Calling all TNs

Paintingmywaythru

Welcome Jojo...a lot of info here.

And yes, I chewed on ice, ice pops, cold icy water and have biotene, salt wate rinses, nystatin,diflucan, miracle mouth wash, steroid paste, regualr dental care, but I also have rheumatoid arthritis which makes ones mouth dry and have an auto immune mouth disease for the past 10 years called lichen plantis. Unfortunately, even with super careful mouth treatment the vehicle for my infections tends to be my mouth, so yes I do everyhing but I am just stuck with a preexisiting condition that had already made my mouth very fragile and the chemo jsut blew it out of the water.

I have been able to keep the first round of ulcers under control but this is a new occurence and in a very hard spot to get the steroid to stay, it is on the side of my tongue.

Anyway, I am trying everytihng and following all my regimes but I haven't been able to get it to setle down as yet and this means that I can't eat.

With percocet at least I feel I can work a bit, and be able to talk btu otherwise Iam resting and trying to get this under control.  It is frustrating but not the end of the world. I just wish I hadn't had it rise up this second time because it limits what % of chemo I can get and I want as much as I can to blast this thing out of me.

Am trying yogurt on it as well.  Cant thinkof what else to do. I will see the breat surgeon Friday and then get vlood work and IV fluids afterwards. I have a busy weekends and hope I can pull it off.

My best to everyone.

ksmatthews

JoJo welcome to the boards, but so sad you have to be here.  Just stay positive, and strong and you will be fine.

((hugs))

laurajane

Good morning ladies!

Painting- I hope you feel better soon. I would love to see your paintings. Do you have a website? Congratulations on your solo show. I hope it turns out great for you.

MBJ- Thank-you. I'll look at that. There is so much conflict as to what to take. The Integrative doc I saw at Sloan Kettering said I should not take any anti-oxidants while on chemo. Confusing. Look where I'm at now. Scared on which way to turn.

Titan- 3 Miles? That is awesome! I'm so proud of you.

Tifj- Thank-you.

Welcome JoJo- We are here for you. You look fabulous your age surprised me. This journey will be a tough one but I hope it goes smoothly with few SE's and is soon in your past so can can move onward. These gals have helped me alot. I'm so sorry to hear that your daughter has had to fight this beast also.

I hope everyone has a good day today. My eyes are tightly closed and I'm concentrating really hard as I'm sending caring positive thoughts to each of you. Can you feel it? Electrifying isn't it?

Luah

Welcome Jojo.

Best wishes to all those suffering through chemo side effects. Totally sucks, but it will get better.

Titan: 3 miles, that is excellent! I do 3 miles 5X/week, but power-walk through about 60-65% of that, and then run intervals in between. I've been trying to extend the intervals over the last year, but find it hard. I get out of breath and too hot! With cooler weather, I hope I can ratchet it up a bit. Just curious: what time do you do for the 3 miles?  

Paintingmywaythru

Laura Jane my website is:

www.susanmedyn.com

I also post on the following:

http://dailypaintersabstract.blogspot.com/
http://illustratorsinternational.blogspot.com/
http://dailypaintersofrhodeisland.blogspot.com/

and just saw a review of my work in a Hoboken, NJ paper.

If you googled "susan medyn watercolors" and looked under images I imagien you might see lots of pictures of my work and links ot websites as I have different work in differnet galleries.

Hope all goes well with your treatment.

And to everyone.... I think my mouth is  going ot be the place for my worst SE's to appear...

Should take a vow of silence.

Susan

MBJ

Suze: try Trytophan or 5HTP

jenn3

JoJo - Welcome!!!  The support here is wonderful.  (((Hugs))) Jenn

I just wanted to pop in to say hello!!!

Anonymous

My Mac is sick again so I'm on this blasted PC...

It's VERY hard on my neck (big screen but angle of viewing kills me).

TWO YEARS TODAY SINCE MY Dx---

Titan

May I talk about the walking/running thing for a moment?  I've always liked to run..but that was a long time ago..b-4 kids, their sports, etc...After I was diagnosed with TNBC I read from several studies that exercise was excellent for us...oncs were all for it..so anyway..during chemo I decided to try to start walking...it was very slow at first...8 laps around the track is 2 miles..I was proud of myself during that time if I could do 3 or 4 laps...sometimes..during chemo..I felt a little dizzy and had to rest awhile...along with my DH I had a couple of friends walking and we would just talk..they would listen to me about my treatments, my cancer...it helped my emotionally and physically...I would see other women jogging during that time and I though..I want to do that...so I started to work up to it...now..28 months later..I have run in 5K's....and my time isn't bad...not good..but not bad.

