new cutting-edge trial at Vanderbilt that is testing stimulated T-cells "eating up" the cancer cells. I have seen research on this and it looks very promising.
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Wow, Cat, are the simulated T cells anything like the modified HIV cells that were shown on the VICE program we have been talking about?
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Brenda,
I don't know anything about the VICE program, so can't say.
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Great news Cat! I am so excited for you. I hear you about the steriods.
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