Calling all TNs
Comments
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Titan - Are you feeling any better now? Good job - your nodes are all clear.
MBJ - I am so wow'd by what happened to you, oh dear. Does your nose look okay after all the trauma it suffered? I am glad, though that you are fine. And thanks for thinking of us when you were going through such a nightmare. Good luck with your test results.
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Omg.. MBJ..I guess we were right to worry about you! Glad to have you back.do you have black eyes too?
Re: my sinus infection..the meds are doing the trick..I feel good..but the drugs they gave me to clear up my sinuses make me..well..wacko...I'm not going to take them anymore..I swear they were worse then the pre-chemo drugs..made me loopy....in fact I ran into a wall at work..no more drugs for me...
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MBJ - wow...so sorry to hear about your vacation incident. I was wondering where you've been lately.
I haven't posted much but have been following the thread regularly.
Take care eveyone!
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Is there a bitch, moan and complain thread? I'm frustrated at med onc.
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You can do that here, NSBusty. Titan created this thread for all of us (thanks again, T).
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Notsobusty This is a great place to let us know what is going on. I was upset with my onc for not calling in change orders and my chemo schedule got pushed from a Friday to a Monday. If I hadn't checked on percentages I would ave got the same amount as the first time, but I emailed a direct note to her and she took full ownership and made a better plan with me than before, ultimately turning out better for me. So bring it on, this is the place to say what's up and get heard.
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MBJ, I'm so sorry to hear about your injury and ruined vacation. I hope your feeling better and when your all healed up I think you should get a Do-over
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I left message for him last week and again yesterday. He hasn't called back. I need a time to go
over the chemo schedule and I have questions. If I am to have a relationship with this doc for the 4+ months it is not starting out well!0 -
TN friends,
for those of you that went through chemopause or are in menopause, what have you been told about taking hormone replacement therapy?
can a TN take estrogen?
My MO thinks best to avoid it, but I don't sleep well without estrogen which I was taking prior to diagnosis with TN and I am only 44 and was planning to take for a couple of years.
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Notsobusty: No return call in a week? That's unacceptable. Whenever I've had a question (that couldn't wait til my next appointment), I've called my oncology-nurse and left a message. I always get a return call the same day - either with answers or to set up an appointment with the onc. Perhaps you can have a frank discussion with your onc about who you should call about what, and what kind of response you want and can expect. If it's not good enough, it may be time to find another doc.
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MBJ: So sorry to hear about your fall. But I am glad that the rest of your body is OK. (I was worried about you) I broke my nose playing softbal when I was in my 20's NOT FUN. Hurt to even pull a T-shirt over my head. Had the Black eyes too.
NSBusty: Is there another Onc that you can see? The one you have is not doing a good job for you. IMO having a "Team" that you feel good about is vital. Good Luck and don't give up until you are happy with who is taking care of you.
B1Babe: Great topic. Last October, during my 6 mo visit with my Onc, I reported to her my awful menopause symptoms...Hotflashes, difficulty sleeping and just not feeling like myself. I was in such a paranoid state of mind regarding recurrenc/mets that I was not living a happy life. She put me on low dose estrogen. She reassured me that because I was TN and BMX that the chance that I would have a second breast CA that was ER+ was nearly nonexistant (note: nearly) and that my quality of life was more important. So here comes the issue that I was unaware of: IF you still have your uterus and go on Estrogen you will have uterine wall thickening (the endometrial lining) and this can lead to UTERINE CANCER. So I needed to be on progesterone to balance the estrogen. So I have decided to stay on low dose estrogen/low dose progesterone for another 6 months and see how things go. I am feeling very good-mentally and physically. And I am seeing my gyne every 6 months. I am having some spotting and have had a recent D & C because of it and had B9 results. If the bleeding/spotting continues I will probabaly come off early.
Hope this helps to answer your question. Keep your Gyne involved to help get answers to your question/concerns. Mine was excellent and really took a lot of time with me. Side note: I was 49 at dx and premenopausal.
Navy
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Good Morning everyone! I hope you are doing something today to put a smile on your face. Even if its cozing up with a good book, getting absorbed into HGTV or running a marathon LOL
MBJ - I've missed you. So very sorry to hear about your fall. Ouch!! I hope you heal quick and I kind of like the chaperone idea. Take care of your self. I picture you running around like crazy. Someone on here just the other day reminded me to "Breath". I think in a lot of ways we are very similiar. It was a nice reminder. Louiseville is only 1 1/2 hrs from me, next time? I think you still have my cell. I'd drive down in a heart beat. I hope you were able to enjoy at least part of your vacation.
