Calling all TNs
Comments
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Even though you are done with chemo, do consider changing dr's Lovelyface! My first BS was a monster--he yelled at me and I cried everytime I saw him--left me full of fear for a month after every visit. Once I found a new BS it was like night and day and I was at peace. It will greatly effect your outcome to know that you are in good, positive hands. Not every dr. has a great bedside manner!
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Damn--- need knee surgery. Figured it was going to have to happen, but now I just want to get it done and over with so I'm back in shape for sailing/driving/riding.
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geeeeez HeidiToo if it isn't one thing, it's another!!! Sorry to hear about your knee. Can you get it done this winter??? By spring, summer you may be able to drive, maybe not ride for awhile though. Wish you the best.
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kelben- *exactly*... I want to get it fixed ASAP so I'll be ready for spring.
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Heidi: Darn it all. I hope they can schedule you soon. Getting it scoped?
Welcome to new folks. Lots of support and ideas here.
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Aw,dang it, Heidi - I am sorry to hear about your knee. Hope you get it all scheduled soon so that you will be up and about and feeling great by Spring.
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Dang--- Now I'm wondering if I should seek a second opinion before I jump into surgery?
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Ha ha Heidi..with a torn miniscus you won't be jumping...must be torn pretty badly to require surgery??? A friend of mine tore his ACL playing volleyball and he has surgery this Friday..he is pissed off too..
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Oh Michelle67...I love your pic! Maybe you can get a pretty cool wig...
I don't know...my wig was so totally NOT ME...I had fun with it...people thought that my DH was seeing another woman! They thought here his wife is going through breast cancer and he is running around with another woman..it was funny..(almost)...
Some days I wore the wig, some days I went topless, somedays I wore a hat...he never knew which woman he was going to be with from day to day...
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Wow, I am shocked at the yelling doctors. I am glad I did not have one of those because, knowing me, I would have yelled right back and it would have been ugly. My onco is really laid back and funny, which has worked well with my OCD personality.
All of my doctors have been incredibly nice and patient. In fact, every single person I have dealt with has been wonderful.
So, for a positive about having cancer - For those of you in the Atlanta area (I know LRM is and maybe one or two others), I found out some interesting information this week. Someone in another thread had mentioned Piedmont's wellness program. I looked it up on their website and it looks great. Much more comprehensive than emory's (which surprised me as I impressed with emory's offerings). I called yesterday and it turns out that it is free to any cancer patient, not just those treating at Piedmont. They have a lot of activities in addition to the usual counseling, nutritionist, etc. There are weekly classes for yoga, meditation, qigong (sp?), and several other exercise type things. There are lessons in ayurvedic therapies, healthy cooking, art, you name it (there are a lot more . . . this is just off the top of my head). Even free massages! Most activities are at their new facility on Howell Mill Rd at I75, which could not be more convenient for me. You can also use their gym at their midtown location and have access to a physiatrist to work with you on your exercising.
Just thought I would mention it. It is about time that I got something out of this entire experience besides a million tests, tons of drugs, a bald head, and getting felt up every day (not in a good way).
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MBJ - You are absolutely right. I have been considering that all day today. This stress is not good for my immune system. I think it is time now to make this change.
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My daughter passed away on 8 January 2011,she had been in a pallative care hospital since Tuesday,she fought a very tough battle,I was there when she went,she was 39 and was still trying to eat healthy food untill the end....it had spread into all her lymphnodes and lungs this evil disease.I will never be the same again,she was my beautifull daughter....Her mum Joanne......I wish all you ladies lots of love and courage on your tough journey.
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I got behind on BCO and this thread. It's comforting to know that...
I'm not the only TNBC patient who has freaked out AFTER treatment was over. Ughhh... every ache and pain makes my mind race. I hate it!
I take Ativan almost every night. My onco's partner prescribed it to me, while going through chemo to help with the nausea and to help me sleep. I have no side effects from it other than a great night's sleep. Several people, including my onco, have warned me that it's addictive. My onco gave me a script for Gabapentin to help with hot flashes and for sleep. It made me feel horrible.
I am not the only person who is cat crazy! I have 5 cats! Well, my name here is Kittycat! Go figure!
I obsess about path reports and TNBC info. Thanks for the article. I pretended for a moment that I was an oncologist and got into the website to read the TNBC info and saved it to a PDF. I am over 50% done reading it. Great info on BRCA1+ and TNBC.
I feel my foob, especially when it starts to twitch (post mastectomy & recon effects). Apparently foob feeling is normal - thank God!
MSK also recommended AC/T for me, as did my onco (well, my 2nd onco - I ditched my first). Of course, having bc a 2nd time and being TNBC, they were "going to throw the book at me!" I did dose dense AC and 12 weekly doses of Taxol (to make my life more bearable).
Okay and not so comforted to know that I did the AC before the Taxol and that study showed a better survival rate among those who had the taxane first. Interesting that most of us that do AC/T, do the AC first. Hmmm...
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friends - I am soooo sorry to hear about your daughter. I hope you can find peace and comfort among loved ones (and us) during this difficult time. As I've said many times "Cancer Sucks!!!"
I have a friend from college who has stage 4 colon cancer. She was responding well to chemo and surgery, but took a turn for the worse last week. She's now at home receiving hospice care. I can't help but think how horrible this is for her and her family (she is married and has 2 children). I keep crying over this because I feel bad for her and it scares the he** out of me!
Here's to good thoughts and prayers for all of us fighting this disease!!
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Hi ladies
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Friends: I am so sorry for your loss! None of us is ever the same once we have had this disease and it isn't any different for our loved ones. Joanne, please feel free to come here and share if you feel the need, as this must be a very difficult time for you and cancer can be such a lonely world. Hugs to you and the rest of your family. 39 is much too young an age to leave this world!
