Calling all TNs
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Early morning misspell "rakhi, chanting and chimes" A form of spiritual healing.
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Thank you everyone for the congrats on finishing chemo and my new picture. I'll post more as my hair grows more. Can't believe it is pretty much all gray. Can't for it to be long enought to dye. Have a good day.
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Swanny - How wonderful to be finished!! I went to the Paul Mitchell academy (nearby) and made an appt. w/ one of the instructors for a free consult. They said we can safely use a Roux rinse to cover the gray. I'm going in later to confim with the instructor and will post his reply. Have a wonderful day everyone!!
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I'M SO SCARED! I spoke with my personal doc today and explained my lymph node pain has increased and my lymph has continued to increase in size over the last three weeks. It had gone down in size considerably I could hardly feel it 3 weeks ago. He told me he thinks there is a chance that my tumor is aggressivly fighting the taxol. I'm so scared. My Onc is off on fridays but he said he will try and reach her on her cell. This is the same whako that couldn't even remember where my tumor was last time I saw her. he said he would schedule an ultrasound if she blew this off. he said the good news would be that if the Taxol wasn't working I would be elegible for the clinical trial he had originally tried to get me in on when he first diagnosed me. It's scary because I have been complaining about my lymphs bolthering me for the last 3 weeks and the nurses just blew me off saying general pain was to be expected. My lymph is now as swollen if not bigger than it was when I was dignosed in May. Told my wanna be boyfriend who suddenly showed up out of the blue yesterday who I haven't seen in a month as I was telling him what my doc said he asked me if I wanted to go see lady Gaga or the rolllingstones.WTF he wasn't even listening to me. When I told him how could he be so cold hearted and who gave a s**t about some upcoming concert he turned around and said I was overreacting and got pissed at me. I guess my BC is a downer for him and he prefers to ignore it. When I first felt my lump and was so scared he thought I was overreacting too. I guess when it actually turned out to be TNBC you'd think he would understand my original concern. I wish you guys were here and I could feel your hugs in person which is all I really need. Ha! I guess that is why I have been feeling so damn good on this Taxol. Man, I just feel like jumping in my truck and driving to the other side of the earth right now.
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My doc had originally called me this morning to let me know that he had talked to my onc to explain that the next time she examine me she should at least glance at her notes prior to my examination so I would have the opportunity to have a little more confidence in her ability to access my tumor size change. Remember when I finished the AC she was saying how much smaller my tumor was and I told her I couldn't feel the change she scoffed and then after my ultrosound she realized that she was wrong. Man, it would be great to have confidence in the person I am counting on to save my life. Thank God for my personal doc he is a close friend also.
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{{{laurajane}}} Can you switch MDs? Also, being on chemo, infection can cause LN swelling. Your counts are low so risk for infection is high... Hang in there.
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Laurajane: Hugs to you. I think Michele is right, the swelling could be caused by a number of things. Hope you can talk to your onc soon.
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Brand new to this group, but, have been reading the threads for months. First time to ever post anything on any discussion group!
About me: Triple negative also. Diagnosed 1/27/10 @ age 63. I work full time in a top level, administrative job @ a university. Always had regular mammograms, active, fit and no family history whatsoever of breast cancer. Had dense breasts and the last several years was called back to have 2nd and 3rd mammogram redos, but, nothing except extreme denseness ever showed up.
Just prior to scheduled 1/10 mammogram, I felt an unusual thickening in right breast. It was sore, but ibuprofen and heating pad helped. Went for regular annual check up and mentioned the soreness to my gyn. He examined it closely and immediately sent me for a diagnostic mammogram and ultrasound. Results came back quickly: large mass in right breast and lymph node involvement under right arm. Immediate referral to surgeon; biopsy confirmed initial reports. Huge mass (10 - 12 cm) but, oddly and fortunately, tumor cells were and continued to remain low grade one.