Jenn3 - Thanks for the info. The Oxy makes me itch also but I do get a good night sleep at least for 4 hours straight. It melts my pain away. I will get the Benadryl today. Thanks. Did you get the hand/foot thing bad? When did you start the Xeloda, and how long are you going to be on it. Are there any other SE's I should look forward too? I love to cook too and try new recipes. I am hoping to have my kitchen remodeled this fall. I am meeting with a contractor on Monday. Funny I can design any outdoor space in a heartbeat but interior I am a lost puppy. I just can't seem to visualize. The only for sure thing I've picked out is the fridge. I've had my eye on this Samsung for a year now.
Notsobusty- WE are here for you, bitch, moan, you can even throw plates against the wall and we will clean them up. My first onc was like that and sadly when I really needed her to show her my tumors were activly growing while on chemo she would not return my calls and she basically was useless. I'd change oncs if I were you. The one I have now will return all calls within an hour and if I am really concerned about something she will even see me on her lunch if she doesn't have appts available. She listens to every question and if she isn't available she has an assistant that will be there for me 24-7. Listen to me! From experience there are oncs out there that will be more on top of it and you need that comfort and support from the most important person in your survival plan.
I'm going to go outside and work in the gardens and get ready to take my rare plants to the Farmers Market tomorrow. It is always fun. I've got a bunch more stuff on my todo list I'll see if I can stick to it and get some things accomplished. The weather here is real nice today. It looks like it might even rain.
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Mccrimmon (Heather),
I did get somewhat itchy on the chemo and had little red raised skin eruptions - a little like a pimple but just red that popped up sporadically over my body - even one on the remaining breast which of course terrified me to no end until it resolved (and I had onc and onc surgeon look at it.) Now they are all gone two months out. I probably had about 10 of them. I think I read that taxotere or taxol is dissolved in a solvent which is then infused. My skin took a beating - I still have dry lizard skin on my face and upper chest - haven't had time or money to deal with it but I think I need some kind of acid peel stuff to get that layer of dead skin off. My fingernails are horizontally striped - it is like reading a tree ring - you can tell each cycle of chemo from my fingernails.
I can tell that my finger is getting less numb now - I'm so glad!
I am now doubtful that I will getting more chemo. I still have another appointment with a different oncologist on the 16th but my onc conferred with oncs from Emory and Vanderbilt and they all said there is no data to support additional chemo benefit. Also, since discovering the 5-10% estrogen receptor positivity in the remaining tumor and getting on Arimidex, the onc believes this will reduce my chances for recurrence by 50%. So I'm going to see what the other oncologist says - if there is a strong case for more chemo, I'll consider it.
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braca1babe- I was 44 at dx (now 45) and am in chemopause- probably permanent. I was told no estrogen ( I am 3%+). The hot flashes are awful!! My gyn wrote me a script for Zoloft. He said it only helps 1 out of 3 women, but it was worth a shot. I then came on the boards to see others experience with it. Many had gained weight while using it and only some got relief from the hot flashes. So, i decided not to take it. So I am just suffering through and praying it doesn't last forever!! My MO said his wife's flashes lasted 3 years...YIKES!!
Finally getting some rain and heat relief here in Missouri! Have a great weekend all!
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brca1babe: I am BRCA2+, TN and I'm 44 also. I had bilat mx and ooph. Instant menopause. Onc said NO WAY to hormone replacement... not even bioidenticals... because of the BRCA. I'm assuming by your name that you have the genetic mutation and if so, they're not going to give us hormones. My cancer, judging by the fact I am brca2, should have been ER+ but it wasn't. I was able to get Premarin for local use only. They've told me it won't last forever (a few years), and that Effexor helps and often makes them go completely away. It's definitely not a comfortable thing. Last month, my gyn told me a new study actually shows women who receive estrogen only have less chance of breast cancer so maybe someday... just not today.0
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Heiditoo and Christina,
Thank you for letting me know the itchy is chemo related, it's driving me crazy!! The twitchy eyes and foot have calmed down for now but they will be back along with that god awful taste in my mouth @ next weeks treatment. I also have a few of those weird looking pimple things, even one on my affected breast and YES, I freaked out too!! They remind me of the fire ant bites. Thankfully I haven't had any real lasting numbness, I've been taking B6 and L-glutimine just in case but I'm only 1/2 thru so who knows what else I'll get.
