Calling all TNs
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LJ - ARGHHHH! That just sucks to hear!! Has your doctor talked about Ixempra or Halaven? They are both supposed to be more effective for resistant tumors. Also, there are several more trials you could try, maybe if you go to Sloan? If you want some links, let me know and I'll PM you so you can take them to your doctor. Otherwise, your attitude inspires me so much! I am also glad you went to NYC, and that I did. It just shows that we have to embrace every day, squeezing every ounce of joy from each moment. Good thoughts coming your way!
Heidi - turn on those lights! Every single last one! We purposely don't have curtains on any of our downstairs windows, and it is so much nicer to see that sun. And don't ever apologize for having your own ups and downs. They are YOURS, and that is still okay.
Bak - I'm quickly coming around to the idea of better living through pharmaceuticals. You needed the sleep, you got sleep, all good. When will you hear about your scans? Thinking of you.
Tif - the doctor at Dana Farber prefers CT scans over PETs. She feels they provide lots of detail when a good radiologist is reading them. Maybe start there with your doctor? I'm sure what you are feeling is normal, but I certainly understand the need to know. I can also say my vision has gotten screwier, and I absolutely have no brain mets. My near vision has gotten worse, and my eyes are dry a lot of the time. Happy Anniversary!! I say set up a day-after celebration
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Thanks Suze! My eyes aren't dry, but it feels like it's an effort just to look around sometimes. I hope the new eye dr. next week can sort it out!
Damn, why do we have to worry all the time! I miss the days of rarely or never thinking about my health!
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Please ladies, info on NYC in the spring, i would love to meet you - need time to save
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I have good news, which I find to be bitttersweet. The word "remission " even came out of my docs mouth. The scan was good. No mention of stage 4 and mentioned how each spot was "resolved". Similiar to my last pet/ct 8 weeks ago, although a couple of the nodes went even smaller. I find it bittersweet because of what others are going through right now, and I just want so badly for Suze and LJ to have a good response to chemo, and of course all others also. I know my situation can change at a moments notice, but i must try to enjoy the news I received today and to stay in the present. Does anybody have any book recommendations for living your life in the present moment? My hubby says I live to much in the past and worry too much about the future. I want to learn to live differenty, but it is so hard to change one's mindset! Hugs to everyone!
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Yeah bak!!!!! So happy for your good news. I am sure that everyone here, no matter what is going on in their lifes, is super happy to here good news. Go celebrate. Hugs.
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Bak, My final ER was 5-10% of cells staining for estrogen with moderate intensity, PR negative, HER negative. Onc said anything over 2% is considered ER positive - which corresponds with what I've read. What I wonder, though, is - is this considered luminal B? I was originally said to have basal type due to 5/6 cytokeratin being expressed. They never changed that on the path report. I'm glad for your good news!! There is a book I love, the Tao of Peace - I also like to start my day by reading a little meditation book that has an entry for each day (when I haven't slept too late!!) - there are so many different ones. That seems to center me for the day.
TifJ, Your symptoms sound very much like mine. I am 3.4 months out of chemo (TAC X 6) I have little tender spots scattered on my ribs and sometimes I have a dull discomfort (even discomfort seems like too strong a word - it is more like an awareness that my ribs are there if that makes sense.) I also wonder if it could be from having one breast (it is on the non-cancer side; the other side was removed.) I have to have the CT scan for a clinical trial I'm considering so that is why it was ordered, but my onc ordered a bone scan for the rib issue. My understanding of a bone scan is that it is very non-specific though - it shows up "something" then usually another test like a CT is ordered to figure out what is showing.
If New York becomes a reality, I might even take a Xanex and fly!! Kentucky is really close, too - I can drive there. I would love to meet all you wonderful women!
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Almost forgot to respond about the vision issues - my vision has been affected since treatment - think it is chemo related, part of it from dry eyes. I now have incandescent (sp?) lighting in my office because I could not tolerate the overhead fluorescent and have enlarged all my desktop icons and text. I also moved my monitors closer to 24" from my eyes which was recommended on a computer eyestrain site which I have been frequenting since chemo. :-). Floaters seem to be more noticeable also.
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I don't know about getting a flu shot while on chemo, but I did get mine last year about a week before starting chemo. They are required this year at the hospital that I work at. You can only be exempted with a Dr's note, and all of mine are saying to get it. My Onc. is also wanting me to get a Shingles shot, gotta call the primary Dr. to get that one though.