I dunno..like KS..I don't mean to brag..but dang it..I'm a little proud of myself...it took alot of time and effort to be able to do those 3 miles...sometimes I feel like I can run forever...

I downplay the BC thing...but I tell you..when I have friends that run with me (and you guys)...telling me how proud they are of me I am in tears...thanks!  

We all know how hard it is to go the extra mile when we have BC..whether it is running or just trying to live a normal life...

I'm proud of us ALL...

Titan

Welcome Lizard (I like that!)..and JoJo to the TN thread...like others have said we will be here with you....hang in there...we will be with you through your treatments and beyond.

riley702

Had my 3 month follow-up with the MO today (see the surgeon in a couple weeks). I've been taking 4,000 iu's of D3 a day and my Vitamin D level was only 30. Which is way better than the 12 it was when I wasn't taking supplements! I think I'll bump it up to 5,000 iu's and see what my level is in Nov.

My CA 27.29 tumors markers were 20, down from 23 last time and at the same level I was at 6 months ago. They said they won't worry with minor fluctuations, esp. since it's all less than 40, which is the normal range.

I asked him (and his assistant who came into the room while he was gone - sneaky!) about the mild edema in my ankles when I'm on my feet all day. Both gave the same answer and blamed it on the Tamoxifen, which is already being blamed for 20 extra pounds I just can't seem to drop, and a decrease in my good cholesterol that I'm taking Zocor for. She put a note to test whether I was really in menopause with my next set of blood work. If I am, they'll change me to Femara, if not, we'll continue the Tamoxifen. All this for an essentially TN tumor. Sheesh.

PS - forgot to mention I also asked about a couple of small dry flaky patches on the back of my shoulder where I got some of my rads. I was worried about skin cancer, since I know that rads accelerate skin damage, and I can't see it very well. He called it radiation-induced eczema, which was a new one on me. He didn't think it was worth sending me to a dermatologist to look at it. Hmm. I might bug my primary doc for a consult, anyway. I know she would order it if I wanted it.

christina1961

JoJo and Lizard,

I am sorry you have to be here to join us, but you will find these women a great source of information and support.

Suze, I hope the nausea eases up - I don't know if you've ever tried peppermint tea for nausea but I've found it helpful - if I don't have acid reflux going on at the time (which I did with TAC.) 

Painting, just remember all this will be over with at some point.  I didn't have the mouth issues but I know that must be painful.  I did have thrush once during chemo but the diflucan zapped it.

Titan, you are inspiring me to start running again once I get some walking under my belt.  I tried to jog for just a minute yesterday but I think it is too soon after my uni MX. 

Lovelyface

Hi Everyone, I have been sleeping after work every day this week, so haven't been reading all the posts.  A lot to catch up with.  I have been very very tired.  I have a mild case of sleep apnea, so last night I tried to use the machine.  And guess what?  I think I was feeling better today.  I got a little more energy after work today.  Anyone else have sleep apnea?  Do you get helped by the CPAP machine?  I will go read the posts now.  Hope everyone has a night evening, night!

kyroheal

Heidi-Congrats on the 2 year!! That's a great accomplishment!!! Praying for many more

tnbcRuth

Wonderful Heidi!  The more time we can put between our dx  and today, the better!!!

Within my group of local friends, there is a run honoring cancer patients and survivors next month.  For a donation of $10, the high school runners will run with a sign with your name on it.  I've not done any 'cancer survivor' stuff, but I think after going thru hell and back, my name deserves a place in that run! 

ksmatthews

Titan I am super proud of you.  I am gonna start walking and soon I hope I can start running.  I have never been into that, but think it is something I would really love.

Suze35

Heidi - that is wonderful news!  Each month now you are in the downward curve, that is great!! 

Titan - your running is both an amazing accomplishment and very inspirational .  I'm going to the local YMCA next week with my BF and joining so that I can use their pool... and every time I want to stop, I will think of you pushing through. 

Lovelyface - I have a good friend who uses a CPAP machine - it has made such a difference in his life!  He has so much more energy and feels better.  Also, even mild sleep apena can lead to heart problems down the road due to lack of oxygen.  The CPAP helps prevent that.  I say use it if you have it!!

Lizard and JoJo - welcome, although I'm so sorry you are here. 

Riley - I hope you and your doctors can find a good alternative to Tamoxifan.  I know it probably feels crazy to take it for such a low ER+, but then you start to think, what if?  I don't necessarily have excema, but I've been getting little "pimple" type things on my scar line that come, then go.  My doctor is pretty sure it is related to the radiation as they aren't acting like skin mets.  Radiation can do crazy things to our skin, even months later.

christina - thank you for your thoughts.  The nausea is manageable, I took a Compazine at another's suggestion, and it seems to help better than the Zofran.  As much as I'm complaining, this drug is NOTHING compared to AC/T, that's for sure.

