Hi this is Harry, my sister, 34,had a tnbc in her right breast last year and she was treated for that(chemo and radio) and after one month if the treatment getting over she is diagnosed with the other breast as tnbc. Her chemotherapy has already been started straightaway, since one and a half months( carboplatin is given every week and abraxin is added when her liver counts don't come very high. We got the generic tests done braca1/2 on blood and other Gene tests also, just came to know there is no mutation so it's a negative report. Has anyone gone through this situation or a similar one and if yes then what further line of action or tests were done please?? I seem to be heading a dead end as no reports have favoured us in any was.
Hi Harry, I'm sorry to hear about your sister. I haven't gone through this myself, but have you checked the Triple Negative Breast Cancer Foundation website (link below)? They might be a good resource for you to check.
Hi Joann , thank you so much for your support and the link. I am sure this link would give me some support in finding the right direction... Thank you God Bless...
Greetings: Harry I know in a previous post you said you were like a father figure more than a brother figure to your little sister. God is a father to us all. Keep the faith!. As long as there is breath in your sisters body God has the ability to work miracles today, tomorrow, and for ever. Fear is stress, and stress is a friend to cancer. Fear is also the absence of faith. I will continue to pray for restorative healing for your little sister. Again God bless you, your sister and your loved ones Amen! ! ! !
Hello Dear, yes the Almighty is our Father and I have full faith in him. But being a human I sometimes fumble as no tests till now have helped us in anyway. Have got all the possible tests done but we are not getting any direction. Reading your post has given me so much of Hope back. Sometimes God conveys message through kind souls and I can take your blessings as his, coming through you. Thank you so much for putting my faith back on track. Waiting For Our Miracle to happen...
Hi Barbara, My sis too had it since last July 16. Full chemo(paclitaxel) and radio was given. But it came back in the other breast a month after the treatment got over.Again chemo is being given and Ever since we have been on our toes to look for some solution or some alternative therapy. Thank you so much for your prayers and blessings. We all will pray for your Good health and happiness too. I have faith in God and yes I will keep u posted whatever piece of information I get regarding this... Good luck
Yes keep us triple negative folks posted - I did the immu 132 study and it kept me going for a few months - there's also a liv1 study being done - tell us what worked- didn't work for you if you don't mind
Hi Barbara, How are you doing on erubulin? I just started it - I also started with the pins and needles in my arms already and hope the neuropathy just stays steady and doesn't progress especially if the treatment is working
Hi, my sis too was given erubulin along with carboplatin. But her liver counts went up 7 times and also she felt tingling sensation in her finger tips and hands so the doc stopped it and gave abraxin instead along with carboplatin...
Hi Barbra, Thank you so much for your wishes... Yes this time carboplatin and abraxin is being given. We are considering immunotherapy too(medicine is immu 132)... But it's in the trial stages. Hope this chemo solves all the issues. Just back home after today's chemo... God Bless All...
Yes -I'm stage 4 triple negative - Did they do a PETscan? If the cancer is just in the breasts - why not surgery? Are lymph nodes involved? If surgery is not an option at this time - genomic testing could assist with other treatment options
Hi, yes pet ct showed in the left breast affected and a little in the lilac bone(new finding this time). Yes lymph nodes were involved both times and 14-16 which is very high. They imediately wanted to start the chemo as it had occurred with in a Months time of the treatment getting over for the right one(4+4 paclitaxel chemos and 30 radio) and also that it had Metastasized... And they wanted to see whether the chemo medicine will react on the tumor and shrink it or not. She is being given Carboplatin this time and abraxin( is added when her liver counts come near normal). We got all the generic tests done but in vain. Gene tests can really help but in our case Braca 1/2 and other Gene tests came negative, now Were considering immunotherapy also. Immu 132 is the drug we might consider further though it's in the clinical trial stage right now.
Keep ur chin up, have faith and the strength to kick this dam disease, I Will for you. Good luck for your treatment... stay in touch... God bless...
I did the immu132 -it's a targeted chemo - ...it gave me a few months but I was VERY VERY tired on tx -I could just get myself to work and back and take care of my boys...I'm on erubulin now - so much more energy but neuropathy is starting - everything has pluses and minuses - we'll see how it goes -we must hold onto hope - my best to your sis and you -
my genomic testing came back with nothing also - it can be very disheartening -most of the time I just try to live my life and not think about it -it's so hard to plan anything -but I must for my boys -they keep me going -I would love 5 more reasonable quality of life years to see my youngest through high school
Don't worry, prayers have the utmost power to do the impossible... We all will pray for your Good health and long life.. God bless you and ur family...