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Christina- that is exactly how my ribs feel! I had a uni mx too, but the tenderness seems to be all around my rib cage and extreme lower back. I am on the computer entirely too much- maybe that's part of my eye issue. I am 3% ER positive, but my onc treats me as negative. Thank you!
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I have costrochronditis - TifJ: I have had sternum soreness and freaked out, all the worst scenarios going through my head. I read up, and took double dose of Aleve, and knocked it out in a matter of hours. I told my MO and when I told the Dr how we could know for sure , he said "if it was something worse, Aleve would probably not have touched it." doh. good point. I have worsening vision, but it's just that I'm getting OLD LOL
I go for my second 6 month check up this coming week -- I believe I also have post-radiation and chemo fibrosis in my lumpectomy breast, tissue hard in places. It's totally creeping me out. WIll be glad to get the mammo, and see my MO and breast surgeon, and get this all sorted out. Trying not to obsess, but it's SO hard. I also have lymphedema in my breast area. So it's hard to know what's causing any passing soreness. Arrrggghhh!!!
How have you all who are further out from treatments found ways to not obsess about every sore spot, twinge and strange feeling?
LauraJane, you are so freaking awesome. You're such an inspiration. So many of us thinking of you!!!
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While I find each and every one of us on this thread to be totally amazing women, I must give a shout out to both SUZE and LAURAJANE, in that they are beyond amazing. To have to see you both fighting so much and going through what each of you are having to endure is heartbreaking for each of us, and yet both of you remain such wonderfully thoughtful, loving, funny and compassionate women - with all this weight upon you. I am honored to have both of you in my life, even if it is only over the internet. God bless you both. Very, very special women, indeed.
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Linda: Thank you again for expressing the things I am unable to put into words!
Suze & Laurajane: There are so many combos, so many chemos, and I am in awe of your ability to stay so up and focused and present and still able to come here and support. Hoping for a huge group of us to meet up come spring--New York, Kentucky, you name it-I will be there!!!!
Yep! My eyesite sucks since chemo: permanent dry eyes, low body temp, I now wear bifocal contacts!!! Crazy chemo just ages us beyond belief.
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Laurajane: I was hoping to make it to Kentucky to see the change of seasons-it must be so beautiful to see!!!
Best thing that happened today: My DH played "Master Chef" this morning and made me a decadent breakfast to get my day started. I just love my man!!!
Oh, I forgot to add: He also is making a crock pot chicken for dinner and I cannot wait until it's ready-I am soooo hungry!
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Babs37 So happy for you. I was going to say have a great weekend, but I know you are going to.
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Hi everyone..just have a minute here because still doing the wedding planning..one more week and then I will be able to spend more time with you all...I think about all of YOU all the time..
My daughter and I are watching Mrs. Doubtfire for like the millionth time...she loves all the reality shows plus these kind of movies...in a week..she will be a wife...weird..this is my first baby, my little girl...not sure how I'm going to make it through the ceremony...I'm so glad that I will be here for this..but I'm so afraid that I will choke up and cry through the whole thing..dang this stress! Plus I'm freaking about tripping in my 4 inch heels when I help light the unity candle.
Sorry for the freak out..but that is where I am right now.
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Hey, freaking out over the wedding is a good thing- keeps you from freaking out over....well, other things!
