Calling all TNs
Comments
-
Welcome Heather, the ladies on this thread are amazing, you'll find a lot of support here!
Ok Ladies I know this isn't the forum for complaints but just need to vent. Christmas was the first time I went without the wig to see my grandfather. He had asked if the cancer did that to my hair (its about the length of a buzz now) and I said yes. He responded with "I'm glad the cancer did that to your hair and it wasn't your choice because I don't like it" Needless to say I'm incredibly hurt and upset. He's never been one to keep his mouth shut, he's always had to pick out the flaws on me and everyone. I grew up constantly hearing about my weight. Its no wonder I have self image issues. My hubby and I treated both him and a friend of his from the home (he's 90) to lunch at Ruby Tuesdays yesterday and he just couldn't keep his big mouth shut. Every damn time he would look at me he would laugh and say "oh that hair!"
Everyone says I just need to let it go because he's old and has no filter left. Frankly I'm disgusted and really don't want to visit with him anymore. How can someone be so unknowingly cruel? How can I tell him he's hurt my feelings and needs to stop with the coments? His response has always been that I'm too sensitive.
Other than my grandfather, I had a very nice New Years, Hubby was actually off I think for the first time in 6 years so it was just nice to spend time together on a holiday.
Hope everyone had a nice New Years,
Heather
0 -
Good morning ladies! Well the new year has begun and I believe it's going to be a fabulous one. It feels great to be able to say "I'm here"
Inmate- you must be reading my mind. I was planning on posting today to ask if anyone had done Cisplatin. I did do carboplatin with Gemzar but I was told cis was more toxic. What were your SE's. I'm actually even more terrified of the Cetuximab. Hoping it works or slows it down so my dietary and life style changes can keep it at bay. How did you select your name. I really thought you were in prison?
Heather- welcome. These gals have helped me so much as we will try and help you too!
McCrimmon- WHAT! my response has always been "I'm sensitive to your insensitivey, MF" (excuse me for those I may offend", no matter what the relationship, we can all choose who we spend our time with. Surround yourself with people that love you for you. I feel so sorry for people like that they must be very, very sad on the inside. "Letting go" is a struggle I am constantly trying to work on but
it is so good for us to be able to do it.
MBJ- I've had fun on this macrobiotic diet and truly feel better eating it. I was given all of these wonderful cookbooks when i was first diagnosed that i completly ignored up until a couple of months ago. I was really looking forward to meat last night but funny it wasn't nearly as exciting as I thought it would be although my family said it was the best I've ever made. It was all that love I put into it, I'm sure. Smile!
I hope you all have a great day today. I am going to meditate and then work on the painting I'm doing for my daughter.0 -
Heatherweather, my only symptom was pain, sharp and like nothing I had ever felt, and my GYN likewise blew it off as "never a symptom of breast cancer". It was my only symptom as I never had a palpable lump.0
-
Heather,
I'm sorry you had to put up with that at lunch but I wouldn't feel bad about avoiding someone like that, particularly while you are still going through the recovery process. I agree with LJ - we choose who we spend time with and people like that must be horribly sad inside - if they are in touch with their feelings at all. There is someone in my life like that and I have had to limit my exposure during all this but when I haven't it has been very tough. No matter how much I know it is them and not me, it still stings to hear things like that and I am vulnerable enough right now.
0 -
OK, let's all close our eyes for a moment and go to St. Lucia...
0 -
Oh yeah!- I could definitely use a trip there!! Thanks Heidi!
0 -
Well today is the last official day of my holiday - back to the grind tomorrow!
I hope all of you had a great break, and I'm wishing us a happy and healthy 2012.
This is my 3rd Xmas since my diagnosis December 4th 2008, and I have to say, this is the first time since then I've truly felt the joy or happiness of the season. I feel like I made a wonderful Christmas for my children to remember - did all the decorating, baking, candy making, food, all the stuff I've kind of half-assed in previous years because of that dark cloud hanging over me. For some reason this year I've been able to let it go enough to enjoy myself.
Good to see everyone's updates - though I don't post often I do keep up with and think about you a lot. LJ, glad to see you back. And to the new folks - it does get better, we're here for you.
0 -
LJ......The Cisplatin SEs were very manageable. Mostly fatigue for a couple days after with a little dizziness (not enough to be overly concerned). The nausea was very light. Make sure you keep hydrated! I have been very lucky in the 1 1/2 years of constant treatment I have not gotten sick and my appetite has remained somewhat steady. Of course I wonder if that is because the drugs didn't work. I am always secretly hoping for some severe side effect to make me feel like it is working. Oh the things we wish for?! I am not familiar with Cetuximab. I hope any side effects can be managed for you. When do you start?
