Triple Negative Stage IV
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Finally got in to see a oncology focused naturopath yesterday. She would like to start me on mistletoe and vit c infusions in the new year. My goal is to improve my immune system and try to stabilized cancer growth. She also recommended a metformin type herb (I tested positive for igf-1 gene on my foundation one test) and said no sweetners except xytol and stevia... even maple syrup and agave are bad. There was another supplument called breastdefense. Also probably more vit d. Am getting some bloodwork done and will be checking all with my oncs. Kelly
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Yes. I heard about dropping the carbo and just doing the gemzar. My MO wanted that to happen before we realized it had stopped working altogether.
Kelly, I am pulling for you!
Hugs,
Brenda
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having a hard time wrapping my head around brain met. Just diagnosed yesterday and its the size of a golf ball. They haven't even given me aa actual size. My family is imploding.the body scan was clear and MRI shows only the one tumor, but I'm petrified. Having the tumor removed on monday and it is in a good place as they say. Relatively easy to remove. After this I'm just to go to radiation. No meds for triple neg brain tumor... it seems so strange. I,m wigging out here. My husband has been wonderful, but everyone is so tired. I'm so scared.
I haven't read about anyone who actually h$ brain surgery to remove tumors. This must be a very bad sign.
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Lydiahouse. There is a thread called Brain mets sisters hete and you may find more info there. Surgery is not uncommon if there are only one or two tumours and they are easy to get at. If you have headaches ask for steriods to reduce the pressure. Also ask for some anti anxiety meds for yourself and your husband. I like Ativan. You just take it when needed and it helps take that edge off. Also ask your hosptial or doc for social or emotional support help. This is scary stuff but it really sounds scarier than it is. Stay away fom Dr google too. Hugs xo
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Lydia, ((((HUGS))) to you. I don't have any more to add than what keldel said, but I do echo her that the brain mets thred probably had a lot of good information and support and an anti-anxiety med is good to help you cope.
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Lydia. Do look at the brain mets thread. There are not a huge number of us there but you are certainly not alone. The beginning is so scary. Your case sounds pretty favorable - I mean, if you have to have brain mets... Also xeloda can be used for trip neg brain mets. Hang in there.
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Finally saw my MRI results yesterday. While I have 2 small tumours at the back of my head. The lesions are really small and may just be fluid or swelling. Its great news to get. My onc is feeling very optimistic! Thank you to everyone for your support with this. Merry Christmas and Happy New Year as well.
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Kelly, what a great gift right before Christmas! May this coming year give everyone here joy and hope!
Love,
Brenda
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Yes Brenda. I couldn't agree more. How arecu doing?
Keld
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Kelly,
I am trying Faslodex in between chemo regimens. I get a scare now and then because I am so used to the chemo working and when I am not on it I feel like I am tempting fate. But my onc said that my disease was stable enough to try Faslodex. It does not give me any of the common side effects, thank goodness, but I had a scare a few weeks ago when my chest hurt every time I sneezed! Being the alarmist that I am I was sure my lung mets had progressed, but I was unwilling to tell anyone about it. Now, for some reason that symptom is gone. I am sneezing normally now. So I'm keeping my fingers crossed and hoping that the Faslodex gives me more time!
I hope everyone here has a much better year to come!!!!
Love,
Brenda
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Hi to everyone. I haven't been on for ages and have been finding the treatment hard but am now about to have the 6th taxi chemo before a scan and visit to oncologist. After 3 he said it was working and some shrinkage had occurred . It had t gone -just hope it isn't any worse. Have been catching up on how everybody is getting on. Best wishes to all Ba0 -
Great to meet you and glad the taxol is doing its job, ive been on taxol for the second time since July and managed the SEs well but last scan was questionable. So now I am feeling nervous that it has stopped working, will know more on next scan in six weeks or if I have symptoms. Every ache or pain scares me, but what can I do.
What bothered you bout the chemo?
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Hi Smiley47. I had an allergic reaction to the first 2 chemos and I am not the best of patients. Also it has been affecting my nerves quite a lot both with the kegs and the finger tips and as it's gone on I am so tired I have been having difficulty keeping going with my usual activities with the kids. Ba0 -
Hi BarbDenise64:
Sorry to hear your suffering with nerves from all the stress; I think we all do. I read a post about finger nail care that helped with chemo but not sure which site I was on to be able repeat it to you; i will look into it. Maybe you could ask on this site if any ladies know of any remedies, I think it was vinegar and water but not sure of the quantities. Hang in there and vent away you can message privately if you like.
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hi barb. I'm sorry you are experiencing neuropathy. Have you discussed with your dr? Perhaps a gabapentin rx would help? While I was on taxol, I iced my hands and feet for prevention. I also took L-glutamine because I read in here that it helped. I hasd very minimal issues. I am currently on abraxane which is also a taxane. I've been icing and so far no problems.
Good luck.
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Completed 10 of 10 prescribed whole brain radiation treatments today. Fatigue is terrible. Otherwise my sysmptoms like balance and motor skills seem to have improved. Scalp is itchy and hair is coming out. My radiation oncologist says that radiation is very effective for brain mets. Next follow-up is in mid Jan
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congratulations on your radiation being completed, fingers crossed it was effective for you. Wishing well for 2015!!!
