Calling all TNs
Comments
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Bak - I had a staph infection in my bad boob about a year after surgery. Very painful and had major antibiotics including daily shots in the butt. However it cleared up and all is fine. So sorry you are going through this.
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Bak - speedy recovery wishes.
Riley- thanks for the aspirin heads up. I stopped my AI and felt 90 percent better, in 3 days!
Wishing everyone all they need, in the New Year.0 -
I think my malfunctioning drain let bad bugs in! At first they thought my port was infected also and I would need it out, now they think it is ok. Hope I get to go home tomorrow. Don't want to start the new year in the hospital! Thank you for all the good wishes. I actually feel pretty good, just tired and bored.
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Bak - do you have Netflix? It keeps me company in the hospital.
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Bak- so sorry you are in the hospital. I hope you go home today. Thinking of you - here's a big hug. I had a staph infection years ago, following my hyster - I went to the ER the day before admission for staph, showed them the read streak that suddenly appeared above my incision site, and they sent me home. The ER nurse told me that I just needed to give recovery time. I was in the ER again the next day - my incision had burst open - The same nurse asked me why I was back - I pulled back the covers and she said "oh", as she looked at my open incision - at least the people in the ER believed me then! The good news is that the antibiotics worked very quickly.
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Just stopping by to let you know that I read all of your posts daily and you are always in my thoughts even though I am not posting much. A very Happy New Year to all of you and good health to all of us in 2012. Hugs!!!
Mary
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Bak, I'm sorry you are going through a staph infection - hope you get over it quickly. My drain site following uni MX also got mildly infected. I was put on sulfa drugs and it cleared up quickly.
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wishing all my TNS a Happy New Year full of blessings and good health.
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Happy New Year every one! May 2012 bring us all renewed health and happiness, and maybe a few miracles thrown in.
Bak - take care of yourself, I hope that infection clears soon!
Had my treatment yesterday and some good news - my tumor markers dropped 30%, and when my MO sent me to possibly have some fluid drained from my bloated abdomen, there wasn't any there. So I don't have ascites, yay! The bloating is likely a combo of steroids (down to 0.5/day) and chemo. My MO thinks my body is just struggling to switch back to steroid production and could take a bit - which sucks for my comfort, but is better than ascites!
Have a SAFE night my friends
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Hope everyone enjoyed their holidays. I've been so crazy busy working extra hard on gifts and trying to make this holiday extra extra special for my kids and loved ones. Yes, any psychiatrist could say I went beyond crazy this year. Just another way of saying I went overboard. LOL. I worked on a special pairing for both my daughter and son. They loved them. Actually haven't quite finished my daughters yet.
I haven't started my treatment yet. Came to the sad conclusion that my onc. She had recommended I start the cetuximab which she said would be an out of pocket expense of about $4000.00 a week. Turned out the first dose would be $14,000.00 and subsequent weekly doses would be $10,800.00. I took Navymoms and mitymuffins advise and contacted the drug co. and after paying for my first dose they are 98 percent sure they will cover the rest. However after researching the drug out the wahoo and finding no substantiating evidence that this drug will do anything for me on it's own and needs to be combined with other chemo I let my onc know what my research findings were. This led to a week and a half of unreturned phone calls and unanswered emails. Long story shorter my onc was not only wrong about the cost but thank god, I researched it and found out it would not have helped me anyway. I will be starting the mix of cetuximab /Cisplatin on Tuesday. I'm still working on coming up with the moola for this week but glad the rest will be covered. I contacted a researcher Dr. Vikas Sukhatme,from Harvard (Globalcures.org) and spoke with him at length. He thinks there is a good chance this will work for me. He also strongly urged my onc to prescribe the metformin. My onc doesn't believe sugar feeds cancer but how he explained it to me made so much sense. Take a look at our petscans. They shoot us up with glucose (sugar) and it lights up our cancer. Duh! When I told my onc that I had spoke with my researcher and that he and his wife actually called me from their home at 9:00 at night. She was amazed and for once actually listened to me. She agreed about the chemo combo but never apologized for not doing the research herself. She then really shocked me by saying she is on this board that encompasses oncs from all over the country and she would send out an email to ask their advise on my situation. I was floored and deeply hurt that she hadn't done this. I've come to realize that she wants to think that she is the best and doesn't want to admit that she doesn't know it all and I believe she is too embarrassed to ask for advise. Sloan Kettering gives this woman a million dollars a year for her to do her research. I just think it's really sad. I'm pressuring her to follow up with her offer to email the board. We shall see. This Dr. Sukhatme wants to have all information from every onc, alternative care etc. To be available to everyone who has cancer. I hope it works for all of us some day.
