Calling all TNs
Comments
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Hi ladies!
Did anyone see the NEJM article today?
It's about PARP II inhibitors:
Title: Iniparib plus Chemotherapy in Metastatic Triple-Negative Breast Cancer
I can't tell if the link will work or not (it works for me b/c I have access to NEJM articles through work), so someone let me know if they can't get in
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LRM216 - My Med. Onc. had told me once that he wasn't planning on doing yearly PetScans. I wouldn't want to go through false positives, that would be a nightmare.
I have an appointment with the Onc. office on the 13th when they will teach me about Aridimex/Zometa. As they haven't given me anything yet for how they will do survelliance on me. I am hoping they will give me a calendar or something, so that I can keep track. I asked my med. onc. how he will know how well I am doing. His answer - weird - "by my survival". I wanted to hear how he was going to monitor me, would it be blood tests for tumor markers, or just symptoms or what?
Anyway, LRM216, I did go through Angel's posts and read them as I am so concerned how she could be so well and NED in Nov./Dec and then just pass on like that. She said she was NED, all clear on 10/15/10, however, they didn't do scans where she lived. She saw her BS and gen doc every 6 mos. She was BRCA positive and did yearly MRI's. Do you have any more information about why or what happened. I went through her posts, and it was really chilling to read them, doing so very well, going through all the emotions we all go through each day as we write our posts here.
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LRM and Lovelyface - .".. .how he will know how well I am doing. His answer - weird - "by my survival..." ??!! Just brutal isn't it!! I truly want some information on these symptoms or reasons the doctors keep talking about. . I'm not brave enough to hit the Recurrence thread and straight out ask tho.
I'm 57 and have aches and pains all over Of course if I had a headache unlike others, or a lump or rash I would have sense enough to go to the dr. But something small on our lungs, the beginning of bone cancer, etc How the H*ll are we to know? I am trying hard not to be an alarmist, but it has just hit me...I'm riding a crapshot for the rest of my days. Just need some time to get used to the idea. I had always thought I would get some sort of 'alert' thru testing and now that that's not the case, I just have to readjust my thinking. Ugh, the disease that keeps on giving... thank you who have been pm'ing me helping me get thru this shock. Love my tn's here. Hugs
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TNBCRuth and LovelyFace:
I know it feel terribly frightening to you right now, we all went through it after our treatment ended. I walked around numb for quite awhle, petrified almost every hour of the day and night. It eases up considerably.
Your biggest rule of thumb will be the "two week test," and that is anything that is bothering you for two weeks or longer needs to be brought to the onc's attention and between the two of you, it will be decided on whether or not to scan.
Every three month checkup should include your bloodwork at each visit. Mind does NOT test Vit.D every month. It's a very expensive blood test, and she does it every 6 months. My onc also goes over my body -especially all the node areas each visit. You should be having mammos every 6 months - that being one on the cancer breast and the next one on both breasts. Anything else minor such as a cold, etc, that's when you call your primary care.
All each of us can do is have faith in the treatments we chose and were given, and live your life believing that you will remain cancer free. That's all any of us can do. It is what it is, and each of us has done what we could.
LovelyFace - I truly believe Diane (Angelsabove) case was one of those very agressive forms of TNBC (It has definite different subsets - there is not just one TNBC - and they are finding that there are probably even more than they know of right now) Some can be extremely agressive (true basal type) and resistent to treatment, some not as agressive and responds to treatement (basal-like), and then then less aggressive is the true triple negative). A few TNBC gals had their cell types read on their path reports, most do not. (I personally think it should be a given that each pathology dept doing a path report on TNBC differentiate just what type it is, but at this time it is not, in fact most labs do not do it as a standard test). Since Diane's cancer came back just months after her treatments ended, I would certainly have to think that her type was resistent to the chemo - and thus more aggressive, as it was from that point on that she began to worsen. Even when CTCA claimed her to be NED early December, it was just days before they then found it in her nervous system (spinal fluid) and brain, so it spread fast - really fast. But as I stated before, in the two years I have been on this board and the TNBCfoundation.org board, I have never heard of anyone's death happening as fast as Diane's. Can we ever understand why and how fast it destroyed her life and tore apart a family? No, I don't think there will ever be an adequate answer to that, but I don't find it to be the normal outcome of triple neg cancer either.
In time, I promise, you will not be as "raw" as you are feeling right now, and I promise you in another year, you will be writing this to newbies undergoing their treatment as well. Promise!
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Titan: Beetle has been my nickname when I was in high school. I really do not remember how I got the name but it has something to do with the comic beetle baily. I am sure I did something during practice or at school and they thought that the name would be funny.