Thank you Harry, I have somewhat of a story but to begin I was diagnosed in January 2015 with breast cancer - I felt the lump and it was on my chest wall - of course it was on a fri so I couldn't do anything until Monday but my gym was great and took me in right away. She got me a mammogram right way and the mammo people did the f/u ultrasound right away and then they scheduled me for the biopsy at NYU of the Breast and the lymph node and I got an appointment with a surgeon at Mount Sinai / Beth Israel pretty quickly (it helped that it was at the hospital where I work) she went over my options - we would get a brac ( I had to meet with a genetic counselor) to see if I should have the ovaries removed too - I would get a PETSCAN just as a cautious preliminary measure. Well eventually the insurance company approved the Braca testing and that was negative so yea I got to keep my ovaries - unfortunately the Pet lit up like a Christmas tree - many lymph nodes throughout the body and some activity on the liver ( however my liver was never biopsies and PETscans can NOT diagnose cancer only a biopsy can) so the surgeon who was previously so hopeful introduced me to the oncologist ( it seemed like a death sentence at the time) and more bad news NY U sent my pathology report and said i was triple negative - the studies were still out on whether surgery should be done on stage 4 pts / pts with mets - my surgeon said surgery didn't make sense unless I was NED - so the oncologist went over chemo options and felt Abraxane would be the best choice . I had a really great response to it - my tumor markers ( CEA and CA 27-29 )! were WNL and the liver was clear as well as the primary site and most of the lymph nodes but I started getting bad neuropathy - I had also continued to exercise ( at a reduced level - - hard when your RBCs drop) and tried to cut out sweets and reduce carbs - but still had wine 🍷- the surgeon still said no to surgery - I think this was maybe June (it was a very busy time - I was still working and finished up my masters and graduated that semester, my youngest found out where he would attend middle school, I planned my oldest son's Bar Mitzvah on a non- existent budget , went to my 25th college/ sorority reunion and had to move for cheaper rent and my marriage was rocky and my husband was not helpful - so I really have to sit down with my records if you want me to be accurate - I was very discouraged at this point ) - so I entered a trial that seemed promising next - tired now going to bed - remind me to finish rest about of treatments if you want to hear more
Hi, thank you for sharing all this please. You have really been so strong dealing with all this without your husband supporting you. God be with you and be around you I really would like to get to know more about your problem and what trials did u go in for and how did they help you please...
After abraxane - ( stopped due to neuropathy ) i went into a trial called the metric trial / Celldex - but it didn't work, cancer progressed - stopped trial- was started on xelida - and the hand / foot issues they talk about well - my feet swelled up something awful - - looked into an immunotherapy trial at NYU but the dr there told me that I was not triple neg but her 2 positive when he pulled up my records ( long story) - has to be rebiopsied to see if I was her 2 + ( after receiving this info 7 months after being tested for triple neg - by a fluke ) went for second opinion - even though there was minimal detection of her 2 consensus was I should be treated for it - went for heart study ( ejection fraction) before being put on herceptin and gen/ carb , herceptin not helpful, it was decided I was truly triple neg - stayed on gem/ carb until that stopped working (hair grew back!) then went to Columbia for IMMU 132 targeted chemo trial after being accepted into that - it worked for awhile but even though tumors shrinking in lymph nodes - breast tumors growing - rebiposied, genomic sequencing done - no targets 😥- now on eeubulin - and not sure if it's working - will find out in a few weeks - also during all this I divorced my husband when I found out he was cheating on me and didn't want to stay in the marriage and he shouldn't have to stay just because I had cancer - I guess I was in denial as I never stopped loving him during our marriage but was so tired of being treated like crap - so that negativity is gone but stressors of being single mom with full custody of two teenage boys and 2 jobs ...it's hard to stay on top of the new research and depressing - as the statistics are grim and difficult for me to read in a detached fashion - - not a lot new coming down the pipeline but I am hopeful
Dear Harry, I'm sure your love and support means alot to your sister! Since you/she seem interested in exploring alternative therapy, the Annie Appleseed Project is probably the most reputable source of info about CAM (complimentary and alternative medicine). They pay attention to things like clinical trials and sound scientific evidence. The founder is a long time breast cancer survivor. If your sister has not seen an oncologist who specializes in breast cancer, that would certainly be a wise thing for her to do. The Comprehensive Cancer Centers (listed by state on the website of the National Cancer Institute) are the top tier of cancer centers in the US and they offer second opinion evaluations as well as treatment and local general oncs should be supportive of any patient wanting a second opinion from a highly specialized onc. Currently those of us with TNBC do have fewer treatment opinions than those of us with either a hormone receptor positive or her2neu receptor positive bc, but some with TNBC do well on chemo. Personally, I think that better treatment options for those with TNBC is one of the most important areas for further research and improved treatment options.
I have a supportive brother, too, and since he and I have gone thru the deaths of both of our parents, I know from experience that he is a good advocate for those he loves, and that gives me alot of peace. He is my little brother, though, the little imp who taught me to not be afraid of bugs, rodents, splashing water in the lake, the dark, and to truly understand the males of the species! lol I truly believe that those of us with a great sibling of the opposite gender have a real advantage in life!
Sending warm healing thoughts and prayers to you, your sister and all who care for you both.
Hi PJBinMI,
I have basically taken second third fourth even fifth opinion in India as well as oncos from us over the phone or mails, but all had the same line of treatment. We can't afford to sit idle after the chemo is over. We are looking at some breakthrough therapies and some more tests which could give us some clue. So true that siblings can be the best support in every step of your life. Yes my sis is 9 years younger to me but I always treated as my eldest daughter ... And I believe when prayers from the heart are pure, miracles do happen and I am praying that God is going to show us the right path towards her recovery and a healthy long life...
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... And I believe when prayers from the heart are pure, miracles do happen and I am praying that God is going to show us the right path towards her recovery and a healthy long life... 
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