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MBJ - that sounds horrible! Ouch! I'm really glad you are okay - and can I say that I'm glad it was just a broken nose?? I was getting worried...
Titan - glad to hear your sinus infection is clearing up :-).
NSBusty - no phone call back? I'd say time for a new MO if you can. I would leave another message that you want to speak to another MO since yours won't call back (be sure to tell them this!) - be firm but polite. Make it clear you will move on if need be. That usually gets a doctor's attention. My MO actually gave me her cell phone number, and always calls me back asap. Given how stressful this whole process is, it is important that you are comfortable with the level of communication between you two!
brca1babe - no hormone replacement here. I didn't even think about it TBH. I just have been suffering through the hot flashes.
LJ - you sound great! I'm jealous about the flowers :-). I'm having a ton of trouble with my garden this year - a chipmonk ate all my pretty flowers, and now I have a deer eating my veggies. I went out this AM to pick my ONE zucchini, and it was gone. Along with all my cantaloupe blossoms. Wahhhh!!! Let me know when you'll be in NYC again and I'll arrange to be there!
McCrimmon - I got some folliculitis while on chemo - basically, itchy red pimples on my legs. The derm was able to give me something for it, topical cream. Unfortunately, skin issues seem to be common.
Christina - has your RCB score come back yet? Your doctor is right, no proof it works to do more chemo. Of course, as I stated to my doctor - that's because it was never done!!! LOL. They are only now just starting the clinical trials. But with the ER+ and the benefit of the AI, then it becomes more murky. I can certainly understand not wanting to do more in your situation.
Fighter - I wish I could go the beach EVERY day, sigh, I used to be able to. I miss it so.
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Think I got everyone - I hope so! We had a fabulous day at the beach - NH coast - got there later afternoon, so it wasn't crowded or too hot. Then had dinner at a local lobster restaurant, and boy did I indulge! Lots of melted butter, yum. Back on track this morning though.
Have a good day guys!
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Talking about the beach...I miss it so much...hopefully going to the East Coast after DD's wedding...(if we have any $$ left that is..)..I remember a moment last year walking on the beach and it was sprinkling a little but the sun was out and it seemed like the entire beach area was colored blue and pink and we were walking through it..I just burst into tears...its a moment I will never forget.
Have a great weekend everyone and try to take some time for yourselves (easier said than done)..my DH and taking a little trip to a casino on Saturday...then my sweet little niece's 4 year b-day party on Sunday...
My DD is graduating from college next Saturday, 8 weeks until the wedding...the next two months are going to fly by.
Saw the onc on Tuesday..he had a PA in training with him...He was giving me a breast exam and he asked if the PA could feel them so she could know what lumpy, bumpy breast feel like..I said yes...but I did kinda feel like a guinea pig.
I did tell her though...that women with dense breasts need MORE than a mammogram and a physical exam...that the tumor can hide behind the density..I hoped it sunk in to her...the doctors need to be more aware of this.
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Hello to everyone, just trying to catch up with all the posts, chemo was postponed for a while - low WBC. Dave working away was feeling really down so MIL came over from england, had a great time. Finally had chem 5 on thursday so only one more left to go. Feeling very manic and sick now. Hope i'll be good for our bike clubs charity run next weekend. Have friends coming over from Belgium for it. They arrive tomorrow.
Anyway, sorry to hear some of you have not been having a good timne.Warm hugs to you all
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about hormone replacement...
probably best to avoid. I guess I prefer hot flashes to more cancer... right? sigh. hard choices.
somewhere I read that for BRCA1 HRT did not ead to more breast cancer, this was a while back, but low dose estrogen was ok for BRCA1 pts who got oophorectomy (that's me)... but now that I have BC, I guess the story is different.
I asked my MO about it again and he said that even though the tumors are ER- in TNBC, estrogen probably has a role in their development which is why some TNBC comes on during pregnancy, breastfeeding, is associated with obesity etc. so complicated!
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I had my lumpectomy yesterday. Having some pain and swelling, but feeling ok. The dr told me from what he saw the cancer is gone! Now just anxiously waiting to see path report. Rads will be nxt. month.