LJ - I hope you are doing okay and that Xeloda is treating you well.  Thinking of you!

I hope everyone has a great day!  It almost feels like fall here in the NE - there is that smell in the air.  I'm not even remotely ready to go back to the chill, lol.

MBJ

Heidi:  Congratulations on your two years!  Do you count from treatment or diagnosis?  I will be two years from my diagnosis in September and two years from my MX on April 2. 

Titan:  You are an inspiration to all of us here!!!  We are planning to move out of state to an area where the air is much cleaner, and walking and running doesn't mean dodging cars and choking from smog.  I can't wait!

MBJ

I forgot to mention I just had my follow up with my onc, BS and next Tuesday my PS and so far so good.  Not sure if I mentioned this, but since I started taking Iodoral supplements (iodine/potassium pills) 25 mg a day, my right breast is completely clear and no longer dense when I had my mammogram.  The only people who can't take it are people who are hyper-thyroid.  I get it at breastcancerchoices.org.  Have a great day everyone!

Suze35

MBJ - I forgot to thank you for the supplement suggestion for sleep - I'm going to look into that definitely.  I've been interested in the iodine thing also, but I'm still not quite sure on that one...I'm glad to hear your appointment went well.  My doctor counts from day of diagnosis, I'm pretty sure the studies showing our 3-year info are based on that, but don't quote me .

mamachick

Haven't been on for awhile, but Titan you are inspiring to me too!  I have been taking the walk to run class at the Y for the last month.  Was not a runner before, but want to try.  I want to be able to run some of the Race for the Cure 5K in Sept., but I know I will not be able to do all of it running.  When do you muscles finally rebound from chemo?  Mine give out so quickly and it frustrates me.  I have to stay positive and tell myself to give it time and I am already doing more than I was 3 months ago.

Welcome to all the new ladies.  Sorry you have to be here, but I have gotten a lot of info, support and laughs from these ladies even if I don't post that much.

Heidi-congrats on 2 years!  Do the what if's and worries ease as time goes on? 

Hope everyone is having a good day!

Luah

Heidi: Coming right up behind you, girl! Congrats.

mitymuffin

Heidi, Congratulations! Way to go!

Titian, I know what you mean about feeling kind of proud and you should be proud.   I try to walk some everyday, and its good for the head, as well as the body. 

Paintingmywaythru

MJB.I'd like to know more about the Iodoral supplements (iodine/potassium pills) 25 mg a day. How long you have been taking it? How did you fing out about it? And I have dense breasts so I was wondering if anything would work to change that? What is

 breastcancerchoices.org.?

thanks,

Susan

Titan

Hey Mamachick..you are doing GREAT!  It takes awhile to work up to running/jogging...especially if you are just a few months PFC...but I really think doing anything..like Mity said is good for your body..and your mind.

I'm runing in this 5k next Sat...the brochure for it was from the run 2 years ago..I'm in the freaking picture...I have my wig on...I was 2 weeks PFC (I walked it..did not run)..anyway, in the picture I look so weird...like dazed and confused...I'm thinking..is that what I looked like during chemo??? Maybe...I don't have any pictures of myself "then"...I could have been the poster child for "Chemo brain"....Its kinda funny but really not...

MBJ..hope your nose is feeling better..but a ?? for you..where do you get your iodine tablets?  I asked at my work and they said they weren't available to sell at retail stores...I would have to get them  through the Internet...they were very expensive also.

Titan

Oh..and watch it ladies..running is addictive! 

Have a great weekend everyone!  My DD is graduating from college tomorrow and we are moving her home for 6 weeks..then she is getting married...(hopefully finding a job during those six weeks).

OBXK

Titan - you must be beaming with pride! As for the running addiction - DH has it too. I'm not even sure I'd run, if chased. Well done you!

bak94

Congrats Heidi!

Titan, I miss the feeling I used to get when I used to run, well, more like a slow jog or slog! I am hoping to push my walking speed now that I am off the ac and onto the weekly abraxane-first treatment today. Anybody else have weekly abraxane? How was it?

mamachick

I was never a runner to start with so I have a hard time thinking it will be an addiction for me.   But we shall see.  I hear that from evreyone. 

Titan-congrats for your daughter.  Mine are still young yet, oldest starting junior high this year. 

Suze35

Titan - you must be getting so excited!  Congrats for your daughter - I hope she is able to find a job soon .