I'm really frightened to start this chemo cocktail but I really don't see what choice I have. The SE's sound very scary. My cancer has spread so fast and my pain is barely helped with all of the morphine. My edema is worse than ever and whenever I take a deep breath I have a horrible pain right below my rib. Wah, wah, wah! I'll quit complaining I'm here today which is a miracle and I'll keep fighting.
I've got major catching up to do on the posts. I've gone back about 8 pages and I've got a lot more to do. Lovelyface- inmate and others that was so intensly sweet of all of you to write such sweet posts. Thank you.
Leeann- how were your test results. Fingers crossed.
LRM- I read your post from12-10 and my heart goes out to you. I hope the new year brings a smile to your face and sunshine in your heart.
Suze- I hope the Halavan continues working for you.
Katheryn- yahoo! On the neg. Lymph nodes and clean margins. Cleaning is a great way to celebrate.
Bac- I hope you kick that staph infection quickly. That is so scary.
Bernie- I'm still laughing at your post. I just loved it.
Heidi- I'm laughing, smiling and may have wet my pants a couple of times at your posts.
Hope- I tried both of those and although they didn't work for me I hope they work for you. The Halavan worked great for a short time for me but we are all different. I talked with a woman from the stage 4 thread and Halavan was working for her for over a year or more.
Mmizerak- this is the place to be. All of these lovely ladies have helped me in so many ways, with helpful advise, shoulders to cry on to laughing my petunias off when I needed it most. The gentle hugs are here for you too!
I know I've missed some of you but please know I'm thinking of you and wishing you all a wonderful new year!0 -
LauraJane,
Wow! What a post! You are wonderful to take your energy, even though you are hurting, to reach out and connect with all of us. I'm sending waves of love and good wishes your way.
How maddening and dissapointing that your Onc was so half-assed about researching your treatment. Do you feel like revealing her name? I think you are only stating facts and as a Sloan Kettering patient myself, I'd be interested in hearing. (but only if you feel like it.)
Wonderful about Dr Sukhatme! Let us know when you start the new treatment and I hope the SE's are not as bad as you fear.
Bak: wishing you speedy healing.0 -
My onc is out of Indianapolis. She works closely with SK. When I went to SK they consider her famous. I believed that she was a good onc I'm just saddened that it seems like her ego has gotten in the way of her performance as an onc. We all want our onc's to do ALL that they can for us but in reality we are all just one of many patients they will treat. I am happy that she is willing to go out side of the box as far as my treatment goes.it's great seeing your smiling face,
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Laurajane great post! I truly hope your new cocktail works for you. I am going to talk to my onc about the metformin and do more research on that. I feel like sometimes we just have to take things into our own hands.
I hope the new year brings you good health!
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Suze- so glad to hear some good news from you- I hope things continue on in that direction! I agree we need to some some miracles this year. My New Year's wish is to see both you and LJ posting on New Year's eve 2012, 2013, 2014 and so on!!
Laurajane- I am in awe of your spirit and perseverance. I pray the new cocktail works wonders for you.
Bak- I had a staph infection in both my knees about 20 years ago- nasty bug, but it does get better. I so wish you didn't have to deal with another problem.
Wishing a Happy, Healthy New Year's to all!!
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LJ- thanks for the update. You sound good and I hope your medical team continue to be forward thinking for you.
I am so tired right now. I had two puppies making a mommy sandwich out of me in bed last night. This bed thing is new for them... usually they are crated at night so the cats can lie on me dusk til dawn, but they have abandoned me for the wood-burning stove on the porch. Traitors.
