Calling all TNs
Comments
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McCrimmon- ditto what Suze said. I, too, am surprised your onc did the test. Also, pace yourself on your trip. We spent a month in Maine a few months after my tx ended, carriage driving and sailing. I really wished I'd had more energy.... Two years later I am finally beginning to not feel totally drained after over-exertion (walking, long days, etc.)
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lwarstler..I don't think it is such a bad thing to be HER -....yeah..there is herceptin.but I wouldn't be too upset..though I know you are because of all the back and forth crap.
I was on cancermath...and put myself in as neg, neg her postive..and even with chemo the stats were better to be her -.
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Titan, that is what I was thinking about the her2. I know it is upsetting to hear different news and get prepared for it and then have it yanked, but I really think I would rather be her2 neg.
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McCrimmon, don't worry about a high oncotype score. My Onc put the cart before the horse and had an oncotype test done on my tumor before he knew I was triple negative, My score came back as 89. That's freakin high but it just means that as a triple neg chemo works really well on our cancer. At least I won't ever have to wonder if I needed chemo or not!
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After reading about the Onctoype score which you guys are talking about, I am wondering and feeling shocked why my Onc. did not do one for me, especially that I fall nowhere, neither fully trip. negative, nor much on the positive side. He gave me aridimex which has caused me "severe carpel tunnel", yes, that's what happened to me. I think I am a good candidate to get the score done. Can it be done after treatment? I have always wanted to know whether I am positive or negative, and now I feel the onco. score might have been useful to determine that, don't you ladies think?
Suze, I am so happy to hear your good news so far. Keep the good news coming! And 50 is a really great Vit D level, mine is only 30 right now. At diagnosis, it was much lower.
I have to go, can't address everyone right now, but I am reading your posts, ladies, all of them. I hope you are receiving my love and good wishes.
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Well that's the chemo part of my treatment over, well the TC infusions, I still have have to get through the next couple of weeks of side effects, and then go for rads, I think I am getting 20 of those, but its good to see an end, well I am being positive that this will be an end!!
I have got some intersting tips from this site too and will be talking claratin with my Neulasta to help with any bone pain I may get, (neulasta happens tomorrow) and I am drinking so much water and apple choice I think I will explode.
I also love the jokes here and some of your little avatar animals are beautiful, I should try and get my doggy on there.
Take care everyone and even though I'm not a big poster. (lol) I do read often.
Love Marni xx
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Thank you ladies for all of the input on the onco-type score. I do suffer from anxiety and I know I will definitely freak if I see the number. As for my onc, he did tell me he was going to do the test just to make absolute certian I am truly a TN, which I am. I had asked him not to give the the number and he had always respected my wishes. Poor Radiologist, I walked in, explained that I do suffer for anxiety and was pretty normal until he mentioned my onco type was quite high, anxiety kicked in and I couldn't focus on anything else after that. I feel a lot better after hearing from all of you.
Suze, Paris is beautiful, but I think being a mom is probably as perfect as you can get. So glad your not having bad SE's and can spend quality time with your kids.
Hiedi, your jokes keep my spirits up and my husband has always wanted to go to Iceland, I've told him you've posted pics but we haven't had the time to look at them together.
2new4dee-Thank you for the input, your stats are similar to mine and just knowing your past 2 years out makes me feel so much better, mind if I ask what type of chemo you had.
Lovelyface, if your not 100% TN why don't you ask your onc for the test? I wanted that info, just not my score BUT it's expensive and I can't remember what part I had to pay but I think it was around $700.00, I think the test itself is around 5 grand, maybe your doc didn't do it because your insurance wouldn't cover??
Hope everyone has a nice day and a great weekend.
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westieluv: Agree with what Suze35 has said. The important thing is to get through chemo, and the doc probably figures a 3-week regimen is tolerable (and maybe safer, from a risk of infection point of view) for your mother. If she hasn't had a post-chemo neulasta shot (or neupogen) do ask about that though - it helps recover WBCs and it is really the only way that a 2-week cycle is doable. That said, it does cause aches and bone pain in many women, so you have to balance the SE risk versus the benefit of a dose dense cycle. If she did get the shot, and her WBC was still low, then there is not much else you can do except to let your body recover naturally and take the extra week.
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MBJ- it's sunny and beautiful today crisp cool and clear blue skies. With all of the leaves changing it is just gorgeous. I hope your move is going smoothly.
