Calling all TNs
Comments
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Thanks for replying!! It gives me hope to read posts and talk to TN survivors!! Waiting to see Oncologist in 4 days. I'm not a fan of waiting but I have no choice. In the meantime Im self treating with diet, staying alkaline, trying to cut out sugar and red meat. Taking supplements..graviola(guanabana fruit)...breast health vitamin with dim..d3..green tea etc., turkey tail mushroom with other immune support mushrooms...low dose asprin 81mg...vitamin c drip 2x prior to bilateral mastectomy..maybe over doing it but I am too young and have children to care for to not fight this with everything I can both conventional and non conventional.
Thanks to all who post!!
Anna
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Annie, Titan and Bak- thanks so much for all the kind words. You gals are so very special to me in all ways possible.
Bak - it's a damn shame about your insurance company, what with all you have been through. Has your doctor taken up the fight for you? Mine told me there were actual "rounds" she had to go in the fight with them (and still lost!). However, I have had no problems since my diagnose up to the present time of denial, which is a whole lot different than your situation. I have heard that there are insurance advocates in the insurance company that you could also go to to continue protesting their denial. Hope it works, because, escpecially in your case, this is just wrong, wrong and more wrong.
Wishing you all the best,
Linda
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Inmate - so glad you popped in here. Moowah!
Annie - I love the kitten photo.0 -
Hi All, I haven't been posting for awhile, but I've been reading the messages on my cell phone. I want to reach out to all the ladies with recurrences and send my prayers your way. I'm hoping you will share your stories with me on any reason your doctor may have given for the recurrence or what you think. I'm at the point where chemo is done (no tumor left - there is only residual remaining they said after ultra sound), and I meet with my BS and PS on Monday. Still not sure what procedure, although I'm leaning towards BMX and DEIP Flap (or whatever it's called). Anyway, I wanted to ask for help in the diet arena and also ask all you ladies with recurrences if you had changed your diet. I've never been the healthiest, but I'm not all that bad. I also had 25 lbs to lose before the diagnosis, and now after chemo it's closer to 50. I'm trying to switch to a vegan/vegetarian diet and doing a lot of reading that mushrooms are good (conflicting info on which ones), green smoothies (bought a vitamix that I haven't really used yet), and bought some vitamins. I still need to exercise, which I hope to start tomorrow (even if it's just to walk the dog). I hate going out looking like a cancer patient and have been hibernating. Hate wearing the wig. I'd love to hear what everyone is doing and what they've been advised to do. I'd like to do whatever is necessary to avoid a recurrence. Are there any indicators to see if you're predisposed to it? Thanks! Lauren
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Inmate! love hearing from you girl! We mommies worry if we don't hear from our girls..but you have to do what you have to do and respect that...I am on FB with a few others on here...guess I will have to do a search for you.
Lauren..as far as the diet etc..I would encourage you to do what you think is best for you.....exercise is great...not sure how much diet really helps but eating good will just make you feel better....my dh and I are now doing the meat from a 4 legged animal only twice per week...no more than that...plus I'm always stuffing the veggies down every nite and i love them
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I've cut sugar down (can't say out bc I have 1 sprite a week), low fat, fresh (not pre-packaged food) and increased seafood meals and chicken and less meat. The hardest has been to not eat chocolate and cheese.
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Hello Ladies! I haven't been on in a couple of months! I still see familiar faces, but lot's of new faces too. So sorry you have to be here, but trust me you will be glad you found this board. It really got me through. I passed my 2 year mark in March and so far so good. Life is almost back to normal for me. Still don't have energy like I used to, and still hurt sometimes. Oh and my eyebrows are falling out again!
But I just wanted to say hello! Stay strong and fight, fight, fight!!!
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Just got back from my doctor and the purse is officially off. No more pump for me. By my estimation I wore that damned thing for 5 months straight. That's chemo 24/7 for 5 months. No wonder I got hand a foot syndrome. The hand/foot thing is why I had to quit. The mets on my chest were not cooperating so a change is in order. I will be starting a new drug called Doxil on Monday. Infusion every 3 weeks. Here's hoping that this one works. I really am running out of options. Here's what I've taken so far (in order?) A/C, Taxol, Cisplatin, Cytoxin, Methotrexate, Navelbine, Abraxane, Erubilin, 5-FU. There is one more but I just can't remember. It was Gemzar. I took it with the Cisplatin during overnight hospital infusions.