Anyway, this afternoon I took one of my lesser used horses for a ride and he really tried my patience; he's too smart for his spots. Took me forever to trailer load him (he kept backing off before I could secure the butt bar--- he thought this was hilarious, btw) and then he played games at the mounting block and did a HUGE (and unexpected) rear when I got on. After that he only spooked about a dozen times at three toed horse eating snortyblogs before settling down.
The Rumrunner afterwards at Applebees went a long way towards appeasing me.
Happy New Year!
zzzzzzzzzzzzzzzzz...... not gonna make it til Auld Lang Syne.....
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New Year Resolutions for Pets
15. I will not eat other animals' poop.
14. I will not lick my human's face after eating animal poop.
13. I do not need to suddenly stand straight up when I'm lying under the coffee table.
12. My head does not belong in the refrigerator.
11. I will no longer be beholden to the sound of the can opener.
10. Cats: Circulate a petition that sleeping become a juried competition in major animal shows.
9. Come to understand that cats are from Venus; dogs are from Mars.
8. Take time from busy schedule to stop and smell the behinds.
7. Hamster: Don't let them figure out I'm just a rat on steroids, or they'll flush me!
6. Get a bite in on that freak who gives me that shot every year.
5. Grow opposable thumb; break into pantry; decide for MYSELF how much food is *too* much.
4. Cats: Use new living room sofa as scratching post.
3. January 1st: Kill the sock! Must kill the sock!
January 2nd - December 31: Re-live victory over the sock.
2. The garbage collector is NOT stealing our stuff.
AND the Number 1 New Year's Resolutions Made by Pets...
1. I will NOT chase the stick until I see it LEAVE THE IDIOT'S HANDTo kick start my New Year, I took an IQ test and the results were negative.
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Bernie Ellen- thanks for the laughs! May I add... we will NOT open the gifts before Christmas?
I will show items 15 & 14 to my female Boston Terrier....
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Too funny! I miss my doggies! I have been in the hospital 2 nights now, that is longer than when I had my bmx! I do not even feel sick but I was feeling run down. At least now I know why. Hope they let me out! We watched the fireworks over the Space Needle last night, it was kinda cool. One of the hallway windows in the hospital has a great view! So I can say I was downtown for New Years! Ha ha. I just won't mention it was in a hospital./
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LJ: So nice to hear from you. Your courage and strength is awe inspring. I pray for you every day and hope that the new medicne will finally kick this cancer's a**.
Happy New Year to Everyone! May the year be healthy and happy with little or no SEs. (oh and I hope we have less women joining us this year than last - one less person at a time until no one has this awful disease).
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KS and Tif - right back at you and thank you both!
Heidi- I have such respect for you. A couple of months ago I went to stay with my sis in N.C. Where she raises horses. Seeing all of the work involved blew my mind. Her 10 yr old daughter was up at 5:30 every morning to feed them etc. Before school. The daily cleaning of the pasture, barn, grooming it is just amazing! They are such amazing animals.
Bernie- what a hilarious post. Too funny. Thanks for sharing.
Swanky- thank you. I'm wishing you a wonderful new year too.
Well I've been on this macrobiotic diet for about two months. I even served it Christmas for my family. But, today I am making waffles in my new waffle maker I got as an x-mas gift and this evening I am making traditional corned beef and cabbage and my family will all be here. A great way to start the year. Happy New Year to all of you!0 -
Happy New Year to you all!!
LJ, It's great to hear from you!
Bernie, that's too funny! Thanks for giving a laugh to start the day!
Teka, I'm trying to improve my diet, too. I made a huge pot of veggie soup yesterday in my new slow cooker- I'm going to freeze some of it to save for lunches at work instead of eating take out. I'm slowly weaning off the twice weekly pizza night at work, too (you can see I have a long way to go!!)