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Chemo Timing Does Not Affect Breast Cancer Recurrence
Elsevier Global Medical News. 2011 Sept 21, S London
SAN FRANCISCO (EGMN) - Women with early breast cancer who are treated with breast-conserving therapy have similar rates of freedom from locoregional recurrence whether chemotherapy is given before or after surgery, based on the experience of the University of Texas M.D. Anderson Cancer Center in Houston.Investigators led by Dr. Elizabeth A. Mittendorf compared outcomes with these two approaches among nearly 3,000 women who had a segmental mastectomy plus whole-breast irradiation at the center in 1987-2005.Results showed that with a median follow-up of 7-8 years, the rate of freedom from locoregional recurrence was high (90% or greater at 10 years) and did not differ significantly between the neoadjuvant and adjuvant chemotherapy groups after multiple potential confounders were taken into account."For appropriately selected patients, we can achieve high rates of locoregional control with breast-conserving therapy," Dr. Mittendorf, a surgical oncologist, commented, adding, "It is important to obtain a negative margin at the time of surgery.""It appears that locoregional recurrence after breast-conserving therapy is driven primarily by [biological] factors and not by the timing of chemotherapy," she said.However, discussant Dr. Barbara Fowble, a professor of clinical radiation oncology at the University of California San Francisco, said that the study was an example of "oversimplification of [a] complex issue ... especially in the era of personalized therapy."She noted that factors such as breast cancer subtype (luminal A, luminal B, HER2 positive, or basal) can influence locoregional control after neoadjuvant chemotherapy with breast-conserving therapy."The identification of patients receiving neoadjuvant chemotherapy for whom mastectomy with or without radiation may result in a decreased risk of locoregional failure [when compared with breast-conserving therapy] is very important," commented Dr. Fowble. "Initial stage, molecular subtype, and response to therapy will impact on outcome."Of the 2,984 women studied, 22% received neoadjuvant chemotherapy and 78% received adjuvant chemotherapy. Those in the former group were significantly more likely to have higher clinical stage and tumor grade, to have estrogen receptor-negative disease, and to have multifocal disease. Median durations of follow-up were 7.2 and 7.9 years.In the neoadjuvant group, one-fifth of women had a pathological complete response, and there was a significant difference between the proportion having clinical stage II or III disease (93%) and the proportion having pathological stage II or III disease (46%) (P less than .001)."Neoadjuvant chemotherapy downstages a significant number of patients with clinical stage II or III disease, presumably facilitating breast-conserving therapy," Dr. Mittendorf said.In an unadjusted analysis, the rate of freedom from locoregional recurrence was lower with neoadjuvant chemotherapy than with adjuvant chemotherapy (P less than .001). For example, the 10-year rate was 90% with the former and 94% with the latter."Although the difference is statistically significant, I would suggest that these are excellent rates of locoregional control in our neoadjuvant chemotherapy patients, particularly considering that they presented with higher-stage disease, higher grade, and [more] ER-negative tumors," she maintained.In a multivariate analysis that took into account clinical and disease factors, the timing of chemotherapy was no longer significantly associated with the risk of locoregional recurrence.Eight factors conferred an elevated risk of such recurrence in this analysis: age younger than 50 years (hazard ratio, 1.9), clinical stage III disease (HR, 2.5), a grade 3 tumor (HR, 1.9), estrogen receptor-negative disease (HR, 2.4), multifocal disease (HR, 1.9), lymphovascular invasion (HR, 1.5), close or positive margins (HR, 2.5), and failure to receive hormone therapy in the context of estrogen receptor-positive disease (HR, 2.8).When women were stratified according to the number of factors they had, there was still no significant difference in the rate of locoregional, recurrence-free survival between neoadjuvant and adjuvant chemotherapy, noted Dr. Mittendorf.Dr. Mittendorf and Dr. Fowble reported no relevant conflicts of interest.0 -
Heidi..I know that I'm stupid...but these reports..what in the heck do we get from them...soo..it doesn't matter when we take chemo...WTF...before, after....doesn't matter.....
It's like with these studies...we are studied..but nothing concrete really comes out of it...do you know what I mean....first nodes, size of tumor blah blah matter, then it doesn matter..then you can take chemo whenever..doesn't matter...
What I'm looking for is something that DOES MATTER...dang it...
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OK-THE BEST THING THAT HAPPENED TO ME TODAY WAS:
My cat surviving 3.5 miles at 50mph on the roof of my Subaru when I went to get some glass cut for the top of the night stands I bought the kids. Why, you ask, did I not see said cat?
Because, dear readers, he was under the canoe that was strapped on top. So, here I am, inching out of the driveway (backing up) so I don't actually run over my two barn cats and, in actuality, one of them was already in harms way. Now I know why Kippy (the geriatric barn cat) watched with such interest as I pulled away. Dorian (second barn cat/part-time house cat) was "dug in" on the roof.
Fast forward 3.5 miles and, after stopping for a traffic light, I hear this plaintiff "meow"...NOT from the inside of the car. I knew I hadn't left any windows open and thank heavens my two Boston Bullies were not with me on this errand. I digress...
Meow...WTF is that?... Meow...CRAP!... Meow....screech, turn into strangers driveway...look under car for cat...MEOW... to my shock (and his eternal gratitude, I guess) I managed to extricate him from under the canoe on the roof.
Good news was he was saved. Bad news is that he spent 45 minutes in a box inside the Mirror & Glass shop while I had the custom work done.
All's well that ends well. He's lost one of his lives and I aged a bit more. Sigh.
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OH Bak, I am thrilled for you!!! Hugs
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Heidi, the poor kitty! No more adventuring for him!
