Calling all TNs
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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?
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Laura Jane my website is:
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
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Suze: try Trytophan or 5HTP
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JoJo - Welcome!!! The support here is wonderful. (((Hugs))) Jenn
I just wanted to pop in to say hello!!!
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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---
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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...
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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.
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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.
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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.
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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!
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Heidi-Congrats on the 2 year!! That's a great accomplishment!!! Praying for many more
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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!
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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.
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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.
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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!
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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!
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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
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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!
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Heidi: Coming right up behind you, girl! Congrats.
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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.
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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
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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.
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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).
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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!
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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?
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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.
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Titan - you must be getting so excited! Congrats for your daughter - I hope she is able to find a job soon
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Can't spend much time on this PC--- puts my neck in a bad position despite being a great HD 32" Mac screen. I'd planned on hooking my Mac laptop to it for photo editing but my neck couldn't handle it.
Downward curve--- I like that.
Dx was 8/11---surgery was 9/9 (and that's the one I really put more emphasis on).
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I have been taking Iodoral since my diagnosis and I buy the 3-Pack on line at BreastCancerChoices.org, a very informative site. Just click on Iodine and there is a link where to buy the supplements. I buy the 12.5 mg and take two in the morning (they will keep you up at night) and there are 180 pills in a bottle.
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Thanks MBJ! I'm going to look into this..did your onc recommend these??
I'm just exhausted...emotionally and physically...busy day tomorrow..again..trying to organize all the daughter's "stuff.
Will be busy for a few weeks..moving the daughter in and the son out in middle of September..meanwhile we will be a family again for 4 weeks....I want this to be a special time for us..
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