Calling all TNs
Comments
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dlcw - my doctor hasn't talked to me about what to look for, but I can tell you that chemo played havoc with my bones, and I still have some issues. I have been having pain in my left thigh and in my neck. My PET scan on 4/4 was clear for any distant mets, so we chalk it up to chemo and other things. But I would talk to your doctor anyway, be sure they know you are having some issues. They can schedule you for a quick scan to check and make sure. Peace of mind.
Riley - I'm so glad it turned out to be nothing! I was a bit of a hypochondriac before cancer, now, well, it sucks.
JenC - I hope it is nothing for you as well. This sounds pretty common.
Deanna - welcome, although I am sorry you are here. So happy to see you are done with treatment, that must feel awesome! This is a great group, especially when you need to vent. We understand in a way that most don't.
GuyGirl - I think you can have issues from chemo and radiation for at least a year afterwards. As for the actual pain, I go by the 2-week rule - if it isn't gone in 2 weeks, check it out - and have found that works pretty well. Nothing has lasted two weeks. I do get occasional pains in various spots - my thigh, which comes and goes, and this past week, my neck has been stiff and sore. If that doesn't let up in another week, I'll probably push for an x-ray even though my PET scan 3 weeks ago didn't show anything. So if you are still noticing it in 2 weeks, I would let your doctor know.
Heidi - How are you feeling?? I hope you are doing okay.
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Thanks Suze
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Welcome Deanna, I am also at the one year mark. What a year it has been. All of my treatment is over but I feel like I face an endless line of doctor's appointments now . . .anyway, I hope you will find a lot of support here, I know I did.
I hope everyone gets into their doctors to get those pesky pains resolved. It's no fun having to worry about every ache, pain, or bump but I guess that's our life now.
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Dear everyone..
I have bone mets!! So I will tell you what it feels like...not much... a little stiffness. The only way I really knew this bad juju came back was I had a routine scan done. The PET scan found it I did not feel it until 2 weeks after the scan. Thank God I had a scan done and knew that I was not loosing my mind. If you are sore after chemo.. yep muscles bones yep that is common. Everything you are all talking about can be just because you are just out of treatment. Mine came back pretty quick!!! So get a PET scan as often as you can!! This is the only way they really know what the heck is going on. Sorry .. but mine was every 6 months. So I am glad we were doing it. Also before surgery you should absolutely get a PET scan so the docs know exactly what is going on. I also got a bone scan before surgery... I have been scanned a lot. So make sure your doc is staying on top of it..!!! This is nothing to mess around with. I am doing fine .. I am on xeloda 2000 mg a day and getting rads for the area in my neck. It was all very small so this is doable and not the end of the world. Believe my 8 cm tumor was more serious than this stuff is now!! But I understand how you all feel. This is scary. You as a patient must speak up and make sure they are listening!!! MY onc is great he sent me another onc because he did not know so much about TN!!! Ask for a CTC search .. this is a blood test for cancer tumor cell search!!! This is very good and will help your doc know if there is cancer in your blood very quickly. MD Anderson does it and my onc does too.. ASK!!!! Do research!! everyone look up PARP inhibitors and be ready for the next step before it comes!!!
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Heidi: I know that there is an easy antidote for Botox that completely reverses the effects-hoping they do this for you imediately! Hugs!
Marial: Welcome to the board and please do not lose heart. After freaking out for about a year because I was TN, part of me is completely relieved that there are simple things we can do that don't require debilitating hormone stopping drugs like the triple positives! Diet, excercise, chemo and surgery are our weapons and they are having great success with this! The most immportant thing is to be pro-active with your care-ask lots of questions, do your research and listen to your gut on your treatments! You have found a great place to get support from others. Hugs!
Pamdo: Yay!!!
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Towny: So sorry you have mets but I am glad it is treatable! I am so glad your dr's were vigilant with your scans, as I know many of us get nothing. Were there no other symptoms then the pain you felt after the scan?
For those of you worried about aches and pains, my Onc told me anywhere you have had a prior injury in your body, no matter how long ago, this is usually where you are going to have constant pain from chemo. I have found this to be true: in my thumb that I broke over 30 years ago, the car accident I was in when I was just 14 where I fractured a bone now makes me limp (it has always been a sore point it's just worse now), also my neck where I have a few herniated disks. It feels like I am now 90 years old sometimes.
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Towny: Wishing you the best with the teatment of the mets. That is just awful. I dont get any scans and my onc said unless there is a reason to they dont do them so I call for every ach or pain. I have pain in my thumb joints but was told it was nothing and could be arthritis but still cares me. Hope you are doing well.
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JenC: My thumbs won't even move and lock into place now-very weird! I thought I was the only one with this!
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Hi guys, been awhile since I checked in. Been very busy with a second job, a fall down some stairs, and a bit of a job stress-related breakdown - but feeling good now.
