Calling all TNs
Comments
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Hey Annie and all others on this board:
Thank you so much for thinking of me, and just wanted to let you know that I am fine. Just so busy getting Bryanna through her senior project, all her AP exams. Graduation is coming up May 25th, and then after that it will be getting her ready to go off to college in August. While the slow down in my everyday schedule will be blissful once she is off to college, I also shudder at the thought of her not being here everyday. This will be the first time I will be totally alone since her mom, my daughter Tiffany, passed, so I am a bit apprehensive about that. I figure with all I've been through, losing a husband, fighting off cancer, losing a daughter, I can certainly get through this, plus she's only an hour and a half away, so I'm sure she will be home more than just on the holidays (at least I can hope!). But I'm so proud of all she has accomplished and so thrilled for her that she is approaching the dawn of really beginninng to live her life. Just had my six month mammo and ultra sounds and all was well, as was my onc visit in March. I am on 6 month visits with her since I hit the 4 year mark in February. Insurance company ticked me off though as they refused the yearly breast MRI that my BS still wanted. Reason for rejecting me is that I am now 4 years out and it would merely be "investigative" at this point. Duh! Isn't that what a mammo is????? Also said that because I never had the BRCA testing they were also refusing it. Guess the idiots forgot that they refused that too since I was over 60 and the third reason is a real whopper - because my mother, my sister and my living daughter do not have breast cancer, that also is a reason to deny the mri. Hello - I'm the one with the dang triple negative cancer! Doctor fought it for me to no avail. She too feels they are all idiots.
I always read the posts, and my heart goes out to all the newbies and those hitting another mountain to have to scale. My heart will always belong here with all of you.
Be well, sweet friend and will talk with you again soon.
Love,
Linda
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Thank you for responding Cocker, but I haven't done taxol, just ac. Has anyone had a rash of little blisters all over as a result of ac?
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Teresa - it sounds like you have hand and foot syndrome. I'm glad you only have one more treatment!
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OBXK, I know. I keep looking at my poor hands and feet and think 'if this is what three treatments look like, what will four look like???'
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I do have a rash on my stomach, too, though. I don't know what this is but it's driving me insane!!
Extremely itchy!!0 -
Linda you take my breath away with all that you have gone through and all that you have achieved with your beloved granddaughter. Thank God she had you to turn to for comfort and love when her mum passed. A lot of people couldn't and wouldn't have done what you did and you have my complete admiration. You put her first beyond anything else and that is so commendable. Something will turn up for you to take your mind of her leaving for college and though you are proud of her I am sure she is equally as proud of her Nana. You both deserve only the good things in life now and it will come I'm sure. You are a five star Nana in my book, one of the very best. May good luck, happiness and love go with you both always.
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Jan, it may not be white and it may not have the irresistable sweet expression but the jar reminds me of someone I know!!!0 -
Jan, it may not be white or have that irresistable sweet expression but the jar reminds me os someone I know!!!
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Making treatment choices is tough. I have made several this year - none have worked. My last try was carbo-gem. That did a number on all my blood counts which lead to blood transfusions and self-injections of Neupogen (nasty stuff! I called it, "Neupogen Hell"). The last choice I had to make was between stopping treatment or trying Xeloda. How ironic to have a choice like this, as my onc team acted as though I was crazy for wanting to stop treatment four months ago when they talked me into carbo-gem. Now they are suggesting I stop! Stopping treatment did not seem as frightening when I initiated it - now that the profs are suggesting it, I am scared. My onc does not have much hope that Xeloda will work or that my body will tolerate the intense side effects many suffer. Oh well, at least I can say that I tried.
Sherry
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Reality, I'm new here, can you tell me your story? Have you had surgery?
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Hello, teresa, Sorry I have not been able to respond. Busy "gramma" weekend. I thought I would have a chance to respond this evening, but my sweet little 6 yr old granddaughter just called to ask me to pick her up for a "girls night" at my house. I will respond sometime tomorrow after the school bus arrives!
(briefly, yes, I had a lumpectomy 1 1/2 years ago. My disease is very aggressive and chemo resistant - I have lung mets that continue to grow, in spite of chemo. I will be starting Xeloda this Tues. It is the last resort before stopping treatment and going to palliative care.)
'Talk to you tomorrow-
Sherry
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Sherry...hope xeloda works for you.......please please please
natl...good for you on the 5K...! it so fun...never thought I would say running is fun but it truly is.
Good to hear from you Linda! you are awesome lady...
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Titan of course running is fun. When I sit and watch people doing it I thoroughly enjoy it lol.
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Hi Everyone,
Here is a question and answer session I came across - it's with Dr. Lisa Carey, who has led much of the research regarding TNBC.
This is titled: Current Perspectives on Triple Negative Breast Cancer:
There is some very enlightening information on there, and she mentions 10-year survival rates may be a better predictor and the variables that sometimes affect the stats.
Talk to you all soon!
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Thanks so much for good wishes, Titan!
Sherry
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There is a Xeloda thread on Stage IV forum - very supportive and informative. Also very honest and not sugar-coated...scary at times, but also encouraging at times.
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OBXK - Did you recently add your photo or have I really been out of it? LOL I love it - you look great!
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Hello Teresa, My granddaughter just fell asleep, so I will take the opportunity to post info:
5/11 - found lump during BSE. Could not believe it. Blocked it out for two weeks before calling ob/gyn.
5/11 - OB/Gyn could see the lump before even examining me. Bx. next day at BS office.
5/11 - triple negative status confirmed.
