Calling all TNs
Comments
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I'm so sorry for the ladies having problems. Lovelyface, is your lump on your incision scar? I found a round BB-sized lump, too, but my BS did an US and assured me it was just a bubble of fluid trapped in the scar tissue, likely from my seromas. That was 3 months ago and it has gradually shrunk.
I saw the BS today and he said I looked great and can go to every 6 months since I'm almost a year out from my first MX. I still see the MO every 3 months.
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Riley - My very small lump is almost on the incision scar but a little away really. The thing which worries me is that I never felt this round thing there before. I always massage my scar tissues, that's why I can feel that this is something new or different. Maybe I am wrong. Thanks for telling me that there can be a bubble of fluid trapped in the scar tissue, although mine is in a pretty clean, flat area. My breast is pretty deformed in a way, there is a deep indent, and this lump seems to lie on the indent. I am going to show this to the Rad. Onc. tomorrow at noon and am hoping if she gives me an ultrasound, I will try to have that done too, although I would rather have a good weekend and deal with this next week. I can't stand to hear the news. I am almost inclined to ignore it and maybe this thing will just go away.
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Praying for B9 news for you!
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Lots going on here, my heart goes out to all of you.
My mo said that abraxane works a bit different than the other taxols and is believed to be more effective. The protein it is mixed with enables it to get more into the cancer cells and without some of the bad se's of taxol and taxotere. At least that is how my mo explained it to me. I have had 2 weekly abraxane so far and adding avastin outside of a trial next week. Doc is hoping to get at least 2-4 avastin treatments in. So, laurajane, hopefully it will kick cancer a$$ for us!
OT- I met a 64 year old man today waiting for labs that told me he has only a year to live. He said chemos don't work with his cancer and he has had all the radiation he could have. I did not ask what type of cancer. He kept talking to me and he was so sweet and seemed to be at peace with everything going on. He told me he would be using his death with dignity options when he felt it was time. I was so afraid of saying the wrong thing so I just listened to him and asked what I thought were non intrusive questions. Well, he really opened up to me. The waiting lobby was full and I could tell everyone was listening, I think I even saw some tear up as he was talking. My thoughts and prayers go out to this man I only know as "Lonnie" and to everyone on this board.
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Bak94- You have made my day. I just couldn't sleep last night thinking about how abraxane is like Taxol. I have hope again. How have the SE's of Abraxane been for you? Did you have a new port installed? How was your second diagnosis found? I am going to believe this will kick this FC for us also! The story about that sweet man really hit home for me and I'm sure a lot of us. I'm not sure what "Death with Dignity options are?" What does that mean?
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So much news to catch up on. Bak, lee, LJ... thinking of you and hoping for the best with your treatments.
Lovely, I discovered a bump near my scar line (had Lx) and onc thought it was a bubble around a stitch or something. It went away. Hoping yours is equally inconsequential.
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Hello everyone -
Today I changed me screen name to flautalee because I am a flautist. Best to all of you today.
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LJ - I am so sorry I caused you distress with my comments. I just want you to do well so much. I too am really glad to read bak's comments about Abraxane, as I thought I wouldn't be able to use it myself if needed. I do know it is working well for a lot of TN's.
I can tell you what I know about Avastin as I am on it. My MO doesn't consider it a "miracle cure," but she has personally seem some great results with TNs. She has one patient, stage IV TN, who has been on Avastin alone for over 2 years, NED. It both enhances the efficacy of the chemo, and attacks the tumor by inhibiting blood vessel creation. You and I have very aggressive cancers LJ, and my MO told me that in her experience, this is where Avastin really does a good job of cutting off blood supply. She really wanted me on it. I am so glad your doctor is giving it a try! It can have some serious side effects, so they will monitor your blood pressure and urine for protein, but so far (2 doses), I have had no ill effects.
Again, I'm sorry to cause you worry. Hugs to you.
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I had Avastin on my clinical trial (with taxotere) and after one dose (actually an overdose, lol) the tumor shrank into nothing. Complete response!!! I didn't know this until after I had the bi-lat mx, but probably would have done it anyway since I'm TN and had very dense tissue.