Suze- I'm so happy you are feeling so great. Sounds like a lovely time with your kids. I sure hope you get the Tig too!
Teak- I feel the same way.
Lovely- thank you for sharing.
Lush- my onc told be there are no other options for me as far as chemo at this time. The good news is that the combination of my healer and this chemo is really working. Skin mets down barely visible, and tumors way smaller. Plus my left arm looks normal , no swelling, looks just like my right arm for the first time since last July. I keep staring at it like it's a new body part. Lol.
Mity- it's always so nice to see your smiling face on here.
Heidi- welcome home! You're like the "icing on the cake" just love all of the laughs. Thank you.
Navy mom-great to see you too!
Slaying- so glad you are getting the scan so you will be able to relax. I'm hoping everything is fine.
Titan- I'm right with you on heidis humor
Sugar-"nothing to post", I love reading "doc says ever things fine" these kind of posts brighten my day.
Flautelee- I am saddened you are having to face this beast again. We are here for you.
Leeann-my jaw just dropped to the floor after reading about your ordeal. Man, that's horrible. Sad you had to go through that. I remember once about a year ago they almost gave me a chemo I had never heard of.
Michelle13- nice to see you
Mccrimmon- what a wonderful way to celebrate, going to the most romantic city in the world.
I hope I haven't forgotten anyone. I hope you all have something happen to you today that makes you smile.
The best thing that happened to me yesterday was meeting up with a bunch of my gal friends for dinner. We had so much fun, fabulous wine, good food and laughter. Yup, the best medicine!0 -
LJ: So glad to hear the healer/chemo combo is showing good results - that's wonderful. And you're right about the best medicine being a night out with gal pals!
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Westieluv--I am having 4 rounds of Taxotere/Cytoxan every 3 weeks-- 4th will be Oct 28th (yeah!), followed by 28 radiation tx beginning the Monday after Thanksgiving. For my first triple neg tumor (2000--I am considered in remission from that tumor) I received 4 rounds of Adriamican/Cytoxan every 3 weeks. So some things are still the same, some are different. I haven't need Neulasta because my white blood count actually is going up with the Taxotere/Cytoxan--I think my last count-before I got in the chair for round 3 was 15.9! Has anyone experienced this?
Westieluv-you are a wonderful daughter to be checking all this out for your Mom. She is very fortunate to have you as her daughter.
Would someone explain to me what dose dense chemo is? Thanks. I just have so much trust in my doc so I didn't ask about it. He has kept me alive for 11 years! This time has been easier--my only nausea was when I became hopelessly constipated after round 1. Also, so far I haven't had any neuropathy in my fingers which is really good because my life is playing the flute. I learned
from these boards that Taxotere has fewer neuropathic side effects than Taxol, so this made me trust him even more. At least as much fatigue this time--I need to sleep at least 10 hours a day. But I'm 57 not 46 this time. Best to all of you--have a good weekend!0 -
Flautalee, dose dense means you receive chemo every two weeks instead of the traditional three week cycle. To enable this, you get a shot of liquid gold (aka Neulasta) the day after your infusion to boost your white blood cell production. I call it liquid gold because I was shocked when I saw the claim go through my insurance. Dose dense has shown to be more effective than the traditional cycle. I'm not sure how they determine who is a candidate for it.
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Suze & Luah ~ Mom is 71. Yes it was her WBC that tanked. She also saw her RBC drop some and they encouraged her to take iron supplementation. I am frustrated that the ONC in her area did not send her for a nutrition counselor that specializes with chemo patients. They just tell her to eat whatever she can tolerate and stay away from spicy food. Mom hasn't been the best in the diet department....so any steps she makes are improvements. They did give her Neulasta the day after the 1st chemo round and she got the 2nd treatment on Wednesday with her Neulasta shot yesterday again. I guess if doing the 3 week is all she can do, then it will have to be enough. ONC never talked again about the change in timing and Mom doesn't know enough to ask some questions. She is a compliant little lady and just goes home. I live 2 1/2 hours away from her and the distance and inablility to be there more for her is killing me.0
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LJ:
I second what Teka wrote - so happy to hear that things have taken a turn towards the better. That's wonderful news!
Linda
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OH yeah LJ...!!!
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I'm leaking! I had my mx scars under my arms revised last Wed. Saw surgeon yesterday - all was well. Tonight I took a bath and afterwards I sprung a leak. Like a seroma draining. I taped a panty liner over it and put 2 binders on. Had to change my sheets down to the 2nd mattress pad.
