Calling all TNs
Comments
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Reading through all this I suppose I should consider myself lucky. They found the tumor and immediately bumped people to get me into US and did the core biopsy. My PCP took the pain serious and started treating me right away and looking for the reason. Whew. I dont think I would have been able to wait months to find out.
I stopped by work yesterday to turn in my FMLA papers and it was nice. I recently got a new manager and was leary about her when she had me in her office. She was very gentle and kind and let me know she worked with BC for 8 years before she got into management. She wanted to know what they were going to use to treat and we discussed it. She was very reassuring I did not have to worry about my position as she has been told by multiple people how very valuable I am to the unit. She gave me her home number in case I needed to just talk or had questions. I am a workaholic and I told her I was feeling guilty about being off work and the fact they were keeping me off during chemo. I suppose I was relieved in a way when she told me there was no way I could work during Chemo. Especially where I work since we will be getting into flu/cold season during my entire chemo time. Then she told me she made a boo boo and was v ery apologetic. She meant to send an email to the nursing supervisor that I would be on FMLA for an undetermined time but accidently sent it out to all my co-workers on my unit. She didnt say why but just I was on FMLA. I just laughed and said not to worry about it. I had told most of them anyway but it would make it easier to not have to individually tell everyone. I told her she could tell anyone that asked about me it was okay. Whe I left her office to go the desk everyone was stopping me and giving me hugs and even a few of the Doc's stopped me and asked when I was having my surgery and they would stop in to check on me. I dont know if I have put it here but I am an RN and work in our Critical Care Unit and PT Charge Nurse. I am only one of a very few of the experienced nurses that are trained to recover open hearts on our unit.
So today I am just wandering about the house trying to figure out what I should do next LOL>
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kad22- silly girl... everyone knows Tom Brady *is* the Patriots (though Wes Welker is kind of cute too)
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HI,I'm a 51 year old with triple neg stage 2,grade 3. I'm having chem first to shrink it,which seems to be working. Then surgery and rad. treatment. I hope to save my breast but I want to save my life first. Scary about the high reoccurance rate. Has any heard of parp inhibitor effectiveness on studies. Wonder how long before that is out.First you get hit with the breast cancer,then you get hit with the T3-, it a double whamy!
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MBJ- How are you doing? I hope your surgery went smoothly. Thanks for your quick response. I feel so ignorant. How do I get a 2nd opinion? Do I just call another Onc. It takes so long at least a month out on most of them to even get an appt. or do I request my onc do it for me? I don't mean to sound so naive about all of this stuff. I am one of those people that just about had never been sick in my life.
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Laurajane: I just finished my 7th weekly taxol and I also have trouble sleeping afterwards. The nurses told me that it was the steroids they give you with the taxol.
That is interesting that your onc may give you carboplatnin after surgery. I have heard it is a good drug for TN. A few people have chemo before and after surgery.
I have heard that some people have hair start growing back with weekly taxol, but that hasn't happened to me. I am glad to hear accupuncture is helping you, I am thinking about trying that myself. Glad to hear you are feeling better.
RitaD: Welcome, sorry you have to go through this with us, but you will learn alot here. I am also having chemo before surgery. Triple Negative can be scary, but it is not doom and gloom, many women do very well. Chemo works especially well for TN. I don't know much about the parp inhibitors but I hope they are available soon.
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Ohhhh - I guess I have to put it out there - being a lifelong New Orleanian
I AM A SAINTS FAN - GO SAINTS!!!!!!!
Looks like we may have some fun with each other during football season..........
Navy - some of our friends had a terrible time with the Bears fans when we played them in 2006 for the NFC championship game - the stories they came back with were horrible. With that said - I try not to group everyone in the same category and hope that it was isolated.
Laurajane-thanks for the information on the hotflashes - I am taking Effexor, in addition to helping with the hotflashes I have noticed that I have a LOT more patience. I was laughing with the dr and told her that I feel nicer and I'm not sure if it's the cancer diagnosis or the medicine. She laughed and said the medicine and some from the the diagnosis.
I wanted to say that my cancer lump(s) were painful and because I heard and read that cancer doesn't hurt I thought it was a cyst or that I had been drinking too much caffeine. Cancer does hurt!!!
Lovelyface - I'm so sorry to hear you're facing such a tough decision and that your onc isn't giving you better guidance. I would have to agree with the others in that chemo is the way to go with TN. My Grandfather was a deacon with the church and had a strong faith in God as well as the believe that God gives us the power to help ourselves. Meaning we can create our own miracles by using what has been given to us. If you do choose chemo, know that while it's not a walk in the garden it is doable.
Paulding - just wanted to send a (((hug))) your way.
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Laurajane: Surgery went great and I am very happy with the results--thank you for asking!