My name came from my original diagnosis date and how I felt when diagnosed (like I was in prison). I guess my reasoning was this disease makes us all feel like we've been handed a sentence of sorts. I am understanding more and more just how much of a life sentence this can be. Perhaps I will change my name when I get my turn to spin on the dance floor with NED.
Heather......Boys say the darndest things! I agree that you can limit your exposure to those who can't seem to open their mouths without stuffing a foot or two in it. Again, in my experience it's mostly boys but not strictly gender specific. Don't let it get to you too much and if you must, say something to them. Take the opportunity to wave your bald flag and speak your mind. It really can make you feel better, even if it does sting them a bit.
Okay...the best comments I heard when I was bald:
10 yo boy next door....."what happened to your hair?" "Was it the lice?"
nephew...."Your hair is different." me..."do you like it?" nephew...."will it always be different?"
0 -
Inmate, your nephew sounds adorable. How many more treatments until you are finished? I know what you mean about the side effects. I was under the impression that you lost all of your hair during chemo and I was so afraid it wasn't working because I still had a very small amount left.
0 -
Hi, Just thought I'd join this thread since I was diagnosed with TNBC last June. I've been on another thread with women who all started chemo in July. It has been a wonderful group but now that I've finished chemo and rads would like to be with other TNs. I've been reading some of the previous posts and it's interesting to learn about some of the other treatment options. I see my onc next week and plan to ask her about Metformin. I had a clean mammo a couple of weeks ago and they don't want to see me for six months which I guess I take as a good sign. Anybody else seen more frequently than that the first year?
I've also noticed alot of other cat lovers on this site. I have two-Sookie and Sunny. They have been super cancer buddies all through this experience. Hope you're all as happy as I am to leave 2011 behind and look forward to a better 2012.
0 -
HeatherWeather-It is so nice when yo uhave a team of doctors that will listen and take time with you. Glad you were able to find that.
Mcrimmon-I don't know what I would do with those comments, as I am truly sensitive. I always wished I was the type of person that quckly came up with a comeback to the comments, to put him in his place! You do not deserve to have to put up with that.
Inmate-yes, I feel like I am in prison! Especially since I have been in the hospital!
Welcome Khs. I have lots of animals, including 2 cats, I get a tird one in a few days because my friend is moving and can't take hers. Hers is the kitten of one of mine. Mine was a stray and was preggo when I took her in, I kept one of her babies and now will have another.
0 -
what does Ki-67 mean?
0 -
Bak - I'm sorry, I keep meaning to post that I'm sorry your stuck in the hospital with that infection. I hope its clearing up and you'll be out soon. Are you feeling better?
mtnbiker, I'm not sure what it is exactly and I keep forgetting to ask. Starting to really believe chemo brain was my worst side effect.
0 -
Hi girls, surprise surprise yes It is me I am back to the land of the living....barely but here. I made it through the holidays and going to try my best to focus on all positive in 2012. Cant beleive one year canniversary is coming up...I dont know how that happened. Well I wanted to wish you all love and happiness you deservve in 2012. Thank you for always being there for me my sisters
Hugs Kymn
0 -
More than you'll want to know about ki-67 and cell proliferation.
http://jco.ascopubs.org/content/23/28/7212.full
Mine was 90%
0 -
Mine was 99% and I am not concerned. That article was from 2005 and stuff dated last week can be out-dated.
My surgeon at MSK gave it no significance, and I have stated the reason why innumerable times in here.
I hope people are not stressing over something of questionable significance. Additionally, TNBC is typically Grade 3 and Ki-67 is just another indicator of this.
0 -
Well to be more specific, Ki-67 is a molecular marker, a protein that reveals accelerated cell division.
Whether or not it's a predictor of anything else seems to be unclear. It's probably of more interest to research scientists than to physicians developing treatment protocols.
You can make an argument that it has no significance, but I wish mine was under 10 rather than 90. I might not have had the rampant spread that occurred in a matter of a few months.
0 -
Thanks ladies for the info.
I am currently on Avastin,carbo Abaxene, ...in a study..Anybody else on this treatment.. every monday for 12 weeks. one week 2 meds, next week 3. only 5 total dose's of avastin... 5th dose tomorrow:)
happy new year to all...
0 -
Mccrimmon.....I have two more left. This Thursday and then next. This will be my third time "finishing" treatment. I hope this one sticks! Third times a charm!
Kymn....Welcome back! I hope all went well with your treatment and you are feeling well. Congrats on your canniversary!
khs113.....I was set up to scan every 3 months for the first two years. Now I think they will have me on a monthly basis for the next few months to monitor the effectiveness of my last chemo. I also molest myself every morning. If I find even the slightest, anything, I call my onc and he has always been receptive to a look see. I just love my medical team!
