Chemo starting April 2018
Comments
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Thanks, everyone - we had fun!
Ingerp, I'm just about 9 weeks PFC. I do have full coverage of hair, but it's pretty thin. Plus, it was in the high 30s when DebAL and I met, so my head was freezing. I'm still not even going topless all day inside the house. Too chilly, I'm a wimp.
Duffy, I'm with you - I have a platinum blonde hair color - definitely not grey, lol.
InnaB, congrats on finishing rads! Are you done with all treatment now?
Urdrago, thinking of you as you start rads tomorrow. Good luck!
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Congrats! InnaB on finishing rads.
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Congrats InnaB!!
Wow Deb and Gawarroir u both look amazing! So glad u were able to met up ..
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Congrats InnaB!!
Wow Deb and Gawarroir u both look amazing! So glad u were able to met up ..
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Inna you are too cute! Congratulations!!
GAW—I think you’ll see a big difference in about three weeks, and *certainly* by Christmas.
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Thats a beautiful pic Deb Al and GA Warrior. Love the happy faces.
Congrats Inna B on completing rads.
Urdrago, all the best for the next step.
Engine, I hope you guys are doing okay and are far from the fires. It must be such a difficult time.
I am feeling quite okay energy wise. Random isolated pain in the radiated area and skin changes. But its okay. I also got the go ahead to go swimming in pools. Looking forward to that. Its getting warmer here. Blue skies. I woke up with a head of unruly hair. So glad my hair has the length to be unruly now.
I start Capecitabine next monday. Hoping to get by with minimal SEs
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Hi everyone,
Thanks, Frog. We're doing well. The fires are not close to us, but school is closed until after Thanksgiving.
Do you guys remember me mentioning Jillian Barbarie, the talk show host that works at the radio station where I worked just after college? She had her double mastectomy with reconstruction last Friday. She went to someplace called Bedford BC in L.A. It sounds like a concierge surgical center. They even ordered a hyperbaric chamber for her house when she got home. I've never heard of that before, have you?
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Okay this is going to sound really crazy because I cannot go back that far and catch up with everyone because I keep losing track. Lol
Engine good to hear that this fire is not so close to your home that you are having to evacuate. Glad you're both safe! I have never heard of the type of surgery that your friend is having.
GA Warrior and DebAl you both look fantastic! I bet it was so cool to just sit and chit chat face to face! Lucky chicks!
InnaB you look so cute ringing your bell! Congratulations for being done! I've been thinking about what you said as far as taking the antidepressant. I started seeing a counselor and talking things out we'll go from there.
Frog. Congratulations on having enough hair to actually get unruly! LOL my hair is long but curly curly curly in the back and straight as an arrow in the front. My bangs are taking their sweet time coming in. I was kind of getting discouraged and then I saw DebAl's picture and her bangs are just a little bit longer than mine so I guess I can just settle down cuz she's been done with chemo way before me. LOL
Undrago you started radiation today sounds like you've got a heck of a schedule with the holidays in between but in a way that's kind of a blessing cuz it'll give your skin time to heal a little before they hit it again. I know when I had to take time off for that week that I had a cold my skin started healing very nicely. And then she decided to do my Boost because my underarm was getting so red which gave it a chance to settle down.
Interg how was Disney?! I believe I read somewhere that you are getting ready to take anastrozole. I was taking it at night, when I first started taking it I did have side effects. I had a headache I was nauseated little dizzy and pain and insomnia. However about 2 months into it the dizziness went away the headaches went away in the insomnia went away. My only problem is that my joint pains not going away. However everyone is different! I have started taking mine in the morning now hoping that the side effects are less in the evening hours while I'm trying to sleep. Keep me tab then how you're doing. :-)
DJT, Maggie, Duffy, Notered and Hikinglady hope your all doing well!
I am getting ready to finally go get my ultrasound for my liver enzymes. The insurance denied the CT scan because they want a ultrasound first. This decision of course took 3 weeks to make. Ugh!
