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HrseLvr62 View Drop Down
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    Posted: May 28 2016 at 3:05pm
I know that this is a very sensitive subject and I don't mean to upset anyone -I just need some answers. If you have witnessed someone dying from lung mets and don't mind discussing it, please tell me exactly what happens. I have mets to lungs and bones - the onco has told me that I might have a year left to live. I really need to know exactly what I am facing. Thanks for your understanding.
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2016 at 7:58pm
I'm very sorry for your diagnosis, I wish I have some information for you. I am very troubled about mets to lungs because my wife has a metaplastic/squamous which has a propensity to go to lungs. I have tried to research how I can prepare for this outcome and maybe it sounds weird I should obsess about the possible eventuality future, as a caregiver, sometimes I ask myself that.

I read that cancer gets in the space between the lung and outside, in extreme cases, the doctors suture it together, sorry if my medical terminology is bad. This I think is after chemo fails to reduce tumors. Maybe someone can clarify.

 I have read some members here getting chemo for lung mets. I believe this is why they gave my wife carbo/gem. Maybe you have exhausted the platinum chemotherapies, and the bone mets, I have not much knowledge I am sorry I don't have more info for options for you.

My wife got a clear PET/CT, 2 weeks ago, and she tried to ask the oncologist everything she could. She asked about "Keytruda", he said it's been very effective vs Melanoma, but he isn't convinced, so far in it's effectiveness against lung cancer. I am not sure if this includes breast cancer metastasis to lungs.

He said he would refer my wife to "personalized medicine" at University of California San Diego/ where they have Moores Cancer Center, where she can be availed of any new clinical trials in the future. His name is Dr. Sinclair, Scripps La Jolla.


Edited by gordon15 - May 29 2016 at 8:18pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (1) Thanks(1)   Quote MikeW Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2016 at 11:16am
"My wife got a clear PET/CT, 2 weeks ago"

That is such good news. PET scans these days show very fine detail. My poor wife was fighting many other things besides two cancer types (ER+ and triple negative metaplastic). I know what you are going through. My mind often goes to that dark place; life without my dear wife. Late at night when I can't sleep I have a panic attack over it. I guess I always will, just take heart with the latest statistic of 5 year overall survival rate of 91%.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2016 at 11:38am
Thanks Mike. Hope your wife continues NED. I do realize the PET was only 3-4 months after surgery, and she was on Taxol after that, so I'm fully aware we have a long way to go , but the relief is huge nevertheless.  Metaplastic tnbc I think has a 3-yr curve, then goes down, as far as recurrence chances. 
She was told the PET/CT scan now shows down to 4mm lesions.
All the best to both of you.


Edited by gordon15 - May 30 2016 at 3:43pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2016 at 5:08pm
March 12, 2016

A team of investigators from Houston Methodist Research Institute may have transformed the treatment of metastatic triple negative breast cancer by creating the first drug to successfully eliminate lung metastases in mice. This landmark study appears today in Nature Biotechnology

http://www.news-medical.net/news/20160315/New-drug-could-transform-treatment-of-metastatic-triple-negative-breast-cancer.aspx


Edited by gordon15 - May 31 2016 at 5:12pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote caregiver20 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2016 at 7:52am
Horse Lover, 

I'm so sorry for your recent news. My wife also has mets to her lungs and we are dealing with similar fears (although we haven't yet actually asked for the prognosis - too scary). From our understanding, there are a whole range of ways that metastases can cause death, but the main issue is eventually having severely decreased lung capacity, due to the metastases, as well as pneumonia, or bleeding, which can ultimately cause the lungs to fail. That is one of the reasons that doctors use chemotherapy or radiation therapy to decrease the size or entirely get rid of the metastases, as it's actually these elements that can do the damage in the long term. 

Hope that helps. 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2016 at 8:12pm
Dear HorseLover,

I do hope you are doing well and found the answers you are looking for. I pray that you are not in any discomfort and that you have found some treatment that is working for you!