LJ- this may be the one for you!!! Holding my TN sisters in my thoughts~~~
Also, I had 3 pea sized lumps come up about 6 months after exchange and I was freaked out! Ultrasound and biopsy showed it to be necrotic fat. Hoping this for you Lovely!
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Laurajane: Curry salmon & ice cream-wow!!! I am glad you had a great time. I had a non cancerous lump under my arm since I was 19 yo (I am convinced it was the extra breast tissue that should have gone to my breast, not my armpit, lol) and so I had an easy way to compare lumps and the cancer ones felt so different-I just knew. You are right though, we are all different and better to be vigilant and have tests done then to sit around and worry. I have tons of scars and bumps and lumps so I try to remain calm and spend lots of time feeling my own breasts. I have great hopes that the Avastin will cut off the blood supply so you can kick this cancer to the curb. We are all here for you, night and day, call me anytime! Big hugs!!!
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Flautalee: You have all my best wishes for good luck tomorrow and then some. Yours is a truly amazing story. I am sad that it came back, and would not have expected it to all these many years later. Keep us posted and we are here with you and for you.
Linda
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Friends, I'm thinking of you all, and sending love. I want us all to be well.
LauraJane, I had Avastin as part of my clinical trial and don't remember any significant SE's. I have read some accounts of Avastin working when nothing else does.
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To all you wonderful ladies who prayed for me - I have VERY GOOD NEWS. I showed the lump to the Rad. Onc. and she thought it was probably a scar from radiation. I told her it was something new. Anyway, she could feel it. She sent me for an ultrasound. I called the scheduler and because I wanted this thing cleared today, over with, done with, I told her it was urgent. She put me on hold for a long time and am not sure what she said to whom, she told me to drive to the Women's Health Center, which is what I did. They told me it might take some time, but they will squeeze me in between their other appointments. My very own Doc. Dr. Fish was there, who is keeping a very close watch on me and spends a lot of time with each and every woman, at first told me that he is not worried since my MRI on July 14 showed nothing on the left side, nothing at all. Then he did the ultrasound over the area, although he could not feel the spot and he had to ask me to put my finger there to show him. I guess they put that greasy stuff, so it gets harder to find a deep lump. Anyway, he said he could not see anything, except that this scar is a continuation of another scar, which makes sense, since I could feel this tiny mosquitoe bite sized lump leading into another lump. He said it is all clear, nothing to worry about at all. I am gonna have the best weekend of my life now, I swear I am not holding back on any spending or anything. I am going to splurge.
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Yeah Lovelyface!
Best LJ
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Lovelyface- Yeahhhhh!!!!!!! Thank-you for sharing such wonderful news! Have a great weekend.
I hope all of you have a fabulous week-end. Love!!!!
A friend of mine said, "Laura, dare to be happy, be so happy that people think you're insane because you are laughing and smiling at everything, feel deep penetrating love for yourself" When I asked her how and why she said there is no way something as evil and ugly as cancer can find a comfortable home in a happy body like yours. I really loved that. Feel my smile ladies, hear my laughter and feel my love for you all and of course myself. Narcissistic? Ha! Ha! LOLLOLLOLLOLLOL
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Lovelyface and laurajane, you ladies both rock!!
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Yeah Lovely I am so happy for you!
LauraJane I love that! Thats how I feel too. Tonight some friends I havent saw in a few months took my family and I out to Red Lobster to eat and they just kept telling me how good I looked. They said they really didn't know what to expect, but that I still looked like my old self. lol Of course I did have my wig on though! lol
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Lovelyface - I was going to send you a big cyber (((hug))) for the lump that you found, but I see that you have good news. Yipeeeee........keep the hug for all of the worries you went through.
LJ - I am so sorry the Xeloda didn't work. BC sucks!!! The new regimen that you're going on sounds like a good one and one that I've heard good things about. We'll all be praying that you get good results. In the meantime, enjoy that wonderful grand baby, family time and continue laughing!!!