Well I'm signing off for now I hope I didn't miss anyone and if I did I'm so sorry. Think think of you all often. Still waiting to see little pictures here and there of everyone that we went through this with! 😙
Huggs to you all! 🤗
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Life, Am I missing something liver enzymes high? Did it just occur, or has been higher than normal? I hate all the red tape for test, and u have to do specific steps before u can get what you need. Sending you prayers for answers, as we all know waiting sucks a$*!
Yes I started today. I walked in the door and left within 10 minutes. I haven't looked yet at my skin but feel a little ache in armpit. Not sure if its just all the cold weather, windchill 17 degrees out. I slathered aloe and cream on skin and drinking a lot of water again. I don't miss doing all of this, and nice to have a little break. I can say I notice fatigue more now than I did when I was working. Head back to work Monday, woohoo..
Engine, I was surprised she gets oxygen tube for healing. But its suppose to help increase healing and blood flow.
Gawarroir, How are you doing? Plans for Thanksgiving? When do you go back to ur MO and next steps? Can u believe its been almost 3 months PFC.wow how times flies by!
Frog, Are you having any problems with fatigue? Im jealous you get to enjoy swimming while I enjoy the Snow. Actually we had enuff that I started listening to Christmas music this morning..lol
Wishing everyone a peaceful week.Sending good vibes..
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Life, my doctor put me on Effexor to control hot flashes, but since it’s an anti-depressant it does much more than that. It really helps with my mood as well. I am no longer skulking in the corner planning my own funeral. I still think about recurrence sometimes, but the thoughts are no longer bothering me. Ask for it.
I am 9 weeks Pfc and the hair is coming, but I can still see my scalp through the thin strands. I was hoping to go topless for Thanksgiving, but I don’t think it will happen.
Urdrago, I got Miaderm cream on Amazon and it’s been a life saver during radiation. How many sessions do you have to do? Good luck with it!
Ingerp, love the Disney trip! I’ve been there twice. Once with each of my kids. Would go back in a heartbeat!
Engine, hope the fires won’t affect you. You’ve got enough to deal with!
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Life--Disney was a wonderful break. We had beautiful weather and busy days but just thinking about it still makes me smile. I started anastrozole last Sunday but decided (with NP's blessing) to do it every other day for a few weeks. I don't really eat breakfast (I've been intermittent fasting for a couple of years) and thought midday with my first meal might be a good idea. Can't say I've noticed any SEs yet--maybe after Thanksgiving when I start taking it every day.
Inna--I think that's why I fell in love with WDW. I took each of my kids individually the summer after fifth grade (so they were 11). They were *wonderful* one-on-one trips and I have such amazing memories of each of them. I get an endorphin rush every time I think about the place. I've been 2-3 times on my own--not as much fun as with an 11-year-old boy but still entertaining. This was the first time hubs had been--I think he didn't hate it!!
I go see a periodontist this afternoon (something about a pocket behind one of my teeth where the gum is pulling away from the tooth? GAWarrior any insight?), and have a six-week check-up with my RO on Friday. Then I leave for CA on Monday for a week--I feel like it's almost December!!
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Hi everyone,
They are starting to get a handle on the fires. Thank God. Also, the winds are supposed to be dying down later today or by tomorrow. Our house is about five miles away from the nearest part of the fire, but my school where I work was surrounded by fire last Friday night.
I don't know Jillian because she started working at the radio station where I used to work many years ago. She is an interesting personality.. Last night she posted her filled drain measuring cups on Twitter... TMI, in my opinion
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Undrago my liver enzymes have been high since finishing chemo. They're not going down as quickly as the doctor would like to see them go down and so now he is decided to do a CT scan to see what's going on. Of course the Insurance wants a ultrasound first. I have not been allowed to take anything for pain? Told to stay away from red meat as well although I will admit I have had a steak or Burger a time or two because during chemo all I wanted was chicken and so it's been a really long time and I'm sick of chicken! LOL. No alcohol! Just really wish they would figure out what's going on. It's been kind of stressful.
How is day 2?
Engine that is really stressful news that the fire is surrounding your school!
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good morning everyone. It has been awhile. I was telling GAW when we met how I think of everyone often, I like to reply when I have the time to truly catch up.
InnaB congrats! You are just too darn cute. I believe you suggested accupuncture. After few sessions I do believe it started to help me. Then my work schedule changed. I want to go a few more times. How often do you go?