In addition to the chemo changes I am getting a brain scan on Monday. Something isn't right. I have a hard time reading things without seeming to make up words in my head and get dizzy from time to time. So for good measure we will scan to be sure we are headed in the right direction on chemo. Fun times!
That's all I got. Except I hope everyone had a great day. I am enjoying a glass of wine and a little green to relax. Cheers to you all!
Love to you all!
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Hi to all of you ladies. I am new and having stumbled onto this site yesterday spent literally all day yesterday reading the entire 4 years of this string. I felt like I was reading a series of novels without having to wait for the next book to be published! You can see my profile details. I am now 60 years old {me, really, me, wasn't I just in third grade?}, diagnosed at 58+. As most of you said, I found the lump myself a month before I was due for my annual mammo. I (now it seems) fortuitously had been experiencing from time to time a muscle spasm just under my left breast (unrelated I'm told) and so while sitting up in bed in my nightgown in Fairbanks, AK while visiting my daughter and reading from my Nook, I lifted up my left breast so I could rub the annoying muscle below. Lo and behold, as I raised my breast I felt a lump. My initial and subsequent thought was, "Wow, where did that come from?" It seemed to appear out of nowhere, as many of you have described. I was not particularly systematic in doing SBE, but it had not been very long.
I went through the usual course that many of you describe here and am now 15 months post chemo.
The main (and seemingly trivial, but not) reason I decided to post and I hope you have all read to this point is that I have seen nothing mentioned about icing you finger and toenails during treatment. My nurses told me about this and literally while I received my chemo infusions (nothing at home afterwards), I had ice or icepacks placed over my fingernails and toenails. I had some slight yellowing of my fingernails, but they really were fine. Unfortunately, I delayed icing my toes until my 5th and 6th treatments and had more damage there, however, I did not lose any toenails completely. They turned yellow and seemed to have blood blisters under the nails as well as curling inward.
I have been so fortunate to have a co-worker to confide in who had TN 7 years ago at the young age of 32. She is cured today and living a normal life
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Tea tree oil was also recommened. I rubbed it routinely on finger and toe nails. I can't confirm if it made a difference as I have nothing to compare to, but I did not have the awful symptoms many of you have unfortunately described. Try it!0 -
Inmate - I hope the new med works for you. I also keep trying new meds. Gemzar was great as far as Se's go. The infusion time was short and with neupogen injections, my blood count cooperated. Would'nt you know though, did not do a darn thing for my lung mets. Nope, they decided I was having it too easy on Gemzar and took the opportunity to grow! I am up so early this a.m. as I am sitting here staring at my "last resort" - Xeloda. It arrived in the mail yesterday. I have it all sorted out in my shiny new pill box, compliments of the mfgs. of X, of course, along with a bunch of other crap in my "Welcome to X" packet. How many darn packets have we had....I just love it, "Welcome to Xeloda", like it's an invitation to a party! Anyway, my wonderful six yr old granddaugher spent the night with me, so I am going to wait until she goes to school this a.m. before I take my first dose. I realize that the nausea may not set in with the first dose, but for some people it does. I try to make mornings fun, so I do not want to ruin it. Hmmmmm, wonder what my excuse will be to wait to take it after she goes to school...oh yes, I have to eat breakfast before I take it, and of course, I need to feed cats, and oh yes, there's the litter box to clean.....
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GRammy - I iced my finger nails but not my toes. My finder nails have ridges and some discoloration but that is it.
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I wonder if taking Taxol weekly instead of DD/Taxol is easier on the nails? My one toenail lifted on one side but my fingernails were fine. I did not ice. I took the weekly Taxol.
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Schatzi14... I don't know. I also did weekly taxol and actually all but 3 of my fingernails oozed and lifted and I lost 1. They r now getting back to normal and the one I lost is almost grown back. My big toenails are black still and lifting but didn't fall off yet. Six months pfc and still dealing with these little reminders!
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Hi Everyone,
Grammy - welcome to the boards!
So, for anyone who would like something positive to lean on, here is the link again from a few days ago. It is a Q & A answer session with Dr. Lisa Carey, one of the leaders in TNBC reseearch.
I hope you all have a great day. I'm praying for every one of you and sending you all a big bag of hugs!
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Welcome back, Dawn. So sorry the last chemo didn't work for you but praying that the Doxil will kick the FC to the curb once and for all. You are a real inspiration for everyone going through this challenge but please be sure to take care of yourself first and foremost. Enjoy the wine and the green (I didn't realize you were Irish!).