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LRM- Thanks for the good info. I'm setting out the 2 week rule, tho I have aches and pains that definitely would qualify!! haha NO one has examined any of my lymph nodes since surgery in June. I get bp/temp/lungs/heartbeat and asked, how do I feel? I always said OK, since there wasn't a change from the last time. I feel lousy ALL the time, lol. (other medical issues) Decision made~ I'm changing my onc! I have 3 months to get in with Sloan Kettering this time
Thanks again LRM!!!ps I agree that Diane was the one at the far end of the bell curve. unfortunately.
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TNBC Ruth,
It's sooooo important that you feel that you are being taken care of. If it takes switching, I say do it! This cancer we have is frightening enough, no need to second guess if all is being checked as closely as it should be. That's all we have !!!
Best of everything - always,
Linda
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Ha ha Beetle..they used to call my daugther "Free Willie" because of how she used to dive for the ball when she played basketballl..(not very gracefully).
I just printed off a study about TN's that was authored by Lisa Cary MD from UNC and Eric Winer Mc of Dana-Farber.looking at the pages I printed off the web site is www.Med-IQ-com/a519. Not sure if you guys can access this or not...I kinda said I was an MD to get in there but whatever..I lie alot..(not really).anyway..I going to take it and give it to my ONC when I see him..just in case he hasn't seen it...
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Lovelyface - not sure if this will help....in addition to your path report you can ask your sugeon for his report that was done during/after surgery. My surgical onc gave it to me with my path report, it's really interesting because you're reading what they did to you step by step during surgery, he reported what he saw, tested and did and how I did while I was under anthesthesia. Maybe by reading what he observed and what he was thinking during the time of surgery you will feel better about things. Otherwise, maybe getting a dr that you feel comfortable with and really trust may be something you want to explore.
tnbcruth - My onc had talked to me after finishing chemo and told me that I would worry about everything and to call him if something lingered for more than 2 weeks. I thought to myself, I am not that crazy cancer patient. As it turns out I was the crazy cancer patient. My eyes hurt.....I knew I had eye cancer, turns out it was dry eyes from chemo. I swear if I stubbed my toe I though it was cancer........However, I struggle with a lot of aches and pains and do have an auto immune disorder that gives me a lot of pain in my back and hips and because of that I did have a bone scan, which was clear. It is hard not to worry, but I do find that as time passes I worry less. Hopefully time will help ease your worries.
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I just tried it and it worked! It's actually readable!
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Titan: Itried and it didn't work. Could you please give the website again.
Navy
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Great Open House tonight! (burp)
Everyone *loved* my hair (just washed it and air dried) and said I looked great.
Felt good to be surrounded by so many good and caring friends in my own home.
Lots of good food still remaining.... uh-oh.
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Got a question? I seem to be having tons of up and down emotions...one minute i feel good and on top of the world (as much as one can be) and then the next im sappy and crying over something...is this normal with chemo...I mean im an emotional person, but not quite this emotional
also the tips of my fingers seem to be sore...not tingling, but just sore and i have little black specks in the nails...any suggestions on keeping my fingers nails healthy? im so worried that im going to loose them...im not sure i can handle that and the hair...
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I was told to take Vitamin B6 to help with the nails. Also, you can take bags of ice to chemo and keep your fingers cold while the chemo is infusing, which will reduce how much gets into the tissues of your fingers. Good luck!
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HI All - having an attack of paranoia and wondering if anyone else had this - I had my first Neulasta last Thursday so today was 1 week. My neck and shoulder have been super sore and stiff since Saturday...at first I thought maybe it was the aches I read about from Neulasta, but it seems to be lasting a long time....it's on the same side as my tumor and i've pretty much convinced myself that it's spread to my nectk - not sure if there are lymph nodes in there or not but I've been poking and prodding and I don't feel any lumps just sore. I don't see the onc until Monday and I am sure I'll be a wreck by then....did anyone else have Neulasta aches that felt more muscle than bone and lasted a week or more? Am I nuts?
Thanks - dlcw
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Hi Moe,
My doctor allowed me to take Biotin while on chemo to help with nails,skin and hair. Ask your Onc. About the emotions.... In the beggining I felt like that. Until one day the psychologist from my cancer support group talked about living on the "now" meaning sometimes we get so sad thinking about the future that we forget to enjoy everyday. I thought"wow" ! She is right . After that day everytime that I started feeling blue I would turn the music on loud and dance until I was smiling again. Hope that helps. Hang in there.
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hi janda: I to live in Europe. I just finished with my chemo treatments. I had 6 in all every 3 weeks.