Surgeon referred me to excellent cancer center @ St. Vincent's hospital in Birmingham, AL. Met with medical oncologist and team and since the tumor was so large, but, low grade - they recommended neoadjuvant chemo to shrink the tumor. 4 rounds of dose dense A/C followed by 12 weekly doses of taxol from February - July. Tumor showed very slight shrinkage. Had bilateral, modified radical mastectomy of right breast with axillary node dissection and simple mastectomy and SNB of left on August 11, 2010.
Although the chemo reduced the evidence of cancer in right breast and in lymph nodes, the mass remained large - 10+ cm with 1 macromastesis and 3 micromasteses in lymph nodes. Clear margins were obtained and no evidence of disease at all in left breast or (left) lymph nodes.
Due to excessive fluid retention after post-mastectomy drains were removed on 8/24/10, have been unable to begin radiation. Developed ongoing seroma on right side in chest/underarm area. Have had fluid aspirated twice a week for the past 5 weeks. Fluid levels are almost at an acceptable level for radiation to begin. Am scheduled for simulation in approximately one week.
Sorry for the length of this, but, just wanted to also indicate how very different a triple negative diagnosis can be from individual to individual. Although very fit and active, I am certainly not as young as most of you! I have no family history and honestly - have never even had a cold or the flu!
Thanks for the opportunity to post. I have learned a lot from reading these posts and hope to be able to communicate with others - especially us more mature/older ones - who, like myself - do not fit the "norm" (if there is one) of a triple negative diagnosis.
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I just came back from being away for 2 days and so many posts to catch up on!
Swanny- Hugs and Congratulations! You are where I cannot wait to be! YAY for you!
Kittycat - Love the hair! You look so gorgeous!
Laurajane - Hugs hugs hugs! Praying for good news, hang in there!
And for all the Target poopers - I am staying out of that store!!!
Had a blood test this morning, my red counts are low, but I refuse to take Procrit. They say I don't need a transfusion at this point, will check the morning of my next chemo (Wed) and until then I'm supposed to eat alot of red meat and green veggies. I can do that - as long as I grind the steak- or else I'm prone to start the constipation - hershey squirt cycle again.
I am going to the beach this weekend and I am going to drink in the ocean air. Hope you all have a good weekend too and NO SE"S ! {{HUGS }} to everyone.
P.S. The stiz bath WORKED! YAY! Thank you sistas!
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mimix3: Thank you for posting and sharing your story. It is amazing to me how much triple negative disease can vary from person to person. I have heard that it can be grade 1 or grade 2, and you are the first I have heard of with grade 1. It seems many people were healthy and fit, like you, with no family history, and then it just shows up. I hope researchers solve this puzzle of TNBC and come up with a cure, or at least a treatment, very soon. Hope you are able to start radiation soon. Good luck to you and I hope you will post again and let us know how you are doing.
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(((((laurajane)))))): I really hope and pray that it's just the chemo doing it's job. I have a very dear friend who has mets and she says she can tell when the chemo is working because it hurts in those areas, but eventually goes away. Hang in there, do your rakhi, think positive thoughts and stay in the present. We are here for you. BTW: It sounnds like you do such amazing things with your work! You sound very talented. Know that the BF may not know what to do so his way of dealing is to do anything, even if it's just a concert, since he knows you love music. My husband was very angry for a long time and we had to work through a bunch of stuff and we are in a much better place now. Not that this lets him off the hook, though. Hope you get through this rough patch.
Dirikujuanita: I understand that Cysplatin is commonly used for mets with TN's. Anyone else have experience with this chemo?
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MBJ your hair is growing fast. Cool!!!!!
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Thanks to all of you for letting me vent so often on this site. Thanks for your hugs and everything else.