Urdrago, brrr. We are in for a long winter. I say we go live with frog for a few months. You are the nicest Michigan fan I know!!. I'm from Columbus so we have a big football showdown coming up soon!! It will be funny that we will be rooting against each other for a few hours that day. That's the only reason I would ever root against you!!. Lol. I'm rooting for all of us as we move forward in putting this disease behind us.
Frog, enjoy swimming and please post another pic of your unruly hair! Hoping for minimal or no side effects for next monday.
LIFE. I hope they can figure out your elevated liver enzymes? Many pain meds are metabolized in the liver is probably why they prefer you not take anything unless necessary. You mentioned it's been elevated after chemo, any chance its due to the arimidex? I dont think it's one of the major side effects but I believe it's possible. Then again, what isnt on that list. Ugh. Please keep us posted.
Ingerp, so far my side effects on AI are minimal and I wish you the same. I've been on arimidex for 5 months. I'm on the go from 5am with work, exercise and when I get home I take a half hour nap. When I go to get up I literally feel 90. Its bizarre.!!!! It's only after my nap. I think it's my body in shock because I'm so active all day. Thankfully 15 min later it's gone. I dont feel that bad when I wake up in the mornings. So far I can deal. Enjoy your trip. Getting away is magical. Enjoy.
Hi engine. How is janice doing? Omg a home hyperbaric chamber, are you kidding me?! The fires and shooting is just devastating. I hope your community can begin to heal. I cant imagine.
Duffy, no shaping at all as far as my hair goes. I use a taffy styling product which helps. I had a temporary color that only lasts a few weeks to tone down the gray. It's not near the coverage permanent color is but my hair is so healthy right now I dont want to start back with that just yet. Its unbelievably thick. I'm hanging on to every hair right now as some struggle with thinning due to the arimidex. I'll cross that bridge if I get there. How are you feeling?
Hey miss maggie! I have PS appt today to firm up if I will go through with this 2nd fat grafting next month. Things have settled more. I notice a bit more rippling but honestly I cant complain. Part of me wants to see this through ( covered 100%) and part of me says leave as is. I hope you are doing well! Found a comfy bra at nordstroms and the fitter was very helpful.
Djt and and everyone that check in from time to time I hope all is well and sending good vibes.
I have my integrative physician appt Tuesday. It's a 90 min- 2 hr appt. Are you kidding me? Not a single provider has spent that much time with me. I filled out an 18 page history form. Looking forward for some direction on keeping my immune system healthy ( I have autoimmune issues) Not sure if this is a one time visit or not. Finding my self at the "end" of treatment comes with concerns. I just need validation that I'm on track as far as what is in my control.
It was so nice to meet GAW. I told her I felt like I was on a mystery date LOL. If you pictured us yacking away you were right! Time went too fast. A good example that you just never know when our paths might cross. It was nice to feed off of her positive spirit and I hope I did the same for her. We both agreed dark thoughts and worry surface from time to time but as long as they are not in the forefront all the time that is normal. Do something you enjoy every single day. Dont feel guilty about doing something good for yourself.
With that said. I think I will enjoy another cup of coffee under my warm comforter and be thankful I'm not driving in this ice storm. Hugs to all! Deb
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DebAl, I go to acupuncture once a week. I find it helps me with hot flashes and focus. I’ll need every ounce of focus once I am back to workon December 3!
I am a little worried about my hair. I am 9 weeks Pfc, and I see it coming, but it’s still sparse and I can see my scalp through it. On the bright side, my eyebrows and eyelashes are 90% back, and I think they are a little thicker than before.
When did you guys start seeing your scalp really covered?
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Ingerp, how did your periodontist appointment go? How deep was the pocket? Normal is 1-3mm, any numbers higher than that indicate that the gum attachment to the tooth is being affected. The bone around the tooth drops as the gum attachment drops which can lead to tooth loss. If the pocket is too deep, they do gum surgery to slow/halt progression of the gum disease. I would tell you not to do any surgery unless the pocket is deeper than 6mm. The big thing is keeping the pocket clean. Daily flossing and/or a waterpick is great for that.
