Calling all TNs
Comments
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fighter - anytime I get a cold my nodes flare up in my neck (about 4 of them) for weeks to months after. any chance you've been sick. did the dr think it was cancer or just taking precautions.
WE will get you through whatever this is.
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thanks LRM216 for the info.
She obviously fought long and hard
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fighter_34 I'm praying as well. I know its hard, but try not to worry too much.
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Hang in there, Fighter, we are all sending you strength and lots of loving hands to hold onto. As everyone else that has posted before me, add me to the list of those hoping and praying this will be nothing.
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Oh fighter, I'm so sorry you are going through this. Hoping it will be nothing. Deep breaths... (((hugs)))
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Thanks Ladies! I am just a nervous wreck. No one has said the C word yet!, but I have already gone their.
I have been having little aches and pains all day, and generally not feeling like myself.
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Fighter, I'm going to think it is the beginning of the flu or something. I refuse to go "there"!
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Fighter-The waiting is so difficult. Hopefully those little nodes will just disappear before they are able to biopsy them! Could very well be the start of the flu:( which typically most would not be happy about but something we jump for joy about!
I did post on facebook that my mri came back clear, so some of you already know:). After a long torturous wait my doc finally called me and said, well, I have good news and I have bad news. I blurted out is it cancer? He replied no. Arthritis and pinched nerves, actually on both the left and right side, but my left side is what hurts. I was so relieved it was not cancer. But I am still in terrible pain. Going for a cortisone shot in a couple of weeks. They told me no ibuprofen for 7 days before. I swear I don't think I can go without any pain reliever! It just hurts so fricken bad and I am frustrated. Oh well, so happy it is not cancer as far as they know.
I am also very saddened by the loss of Karen. The story of her shopping for shoes reminds me of my best friend that died from leukemia. Before she was going in to the hospital for her bone marrow transplant we went shopping. She found these beautiful Steve Madden boots. She was trying them on and having a hard time getting them on. I said, those do not seem very practical, too hard to get on. Well, she bought them and wore them out of the store. She was so happy to have those boots! She wore them to the hospital. unfortunately she did not make it out of the hospital. I am so glad she didn't listen to me.
Stupidboob-I thought pet scans were supposed to be a very sensitive test and would show most things. Of course we worry and your doctor's statement certainly didn't help! I too have been having horrible back pain since the end of treatment. Maybe all this crap we have been through has weakened our bodies. I often wonder if this is as good as it is going to get, I certainly hope not. Being in pain is frustrating, I just can't seem to move on. I hope you find some relief. Do they give you pain meds? Mine won't give me anything. I wonder if anything would really help.
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Oh, Cocker- when I came home the other day my cat was sitting in Romi's lap (the dog in my avatar photo). It was the sweetest thing I have ever seen! They kept gazing into each other's eyes and Romi gave her a sweet little lick on her face, and she loved it! They truly love each other! I will have to post a picture, if I can figure out how.
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I don't understand how all the experts in the field of BC have such different ideas on how to treat TN. I know there are stages and lymph node involvement and such but even so I've seen ladies on here with node involvement and not have the treatment that others have with no node involvement. It is so confusing especially when you want to do all you can to prevent it from coming back!
I feel like I learn more on here to ask my MO about and why we did what we did and what are we going to do in the future. The fog is clearing and I think I am fortunate to have had the treatment and not have too many lingering side effects. I read what some of you are going thru and my heart breaks.
My radiologist worked for years at MD Anderson in Houston and now works at TX Oncology where I was treated. His wife had TNBC just one year ahead of me so he had done a lot of research before he did radiation on her. He told me he treated her agressively and was called into my case to do the same. I didn't have lymph node involvement under my arms (had sentinel node biopsy) but did have a suspicious one in my chest wall. Turned out that after biopsy it was benign BUT still had radiation.
Oh well, just throwing those thoughts out there.
Thanks for the friendship and love on here. gwenie
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Fighter- will be thinking about you today. I hope the biopsy is pain free and you get good results...quickly!
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Hi! I have been reading but not posting. I am curious, has anyone lost their eyelashes a second time after they grew back? I was finished with chemo in August at which time I had no eyelashes, eyebrows or any hair whatsoever, and by last month I had pretty nice looking eyelashes again. Now they are falling out again! Sure hope they come back.