I know what you mean about getting appointments. Just get some names either from other women who are having treatment or from your nurse or from the center where you are getting treatment. Tell them the urgency of the matter and see if anyone can squeeze you in. I was able to get an appointment where I was having chemo for my second opinion by a PS and through a women's group. I have to say, once I knew what I wanted, I pushed until I got it and all sorts of people came together to help me and doors just opened. Persistance pays off and when it comes to cancer, you just can't fool around. You mentioned that you have an Onc, what about a surgeon or plastic surgeon that you feel comfortable with? Also, many hospitals have help centers for women with BC and they, too can be really helpful. Some dr's just don't get how aggressive and how quickly TN can grow so you do need to act quickly. Best of luck and PM me anytime if you have any other questions.
RitaD: Welcome to our group and sorry you had to join us. We have the same diagnosis and we are the same age and I was wher you are almost a year ago. I had pre-adjuvent chemo TC x 6 and it killed the cancer though the mass still needed to be removed via MX. I had immediate delayed recon with implants 3 weeks after chemo and I just had my implants put in last week and I am doing great! I did lots of research on the parp inhibitors, in fact I have a friend who works in research in the industry who gave me some things to check out--anything to avoid MX--but I found that there didn't seem to be anything out there that has been successful--most of it is experimental and regular TC chemo works great with most cases. I do have a friend on a trial but she is stage 4 its mets and they are trying whatever they can to help her.
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Cathy - Relish the time because soon you will have so many doctors appts. you won't have time to think.
Many of you seem to have trouble sleeping during chemo - one night before and 3 nights after, I took some valium. It worked wonders. Now 4 months later and I still have a hard time getting through the night. I think it was MBJ that suggested melatonin. It does work
I'm sleeping at least 6 hours now. Thank you!0 -
Just trying to catch up!
1)...Ok..Tom Brady is OK to look at..but I cannot STAND Bill Belichek.(spell)..I'm from Ohio and we don't like the Pats or the Red Sox..sorry Heidi..I like YOU!
We are going to have some fun during football season aren't we???? I'm so glad that you all seem to like sports...I'm a sports junkie...last night I was watching the Little League World Series...one of the little boys made an error and he started crying...it just broke my heart....I know that it is great to get there and someone has to lose..(lesson on life).. but they just seem so young....
Good to hear from you Rita..welcome to the TN club! It is scary about the high reocurrence rate....just do what you can and hope for the best...
Cathy..good to know you have an understanding supervisor..that means so much..You are dealing with enough that you shouldn't have to worry about your job. I did work before chemo and went back to work after chemo because I have an office job...my boss told me that he was amazed that I could do that (didn't get me a raise though...just a pat on the back).
I was at work when I could feel my hair starting to fall out...my head felt like it was burning...my hair looked and felt like crap too...but I was sitting there crying and my boss asked me what was wrong and I said my hair is falling out today!..and he said do you want to go home and I said no.......I still say losing the hair was one of the worse things..it was just an outward sign that I was doing chemo and this cancer was REAL...
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Titan - I agree with you. Losing the hair was the worst part for me, too. When I was bald, there was no denying the cancer.
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MBJ: Congrats on finishing your surgery. I am glad you are happy with the results.
I like your advice about getting a 2nd or 3rd opinion. It's never to late to get another opinion and sometimes you do have to be persistant if you want to get in to see certain doctors.
Claire82: Thank you for the suggestions of what to take to get to sleep. I may try one of those. It's nice to get a full night's sleep.
Titan: I know what you mean about losing your hair. My head hurt also when mine was falling back. I know
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Having trouble typing tonight!
MBJ: Congrats on finishing your surgery! I am glad you are happy with the results. It must be nice to be done.
I like your advice about getting a 2nd or 3rd opinion, it is never too late for that and I think you do have to be persistant about getting in to see certain doctors.
Claire82: Thank you for the suggestions of what to take when you can't sleep. I have never had trouble sleeping until now. Glad the melatonin works for you.
Titan: I know what you mean about losing your hair. Mine hurt also when it came out. It's like adding insult to injury, we are already going through so much and then we lose our hair. I know it is worth it in the long run, but still . . . .
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I went to supper last night with my son ,his wife and grandson. SHe is 22 and he is 23. grandson is 15 months. I hadnt really sat and talked to them about the diagnosis and what had been going on. He was getting updates through his sisters. I was amazed at how much they had already looked up on the internet. My daughter in law wanted to feel the tumor which made it real for her. My son just laughed and said uh no I am still in denial mom. I chuckled and said well you only have a few days left for being in denial because surgery is Thursday. I wrote down everything i have been told and gave them a copy. I know my son he will look everything up. When his wife was pregnant he was an expert on everything by the time that baby was born. Even down to how to breastfeed the right way and burp the right way. etc. Never forget whenh he told me I was burping his son the wrong way and he "showed" me the right way. LOL.