Saw the onc for the dreaded 6 month visit and all seems well... Like I thought, we are stopping Zometa since it seems to hold no benefits. I didn't want tumor markers drawn and he was fine with that. Overall, I'm feel great except for my back (work - mousing, plus the lat flap/mast did a job on EVERYTHING) and I keep gaining weight. I blame the anit-anxiety meds I'm on. Since I last saw my onc in October I've gained 9 lbs
Not quite sure how to lose it - I'm motivated for awhile, then I feel myself getting fatter, and then I say the heck with it all and go eat some cake.Hope you all are well, will try and catch up more in the next few weeks -
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minxie: So sorry you are going through so much! Join us on the TN Ten Pounds Take Off thread!
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MBJ - my thumbs have been like this since about 1 month after chemo. the joint hurts and the pop. Sorry yours lock I have not had that happen, yet..:)
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My Onc won't do scans either....I can't afford them on my own. I hope it's nothing.....
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My jaw locks now especially in the am. anyone else get this? Very weird.
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I am really feeling bitchy and out of sorts today. Last night was awful. Couldn't even roll over in bed without dry-heaving from the vertigo. Had to cancel my massage but managed to do a program (observing) at the nature center this afternoon with my husband nearby in case I keeled over.
F*cking doctor--- left 2 messages at both his offices yesterday and he never returned either. Told him I appeared to be having a reaction to the Botox for my neck and needed help. Then, as if that wasn't bad enough, today I walked out of his office after waiting for an hour for my follow-up appointment for the procedure I had 12 days ago. I HATE WAITING IN GD DOCTORS OFFICE!!!
Did I mention I hate/resent waiting in a doctors office? I've been to this*sshole three times and each time waited 1-3 hours. For a f*cking osteopath (or whatever the f*ck he is..."pain management" and rehab blah blah blah).
Well, I am done with that pr*ck. If I have another bout with this dreadful vertigo I will call my GP. At least she takes me seriously, unlike this other idiot. Guess I'll just have to live with no ROM in my neck to the left.
God I'm mad, and still slightly dizzy. Lawn still needs mowing though, so I guess I'll give it a try...new tractor.
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Heidi - sorry to hear about your pain and the pain in the *ss doctors. I'm sending you healing vibes!
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Heidi - wow, what a sh*tty experience! I hope it gets better and that your PCP is able to help you.
Towny - I am so sorry to hear about the mets, but it sounds like your doctors are very on top of things! Because I am so high risk, I'll be getting PET scans every 6 months for the foreseeable future, or as needed. My onc likes to stay on top of TN patients, she thinks that there is a benefit to catching it early for us.
I start my rads tomorrow - got confused and my dry-run was actually today! I'm happy - one less day to have to wait! One of my techs is a real cutie, he should make my days go fast
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Umm.Marial..didn't I tell you that this is where we kinda rant alot?
Heidi..your doctor sounds like a a**h**le*.how are you feeling now?
I know that from my experience with cancer..and doctors..lots of doctors..I really don't put up with crap anymore..I know that this is their "job" but sorry this is my life..and my mental stability (if I have any left)...I whine and whine until I get my answers..BS...they are getting paid tons of $$...
I seriously and I think you guys are the same..cannot wait patiently for a test result..I want to know NOW...
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And MBJ..I agree with you about not having to deal with the Tamoxifin, Herceptin etc. side effects..I do hear that some ladies don't have a easy time with those...on the other hand..I do wish there were some tiny little pill that we TN's could take...I would at least like to try it.
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Thanks everyone for helping me feel like I'm not alone !
Titan - it's good to know I can feel free to rant here! I think I am finally starting to go through some of the chemo enduced menopause( aim 43) because I have noticed certain days I am ready to explode..plus the sleeplessness has really set in
Once the chemo is done, I think I will be doing a mx on the other side..as well as ovaries removed, and am really confused about the reconstruction..as originally I was looking for the simplest way.thinking it was implants but not so sure with the whole TE! My thought wAs my upper body has been so violated,I didn't want my lower body to have to heal as well..uggg..will I ever feel normal again0 -
Welcome Marial!!!! Sending vibes your way hang in there chick!!!
Dlcw: post we all need encouragement from each other.
Heidi: hang in there and I hope you feel better soon. How long does it take for Botox to wear off once injected??
The local news around my way had a guy brining awareness to breast cancer. He was deeply moved my breast cancer. Why? He lost three SISTERS to this CRAP!! I was just balling and balling yesterday over his story. So just when you think you have it WORSE...
Well I am off for my morning blueberries...no DONUT over here.
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Heidi - So sorry about your vertigo and doc issues. That sucks. I would tell him to f off and get another doc. Big hugs.
Titan - I agree with you. Seems like there should be more we TN's could do.
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Mariol: Come and speak with Whippetmom on Breast Implant Sizing 101. She can answer all of your questions and concerns. IMO: It is the least invasive of all of the reconstructive options and if you are elegible, they can do immediate/delayed recon so that you don't have to do an extra surgury. If you PM me I would be more then happy to share my before and after pictures of my own journey. Having TE's was not the most pain I have ever been in and i now have amazing looking breasts--something I could have never imagined after going through all of this BC stuff. Hang in there!
Heidi: Arghhhh! That is one of my pet peaves--I hate showing up early or on time and then being made to wait! I wouldn't put up with a dr. not replying to an emergency, either. No way, not after all we have been through. Hugs!!!