6/11 - 8/11 - preadjuvant chemo - AC/Taxol
9/11 - lumpectomy - clear margins, negative nodes. Six weeks of radiation, 5 days a week. No problems with rads.
6/12 - arm pain lead to bone scan - lung mets suspected - CT scan confirmed. Two lung bxs. One lead to collapsed lung (ouch!!!)
7/12-9/12 - Carbo/Gem chemo - too hard on blood counts - had transfusion and stopped chemo.
11/12-3/13 - completely ignored calls from Onc's office. Had no treatment - needed a mental and physical break!
3/13 to 4/13 - Gemzar alone. Lung disease progressed significantly. White counts very low - neupogen (awful!) injections at home.
4/13 - now: Onc gave me choice to stop treatment or try Xeloda - what the heck, will try it. Onc. is not very optimistic due to agressive, chemo resistant disease. He knows I want honesty, so he gives it to me. I am thankful for that.
Sherry
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Reality, I'm so sorry to hear that. I truly hope that Xeloda works for you. I'm going to keep my fingers crossed for you and please let us know how it goes.
Take care.
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Sherry - I am so sorry you find yourself at the end treatment options. Something all of us at stage 4 know will come, but can in no way prepare for. I just started Xeloda, too soon to know if it's doing anything. I hope it buys us both a little more time.
Thanks for noticing the photo change.0 -
Hello Ladies,
How are you all doing? It has been awhile since I've been on the board and I have had my ups and downs for sure. Still on treatment with some success and some progression.
Karen.....I am on 5-FU which is a form of Xeloda. The fatigue is the hardest for me, but the steroids help. Little walks in the fresh air seem to help a bit, but napping when you need to nap is the ticket. Think cat naps. If you have to take an ativan to get a good 4 hours in. They make the world of difference.
How is Luv?
and how is Cocker?
I have been keeping up with most everyone else through facebook. If you would like to friend me please send a private message and I will give you my facebook page.
Gotta go for now. Love to you all!
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Linda-Your grandaughter is so lucky to have you. I feel for both of you for what you have been through, so glad you have each other. How nice to see her move forward with her life, yet so difficult to see her go, at least she is not far.
The other part of your post makes me mad, because the same thing happened to me. My insurance stopped paying for mri's after 3 years of my first diagnoses. I really feel that if I still was getting mri's that my second diagnoses would have been caught much earlier, but they would not pay, even with my doc fighting for it. I did have a mother and 3 aunts with breast cancer and they would still not pay. Now, basically after having late stage 3, possibly stage 4, my insurance won't pay for a pet scan after having a clear pet scan. They did pay for a ct scan. ALthough I am ok with not having a pet scan, it makes me mad that my doctor wants me to have one and my insurance won't pay!
Reality-thinking of you.
CS-love all the cute kitty photos! And the funny posts, always brightens my day!
Hi to everyone!
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My mate at work who found a lump last week in her breast and under her arm has now had to travel to her home town because her dad is dying. I feel so sorry for her. She has the heartbreak of losing her dad and also has to wait for her results. Must be absolute torture for her.
Inmate so good to see you posting but sorry you had a progression. I hope everything works out well for you. You are such a fighter and never gives up. I hope you do kick this cancers arse.
Bak I really don't understand the insurance in the US. If you have paid in for this how they can refuse you the treatment. Is your insurance pay outs only up to a certain amount and if so why. How can they only pay for say one MRI and not a further one. Can you also go on the public waiting list (that's if you have one).
My wonderful manager at work has now left and we have a new one. Talk about a new broom sweeping everything clean. This one seems like a tough cookie thats hard to chew through. So far I have kept out of her way but would'nt like to get on the wrong side of her. Still we shall break her in no doubt, she won't stand a chance lol
Good looking hat Karen. Suits you. Just love the bow.
My old fellar has got a pain in his hip. Been coming and going for a while now. I thought perhaps its because he is now standing on his feet for a long while at the cafe but now I suspect he may have to have a hip replacement. God knows who is going to feed me if he has to go into hospital lol. Well, I have to think of things like that don't I. Okay Titan enough said!!
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Oh look ladies isn't this just the sweetest poppet
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This is so true for all of us but so very hard to do.
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Inmate: Thanks for posting... great to hear from you! So sorry about the progression, but it sounds like, with that indomnitable spirit of yours, you're coping well with your regimen. We're all pulling for you and hoping that it stops that frickin' BC cold. I think of you often.
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Inmate - glad you popped in.
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Ladies,
Thank you so much for the warm welcome back. I missed all of you and am glad to have made the jump back in. You will be seeing many more posts from me.
Hope all have a great day!
Lotsa love!
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Dolce - Dr Carey is the specialist I consulted after my local recurrence last year. Kind, smart, very thorough. I left the 2 hour consult (!) feeling like I'd talked to the best there was.
Inmate - so nice to see you back! Sorry about the progression, but I know you're one tough cookie - looking forward to more of your posts.
Someone was asking a few pages back about hormonals for low ER+, well I was 1% ER+ and they put me one Letrazole. Side affects were brutal on me, so I stopped. For 1%, it just didn't seem worth it... hope I don't regret that decision.
I'm healed up from my last surgery three weeks ago, got my implant in and looking fairly OK considering all the foobs have been through. Mentally/emotionally I'm still all over the place. I'm 4.5 years out from original diagnosis and I just can't get over - anything. I'm pathetic! I irritate even myself.
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welcome back Inmate! Love to see your posts and still love your avatar.
Phyllis
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