KS - Isn't it funny how people expect to see us looking all shriveled up in bed looking sick? I always get comments about how I don't look sick and I look great. Of course if I'm going out with friends or family I'm going to put myself together just like I did before BC.......
MBJ - thanks for the info on the YMCA. I think I'll check them out along with another gym near the house.
DD#2 goes back to college tomorrow and I am really going to miss her. We are very much alike, which can be challenging at times, but also makes for a fun time together. She asked me to make gumbo for her last dinner at home tonight, which I did. But, man I hate cooking for a long time in the kitchen during the summer. Even with airconditioning it gets sooooo hot!!! I usually like summer, but this year has been a rough one.........
Hope everyone has a great weekend.
Jenn
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Linda,
Thank you for your support. My oncologist presented my case at the breast tumor board at his hospital this morning and I saw him in the late afternoon. He said the only consensus was that I need to have radiation...but he really believes that I should have chemo and that having a taxane as part of the chemo is the best chance for me to go back into remission. He understands my concern about neuropathy in my fingers. He said that if I begin to experience that side effect, he will switch to another combination for the next round, and that if I can receive even two doses including taxotere it will help me. So...next Friday (8/26) I will begin Taxotere/Cytoxen every 3 weeks for 6 rounds. He was ready to have me say I wouldn't take the Taxotere and would have respected my wishes, but I respect his knowledge and experience and will do as he recommends. His recommendation also echos my surgeon's statement to me that I needed both chemo and radiation. Oh, the cells from the slides in 2000 and 2011 are different, so he is treating this as a new primary tumor, 2 different subtypes of triple negative BC. I will start radiation around Christmas. Best to you all. I guess I now get to join the August Chemo board! LOL!
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Lovelyface! Can you HEAR me? I'm just sitting here with a huge smile on my face and tears in my eyes....YES!!!!! I couldn't believe it would be anything but dang it you just never know..I'm so happy for YOU!
Oh man Lee..chemo/rads again..crap...sounds like your onc is on top of things though...
Have I said I hate cancer lately???
I've got the 5K tomorrow morning..then my DH and I are heading out to a casino in West Virginia....wish me luck!
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Thank you all you beautiful ladies, I think it is your well wishes and love which gave me such good news today. You ladies rock! Have a most fabulous weekend everyone, keep up the good spirits! You guys really ROCK!
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Just a quick drive-by to say:
Yayyyy Lovelyface! That is such great news, and I am so happy you took control of the situation and made sure you had peace of mind. Great job!!
LJ - love it! You go girl.
Jenn - I hope you are able to enjoy these last days with your daughter - I can only imagine the sadness you feel at her going back, mixed with the pride and joy of her accomplishments.
Sorry if I miss anyone!!
~~~
Off to Quechee, VT for a day with my BF and family... posting as my DH is already in the car, lol. Have a fabulous day everyone!!
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Lee:
I wish you the best - sounds like a good plan. When I got switched to the taxotere right after my first taxol, I was very leery that it would help with the neuropathy, and I have to say that it did in that it never worsened the instant fingers and toe neuropathy that the taxol gave me, so that was a good thing, even though the damage had been done, it did stay with me throughout my treatment and about 9 months after. My fingers are fine now (2 years in Sept. since my chemo ended) and my toes still have a bit left. I too was really concerned as I must work to support myself and my grand-daughter, and being a Sr. legal asst. to a head partner in a large busy law firm, I seriously needed all my fingers. So hard to type with numb fingers, as you can well imagine. Keep us posted and hoping that you see full remission with very little side effects.
LJ - hang in there, honey. With your outlook on life and your situation, and this new combo, I fully believe you will see great success. We are all here cheering you on.
Lovely - breathe, sister, breathe - and rejoice.
To all of you - just too many to send individual messages to - know that each and every one of you are in my heart, prayers and thoughts always. I don't post too often, but know that you are always on my mind.
A wonderful weekend to all -
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I did taxotere, cytoxin and adrimicyn? I did not have any nuero effects.
I hope all goes well for you. I also did 1 treatment every 3 weeks and 2 weeks ago when i had my surgery there was NED.! I have to start radiation in Sept.