Engine, it must not have been this group (but I thought it was) where someone did a hyperbaric oxygen chamber a few times. I don't think that's standard after surgery, though - just something that was extra to help for their condition (I wonder if it would help Janice if she's still draining?). Or maybe I read about it on one of the surgery threads (I'm in the Oct surgery group). In any case - not standard. And that's a hard NO to posting pics of fluid from the drains on twitter. Wayyy too much info, lol. Glad to hear the fires are starting to be contained.
Frog, how nice that your hair is long enough to be unruly - go you! Mine is mostly flat to my scalp, but with random long hairs that stick up everywhere. Still, I'm happy to see ANY hair, lol. I wish it was warm enough for swimming here, enjoy the pool when you can. Good luck with the Capecitabine - wishing no SEs for you.
Life, I'm glad you're seeing a counselor. We've been through so much, I'm sure it will help you. I do well for a while, then recurrence possibilities get in my head and I start worrying. It's tough to get this all out of your mind. Good luck with your liver enzymes! I remember that urdrago had high liver enzymes when she was on chemo and was taking a lot of Tylenol (I think?) for bone pain. When she switched to something else, they came down fairly quick. Maybe that's what is affecting you?
Urdrago, glad the first rads went well. I start back to work on Monday, too - not looking forward to it. I've gotten used to sleeping in and napping! I saw the MO 2 weeks ago and don't see him again for three months. We talked about me taking metformin to help against recurrence, but he convinced me it's overkill since I had a complete response. Of course, then I came across a woman online the other day who had the same tnbc/stage/treatment/surgery as I, PLUS she had rads - she also got a complete response and then relapsed 13 mo after surgery. So I am back to worrying.
DebAL, sorry you're in the midst of an ice storm. And here we thought it was freezing at Stone Mountain when it was in the 40s last weekend, lol. Yes, the time flew by, but it was awesome to meet you! Stay warm.
I saw the PS on Monday and got my stitches out. I'm cleared to drive, wear a bra, and do arm exercises - yay! We set the date for my exchange surgery on 1/18/2019.
Stay safe if you are beginning any holiday travel this upcoming weekend. Big hugs to you all!
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InnaB, I just crossed 10 weeks PFC yesterday. My eyebrows and lashes are back, too. My scalp is fairly well covered, it's just not thick. Hoping this pic helps.
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innaB, I just looked back through pics too. My hair is pretty dark. You are lighter correct? I think that makes a difference. I did still have some scalp showing at that point. It's so hard not to look for growth every hour.
I went to accupuncture 3 times. Anything to help with focus is a good thing. It was strange. After the 3rd treatment I felt this unusual calmness after something that would normally upset me. I just felt balanced. Didnt over react like I might have. Could that be the accupuncture? I am definitely going to go a few more times regularly to see how things go. I'm bummed that my acupuncturist and my schedule doesnt jive right now but I'm determined to go back
Keep in mind for those of you that work for larger companies. Most have and EAP. Employee assistance program. Mine offers 6 free counseling sessions. I think I may check into it. Why not. If you are at a place where you are down , more nervous etc than you feel you should be on a regular basis it's so important to seek help. I think we all find ourselves there at different stages when traveling this road.
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Inna--I started going without head covering at about 11 weeks PFC (probably similar to GAW's pic above) because of a work trip that I didn't want to pack ball caps for. It wasn't quite as long as I'd hoped--people definitely knew what was going on--but it's been okay. I feel like at this point (almost 14 weeks PFC) I have a lot of hairs but not they're still not long enough that this looks like an intentional hair cut (unless I were some badass 61-year-old). It looks to me like mine is getting a little curly but isn't long enough yet to really curl. I was hoping to need a haircut (more shape probably) before Christmas but I'm not sure I will.
GAW--thanks for chiming in. He was saying numbers that his helper was jotting down as he poked around a couple of teeth--I want to say the biggest one(s) began with a 3 but I'm not sure. I so do not want to be thinking about my teeth right now. My hygienist had mentioned a laser procedure that I had to ask about because the periodontist was talking bone graft and I said at this point I don't want to think about any big procedures for a while. He said that might work but might not be a permanent fix and I said I was fine with a stopgap measure if it was a little less invasive. Sounds like it'll be less than an hour in the office followed by a course of Amoxicillin (anybody know if I need to run this by my MO?). I *did* just start using a Waterpik after my last cleaning because my hygienist is such a big fan. The periodontist also said I should get my teeth cleaned every three months (I really don't remember if that was for a while or for the rest of my life--again, I am usually completely on top of medical things but this whole tooth thing is just pissing me off). You are a great resource!!