MBJ so sorry about your nose, what an awful way to start vacation.
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Kris...hope you continue to heal well! Great to hear that cancer is gone!
Bernie..almost done..! I understand the feeling of just wanting to get chemo over with once you are so close to being done...
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Laurajane: What rare plants are you taking to thte farmers market? I love exotic, unusual plants... I am so glad your plan is in place. Stay strong. You can beat this!
Heiditoo and Christina, Thank you also for letting me know the itchy is chemo related. The twitchy eyesare annoying, my left one really twitches.
ksmatthews Hope you feel better....
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Laurajane: What rare plants are you taking to thte farmers market? I love exotic, unusual plants... I am so glad your plan is in place. Stay strong. You can beat this!
Heiditoo and Christina, Thank you also for letting me know the itchy is chemo related. The twitchy eyesare annoying, my left one really twitches.
ksmatthews Hope you feel better....
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Painting - I also had the eye twitch and it got worse before it got better. It lingered after chemo but did go away. Hang in there...
I can't comment on hormone replacement. I think I'm in menopause (...for sure chemopause) but I haven't really experienced many symptoms other than the odd hot flash once and a while (knock on wood). Who knows, that could change!
Laurajane - glad to hear you have a plan in place. I can't tell you how uplifting you are, especially given all you're going through. You truly are an inspiration.
MBJ - I hope you're healing nicely.
Hi to everyone.
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MBJ, I hope you are feeling better - so sorry about your accident during vacation.
Titan, I understand about the sinus drugs - they make me dizzy and anxious. Sometimes I have to take them, but whenever possible I avoid them like the plague.
Ks, I love your cap! Hope you recover quickly - I am feeling pretty good 3 weeks from uni MX- just have tightness and little numbness but I had 16 nodes taken out.
NSBusty, I would expect an answer back the next day unless the doc was out of town. If you have a local breast cancer group in your area, I've found that a great resource to really find out which doctors are patient oriented. I'm in a moderate size city but it is still a small town in that sense.
BernieEllen, I hope you feel better and get to participate in the bike event!
Hormone replacement - my sister had it for 18 years and got highly hormone sensitive breast cancer. We had no breast cancer history whatsoever in our family. I was determined to avoid HRT and have had hot flashes over the past 1-2 years, usually before my period. When I went through chemo I stopped having periods and now it has been six months. I am also on Arimidex now and the hot flashes have increased somewhat. I have never been bothered by the hot flashes but I know they are very severe in some women.
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kris - great news on the preliminary pathology! Yay!!
Bernie - almost done. Hang in there...
Titan - I understand your feelings about the beach. I just sat there, watching my kids play in the warm sand, listening to the waves come in. I spent so much time in and on the water in my youth, it really is soothing. If you ever get over to the Boston area, let me know - we can have lunch! And win some money!! I love casinos - always lose, but I have fun anyway.
Laying low here. My neck is stiff as a board and my left arm is feeling the effects - tingling, pain. Probably a pinched nerve, maybe my carpal tunnel acting up. Doesn't feel like cancer, who the heck knows? Xeloda is making me very tired today, yawn!
Found out today that my middle son will probably need orthodontia work next year - they start early these days. Sigh. Well, at least I can start putting the money away now, lol.
Have a great w/e everyone!
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Suze..my son had lots of orthodontia work..have fun with that! He had two separate appliances plus had to have 2 teeth pulled b-4 he got his braces (which he wore for 3 years)..but his teeth are beautiful now..he had his wisdeom teeth out this spring...sometimes I wonder how many teeth he has left! I would love to visit Boston sometime..my husband has a cousin that lives there but we have never made it over....I work for a grocery store chain and we buy from a couple of companies in the Boston area....Foley Fish and Good Harbor Fish Company..have you heard of them?
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Thanks Titan & Suze. At least with the mania the house is clean.
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My daughter also has braces. She had a palette expander put in when she was in grade 1 and now is wearing braces for 9 -12 months, which went on in Feb. of this year when she was in grade 6. She manages pretty well with them.
Speaking of Boston, my family is heading there on Aug. 24th for a few days and then we're taking a week-long cruise from there to Bermuda. Can't wait...
I'm also suffering from the sinuses myself. It started on Friday night and the decongestants kept me awake all last night. Withouth them, though, I can't breathe through my nostrils
It's rainy here in Toronto but our plants really need it. Take care and enjoy your day.
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