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Thanks for the helpful suggestions. Did anybody else experience marked increase in fatigue as the number of chemos increase. I find I am much more tired than I wasa few weeks ago. Ba0 -
Hi, I'm wondering how many TN girls reach past the 5 year mark after mets? Stage IV still new to me and I had a goal of 8 years, which now seems quite long.
I have gone to a support group for mbc at my cancer center and there is one TN girl 4-5 years out, which makes me hopeful.
Anyone here 4-5 years from mets dx? Longer?
Best wishes for all of us for the best 2015 with as little progression as possible!
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I found my lump Dec 2007 by Feb 2008 I was told I had Stage IV Triple Negative with Mets to my liver (over a dozen spots largest the size of a quarter), and lungs (my entire left lung glowed brightly on the CT scan and had a few spots in my right). Chemo #1 Abraxane, Chemo #2 A/C, first NED scan, Surgery (Bilateral Mastectomy), Radiation, 2nd NED Scan,, Chemo #3 Abraxane again, Oct 2009 3rd NED scan.
Doctors decided to give my body a break, and Grant me a Chemo break, I was told it would be short lived since I was Triple Negative, yeah it is 2015, the beginning of my 7th year with Stage IV. I was dx in the Summer of 2010 with an Autoimmune Disorder called Sjogren's Syndrome, Fibromaylgia, Raynauds which has been a royal pain in my ass, the doctors believe that it is some how keeping the Cancer under-control but it is a double edge sword. All moisture making glands, in my body are dead or dying my partoid glands are always swollen, I have little to no saliva, I have Severe dry eyes,which has caused me to have Photo-phobia, (my eyes when inflamed can't stand any kind of light I wear shades the majority of the time), I have no sweat glands so I have issues with regulating hot and cold, Extreme Fatigue, Swollen Joints, my skin allerigic to water and the list goes on.
I have been on Methotrexate an old Chemo drug since 2012 in a low dose in an attempt to keep the Sjogren's under-control, I also have to take Plaquenil,Gabapentin, and a crap load more pills, I had been working Full time through Chemo until I was slammed with the Sjogren's, my body was like nope not happening, so I went on Long Term Disability from work which has helped allot, was able to move back home and reconnect with my extended family. That and having your EMT/Registered Nurse Cousin living right next door comes in handy and retired Aunts and Uncles that love driving you the 2 hours to then Cancer Hospital/rheumatology clinic/eye clinic every month comes in handy. That and all the home cooked meals.
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ReadingMama,
I'm wondering why you consider your cancer to be TN? Your signature says your BC is her2+. Did your BC hormone status change since 2010? Her2+ BC has so many more options than TNBC.
Good luck to you!
Brenda
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Hydeskate,
I see you in other forums and I continue to be fascinated by your case and very, very happy for you. Not only are you surviving past the 5 year mark with TNBC, your BC has shown NED most of that time. That is truly amazing. May you continue to give us good news about the cancer and may your symptoms from all the other stuff get better!
Brenda
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Readingmama,
There is also a lady who goes by "lotusblossom" who has lived with stage 4 TNBC for over five years.
Brenda
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I'm 3 years, 4 months from stage IV dx and NED for the last 6+ months. When I finally asked my MO recently how long she thought I'd live, she said more than 10 years. Hope she's right.
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hi Brenda, my first dx was a mix and included HER2+ clusters so was treated as positive and I received a year of Herceptin. Second dx and now third dx as Stage IV are both TN. Confirmed with biopsy of lymph node.
Good point though, I should make that clearer somehow in my signature.
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Hi ladies,
Great to hear such awesome news of long lives with TNBC. I know I am praying I am one of them too.
Adnerb is lotusblossom on this board?
Do any of you talk on the phone?
Lucy
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Lotusblossom is in Canada, Quebec or Montreal I think. I don't speak with anyone on the phone but have exchanged private messages with a few if that is helpful for you.
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Anyone heard of this targeted therapy for advanced TNC or been on the trial.
http://www.hopkinsbreastcenter.org/artemis/201501/...
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I was diagnosed in 2009. Started with avastin, taxol and someta. Was taken off taxol because of neurapathy and also had a huge whole in my shin bone that would not heal. I was put on xeloda which lasted 3 1/2 years. Then on to gemzar, abraxane and doxil. Now on halvalen which is working really well. My biggest problem is my jaw bone. Seems either the zometa and xgeva has given me ONJ. I am still on xgeva every other month. Onc says the benefits of xgeva outweigh the ONJ since I already have the disease.
I never expected to live this long - 5 1/2 years. If I did I would of lived my life different. I would of lived it instead of worrying about it every single day and never enjoying my life.
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Gigi, thank you for your wise perspective. I am trying to live my life and take advantage of feeling well. Will be planning extra vacation this year for the summer, with trip insurance just in case.
Am thrilled to hear you are over 5 years and to hear all the drugs you have had. I need to write them down or something for future reference. I seem to read all the time about er+ drugs that don't help us.
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