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Yes, Zenful, that happens. I had the same treatment and I lost mine 2-3 times. I didn't lose them all after the first time, but they really thinned out. It was depressing because I was so excited to get them back. They WILL come back, but it takes some time before things stabilize with lashes and brows. You look beautiful in your picture!
Kathy
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Just as KSteve described, I lost my eye lashes twice although they weren't totally gone either time, just very sparse and stubby. The first time was a few weeks after my last A/C chemo, and while I can't remember exactly (hell getting old), my impression is that it was a month or two later when they fell out again and then grew back permanently.
Good luck!
Carol
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BAK I hope you are able to put the photo up. I just love the picture of Romi. A big cuddly bear. I can just see it now, sitting in the lap and the little kiss.
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Thanks KSteve and encyclicals. I had a full set of eyelashes in that picture taken three weeks ago. I swear I missed my eyelashes more than my hair when I lost them. I will patiently wait for their return.
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Hello! Ladies! I am new here and I am TNBC, dx on 11/27/13. I am going to Chemo (ddAC x4 and taxol x12) from next week (Jan 9th). Do you ladies have any advice during Chemo? Also I will go rad after chemo. I am a bit nervous! I already got hats and wig so am ready to lose my hair, and I already prescribed anti-nausia! So, I am getting ready to go Chemo. Recommendation for anything to eat, excise/activities, and anything to be aware of? Do I miss anything???
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candy - you will find all you need to know on this website. I joined a group of ladies on the forum who were going through chemo the same time period as me, so we were able to support one another and compare side effects etc. So, for example, you might want to look up a "starting chemo January 2014 " group. Good luck and remember you are not alone - most of the women on here have been there and some are stillin the process - it is not easy, but it is manageable. Rest when you need to, exercise each day, eat small meals often and drink lots of fluids!
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I don't post much in this group, usually in my chemo group but I am TnBc and want to know if I should test for BRCA gene. I'm 57 and am adopted so I don't know much about my family history. I have a daughter and 2 sons so I wondering if I should be tested for their sake. I need to see if my insurance will pay for it. Ironically my adoptive mother and her sister both had breast cancer but I am not blood related to them. I guess I need to make another decision, lol.
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BAK, glad to hear your MRI was clear.
Fighter, we are pulling for you that it is nothing.
AC chemo really has me sleeping a lot. I think I slept about 18 hours yesterday. January is a great month for hibernation! I don't feel bad... just extremely fatigued. I figure my body is working very hard right now.
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Gramo--I was 61 when diagnosed and my insurance wouldn't pay for BRAC genetic testing because they said I had no first degree relatives who had breast cancer AND if I had the BRAC gene I would have gotten BC earlier in my life. Hogwash but I wasn't able to pay for testing myself.
My 42 year old daughter's insurance wouldn't pay for her to get tested because my BRAC status was unknown.
At the time I was too tired of fighting insurance to get treatment things I needed so I let that one go. I hope you have the energy to keep fighting even if insurance first denies you.
Hugs,
Peggy
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I would recommend having the test done if you are able to and/or willing to pay for it. My insurance didn't pay for it either. It is powerful information for your children. I am BRCA1+ but I was happy to know for my kids...mostly my daughter. My husband was so upset I was positive but I was more pissed about being TN.
Fighter - hugging you and thinking about you! How dd the biopsy go? xo
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Fighter, thinking of you, hoping things went well.
Gram, I'm adopted as well. My adopted mother and grandmother also had BC and died early from it, but like you, no blood relation. I got tnbc at 54 and because I live in Ontario, they won't test me. I practically begged the genetic councelor but she said that without knowing blood relations-they assume I have none. If I had been under 50, they may have been able to bend the rules. It's very frustrating as I have a son and daughter and worry for them. Hopefully in the States, you will have more luck. I can't help thinking that if BC is about 20% hereditary, does that mean that about 80% is environmental? Well I lived 15 years of my life in the same "environment" as my Mom and Grandmother (adopted) and ate the same diet as them. Sometimes I feel being adopted your treated as a second class citizen.
Sorry, didn't mean to dump my frustrations, but I feel better doing it- lol! I thought that if you were under 60 with tnbc that they automatically tested you for genes in the States? Good luck- really hoping you can get the testing and insurance will pay.