Anyone else ever spring a leak? I guess I call the BS, if it hasn't stopped by Monday.
Saw an internist today for a colon evaluation, I now have a colonoscopy scheduled for the 8th.
I am so tired of going to doctors!!!! Next week, I see 4. Enough already!!!
Thanks for listening. I'm tired and fussy.0 -
OBXK-when I had my lumpectomy I went to bed one night and woke up completely soaked down to mattress, hubby was ready to take me to emergency room, called the on call breast surgeon and he said it was normal, just call your BS. Apparently this happens frequently and you should be fine. Hope all goes well for your colonoscopy
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LJ - I am so very glad to hear you feel the Halaven is helping you out - Yay!!!! Keep us posted when you take a break from soaking up all the time with family and friends
.OBXK - did you get your implants in? If so, that's an obvious concern although nothing that can't be fixed. If not, perhaps you had a pocket of fluid that is draining? Let us know what the doctor says! And good luck on your colonoscopy - good for you for scheduling one! There is a small link between the two cancers, and that is such an easy one to catch early and treat, proactive is the way to go.
Westieluv - given your mom's age and the fact that she already tried Neulasta, it does sound like your doctor is trying to balance her quality of life. I know that with the WBCs under a certain level, they simply can't do the chemo, and unfortunately, there is just nothing to be done to up them with diet
. How does your mother feel about this? I would at least have an honest conversation with the doctor that he needs to keep you all informed as to WHY he is making these decisions. I know it is worrysome not to do what we keep hearing is the "best" regimen, but from what I understand, the margin of effectiveness between the two isn't really that large. Good luck to her.Lovelyface - at this point, I'm not sure the Oncotype would be of use for you. It is really only used to determine if ER+ patients would benefit from chemo - and you've already been through that. It would tell you if you have any ER positivity, but would that change your mind about taking the drugs given your reaction to them? My guess is the number is high (like all of us), and it would worry you, even though it shouldn't. Plus I really don't think your insurance will cover it, and the test is pricey. My vote - know that it really makes NO difference and move forward. I say this with much love and affection
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Off shopping today for a new comfy chair. Time to baby myself while I read and do my needlepoint
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Suzy - I hope you find the perfect chair. I have a ladies sized Barcalounger, it is easy to push into recline and you don't have to use a lever for foot rest. Happy hunting!
Mccrimmon - thanks for sharing. I can imagine your husband being freaked! Luckily, I didn't leak through my binding job!0 -
*waves hi to all the ladies*
Flautee, may I ask a question. First I'm sorry about the new tumor! Did you have a mammogram before the MRI, and did it show anything? I can already see I'm going to have to battle with my onc. If I want annual MRI's but I have dense, fibrocystic breasts, so I'm concerned about mammo's catching anything early. Also my WBC was high during my Taxol treatment.
Lwarstler, I'm sorry for the roller coaster ride they put you through.
Heidi, thank you for that article and I love the humor, it's my best therapy.
Mccrimmon, thanks for the info on onco type scores. I had never heard of them. Your trip sounds wonderful!!!!
Westieluv.....((((HUG))) I'm sorry you live so far from your Mom. Can you have her give her doctor permission to speak with you, so you can call him and help her with her questions?
OBXX, should we change your name to Titantic. Actually, big thanks. I'm having surgery in a couple weeks and I'll make sure to sleep on an incontinence bed pad.
LJ, so happy to hear your positive response! (((HUG))))
Suze, glad to hear the SE, have been mild. I laughed when I read about the comfy chair. I came home with a big comfy overstuffed recliner last night. It's amazing what you can stuff into a Toyota Camry, when your determined enough!0 -
Hope everyone is doing okay and good things are happening for you today.
lee - I was actually wondering the same thing. My onc has suggested the dose dense chemo and I sat there staring wondering what she was talking about. She suggested I come in an learn to give myself the shot required the day before each chemo treatment. Wasn't sure what direction to take as she said the traditional chemo treatments were also an option.
Was glad to hear they prove more successful if I understood michelleo correctly. I'm thinking I may opt for the dose dense if that's the case. I just wasn't sure how agressive the treatments were and if they hit you harder than the traditional chemo, (i.e., hair loss, vomiting, etc.).