{{{HUGS}}}
Doreen
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Tell me ladies what is the green. Never heard of this
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Inspired - I'm so sorry and apologize to you and everyone who read it! You are correct. I didn't mean it that way at all and will edit my post immediately. I meant to say that I am now in the window of time where there is the highest risk, if it was going to return at all, which the odds are very much against. My doctor has been very encouraging about the spectacular success we are all seeing with current treatments. I did not mean to offend or alarm anyone.
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Debra - your quote from the article is not quite correct. The 10 year 8% relapse figure she gives is for TN small tumors with no node involvement, not for all TNs.
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Cocker - I may have jumped to the wrong conclusion but I deduced that the green referred to was a plant which grows quite tall and has been known to alleviate some of the effects of cancer - it is also used to treat glaucome.
Doreen
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Hi Grammy98 - No worries! I'm delighted to hear that you doctor thinks we are making progress in this area, and so happy to see you posting your success too!
Placid44 - Oops! Thank you so much for pointing out to me that I had the rate incorrect regarding the article I posted! I have also updated my posting.
Talk to you all soon - I'm trying to make a non-complicated dinner, which suddenly became very complicated!
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Yes, what is the green? LOL Do I need to start incorporating this?
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Dawn-I didn't see your post right before mine a ways back, so happy to "see" you!!! We must have been posting at the same time! I am growing some green, though they haven't produced yet:) I will let you know when they do.
Cocker-I don't really understand the insurance either. I was getting mri's yearly and then one year they said they wouldn't pay anymore, I would have to do out of pocket, which I couldn't afford. It will be interesting to see if they will pay for a pet scan now as follow up, since it has been over a year since I have had one. so I think...maybe longer.
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okay ladies, green is marijuana and yes it does help with pain, anxiety, fatigue, insomnia and your appetite. i find the edible form more effective. if you want more information, please send me a PM.
super happy and productive today. getting ready for a jewelry show next weekend for a local art walk. i hope i do well. i've been making things out of old beads and it has been very interesting. this hobby has haunted me since 1990.
okay off to make a beauty necklace. good night lovely ladies!
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Geez Inmate I could do with some of that. Will it make me go loop di loop cause I'm already that lol. Seriously wouldn't know where to get it here as its illegal but sounds pretty good to me.
Your post and what you are going through puts me to shame. With all your worries you are up and raring to go whereas me, what am I doing, blobbing out in front of the computer with a smoke in one hand (just finished dinner) and a coffee in the other. I did work from 7.30am to 5pm so thats something in my defence isn't it. Eagerly waiting for you to say yes. You never did put a photo of your jewellery on here, are you able to. I absolutely know you will do well at the art show, I have no doubt about that.
Gilly when do you leave for England. Give the Queen a big kiss from me (and a sneaky one to William).
Bak I am so glad we don't have to pay for treatment here (although a lot of people have private insurance and get their treatment paid for) but it is so expensive and I just couldn't afford it. I went public and really could not have asked for better treatment. Yes there was four of us to a ward but I got great care and have a great surgeon and the best in the country for my oncologist. I was offered a private room but I wanted somebody to chat to. Now they have started remodelling the hospital with a mega bucks upgrade and you do get a really nice room and ensuite all to yourself. Bit too late though cause I don't intend to go back!!
Big hugs to everyone. Thinking of you all.
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Wow Inmate look at this !!
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Hi everyone. Glad to see you posting again, Inmate. I missed your humor and wisdom. Welcome to the new ladies. Finally a warm day here in the midwest. I am going to dig in the dirt in my backyard. That always bring a good feeling of renewal, followed by a back ache of course!
Wishing everyone a peaceful day.
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Hi all, just wanted to share my good news!
Met with my MO yesterday for my post chemo, post-surgery pathology results. He was very optimistic. The neoadjuvant chemo worked, shrinking my tumors to a very small size (which because they were multifocal the mastectomy, rather than a lumpectomy) obliterated those. There was no evidence in blood or lymph fluid of any cancer cells floating around.
Because I am such a worrier he will take my results to the tumor board meeting I two weeks to confirm. I had also sent him in advance several questions that have been discussed relevant to all EARLY STAGE tnbcs. I just posted that on our sister board in the UK a few moments ago and you can find there since I don't know how to copy from one forum to another).
So, I'm a happy camper today! And today is all we really have, yes?
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Peggy - So glad to hear your great news!
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Thanks NavyMom - have fun. Yes, digging is good therapy. That's how raking is for me.
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