The first 3 rounds were FEC and the last 3 taxotere ( DOC). I had enormous pain with taxotere amoungst alot of other symtoms that almost completely knocked me out. My last taxotere ( thank god ) was end of Nov. Im still having pain in my feet and in my fingers. My hair is slowly growing back.. getting my natural blond back so i look like i have peach fuzz on my head. My eyebrows have gotten thinner and my eyelashes.. well some are still there but not many. Ive been reading alos all these relay and yes it does seem as if in the usa more chemo is given. My chemo started 7 weeks after my operation. Im having my 6th radiation treatment today.. have 32 more to go. I have to go 5 days a week for approx. 8 weeks. Thereafter they will send me a minimal time of 3 weeks to a re-hab center. I live in Germany where are you ?
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thanks ladies, I will ask about biotin and b6...I love the music and dancing idea!
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Moe0279 your still newly Dx it will get better.
From looking at your Dx things look great a small tumor and no node involvement. Partner w/ your Dr. and ask a lot of questions, and jump on the natural ladies chat and do everything you can to keep yourself healthy.
YOU CAN DO IT~!!!
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Moe0279: I feel the same way you do. Most of the time I feel ok but out of nowhere some days, I have a bit of a panic attack and I have to have a good cry. And now if a listen to a song that "means somethig" to me, I cry. But a good friend of mine said to me that you have to let it out. Don"t keep your feelings about all of this inside you. Talk to someone, a good friend or a family member that will just listen and be there for you. And yes, like MonikaV said, listen to loud upbeat music and dance and sing out loud. Doctor Oz said that listening to "loud" music for 20 min per day is good for us and it helps keep us young! I know I do it more often now when I feel I need to go in a happy place in my mind! And for your nails you could try to put a clear coat strenghtener on them. It helps for me.
dlcw: When I was on DDAC, I had to have Neupogen(same as neulesta) shots, 3 days after chemo and that for 7 days every time. And I had aches on all my upper body, from my jaw down for about 4 to 5 days every treatment of Neupogen. I couldn't put my finger on what was hurting inside. Sometimes I knew it was my bones but somtimes I thought it was in my nerves. My skin hurted to the touch. My nurse told me to take Tylenol or Motrin before the aches got to bad. I have now the same aches on Taxol and I don't take Neupogen with it. I get my Taxol on thursdays and every following saturday, for only that day, I ache from my jaw down. It's like if every node in my neck and upper body reacted to the Taxol. Sometimes it's pretty bad so my doc prescribed Dilaudid for when I should need it because Motrin and Tylenol do not work on that pain(but it work on the Neupogen pain). Go figure.... I suggest you talk to your doctor or nurse about it and see if they could prescribe something to help with the pain if the rest doesn't work.
Good luck.
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fighter34, I do have one node involvement that has been there since the beginning..i just haven't change my profile..I'm having chemo first, so im not sure if i will know exactly how many nodes are involved...will they still do a full axillary node dissection..if i have a response..im just not sure how they will tell...
I see the onco this tuesday for check up, is this when they will let me know if they see any kind of response...I also want them to check my vitamin D...do i ask for this or just wait until they mention it...this will be my 4th taxol treatment...will it be to early to tell if there is a response...i just want some kind of change...
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Between the Neulasta shots (and mine got the worse on day #9!!!! Like clockwork) and the chemo - everything you are feeling is totally normal. Mine got so bad on the taxotere (and Neulasts for that too) that I had to resort at one point to actual narcotics I was in so much pain - almost totally debilitated at one point. Nasty, nasty stuff, and I pray to God it just remains a bad memory and I never have to have it again. Not real sure I could muster up the stamina to go through it again, and I mean that!
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TNBCRuth: That was excellent advice: If it hurst longer then...I have been limping around on my foot and was sure it was "something" and it's just a tendon causing me problems. I ache everywhere and feel like what I imagine a 90 year old woman feels like! I do alot of stretching. I have been getting PT for the MX side, I email my Onc with any suspicions, and they are never anything! I am sooooo glad you are going to Sloan Kettering and you are changing Oncs! So important to have great doctors we can trust!!!
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Moe: Aches and pains, a severe case of the blues, all of it goes hand in hand with chemo and BC. It will get better! Hugs!
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HeidiToo: Sounds like lots of fun and now you have made me hungry
Speaking of food, for those of you wanting to lose the holiday pounds, this is what I did for my 30:
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Ladies, Have any of you experienced significant fatique after finishing radiation? I'm soooooo tired. I finished radiation on Dec. 30th (the last 6 were boosts) and I think each day since I've been more tired. Any thoughts?