Got the call today from Onc. she is as concerned as my personal friend/doc. I get to see her Monday AM. She already made a call to my surgeon in case they decide to go ahead and do the surgery sooner than planned. i guess the main concern is that the increased size of my tumor and especially the lymph growing so much quicker in the last 3 weeks. She explained that she would not be as concerned if it was general lymph pain throughout all but just the one that was diagnosed. It was originally larger than my original tumor and still is. Man, it was so much nicer when I could feel the decrease in size a few weeks ago. It would have been so nice if they had continued to shrink.
MIMIX3- Glad you posted. We are all different ages, grades, etc.. I'm glad you shared your story with us. We are all different and so alike in so many ways. As they say we share a common thread. Ha! Please join us. I am anxious to hear how things go for you. Sending positive thoughts your way
MBJ- You may be right. BF has been trying to distract me all day with talk of anything other than the news I received today. Trying to do all of these sweet things that would have made me happy or cheered me up before it's just that sometimes I really need to talk about the issue at hand. Thats why I love all of you guys. I can just put my fears out there and not have them smothered without having the opportunity to express them. I love sharing my good days with you all to. I hope Monday will turn out to be an unexpected good day with great news maybe hear that the Taxol is working and I have no reason to be fearful. Have a great week-end. Love your hair!
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mimix3 - I am also a Grade 2 and at first they were saying that I was grade 1 and "reworked" my status. It still does not make much sense to me on the Grade 1 and Grade 2 with TNBC....You would think that all TNBC would be a grade 3. I also can not understand how some people change from one type to another type. At first they were saying that I was Her+ and then had other people look at it and they determined that I was a TN.
I also hope I dont upset people when I say this because we are all at different stages in the process but....lately I have been feeling like going thru the chemo was the "easy" part. I finished chemo on 06/16/10 and now anytime I have an ache or a pain, my first reaction is "it came back". I hate being paranoid and do try to think positive thoughts but sometimes its hard to be strong not only for me but for my family! My bones ache and the Doctor said that is normal. Thanks for listening....Kelley
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Welcome, Mimi - sorry you had to become a part of us, but it's so comforting to know we all have each other, because I have definitely seen in my 1 1/2 with this disease, that no matter how much your family and close friends love you, they just don't get it at all - they just don't understand our fear, aches, pains, etc., and doom and gloom that comes with being triple negative and having no targeted drugs for this insidious diagnose. If my sister tells me one more time that I need to be more positive and to be more thankful for my early diagnose, I will scream and go beserk (more beserk than I am at present!). She honestly thinks I am out of the woods, and that I just need to go on thinking I am "cured." Ha! If only it was that easy. I too had yearly mammos - never once had a call back - and just found this dang think in my 2009 yearly mammo - wham - just like that! No cancer on either side of my family ever. Go figure!
And, Kelley - I agree completely with you - I too think the chemo (as disgusting as it was, and I had every SE known to man), was easy compared to trying to get back to living your life everyday without wondering when the other shoe might drop, or questioning every ache and pain you get. I hate what this disease has done to each and every one of us. Sometimes I wish I could see around the next corner, but then again, maybe I don't really want to see what's lurking there! If it's any consolation, I'm a full year out of chemo and my bones still hurt from time to tme- nothing yet that I feel I need a scan for (or am I just going down the river called de Nile) as they go away within hours or overnight. Of course, being a "young" 63 year old just might have something to do with it too!
Wishing everyone of us nothing but the best - always,
Linda
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Swanny -
Great picture! With hair or without, you still have that big, beautiful smile. You look great.
Linda
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Kelly: The aching bones come once the chemo is done, that's for sure! I started out grade 1 jumped to grade three but my final pathology report was grade 2. I have no solid idea what determines which grade except for the info given on this site. For me, I had two grade 1 tumors which the quantity moved me to grade 2 and they suspected attachment to the chest wall which bumped me to grade 3 but my my BS cleared the margines into my chest wall during my mastectomy, which put me back to grade 2. For now my prognosis is good because I have no lymph node involvement, but I have heard of women who have many years out who had many lymph nodes involved, so I think it is a very individual thing.