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Titan: There are so many things including being TN that I wish I had a little pill for. I received a letter from TNBC regarding all of the new research that's being done, but mostly it felt like an advertisement for people selling their wares and giving some of the proceeds to TN research.
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Red Eye update...
Just wanted to let everyone know that the clear eyes worked. Maybe my eyes are just a little more easily irritated nowadays (shrugs shoulders). However, I did notice that my eyelashes are coming in more and more.
I am officially 13 weeks Post Chemo today, and I feel pretty good no aches or pains. Other than the usual 'fear' every now and again I guess I am okay.
Sending well thoughts...
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fighter: glad that worked for you!
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Welcome Marial, hope chemo goes well with you.
Heidi: I am sorry you are feeling so badly. I hate being at the doctor's office, period.
Good news for me, I had my six-month mammo/US on my "good" side. Everything looked good. I love getting the results immediately. Also my abnormal BRCA 1 was reclassifed so I am now BRCA 1 negative , but BRCA 2 is still inconclusive and so my parents are getting tested. Weird, I just want to know one way or another.
Now I just need to make it through my 6 month onc and RO appts next week. And I'll be good to to go for another 3 months. Like Heidi says, I feel like I am dodging one bullet after another, that's exactly how it feels like!
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Hi All - had my post-trial scans yesterday (mammogram and MRI) and will meet with docs next Thursday to discuss them prior to surgery. My anxiety is really starting to skyrocket as I approach surgery. I just read an article that was forwarded to my by another participant in the study (I am doing the neoadjuvant gem/carb/PARP at Stanford). The trial docs are using this 2007 study from MD Anderson to asses Residual Cancer Burden as a predictor of outcome and for use in recommending (or not) additional post-surgery chemo. I have been assuming I will do some sort of chemo after the trial regardless of response. I still have a lump although it is much smaller, but I am mentally preparing for news that there is still cancer.....can I ask how many of you had a complete response to neoadjuvant? This study from MD Anderson was not specific to TN's but it was nonetheless pretty sobering for those that had a residual cancer burden that they placed in category II or III (quite a bit of cancer left).....so, now the pessimist in me is assuming I will be a III and I'm doomed. I'd love to know that there are folks out there that had something less than a complete response and are still around....
Also - if anyone is interested in the paper, PM me your email address and I'll send it to you. I have it as a pdf - it has lots of graphs in it and I don't know how to post it in here.
Heidi - sorry about the botox side effects - I have had vertigo many times due to some ear damage from a scuba diving mishap in my college days...it's awful and I hope it resolves soon and you find a new doctor.
Fighter - glad to hear you are feeling well and re-growing your eyelashes. I think part of what I'm dreading about surgery is that afterward I will start to have the traditional chemo side effects of hair loss - the trial only caused thinning that is probably not noticeable to anyone but me. I feel like that's such a silly thing to be dreading as I know it will grow back...
Going to go tackle the mountain of laundry that never seems to go away and then maybe take a walk and try NOT to think about having cancer for a while.
dlcw
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Just wanted to add that this study I think isn't really comparable to what most of us are doing today so I'm not sure why Stanford is using it.....I'm also trying to talk myself down a bit as well....but, it's not a huge dataset (241 women) and they don't differentiate between TN and receptor positive and we know that TN's are more responsive to chemo.
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Well, now I just have "residual dizziness". At least I can function. I really don't know what else to do at this point. I am not going back to that doctor and I'm not sure I want to mention it to my GP (yet) and be subjected to a barrage of further testing. I don't like it and figure I just have to gut it out. SEs from Botox can last @ 3 months according to what I have been told.
So, it s*cks, but we've all been through worse at this point. I do get a little nervous thinking about brain mets, but my onc told me I'd be *much* sicker if I had brain mets (I know this from a previous scare). So, guess I'll just keep plugging along.... don't want to totally ignore it, but don't want to whip myself up into a frenzy either.
If I'm still affected 2 weeks from now I'll go more pro-active with a solution.
Thanks for all your kind words. There are so many in here dealing with more serious issues. Take care.
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dlcw - in my search for reassurance, I've scoured most of the threads on this board, and I have found numerous examples of women who did not have a complete response and appear to be fine years out. It sounds like you have had a decent response, and that is a GOOD thing. Any response is good!
I know I am probably one of those stories that scares the bejeezus out of you, but I am RARE! And on a positive note, I have apparently had a very aggressive cancer in my body for 8+ months, and no sign of mets as of April 4th. Even my MO was surprised at this, and she is hopeful that being aggressive and doing more chemo will increase my chances. Right now, with chemo and exercise/diet, she is hoping to get me over the 50% mark. I know that sounds low - it IS low - but it gives me hope that I'm not automatically doomed.
I think adding chemo at the end will prove to add survival benefit down the road, they are just now starting to do clinical studies to find out. Unfortunately, this TN beast is so hard to figure out - but as my RO has encouraged me, we just can't know what cancer will do, and he's seen some great outcomes with women in my shoes.
All I can offer you is my understanding and hugs, because I know words won't give much comfort. I hope all comes out okay for you during surgery.
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