I noticed that all the responses here came from husbands of wives who have cancer. I had to comment on this because I am truly in awe of you gentlemen. You are a godsend to your wives, and I just wanted you all to know how much I admire you all. I wish I had that kind of support through my treatment and recovery. Bless you all.

Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister#2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2017 at 11:06am
I am new here! my little sister has been fighting stage 4 TNBC for the last 5 years. We have been through it all and back again. Just recently she was in a trial in Dallas using immunotherapy and the Fang vaccine but they did not inform us at the Mary Crowley center that the therapy did not go beyond the blood brain barrier so as a result (and we were more than half way through the trial) brain mets started to form again. She just got released from hospital 2 days ago and is home on oxygen. She is married to an amazing man with four kids ages 11 to 6 years old.
We are desperately looking for our next step. I feel like we have been hopping on rabbit trails with no solid answers. Other doctors have recommended vitamin therapy. Hit TNBC the natural way.
Any thoughts??   
Tiffini
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HrseLvr62 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HrseLvr62 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2017 at 8:54pm
there is new treatment for tnbc whose tumors are androgen receptors - I am on this treatment & the results have been dramatic. The med is a male hormone drug - ask your doctors to test for this
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister#2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2017 at 11:10pm
Are you stage??
Tiffini
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ARE YOU STAGE 4??
Tiffini
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister#2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2017 at 11:18pm
Has anyone out there been to Mexico cancer center in San Diego on the border of Tijuana Mexico? My sister is in stage 4 . WE ARE CONSIDERING THIS APPROACH COST 40,000.00 FOR 3 WEEKS.

ANY THOUGHTS?

Tiffini
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister#2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2017 at 11:21pm
My sister is in denial that she could die from this TNBC STAGE 4 disease because she had beat hotchkins LYMPHOMA 15 years before. EVERYTHING THAT I HAVE READ YOU CANNOT FIGHT IT WITH CONVENTIAL MEDS.

DO YOU AGREE?? PLEASE GIVE ME YOUR THOUGHTS
Tiffini
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2017 at 7:51am
Tiffini,

With TNBC, traditional medicine is your best choice for treating this disease.  It is too aggressive to think alternative medicine will stop it.  There have been others that pursued this path to great financial costs, but unfortunately I have not seen any success in the past 8 years I have been active on these message boards.  


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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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2017 at 4:25pm
I agree with Donna, don't go to Mexico!  and Vitamin "therapy" is probably not going to work, I'm not saying it can't help to boost the immune system, AFTER chemo, my wife takes  supplements, incl turmeric.

I'm not up-to-date on possible therapies for TNBC/brain mets, it sounds like your sister has good doctors, my wife is seeing doctors at UCSanDiego/Moores, I'm not sure if they have any news regarding their research, but you could inquire, any way we can help just ask.


Edited by gordon15 - Feb 21 2017 at 9:08am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister#2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2017 at 8:35pm
Thank you all so much for the wonderful information.
Tanya is taking a brain scan on Wednesday from there we find out if the mets are on the outside (which is what we are hoping for) or if the mets are on the inside of the brain which is what we DO NOT WANT.   last April she had 40 mets inside the brain barrier so she underwent a very intense 3 week session of radiation. So if the mets are inside we cannot do anymore radiation. I was reading about turmeric . Does anyone out there take turmeric/curcumin supplements? I was reading that it can go beyond the blood brain barrier. If so how many mg are you taking? The internet says cancer patients with mets should take no less then 8000 to 12000 mg of curcumin a day for it to have an effect.   
Tiffini
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister#2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2017 at 8:40pm
Chris is willing to take Tanya anywhere to get her better. after we get the results from her scans on Wednesday we will have a much clearer picture on what our next move is. Which clinic do you recommend for stage 4 triple negative Breast Cancer?   We live in San Antonio and she has been treated here at Start Center. Her doctor is almost using her as a guinea pig. "well we can try this chemo or that chemo."   Has anyone else experienced this type of situation??
Tiffini
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2017 at 8:30am
Oh Tiffini, I am so sorry for what your sister and your whole family have been through.  You said your sister has been fighting stage 4 TNBC for five years--has she been stage 4 that whole time?  If so, as heartbreakingly difficult as those years must have been, those are really amazing results from her treatment, because that is quite rare, so I would think that either she has wonderful doctors helping to get her the best treatment, or that she has a very specific type of TNBC that responds well to treatments.  Which treatments has she been on that kept that cancer at bay the longest?