Bak94.....shoot I was just at Swedish today for a shot. How long will you be in? Can I do anything for you? I mean anything, just say the word. Please call me any time. Sending you healing energy!
0 -
I suggest NOT posting personal info like phone numbers here - anyone and I mean ANYONE can read our posts. Use PMs for this stuff is my advice.
0 -
thanks gillyone......good point! I am very much a positive person and often forget that there are people out there that would troll a site looking for someone like me who foolishly posts personal info without thinking.0
-
Thanks inmate! I am good right now. My port was infected. Did I already post about that here? It popped like a bad zit and was really disgusting. I am hoping I will heal now and be able to go home soon. I never have stayed in a hospital this long, and I don't even feel bad! Kinda bummed I don't have a port anymore, as now I have lymphnodes out on both sides. Done with chemo for now, but still get zometa and blood draws.
0 -
Bak 94......sorry to hear you lost your port. How the heck did it get infected? Can they put in another one after you heal?
I can drop by magazines, coloring books or sneak in your favorite food. I will be back a Swedish on Wednesday and Thursday but can come anytime as I live fairly close.
I hope you heal quickly and get to go home soon!
0 -
Bak- I lost my port too due to infection- 5 days after last chemo. Did they leave the removal incision open to be packed everyday? Mine took 7 weeks to heal and I carried my arm by my side because it hurt to move and I ended up with a frozen shoulder- so.... keep that arm moving!! Hope you heal quickly!!
0 -
Hi all..just found this thread and thought Id share my story as well..I am a TEN YEAR TN survivor..dx at 42, stage 2B grade 3, 1/33 (too many lymph nodes removed) ..and one was positive. Had a mast and chemo..a month after chemo ended I woke up with swollen eyes-this continued and got worse..long story short my port had collapsed (superior vena cava syndrome) and the blood that was pumped up to my head could not drain out. After two days I finally was sent to the er, yes I drove myself! waited 5hours in the Er to find that I was very lucky to be alive as a stroke is very likely with this problem! surgery...and a two week hospital stay! ended up with a staph infection and myrsa! I was one sick lady..couldnt walk for months..it was a difficult time. It was a year later that i decided to have my recon..and I was happy that I did! Hysterectomy a year later, and the following year my gallbladder removed. I was put on tamoxifen and then aromisin because my doctor (in error) thought that because my status read 5% er+ that I should go for the meds..WRONG! Ive since learned that 5%is considered a lab error, and that I should not have been given those meds..anyway 4 1/2 years on the AI and I quit! i was in so much pain..joints and muscles made me feel like I was 100! I somehow continued my exercise program..draggin butt to the gym everyday, and Im glad I did! I now enjoy my workouts 6 days a week and do everything from boot camp to spin! My body feels better although there are times when I have flareups of pain..some neuropathy in the feet causes my feet to burn, and i constantly have a current like feeling in my legs and now arms- insomnia is my middle name! I continue to see my Onc every 4 months..he really doesnt know what to do with me..runs some blood and tests only when I complain of something excessively. So far-alls been good! Ive seen so many milestones with my kids that I thought I might not..My daughter just got engaged, and on now to planning a wedding!!!! Ten years have gone ..sometimes it seems like yesterday, and sometimes a life time ago! I do what I can do to ward off a recurrance..I eat healthy, exercise, laugh often..belly laughs feel great!, i love yoga and kayaking! i take vitamins, i try not to take any meds..but most of all i love being with my family and friends!
wishing you all peace, love and happiness in the new year!! keep the hope!!!!!!!!
Patti 0 -
Thanks so much for posting, Patti! I really needed to hear that!! You really went through some rough times and came out the other side! Happy New Year!!
0 -
Wow, how scarey! My mo wants to put me on tomaxifen with er 3%.
0 -
Tif, they loosely stitched it up so it could still drain. 7 weeks?! How long were you in the hospital?
0 -
Bak- I was never in the hospital. As soon as I noticed the redness, my onc had me come into the center everyday (the weekends I went to the hospital) for 14 days for IV Rosephyn and vacomycin-probably spelled those wrong. It really sucked. I almost think being in the hospital would have been better as I live 45 minutes from both the cancer center and the hospital my onc is affiliated with. My removal incision was left open to discourage staph build up. I had to pack it every other day with this stuff called Silvercell. So it basically healed from the inside out. It was a huge pain in the butt and I have a pretty good size scar. What are they giving you for the staph?
0 -
Tiff, I had a problem with my lumpectomy, it opened up completely and got infected. I spent a week getting the IV antibiotics then the weeks between my 5th and final chemo I had an unexplained fever and had to do the Rosephyn and Vacomycin everyday. I was a terrible experience.
0