((((Laurajane)))): It sounds like you have some great dr's and no matter what is going on now, they can address it. I say go with the distractions to get you through the weekend because right now to obsess about it would just not be good for you. Come and vent here if you would like as often as you need because we willo be here to listen always, (even my husband doesn't want to hear about "it" anymore)--Everyone just wants us to be well and I don't think they mean any harm, they are just as scared as you are. Big, big hugs!
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Laurajane, of course you are scared. Post again as soon as you get news, and I hope its good news. I'm glad your doctors are being active about this. It does sound like your BF was trying to distract you with some fun. He probably doesn't know what else to do.
My scary news: my 23 year old daughter just called and said she had found a lump in her breast and was scheduled for an ultrasound. I said all the reassuring, calm things about how common it is to find benign lumps. Then I hung up the phone....and started crying.
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OH Mity..I hope your daughter is OK...my own daughter is 22...she hasn't found a lump but she thinks she has something wrong with her...I wonder if it is because of me? I hate that your daughter has to go through this..I'm sure she is fine though..BC at 23 is so very rare...
MJB..you look so cool..I love your new look...sexy!
OMG..on the Target stories..don't know if I will ever be able to go into one of those stores again..
Laurajane..hugs to you on the stressful time you are going through right now..that really sucks..hopefully..like MJB says it is the chemo working...putting that cancer to death...
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titan: Thank you! I'm not really trying to look cool, it just sticks straight up and out like I stuck my finger in a light socket, so I'm just going with it! LOL!
mity: I agreee with titan, it is rare to have BC at 23. I had a benign lump under my arm since I was 23 and they took it out when I had my MX. I hope everything is okay for you and for her. I was a basket case when I found my lump because it was right after watching that movie Terms of Edearment, but it was nothing for a very, very long time. Hugs.
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Mitymuffin - I pray that all is good with your daughter. Think positive. Like they have already said, 23 if very young for this disease so I really hope everything is fine.
Laurajane - Take care and HUGS your way.
Thanks for all the kind posts from everyone for finishing chemo and my new avatare.
Funny note regarding the Target stories: I have wated The Bucket List twice and the line that always makes me laugh is when one of the main character says "beware of the fart". I know just what he means and it cracks me up everytime. (I don't think young peole get that joke).
Take care all - have a good weekend.
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Mitymuffin- I am so sorry for the fear you and your daughter are facing. I pray all is well. How wonderful though at age 23 she is alert to the importance of self exam. I have heard as well, that it would be very rare at her age as you know to have it be cancer. My thoughts are with you. When is her ultrosound?
Thanks for everyones hugs. Today is going to be a great day! How wonderful to be alive and kickin'! (Yes! The steroids have finally worn off and I actually got some sleep. Can you tell?)
It would be fun to read on here the best thing you did or have happen to you today. Just for the shared smiles. I was kind of getting addicted to the humor. Where's the humor? LOL
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Thanks you all for your kindness. My daughter's ultrasound is next Friday. I looked up statistics and at her age (23) its a 1 in 110, 000 chance of having breast cancer. That should be reassuring, but a Mama worries (particularly a triple negative Mama). I'm still reeling with the shock of my own diagnosis.)
As to best thing today, laurajane, I just got back from riding my horse through the woods, staying out of the saddle and balanced over my legs to strengthen them. My legs feel like jelly, but they will get stronger. I hope you have had fun and done something using your tremendous creativity.
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Laurajane: There is a music festival nearby starting at 4pm--hoping the rain will be done with by then!!! Hanging with the girlfriends!
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Laruajane - Re: the best thing today was going out with my 10-year-old daughter looking for sillybands (they've just caught on in Canada). Tonight is her very first hockey game. I got some gold seats through work for tonight's game (Toronto Maple Leafs versus Detroit Red Wings) at Air Canada Centre. Both my DH and DD are huge Red Wings fans!!!!! We were thinking of taking her last December for her birthday but I had just started chemo and that never happened. They are both very excited and she's wearing my DH's Brendan Shannahan jersey tonight. I'm going to relax with the dog and rent a movie and rest up for tomorrow's Run for the Cure.