They want me to mov e in with them when I go through chemo. I think I would have him choked to death in the first week. Dont get me wrong I love my son dearly. But I dont think I could take him telling me the right way to eat, drink, exercise everyday. LOL.
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Hi all. 9 of 12 abraxane done as of yesterday. Yay! Recurrence sucks, lemme tell you, but it is very doable, so do not fear the beast. Just whip it's ass.
Hope everyone is having a pleasant summer. It's been too hot for me to do much outside with the dang hot flashes and my general lousy mood. I just stay in and watch old movies on chemo weekend, and work through the week.
For those of you on tx with me, hang in there. For those of you done with tx, stay strong and positive.
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Claire: So glad the Melatonin is working for you. It's one of those things that they have done scientific studies on and I even saw a publication in my Onc's office and Melatonin is a hormone that women with BC need! It resets your natural sleep patterns and with the disruption of everything chemo does to you it's a very important tool in our "healing chest". We should all be on some form of Melatonin!!!
Cathy: It's not about being strong right now. Take help where it is offered! My husband, thankfully, works from home and if he hadn't been there, I would not have eaten at all. Not because I was too sick, not because I was too weak, but because I never knew I was hungry until he put food in front of me and then I devoured it. It may have tasted awful, I may have not eaten it all, but it's important to have help. If you want to stay at home, then it's time to round up your closest friends to bring food, medicine, magazines, help clean your house, etc. I sometimes wonder if it's the "strongest" women who get cancer because, up until my diagnosis, I took care of everyone but myself. I wasn't even on the list!
Pauldingmom: Glad to hear you are in good spirits. Hope it all turns out well for you. I don't think too much about recurrence, but every one in a while, like last night, I have a nightmare about it. You are right, we just have to live each day as it comes and fight with all that we have.
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Don't even talk to me about the hair! It's the only time I think that it really hit me that I had cancer and I was sick.
I have a huge event I have to go to in October and my hair is taking it's sweet time coming in and I so don't want to wear a wig or have a bad hair day. Going today to get it colored and the back trimmed up a bit to look less like a bush.
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I just did the same! I think it looks okay - my hairdresser showed me how to shape it - use this waxy stuff called Paul Mitchell Firm Style Dry Wax. I flaten the sides and front near to my face and puff up the rest. My son actually said - nice hair style mom
I cracked up thinking that I could actually have a hair style
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Popping in to thank every one for all the prayers and good wishes. Everything went fine and I'm such a light weight all I wanna do is sleep. The procedure itself wasn't bad. They make you stick around for 2 hours afterwards to make sure you don't bleed out. Turns out the liver bleeds rather easily.
Off to take another nap.
Oh yeah, we are MAJOR BEARS Fans! So go Da Bears.Welcome all you newbies. Ya all sound like you are doing great and I wish you all the best.
Night night
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laurajane - I am the queen of 2nd and 3rd opinions! I have primary and secondary insurance (both PPO's), so most docs are covered on my plans. I asked around for other doctors that might be good to see (and I asked doctors I trusted who they would go to). When I was looking for another onco, I had 4 doctors and a friend who works at the hospital recommend my onco. She specializes in breast cancer. I've met several ladies who see her or have seen her.
When I was looking for a PS, my husband's coworker insisted I see hers. He was very compassionate with her and fixed her reconstruction (she had a bad PS previously). I was so glad I saw her PS. He has been my favorite doctor so far.
Definitely check to make sure whoever you see is on your insurance. I went to see an allergist and forgot to ask this. After filling out 8 pages of paperwork, I found out he doesn't take insurance (he's hollistic). Ooops!!! that was a chemo brain moment for me. I just left and never saw the guy!
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I can't believe what a dunce I am. I can't remember what threads I post to and what I don't. Anyway,I'm back to the TN thread!
I had my successful Partial Mastectomy (some Dr.'s call it a lumpectomy) on Aug. 9 and the pathology was 1 cm, Stage I, Grade III, Node negative 0/2, clear margins. However since I have the misfortune of being Trip Neg, I was told my my BS that I have to comply with chemo and radiation. I saw my Onc Rad Dr. the next day, loved him (although he is older but man is he smart and caring) and loved his facility and staff so, when chemo is over and I start rads, I think I'll do fine with them. I see the Medical Oncologist on Sept 7. Dread, dread, dread chemo. But hey, the up side is if I have cancer anywhere else it might kill it right? We can hope huh?
So, this is my last week of freedom coming up. I'm going to eat rib eye sandwiches, onion rings and funnel cakes at a local fall festival next weekend before the chemo pukes hit and I won't want anything. I might go shopping one day this week with my girlfriend and keep my Sweet Pea grand daughter one day this week. I also want to go to my local beauty shop that is an Am. Cancer Society provider for a free wig and additional accessory. Might as well get the wig even though I'm not sure I'll ever have it on. I've heard they are itchy and hot. Wish I was brave enough to go out with a bald head when it happens. But, my past employment a bunch of years ago was as a beautician so hair is pretty important to me. That is going to be hard for me, to lose my hair but if it saves my life, I'll deal.