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Thank you all for your support. I didn't realize that Taxotere has fewer neuropathy side effects than Taxol. My oncologist said that I can't have Adriamicin again because of the cardiac side effects that can happen. I had a MUGA scan 10 years ago, after I had finished chemo (4 rounds of A/C) that showed that my heart pumping action was in great shape, but now I am 56 and not 45, so he is being cautious with my heart. If my 2000 tumor had been now, maybe I would have had chemo before surgery like some of you have. Probably so, because it was about 3cm. Treatments keep evolving. This coming week will be busy - I might have the port put in next Friday right before the first round...but maybe another day during the week.
In a little bit, I'm going to an consultation with my hairdresser - she's the only person who has cut my hair right for more than 20 years. She's going to help me choose a wig and the best color for it so that I can order it right away. Then she will trim the wig to look as closely like my hair as possible. I had her trim my bob to a pixie cut about a month ago - a "pre-chemo cut" of sorts, so that I could get used to shorter hair a little bit AND it will take less time to grow back. Anyway you shake it, loosing your hair is really hard - I remember thinking that I looked so old and awful - but I need to remember that my hair WILL grow back. My photo shows the bob, maybe I'll post the pixie cut, which was my hair cut in 6th and 7th grade. My hair has been in a short bob since 8th except for when it was a longer bob and I actually slept on brush rollers! LOL!
Best to all of you.
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Lee: Very good luck to you with your treatments!!!
Lovelyface: What great news!!!! That just made my weekend!!
Laurajane: Your happy sunshine always pours through on these pages and if you could bottle it and sell it you would be a billionaire!!! What a great cancer cure-love and happiness!
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LJ- Budget work switching from legal field burnt out. Hang in there we are all praying for you. Enjoy the bday party.
Lovely-I am so glad it was just a scare. I know how you feel I use to have a meltdown almost weekly they have finally start to sub-side.
Titan-I 'WAS' in something similar to this, but I couldn't commit toooo much back and forth to the Dr.'s. What l did like about the project is that you got something out of it. Something that will boost your immune. I am currently in the metaformin project. I started last week.
It's starting to cool down in my area. I plan on going to the movies w/ my hubby later on today. Hope every does something relaxing this weekend. Thinking of you all!!!!
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Hi LauraJane, I did not have a port the first time, this time I had to because my veins were shot. So far abraxane has been kind to me, I have done 2 out of 12 so far. Next week I get the avastin with it so I hope I still feel as good as I do now. My second diagnoses was found with a routine mammo, insurance started not paying for an mri after 5 years cancer free from the first time, I think an mri would have found it sooner. my tumor wasn't as big as the first time but already spread to the internal mammary nodes and a node under the im node, which why there is disagreement among my mo and the doc that read the pet/ct scan, my doc says stage 3, the other doc says stage 4
. I am going with stage 3! My surgeon also says stage 3. Oh, the death with dignity is the law where it makes it legal for a doctor to administer a lethal dose of drugs in terminal cases. I don't think it is legal in all states.
Lee, my doc gave me ac again, and I do not know of anyone else that has done it twice. He administered it over a 24 hour period to limit heart damage. I had ac 8 years ago. This time he did a muga before each treatment and I had no changes, but as I understand it the changes can show up years later, so I am a bit worried, but I wanted to go aggressive and the ac got rid of the majority of my cancer according to pet/ct scan. Hopefully the abraxane and avastin will get the remaining! I will have surgery after the abraxane, and then rads, which will include were the positive nodes are. I did not have any nodes show up as positive in the auxillary area, so I hope that is still true after surgery.
KS-Congrats on your news
Lovelyface-Congrats to you too!
Suze-have a great time!
Happy weekend to all, including -Jenn, Riley, Fighter, Titan, MBJ, LRM, Babs, Painting, MityM, Ruth and everyone else too!
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Hey Bak...about the adriamycin...when I had it I asked them if I had had my lifetime limit and they said no...
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http://www.youtube.com/watch?v=WxIt70j_SPk