Mitymuffin - I know it's hard not to worry but the odds are in your favour of everything being benign with your daughter. I'm sending you good vibes.
MBJ - I love the new look. You've gone from one extreme to another and each look is terrific on you!!!
Mimixx3 - welcome and thanks for posting your story.
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Laurajane: The best thing happened to me yesterday afternoon when I finished my last chemo! At the end the nurses brought me a certificate that said "Congrats" that they had each signed. They each had a bottle of bubbles which they blew at me. I wanted to hug them all. They were all wonderful and I will miss them, but I will not miss the chemo.
Mitymuffin: Hoping your daughter will be fine and is being extra careful and doing her self-exams. This is a difficult time for our daughters. Mine is only 13 and is already worried, even though she doesn't even need to wear a bra yet . . I tell her that by the time she grows up they should have a cure. I am really hoping for that.
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mitymuffin. I totally understand your stress about your daughter. I had a benign lump removed at age 22. I am BRCA1 positive so the chances for my daughter who is 5yrs old are 50/50 that makes me sick to my stomach. I hate to say it but I dread her going through puberty and even getting breast!!!!! My sister who is 37 also recently tested positive for BRCA1 no diagnosis of BC as of yet she is having a MX and immediate recon. She also has 2 daughters and it is our nightmare that one of our girls will be diagnosed. I would take this disease a hundered times over for my daughter to never have it!
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Mitymuffin- I'm sorry your daughter has to wait until next Friday. I know the waiting is so difficult. I can more than understand your concern. I'll be thinking of you both all week. Thanks for sharing your fun today. I smile thinking of you riding your horse. How fun to use those muscles again. I used to love horses when I was a kid but as an adult I have a kind of fear of falling off. I hope the weather was beautiful for your ride. How wonderful to get outside and do what you love.
MBJ- I hope you had a great time at the music festival. I'm glad your feeling better and hopefully kicked that flu bug.
I went to the Farmers Market with my daughter and grandson today. It was cold and rainy but we had a lot of fun. Apple tasting, music and jolly people in spite of the weather. I bought 20 lbs of worm castings and 40lbs of organic tomatoes, seriously! I usually grow them but the ones I had planted in May got pretty neglected this summer so I figured why be bummed about that when I can just go out and buy them. She is going to come back Monday afternoon and show me how to can them. We did it once together and had so much fun. It may end up being really, really expensive tomato sauce in the long run, but I'm sure I will smile everytime I pull out a jar to use. By the way the worm castings are for my garden not the sauce. Have a great week-end.
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TiffanyF4 and MittyMuffin- I too have the BRCA1 gene and worry about my daughter who is 15 and my sister who has the gene also her daughter who is 19! Prayers are going out to you and your daughter MittyMuffin!!
Laurajane - hope you enjoy your weekend and are not stressing too much - prayers and hugs go out to you too.
Lynn18 - Congratulations on your last Chemo!!!! YEAH!!! YOU DID IT!!!
If only the people at Target knew!! LOL ;-)
I think my husband is having a suprise chemo free party for me today!! I am soo sneaky!! Yep I was right he just told me I have 50 people coming over today how nice of him!!
Gotta go - Hugs!!!
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Kad22 - So nice of your husband to throw the party for you. Hope you don't have to do too much work. He seems very thoughtful.
Everyone knows that I won't feel very good for the next week but I hope some of my friends/co-workers will give me a cake or something for finishing chemo. If not, I really need to think about how I live my life (so few real friends??).
Went to the "Owl" movie yesterday. I wouldn't recommend it. Thought it would be cute but ended up being boring. I hear "Salt" and "Town" are both very good and very exciting.
Take care - hoping this week is over quickly.
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