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Suze & Laurajane: I know it has been said already, but you two are both very amazing ladies and my thoughts and prayers are with both of you.
Heidi...that is sooooo funny! We have 3 cats and it always amazes me how we find them in the oddest places.
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TiFJ- My vision has changed for the worse in the last year. I went from 20/20 to needing glasses everytime I try and read. I also had blurry vision with some of the chemos I did. Happy 11th anniversary. I think it's great that your husband spends quality time with your son. Take this alone time for yourself get a pedi or mani, buy a sexy new outfit to wear on a date with your hubby when he gets back from the campout. Hope you have a great romantic date planned!
Bak- Beyond happy about your scans. What a breath of relief. Yeah!!! I'm slowly changing my resistance to meds I think they are the way to go. I'm still scared to start the Lyrica. Possible SE's are suicide, anxiety etc. Scares the daylights out of me. So glad you got a good nights sleep. I took a 5 hout nap yesterday. Has anyone else noticed that pain is so much worse at night? Why is that? Or is it just me?
Suze- I'm going to try and come back out to NY in the next couple of weeks. I want to take advantage of that model I was telling you about from Asia. I'd love the chance to draw her a few more times and maybe hire her for a sculpture. She is supposed to be in NY at least another month. I'll know more when I can go after I find out the new gameplan from my onc on Tuesday. I'll let you know what chemos she is considering for me.
Teka- Visualize!!! We had a fabulous dinner at a wonderful Italian restaurant near Times Square on Tuesday night and then we met for lunch the next day at another quaint little Italian Bistro, fabulous wine and great food and talked and talked. I'm surprised they didn't kick us out. Then of course we went shopping and shopped until we couldn't walk anymore. LOL Suze is so knowledgeable like so many of you on all of this FC stuff.
Swiftbird- Looking forward to hearing great news on your 6 month checkup. Are you doing any lymph draining? Have you been to a PT? Thank-you for the sweet well wishes.
LRM- What a sweet post. It brought tears to my eyes.
MBJ- I can smell your chicken cooking. Yum! You are a lucky gal. I look forward to meeting you both.
Heidi, heidi, heidi- Oh my god your discription was absolutly hilarious. I'm so sorry your cat went through this and I must be a sicko for thinking it's so funny. But I can so easily envision the whole episode from the meow to the scratch marks under your canoe. I'm so happy your cat is ok.
Titan- I am so xcited for this monumental time for you. When my daughter got married I cried and cried with such a mixture of emotions. I hope it is truly wonderful for you. P.S. Practice walking in your shoes around the house so you get used to wearing them. you also might consider scuffing the soles up a bit on the sidewalk sometimes the soles can be a little slick when you first buy them. I'm sure you will do fine. I hope you post pics of this beautiful exciting event.
The best thing that happened to me yesterday besides walking Charlie was having dinner with my son and then watching movies with him. I made enough popcorn for the whole neighborhood LOL and we munched on chocolate covered raisins too. I fell asleep half way through the movie but woke up for the ending. LOL. It was a nice feeling having him there next to me especially on a Friday night. My boyfriend had to leave yesterday to go back to NY. The house is kind of lonely when he isn't here and my son usually has plans every week-end. So this was extra nice. The world music festival is this week-end but I just didn't feel up to going. Maybe tonight? Hope you guys all have a great week-end.
Hey has anyone heard from that gal called prisoner or something like that? I hope she is doing ok. Also has anyone heard from Jen? Wishing them both the best.
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Laurajane- Thank you. I spent the evening watching movies with my daughter (6)! Having a romantic night is a bit hard with a 9 and 6 year old! I was reading up on Ativan last night and it can cause blurred vision and dizziness. I have been taking it too long-since Nov. last year. I only take .5mg a night, but I wonder if this is contributibg to my vision issues? I have been cutting the little pill in half the last few nights. I am serious about weaning myself off. It's good to know I am not the only one with vision problems- I won't worry as much.
I hope you are having a nice weekend!
P.S. Is it Inmate you are referring to? I haven't seen a post from her either. Hope she is okay too!
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Laurajane,
Please keep us updated on what happens Tuesday. I knew that you were a landscape designer but didn't realize you sculpted, too - I've always been fascinated by sculpture and wanted to try it.
Congratulations, Titan! This is a real milestone; I remember how I felt. My daughter and I are still best friends.