Lovelyface: I am so glad you have chosed to do this! We must all be our own advocates when it comes to this disease and we must feel safe and comfortable with the dr's with whom our lives depend.
Kittycat: I just thought that you were part cat
I have a friend who is also stage 4 but she is still fighting the fight. I would have received the same treatment as you if my cancer returned. I think this study was on first timers and we all just have to accept that our dr's have done everything that they could for us at the time we received our treatments. Titan: I love that story--my DH joked with me how everyone thought he was cheating, too!
Heidi: Hope they can get you in quickly and that you also heal up in time for spring. Hugs.
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Hi MonikaV!
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lovelyface - I agree with MBJ. You have to be your own advocate. I fired my 1st BS after she hung up on me. She was super lame and told me I was BRCA1 negative, when I was actually BRCA1+. Hmmm... I wrote her a "Dear John" letter, so she would stop bugging me. I've seen 2 to 3 of every doctor, except my rad onco. When I had 2 miscarraiges and the obgyn would not even talk to me when I discovered an issue in my 2nd pregnancy, I wrote a letter to him too (and saw a new obgyn a few days later)! I've even seen 2 dermatologists. I had 8 consult with plastic surgeons when I was getting a breast augmentation and 2 other PS's when I needed reconstructive surgery. I will say that my current PS is my favorite doctor of all the doctors I've seen! He's awesome!
Some people might think I'm a little OCD, but now my friends are starting to switch to my doctors!
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Friends.....I am so sorry for your loss, I hope you find comfort in your friends and family. A big cyber hug goes out to you and your family
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You guys are wonderful support, just what I needed. I will post more after my onco appointment Monday. MRI yesterday was loud and boring...!
friends: my thoughts are with you, so very sorry for your loss.
K
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Looked in the mirror this morning and I am in love w/ my new breast. Haven't had the exchange surgery yet, but from what I see I am going to love it. My skin has re-pigmented and everything. The only thing I am missing is my nipples, but hey those will come again.
Anyone else coming to accept their new breast??
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Dear friends,
It hurts my heart to hear about your brave & beautiful daughter. As the mom of two little girls I cannot imagine how you feel. Obviously she was a strong woman to fight so valiantly and lucky to have been your girl. No words can ease your loss, but please know you're in my thoughts and that she no longer has to suffer this awful disease. I picture all bc angels up there helping us continue this fight (we need them!) - they are all free and gorgeous and happy, and one day we'll all be reunited with those we loved so much here.
hugs to you.
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Friends:
I am sorry to hear about your daughter. Can't even imagine how you feel. This sucks. It's not suppose to be this way! My thoughts are w/ you and all the other warriors.
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Hi ladies!
Friends, I'm sorry to hear about your daughter. I hate this disease so much.
KittyCat: definitely I'm a cat person too! And you are now my new hero for putting puffed up docs in their place! I'm so taking a page out of your book next time!
Heidi:
I'm sorry to hear about the knee surgery! I hope you are back in the saddle-literally- by spring (ha ha, I crack myself up sometimes!)Momma fluff--it looks like we have the same dx, and the same timing.
As for me:
I had my port yesterday and first chemo. DD A/C.I'm heading over today at noon for the nuelasta shot.
Nothing seems to be working with the nausea...please give me your tips! I have Emend, Zofran, and Compazine...and I've taken them all. I'll ask the nurses today too, but I just HATE this feeling. And i'm just kind of pissy about it too...that whole 'riding the edge of a knife' feeling...ever present nausea, roiling stomach, mouth salivating like crazy...just waiting to vomit, but never vomiting. (Sorry if TMI).Anyway, I went through this with both of my sons (the nausea from morning sickness, which was really..all day sickness), but like, there was a prize at the end, you know?
And with this chemo crap, I get that there's a potential prize at the end, of the whole, "not dying of BC" ilk, but seriously...does the nausea last the WHOLE time? B/c as it is, I'm 5'5" and 117 lbs. I'm not sure I can live on 1/2 piece toast and 3 zofrans a day, right? Sorry for bitching, I'm just cranky, and a little bit pissy today. Probably b/c I'm nauseated.
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slcst12 - my doc had me add the ativan with the zofran and it seemed to help - we have the same cocktail of drugs and I found that the ativan made the nausea better (sometimes it's not completely gone but bettter). I take it with both the zofran and compazine. You can get it into your system fast by letting it dissolve under your tounge for a sec then taking a drink. Hang in there - last Thursday was my worst day to date and I thought it would never end - not being able to get even a little break from the nausea was the worst!
Good luck to you.
dlcw
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slcst12: Maybe you could ask for pms-prochlorperazine suppositories.It's a antiemetic. My doctor gave me a prescription for it if I ever had to much nausea. I did DD A/C too. For the 2 days following that chemo, I had to take Zofran, decadron and stemitil. I never had nausea during the treatment.
I hope you find something that works for you. Good luck.
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Friends: I am so sorry for your loss.
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Friends: I am so sorry to hear about your daughter, my thoughts and prayers are with you and your family during this time.
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MBJ I have new pic on forum . Let me know what you think?
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Friends - My dear, I am so very sorry to hear of your loss. My mom has come from New Zealand and is here with me, so, being a mother who has lost her beloved daughter, I can just imagine what you must be going through. My mom stays up at night when she hears me cough and is always holding the prayer beads in her hands, always saying prayers. She has to go back on the 29th, so I can only imagine how her heart is breaking. I hope you can take comfort in the fact that she is not suffering anymore. May God bless you and your family at this time, so that you can come out of this stronger and have more faith in the higher power.
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