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Ann Landers
Let this coming year be better than all the others. Vow to do some of the things you've always wanted to do but couldn't find the time. Call up a forgotten friend. Drop an old grudge, and replace it with some pleasant memories. Vow not to make a promise you don't think you can keep. Walk tall, and smile more. You'll look ten years younger. Don't be afraid to say, 'I love you'. Say it again. They are the sweetest words in the world.0 -
Laurjane: Glad to hear you have a new plan of treatment and I am also glad you are advocating for yourself -- so important to do this to get the best of care. I fired my arrogant, ego-maniac first BS as he gave me the worse prognosis ever. Go with your gut and don't lose hope. BTW: I used the macrobiotic diet a few years ago to get rid of a fibroid tumour and it worked really well and really fast: in one month my tumour went from grapefruit size to walnut size with diet alone. I never tried it with cancer though I radically changed my diet while going through treatment. Hoping all of it works for you. Big hugs!!!
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Love the animal resolutions -- hilarious!!!
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Hope and Debke33.....I am currently taking 5-FU which is the infusion equivalent to Xeloda. It is hard to say what, if any side effects I am experiencing as I am also on Methotrexate, Navelbine and Leucovorin. My insurance would not pay for the oral Xeloda so we opted for 5-FU which they will pay for. I won't know if it's working or not until I am finished (Jan 12th). I did have AC, Taxol, Cisplatin and Gemzar before and those did not work so my fingers are crossed. I have been told that the drugs I am on now are "old school" drugs that have worked for years. I guess there is something to be said for vintage. Good luck to you both!0
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LJ.....the side effects for Cisplatin were not too bad for me. I am hoping the same for you. Sending positive thoughts your way!
Bak94.....Ugh! sorry to hear about your infection and trip to the hospital. Hopefully you are on your way home.
Happy New Year to everyone! Here's to a new year with new challenges........bring it!
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Laurajane: I'm very happy to hear from you too. Please try to stay in touch here and let us know how this chemo works for you. Be a squeaky wheel with your onc... be relentless until she emails who she said she would. That's ridiculous to me. She should be seeking whatever advice she can get on your behalf. It's not that another onc might be smarter, but they might think of something she hasn't. Many heads are much better than one!0
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Hi ladies,
I just started posting on forums this past week, sort of after the fact but better late than never. The week after I was diagnosed I got in front of surgeon, who I really like, and he, after a brief physical examination and review of my biopsy and test results, had an action plan for me. I must admit that the week leading up to that appointment I felt really lost and alone but once I visited with him I felt like I was in good hands.
It was his opinion (and also of my onc I found out the following week) that I should have neoadjuvant chemo, then surgery, then rads. Was surprising but when he explained that the chemo should dramatically shrink the tumor and would therefore make surgery 'easier' it seemed to make sense. He said while mine is a nasty form it usually responds very well to treatment. All images taken thus far show no evidence of spread to lymph nodes or other organs, which is a relief. I hadn't had an MRI at the time of my surgical consult and the dr told me there are about 10 people in line but that he would get me in before I left. I was in in 20 minutes. Was awesome. Really felt like he cared. Considering my gynecologist pretty much blew off my concerns when I first brought them up to him (I was having a twingy pain in my left breast for a couple months, couldn't feel any mass at first but after a couple months it felt ropey - he dismissed it as fluid build up and told me to come back if it continued to cause pain...seriously????) it was nice for someone to finally give a damn.
Anyway, the oncologist was great too - spent a good half hour explaining things to me and my family about what I have and what chemo regimen he had in mind for me. I am currently two thirds the way through a TC regimen - I've had some mild SE's, nothing too jarring, fingers and toes are getting sensitive now and skin is friggin dry (besides being bald). Will be really happy when I'm done with this part of the process!! Groundhog Day should be my last treatment.
Anyway, still have a ways to go in this process but figured I'd join the discussion. Hope everyone enjoyed the holidays! Fight on!!!
Heather
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Heatherweather - Welcome to this thread too.
Wishing everyone a Happy New Year. Thanks for helping me feel less freaked out about being TN. I don't always post, but I try to follow along. Hoping everyone's 2012 is a better year.
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Welcome, Heather!
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