DebAL--we started off with sleet this morning but I think it's changed to a cold rain. Gross day. Ugh.
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Ingerp, glad I can help! I would want to hear the perio measurement numbers around the areas that he's talking about doing surgery on before I can give you concrete advice, but using a laser is a good option as a stopgap. It has a good record of halting disease progress and can sometimes stimulate reattachment of the gum a couple of millimeters higher on the tooth, which is what you want. A bone graft isn't usually done unless you've lost quite a bit of bone around the tooth/teeth. Also, a cleaning every 3 months is standard for the first year. You'll have them done at the perio office for that year, then will alternate with the periodontist and your regular office after that. It sounds like your hygienist is on top of things. If you do the laser treatment and use the water pick faithfully (I'm a big fan of it, too!), you may never need surgery. If you can give me the measurements (call the perio office and ask for them), I can help you more.
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GAW--I think he *did* say I'd be having cleanings with him for a while now that you mention it. I'm good with the laser treatment for now (and he was too). Thanks much, sweetie.
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Hi everyone,
Things seem to be calming down out here. The winds are gone and we are expecting cooler, more humid temps the next several days.
Yes, a home hyperbaric chamber! We could even get Kaiser to cover the cold cap!
Soemhow, I don't think her insurance is paying for it. 0 -
hellos, love ur hair growth pic GAwarrior. I can completely understand how u feel.I dont think we will ever have all the answer in life. Ive had random thoughts every night spinning in my head all the what If's. And knowing to let go and enjoy my life. Not sure when that's suppose to start..My grays got the best of me so I colored. Its taken a bit to get use to having color.
DebAl, go blue!..lol .. I agree we are awesome cheerlearder as we all move forward..
Quick update Im doing well thru rads. 3 of 33 and no changes in skin. Im over it already, but know I need to finish to reduce risk.
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urdrago you are beautiful!!
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urdrago, OMG. SERIOUSLY??!! You look like a model!! Vogue magazine should be calling you soon.
I think most will agree those spinning bad thoughts are worse at night. I've always wondered why. I hope that the stretches of time that you dont think of this disease gets longer. I remember when I went back to work on our busy unit 3 hours later i thought " wow. I totally forgot" i also had a great run on the treadmill not too long ago. Listening to good music, sweating. I hopped off and got choked up because I felt like my old self.
I hope rads brings you zero or only minimal side effects. Maybe a week from today we can share pics in our game day gear! We have had an annual party for well over 20 years. Now that the game falls on Thanksgiving weekend it's down to about 25 friends..and that's a good thing! LOL
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Wow, urdrago, you look awesome! I'm glad you're breezing through rads so far. You're right - DebAL and I talked about the fears, too, and how we need to enjoy our lives and not worry about "what if". Worry won't keep something from happening or not happening. Easier said than done sometimes, lol.
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urdrago, you are beautiful! Super jealous of the hair pictures. Nothing to show so far except my scalp with sparse peach fuzz. I hope it will pick up the tempo soon, don’t want to stay bald!
Effexor makes me care less. I still think bad thoughts, but don’t have heart palpitations anymore when I do it.
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InnaB, I wonder if rads slowed your hair growth down? I've been taking a ton of biotin (10,000mcg/day), maybe that would help? I'm cutting my fingernails about every 10 days, they are really growing fast.
I'm glad the effexor is helping you so much.
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thank you all for compliments! I did it to show Hair growth 12 weeks PFC and just incase others wanted to color their hair.. i did it at the salon, no special precautions taken and my hair held up. Thank goodness...lol
Debal, I would love to see a group pic..sounds like u will have an Awesome Saturday with friends.
Gawarrior. Im not ready for hair growth to slow down. But yes I e been taking biotin and castor oil on scalp during evening.
Happy Friday!
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