OBXK- My BS tells me leaks are a way of your body letting you know the fluid has found a way out. After springing my leak it took a couple of days but it sure started feeling better. I hope that's all it is and nothing more. Don't you love the kotex pad look though? LOL
mccrimmon - Last time I leaked like that was when my water broke right before my daughter birth. ( I am an ex-smoker - and quit before all this started. maybe I shouldn't have given them up huh?)
Heidi- you make my day. I love your creative side and how you're using the little stuffed companion you took along to share in your pics. Tickles me. Did you say, you're on your way home, or off to a different yet more exotic region ? Playing some catch up on the last few days postings. Guess I'll figure it all out as I read forward.
westiluv- I hear people wishing their family was more involved and aware of their conditions all the time. You are so knowledgeable about your mothers circumstance I just know she appreciates and loves you. Just knowing you've taken the time to understand and help probably brightens her days, whether far or near. I know she has to love you to pieces.
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Kathyrnn:
Are you referring to breast MRI's or general MRI? I ask only because I get a yearly breast MRI , along with my mammo's every 6 months (cancer breast - then next six months - both) which my BS informed me insurance allows for any TNBC patient.
Linda
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Lovelyface,
I agree with Suze, don't ask your onc for the onco type test, I didn't realize you had already found out if you had any ER+, that was the only reason why I had suggested it. Not for the score. My radiation dr gave me my score, its folded up and stuck between some other paperwork he gave me, I'm not about to look, I'll just pull it out and shred it. I can't really do anything more than I already am and will have a full blown panic attack if I see it. I already have BC on my mind all the time I don't want to make my constant worrying any worse. I'll just listen to what you ladies have to say.
I start radiation on the 31st, then I won't have another mammo until april, that would be 1 year since my last - I'm 6 months now and just finished chemo, shouldn't I be getting one now?
LauraJane, so glad the Havalen is working for you. Love that your working with a healer too.
Hope everyone is having a great weekend.
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McCrimmon-talk to your BS. My onc says every year, but my BS said she wanted me to have a mammo every six months for a couple years at least.
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Tifj, Ugh, I HATE my BS, he has the personality of mud. However, he was the one that brought up the 6 month time frame and to make an appt with him after I got it done, which I had just forgottenn about until now. I suppose I'll have to give him a call this week.
Thank you, I honestly would never have thought of him.
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So sorry you don't like him, but if he is the only one that will schedule every 6 months-might be worth a call! Congrats on finishing chemo!!
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Donald and Daisy Duck were spending the night together in a hotel room and Donald wanted to have sex.
The first thing Daisy asked was, "Do you have a condom?"Donald frowned and said, "No."
She told Donald that if he didn't get a condom, they could not have sex.
"Maybe they sell them at the front desk," she suggested.
So Donald went down to the lobby and asked the hotel clerk if they had condoms.
"Yes, we do," the clerk said and pulled a box out from under the counter and gave it to Donald.
The clerk asked, "Would you like me to put them on your bill?"
"Thit No!" Donald quacked, "I'll thuffocate!"
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Heidi - this joke really "quacked" me up! I just read it to my DH and we both got a good chuckle. Okay, now back to doing the laundry.
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Heidi, that was really cute!!
Laurajane, I am so glad the healer and the chemo are working!!!
Lovelyface, Do you know how much estrogen positivity you have? If not, can they test it again in the pathology department with staining? I had my original biopsy (core needle biopsy prior to chemo) and was declared triple negative. I was retested after surgery and was told I have 5-10% ER receptors- I had neoadjuvant chemo, then surgery, radiation (last one Monday) and am going to start a clinical trial with more chemo next Friday. Following that, I will be on Tamoxifen.
Flautalee, I'm glad the taxotere is treating you well! It is great that you haven't had to have neulasta!! I liked what Neulasta did for me in terms of my white counts, but I hated the side effects - and I think I still some rib cartilage issues from it.
Westieluv, I am the second opinion queen. My onc recommended TAC every three weeks. At my initial diagnosis, I had a consultation with another onc here in town (I heard he did dose dense) - he was going to do TC every three weeks and said he didn't do dose dense anymore. After chemo, I went to another state to a NCII hospital where several papers have been published on TNBC and they do AC-T but it is also on a 3 week schedule. So I have to believe that there isn't much difference in the outcome, either.
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LJ - Glad to hear the good news.
Heidi - love the jokes and pics. Thank you.
All is fine here - had my 3 month with Onc and 6 month mamo. Everything was great. Celebrated one year out of chem on Sept 30th. It is the date I remember the most.
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