Hubby is bbq-ing ribs on the grill tonight so better go see if he needs help. Sorry I lost my way back to here but I'm feeling pretty good after surgery. A small seroma under the arm that she did the nodes on but I think it is getting smaller as she said it should that my body would absorb that fluid.
Great weekend everyone.
Juanita
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Good day for me today. After this week's recurrence scare I am back to working at my local nature center for the first time since my seizure. Today I was flying solo, educating the public on the animals on display (snakes, turtles, frogs) and enjoying the interaction with the kids. I am a teacher by nature, and love working with animals. Long day though; my first real teaching day since my dx. I will be substituting again his year, in addition to working at the local nature center. All on my terms/schedule.
One year ago today was my first MSK visit. Seem like a lifetime ago, and my milestone "back-to-normal" teaching day today is reinforcing to me: I can do it.
Of course, it helps to follow up with a Rumrunner at the local pub... life is good.
Titan-- I'm really not into football. I'm into watching football with Tommy boy. Heck, our Boston Terriers are named Brady & Gisele! See below:
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MBJ- I live with my daughters ages 27 and 21 and their children. But my son just thought I should stay with him and his wife during my chemo round. They are more worried about the kids bringing something home to me.
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Cathy: Your son has a point. Kids do tend to get sick more and you don't want to expose yourself while undergoing chemo. Best of luck to you whatever you decide to do.
Pauldingmom: Have a great sleep and keep us posted.
Heidi: That is such great news! I have to admit, I am a bit jealous.
Claire: We have the same do! You are right though, if you can call it a do. Just feeling a bit low today. I am in this surgical bra 24/7 that shows no matter what I wear except for a t-shirt and then my foobs just look weird. Dyed my hair back to a dark, reddish brown, too. I tell you, I have aged 20 years since my diagnosis. Time for a lift and tuck.
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Cathy- I also agree with not being around too many kids during chemo if you can help it. I took my name off the substitute teaching list, in part, because I did not want to expose myself to extra germs. As it turned out I felt fine throughout chemo and, though my white count dropped, it could have been worse. Plus, I was happy to have all unnecessary stress set aside during treatment.
Though my body feels older, (tires more easily) many have commented that my boy-cut hair makes me look ten years younger. Who'd a thunk it. I *never* would have opted for hair this short, but have received so much positive feedback on it that I've decided to keep it this way. It's SO easy to care for, and I no longer color or perm it so the hair feels much healthier also.
I guess that's why the saying "When Life hands you a bunch of lemons, make lemonade" is so relevant at times. Now, if I could just figure out how to turn a pile of sh*t into chocolate.
I know... GROSS!
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Ah..MJB..you make me smile...I love your posts..I really feel like I can hear you in "cyberspace"
Heidi..Tom and Giselle are so dang cute..I love boxers!
Juanita..you and I have the same "stats"..I did a lump plus 4 DD AC and 4 Taxol...then rads..you will get through it and we will be here for you.
Good to hear from you Pamela..missed you
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Juanita - I hope you enjoy your freedom before chemo! Most of us on chemo don't actually puke, but feel nauseus. Your onco should give you some anti-nausea meds for the chemo. Definitely enjoy your favorite foods now and DON'T EAT THEM WHEN YOU START CHEMO!!!! I learned this the hard way. There are just some things that I can't eat or look at - reminds me of chemo.
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Just a thought on grandkids and chemo - I found the happiness she brought into my life outweighed the germs - I kept some handwipes nearby and we did just fine. I tend to overthink things too much and get very stressed, but who can overthink anything with a 2 year old going through your bathroom drawers lol!
MBJ - I was wishing today that seeing a boob job is covered by insurance shouldn't a face lift be too?
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claire: I wish, I wish, I wish!!!!
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That's a good point--- when they're *your* kids, the happiness outweighs the risks. Duh, why didn't I think of that?
Titan- Brady & Gisele are BOSTON terriers....... of course.
Sailing today... always feel great when I'm out of the water. I'm like Ratty in Wind in the Willows: "there is nothing - absolutely nothing - half so much worth doing as simply messing about in boats".
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Wow.....this is a busy thread. I just wanted to pop in and say hello.
Also, I saw y'all talking about Melatonin. I don't have personal experience with it, but my daughter took it for almost a year - she has a rare neurological disease and while she was undiagnosed and in a lot of pain they started her on Melatonin to help her sleep. Even after her diagnosis, she continued to take it. She said it really helped.....she said that it didn't make her feel really sleepy, but helped her to rest easier.
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