Heidi, I'm so glad your kitty is ok! I'm glad you could hear the meows! Bet that will be the last time he wants to go canoeing.
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Laurajane- My doctor prescribed me Lyrica after my radical Mastectomy because of the nerve pain in my arm. If it helps, I didn't have any SE from it.0
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TIFJ- Yes I believe it was Inmate. I hope she is doing ok. I've never done the Ativan but I know many others that have used it. I'm surprised with all of the 'scipts I've had that that wasn't one given to me. i do have a 'script for Xanax that I take occasionally mainly on chemo day.
Christina- I'll let all of you know what my oncs gameplan is for me. I love to draw, paint anything that can get my creative juices flowing. I took a fabuous course in Santa Fe last July on figurative clay sculpture. I was able to work on my peice from 9 to 9 every day for a week. I really learned a lot. I loved it and you should try it. I truly love stone carving but I haven't been up to that in a while. Hopefully some day soon I will feel up to carving stone again. That is actually how my boyfriend and I met over 5 years ago. He is a wonderful sculptor and had been coming to Indiana every year from New York for a stone sculpting symposium held here. Indiana has some of the best limestone in the country. It carves like butter. I really miss carving. We have a studio and I look out longingly at it and at my carving tools wishing I had the strength to carve. Some day soon!
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Oh Heidi - if you wrote a book - it would be a best seller, I swear!
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Heidi: Being a cat person, I have to say your story, though horrifying, was also hilarious. I agree-you should write a book, LOL!!!
Tif: Not having children, only cats, I have no idea what it's like but I am glad you had a nice evening even though your DH was away. I am sure, after 11 years together, he will make up for it!
Titan: I agree, better start walking around in those shoes now, even if you are only wearing sweats! Go ahead and cry-just be sure to get some water/tear proof mascara and there is this great stuff called All Nighter that you spray on your face to set your makeup and it helps it last for hours even if you are wet with tears. Hugs!!
Laurajane: I love how you met your BF! Many years ago in another life I had a very multi talented BF who sculpted and I was always in awe of him. It is the one area in the arts where I am a big failure-clay just turns to dry clay in my hands and I can't imagine trying to carve stone. I really hope you can return to this, too!
Your trip to NY sounds like so much fun-I hope you can return to work with your model. Being creative is so soothing to the soul.
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Painting - enjoy the weekend in Bennington - and that BACON. YUM!!
Tif - Ativan, oh my old nemesis. It could easily be the Ativan, especially if you are cutting your dose. I am extremely physically dependent on it, and when I went from 0.5 to 0.25, I really suffered withdrawal symptoms, including eye issues. Now I don't care, lol, but you might want to talk to your doctor about a step-down program using Valium. It can be done in smaller increments that way.
Bak - that is such great news!!!! I am so very happy to hear this :-). Please, don't ever feel guilty for having great news to share - yes, I wish Laura and I had better response to chemo, but that in no way negates my happiness for YOU having a good response! Enjoy, celebrate, and please, keep sharing!
Teka - Laura did a great job visualizing - what I would add, is picture a fabulous looking woman stylishly dressed in hat, tank and jeans, blending into the city like she belongs. THAT would be Laura!! We need to post the one picture we took, I'll try and figure it out.
Bernie - I think NYC in maybe end of April beginning of May would be great. Do you think you could swing that? Anyone else?
Christina - I'd do NYC, Kentucky, you name it! Pop that Xanax!!
Linda - once again, you bring me to tears - in a good way - with your amazing eloquence. That you come here and offer support after having gone through so much yourself is amazing - and I truly appreciate it.
MBJ - Master Chef!!! Oh, wish I had one of those. I love cooking and food - we like to do the foodie thing in NYC - but neither of us succeeds very well.
Titan - hang in there!! Your daughter is so lucky to have such a great mom - having young kids, I don't quite know the feeling, but I can imagine. Proud of you!
Heidi - that is one tenacious kitty! I'm glad that all ended well :-).
Laura - Let me know when you get back there, definitely. I know how much you enjoy working with this particular model :-). I'm hoping to go back right before I start this trial, and then again after my first three rounds. Yea, I'm a glutton!! It gives me a nice balance between kids/mom and wife/lush. LOL.
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Ribs are finally starting to feel better, yay!! Best thing that has happened to me today - well, better ribs, lol. Plus some great time spent with my kids this AM, helping with school projects, getting lots of hugs and kisses from my baby girl, and soaking it in. Good stuff.
Have a great day everyone!
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