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Hi, everyone. Another TNBC here. Diagnosed in August. 2013 at age 70. (I've had a birthday since then.)
Had 4 cycles of A/C and have had 3 of the 12 scheduled Taxol infusions. SEs have been mild so far. No nausea with the A/C thanks to Emend, and no significant pain from the Neulasta. I have virtually no taste buds which is a real downer. Shaved my head when my hair started coming out because I hated waking up with it in my mouth and nose. I have two lovely wigs but I go commando and have never worn them. Onc nurse told me that my hair might start coming back on the Taxol but instead, I'm losing eyebrows & lashes and even less stubble on my scalp. I was concerned about pain and neuropathy with Taxol but neither has happened yet. I do have on fingernail that starting to separate so I suppose I'll have chemo nails before all this is over.
Had cervical cancer in 1992 but it was caught early. Had a hysterectomy but required no additional treatment.
I'm truly grateful for all of you and your contributions to these boards.
Mary
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Mary, my nurses also told me my hair might start to come back during Taxol, but that's when I lost eyebrows and eyelashes and became shiny bald. I was so glad when it all returned. Just part of the process. This too shall pass, right?
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Funny thing is that I don't mind being bald. I'm in Florida so winter is just sometimes chilly. I do miss my eyebrows.
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Logging in after many days and catching up with the discussions again..
Oh yes, Mary and Zenful..losing eyelashes is a terrible part. My Acs are over, taxol will begin in a few days and I am sure by the second taxol I would have lost it completely..
fighter: do post your biopsy results
simplelife: have your taxols begun? AC is making you sleep..its good. Ac kept me awake whole night..I got palpitations and anxiety attacks, nightmares and all.. I hope taxol is easy on me.
Gramof2: I guess since you got cancer at 57, u are not brca positive, since brca positive women tend to get cancer much earliar.
Cocker: hows ur treatment going on now.. have your chemos begun?
bak: so his name is Romi!! thanks for sharing titbits like this
TifJ: how was holidays.. 2014, u will be completing 4 years post diagnosis!
I am getting ready for the next round..4 taxols lined up! with ACs over, I feel the worst is over...but who knows taxols might surprise me.
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BanR- Yes, 2014 will be 4 years for me (not until August though!). The fear is still with me, but does not rule me any longer. I do feel the whole experience had aged me. Lots more general aches and pains than I had pre-BC. I'm sure actual age has something to do with it, but at 44, almost 45 (when diagnosed) and now just turned 48 seems like I should still "feel" young! Thanks for thinking about me! Hope Taxol treats you well!
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Candycandy,
It's been 1 1/2 years since I finished chemo, so my memory isn't the greatest (yes, chemo brain is real!).
But one thing that happened to me is when my hair started to come out, I was waiting as long as possible to get it cut off. I was outside and the wind caught my hair and blew it the opposite way from how it lay and it hurt like hell - actually made me cry! That MAY not happen to you but be prepared just in case.
Another thing is that one of the the chemo treatments I received (Cytoxan, Taxotere) can cause finger and toe nails to separate and fall off so my hospital provided ice mitts and ice socks while getting that particular infusion. If you are getting either of those, ask before your infusion.
I didn't get radiation but my Mom did when she had bc - remember to moisturize, moisturize, moisturize. The ladies on here who had rads can recommend the best stuff to use. My Mom didn't and, although we thought she had sailed through with no bad effects, after the radiation ended she got terrible radiation burns on her chest.
The best advice I can give you is to remember that you can get through this but take care of yourself:
- take your meds when needed, don't wait until the pain and nausea are unbearable
- eat what you can when you can
- rest when your body tells you to
- don't read too much on the internet as there is way too much negative stuff out there
- try to think positive and avoid negative people
- feel free to come on this site and ask ANY questions you have (no question is wrong or silly)
- vent on this site whenever you have to (most of us have at one time or another)
We have been through what you are going through and we are here for you at every stage - to laugh, to cry and to hold your hand! Good Luck and {{{HUGS}}} as you start this journey.
Doreen
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ditto what Doreen said and drink water water water and more water! Flushes the meds back out. We will all be here to help and support you in any way. Be sure to join the current chemo thread too so you can compare what is going on with others that are in it now. Soon it will all be a memory
Maggie
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