I would think that if she has gone though all the traditional chemos that are used for TNBC, then clinical trials are the best bet.  I agree that I haven't actually heard of anyone with TNBC stage 4 where non-conventional/vitamin therapies worked for any period of time.  I take a curcumin pill daily and use fresh turmeric in my smoothies/food, but do not believe that it would have the power to reverse a serious case.  But I guess there's no harm asking her doctors what is the maximum amount that they think she can safely take.

I will pray that the mets turn out to be treatable.  If they can get her back to NED, maybe she can look into Dr Linda Vahdat's copper depletion treatment at Cornell Weill in NYC (but you have to be no evidence of disease)...they have seen results in preventing recurrence for NED cases, or some of the other vaccine/immunotherapy trials.

When you say that her doctor is using her as a guinea pig, "Well, we can try this chemo or that chemo", I think that's because there aren't that many 5 year stage 4 survivors, and so I think in these cases, they don't know how she'll respond, they can only try things.  It doesn't sound inappropriate to me, I think that's what happens.  I wouldn't assume there's something wrong with her doctors from that.

I will pray for your sister, she has been through so much.  Good luck and take care.

Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister#2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2017 at 9:21am
She started out stage 2 only for 6 months. Her cancer changed from her2 positive to triple negative stage 4and she has been stage 4 ever since. We are not treating her with only supplements her cancer is too aggressive. We find out more Wednesday after Brain scan what our best option will be. She believes she will beat this!! Her doctors are amazed that despite her mets she is still in good physical shape. she gets up every day and showers walks down stairs to eat although she is on oxygen at the moment and when her kids come home from school she sits with them at the kitchen table and helps them with homework.

My mom is a chef and we own a catering company for the last 19 years and she cooks cancer fighting foods for Tanya everyday plus she is taking heavy doses of vitamin D 50000 with magnesium.
2 doctors told us if her vitamin D3 was up to par it could possibly keep her cancer from spreading. NOT KILLING IT but keeping it from further mets.   TNBC Hates vitamin D3! Building her immune system back up is key and yes we found a concentrated curcumin 875 mg Tanya takes 2 every 2 hours with her alkaline water around the clock. it stays in the body up to 4 to 5 hours so it is constantly in her system. She drinks the Essiac tea but its bitter but my mom sweetens it with a drop of stevia. Stevia is a natural sweetner that Tanya can have.
She cant get all her veges in so we are juicing them in to little shot glasses
Chris is looking into New York as a possible Center to take her too as well. we are keeping all options open at this point. Oxygen therapy is another option as well. We WILL NEVER GIVE IN TO THIS DISEASE...EVER!!
It actually makes me feel better to engage with other on this forum. I wish I had done it sooner.

Our catering company is called Four Sisters CATERING and Tanya is Sister#4! (mom is chef Michele)

So we have to keep us all together we have MORE todo!



Tiffini
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister#2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2017 at 9:33am
Tulips
you must add black pepper to your turmeric for it to absorb in the body 100%. OTHER WISE IF YOU DONT IT WILL ONLY ABSORB 1%.
Tanya is depleted in C as well at the moment but she has to take a test to see if her body can tolerate C otherwise if she cant C can be very dangerous. She will test for that today. She is also low on selenium.
She was not able to take supplements on her last trial but that is over now. She felt great for 6 months on the last trial in Dallas but that immunotherapy did not protect the brain only from the neck down.(they never told us and she was off the turmeric) her doctors believe her new mets are coming from the brain but we will find out for sure after Wednesday.      
Tiffini
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