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Seroma Formation After Breast Cancer Surgery Triples Risk of Lymphedema
Elsevier Global Medical News. 2011 Jan 6, B Jancin
SAN ANTONIO (EGMN) - Women who form a seroma following breast cancer surgery are at threefold increased risk of developing lymphedema, a case-control study has shown. Of 135 breast cancer survivors (26%) participating in the study, 35 developed postsurgical symptomatic seromas requiring needle aspiration. The seromas were located in the axilla, upper chest, and breast. Of the 35 women with a seroma, 33 had a greater than 200-mL increase in arm volume. Based on the International Criteria for Lymphedema Diagnosis, 26 of the 35 women with a seroma had severe lymphedema, 6 had moderate lymphedema, and 3 had mild lymphedema symptoms, Mei R. Fu, Ph.D., reported at the annual San Antonio Breast Cancer Symposium. Patients with a higher body mass index were significantly more likely to form a seroma; however, age, type of surgery performed, axillary lymph node status, and number of nodes removed proved unrelated to the occurrence of a seroma, according to Dr. Fu of the New York University College of Nursing. Lymphedema is caused by accumulation of lymphatic fluid in interstitial spaces due to injury to the lymphatic system as a consequence of breast cancer therapy. Patients dread this common, distressing, long-term, and indeed often lifelong complication, she said. Lymphedema is a syndrome with multiple symptoms. In this study, seroma formation - that is, excessive build-up of serous fluid - was associated with a markedly increased likelihood of the lymphedema-related symptoms of arm swelling, heaviness, numbness, stiffness, firmness, tenderness, and redness, as well as increased arm temperature. Patients with a seroma had a greater number of lymphedema-related symptoms than did women who developed lymphedema without a seroma. A seroma is believed to form in response to surgical trauma and leakage of inflammatory exudates in the acute phase of wound healing. The excessive build-up of serous fluid leads to delayed wound healing, with tissue inflammation followed by fibrosis and necrosis. Current standard management of a symptomatic seroma consists of needle aspiration, which may need to be done repeatedly. The clinical implication of this study is that aspiration of serous fluid isn't sufficient to prevent lymphedema, Dr. Fu said. Further research is warranted on a novel means of preventing symptomatic seroma formation as a means of avoiding the development of lymphedema. Possibilities include the use of ultrasound for early detection and drainage of subclinical seromas, as well as potent anti-inflammatory therapy. Her study was funded by the Avon Foundation and grants from other nonprofit organizations. She said she had no relevant financial disclosures. HeidiToo (who spent the entire day sleeping/reading on the porch by the fire)0 -
LRM216 - As you might know I am East Indian so when I first got diagnosed in July 2010, I kind of heard around my family and friends, who else amongst the Indians had breast cancer. My daughter in law to be, told me of this lady who was her nanny who had been diagnosed in Dec. 2008 of TN breast cancer. She had a recurrence in Dec. 09, exacly one year later, and just this past Aug. - Oct, my daughter in law and her mother were telling me how well she was doing, her hair was coming back, she looked like an actress. She was juicing everyday and was doing very well. Around 12/15/10, she had a third recurrence and now she is dying, doctor gave her one more month time. Her daughter who is a medical student flew from the Carribeans and admitted her mom in a PARP Inhibitor trial going on in Sacramento, through Kaiser. A UCSF doctor helped her. We are all praying and hoping that some miracle might happen and she will make it. But this case totally reminds me of Angelsabove, this has been so quick and fast. From looking fabulous and being extremely active to the quick downturn and to death.
If only doctors could tell us whether ours is basal-type or basal-like or whatever. I did ask my Medical Onc. and he did not know which type I had. However, the Pathologist describes my tumor as having a dumb-bell shape. Wonder what that means. I tried to look it up, but did not find anything. As you know I have insisted on a second opinion so this week, the UCSF (my second opinion place) is testing a few more blocks of my tumor. I still don't think they will tell me about the cell type. I think that should be a must. I just can't believe, now that I have cancer, how things are at present, almost inhumane for cancer patients. Everything should be so thorough, there should be so much more attention, since this is a killer disease.
What bothers me the most is that whatever tests have been given to me, I have to ask for it. I asked that my Vit. D levels be checked, I showed them that the radiologist had recommended on the MRI that there be another MRI in 6 months. This is scary to me that I have to ask - I, being a layman.
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excellent article on seroma. I have one and will be having it drained next week. It is no big deal and I'm not scared. The only issue is..... will it screw up my DIEP surgery later on this year.. crap
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Lovelyface: Are you saying that this woman who is dying had basall type cancer cells? I believe mine is that and I thought all TN's were that. Mine was barbell shaped also. I hear the distress in your voice and I am sorry to hear that you are upset. Wasn't Angelsabove also BRCA which is a more aggressive cancer and has a tendency to come back? Is it possible that this is what this woman has? I don't think that is it matters what nationality we are. Just because this woman is also Eastern Indian doesn't mean you will have a recurrence or the same outcome. You may never have to deal with it or it may come back. We have a 60% chance of surviving. I like to hold on to that fact rather then succumb to my fears that I could be in the 40% chance group. Hugs.
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