Dis Breast Cancer Survivors - GAGWTA!

[NHAnn]

WOW ...laurabelle!! GREAT pics...GREAT day!!!
And Jaclyn was always my favorite from Charlie's Angels!!!
Thanks for sharing the pics!~

 

[Amy]

hhmmmm....anyone else care to share side effects? Anyone know technically what it is about the Tamoxifen that makes some women gain weight?

Amy...are you pre- or post-menopausal? Is it the oncologist that monitors hormone levels when you are on hormonal therapy?

Well, I was pre-menopausal when I started cancer treatment. I assumed it was tamoxifen that put me into menopause, but my oncologist told me that it was the chemo that "moved up" when I would start menopause, the fact that my last period was right before I started tamoxifen was just coincidence. Anyway, yes, my oncologist monitored my hormone levels and it took almost 3 years for them to fall to "definitely menopausal" levels. (I guess I was in peri-menopause first, even though I never had a period.) You can't take arimidex when you're pre-menopausal, so once my hormone levels fell low enough, she was able to switch me from Tamoxifen to Arimidex.

I don't know what it is about Tamoxifen that causes the weight gain. Other side effects are blood clots - I've been taking an 81 mg aspirin every day for that. And although Arimidex doesn't have the blood clot side effect, I was told to stay on the daily aspirin anyway. And there's also a side effect of uterine cancer - I got a yearly sonogram while on Tamoxifen, and twice my lining was thicker than it should be for someone in menopause, so I had to have a D&C done each time. Luckily that turned out ok.

Laurabelle - LOVE the pix! That's way cool that you got to meet Jaclyn Smith. I've never done the walk/race for the cure that we have here in Pittsburgh - they always do it on Mother's Day, and dang it, that's MY day to sleep in and sit on my butt and let my DH and kids wait on me. I wish they did the race for the cure on some other day!!

 

[Miss Mickey Mania]

I had a great time yesterday! This is from my blog...

I just stumbled on this thread as I don't make it to the community board very often. Congrats on doing this race! It looks like you had a wonderful time, and got some excellent photos!

My mum is undergoing chemo at the moment - diagnosed with bc in early March. So far she has had 3 sessions with several more to go. We were due to go to WDW next month but it was cancelled - no I should say postponed. I'm going solo instead.

I'll try to keep up with this thread and check in to see how everyone is doing.

Louise

 

[Cruise04]

Oh Laura - thanks so much for sharing those pics!!!!!! How totally awesome to see that many survivors around!!!! Made me teary - things like this do. What was the difference between your shirt and Lisa's? Looks like the weather just good enough for the walk. And how cool is that to meet Jacklyn Smith. Can I ask what the six ribbons on your hat bill mean? Is that how many races you've participated in? Congrats for doing the walk!

As far as menopause and depression - my mom went through menopause very quickly due to her chemo as well. Was through it in about 6 months - total - after her first treatment. Plus she was taken off HRT immediately so that helped too. And her depression was very bad during treatment - and she wasn't taking Tamoxifen. I even got to a point where I called her oncologist (he is and was an awesome man - he was with my mom when she passed away and was with the doctors and when they came to tell me she had passed - I still remember him coming right in and giving me a huge hug as he was crying and telling me he was sorry) and told him that I was worried about her depression and possible suicidal thoughts. She would call me and just start crying - over stupid little stuff. And sometimes it would just be because I said hello when I answered the phone. And this was in the early stages. I was really worried about her freaking out on me if I told her I thought she needed to see her doctor about depression so I told her oncologist that I was concerned and to see if he would talk to her and he did. She was very mad at me at first, but then once she started on the Paxil she was happy I did that. It was part of making sure she took care of herself.

 

[laurabelle]

Cruise04- Lisa had an old shirt on! lol! This year they decided to make it lighter pink, it doesn't show up as well in pics as the dark pink. My friend Dana is wearing our new SIS (Sisters In Survivorship)shirt. This is the online group I founded for young women with bc. I'm saving my shirt for June 18th when a bunch of us are getting together in St. Louis to do the Race For The Cure together. The shirt has my butterfly that one of my friends designed for me, that will become my tatoo in St. Lou! The 6 ribbons stand for my years of survivorship, I'll hit 7yrs in Dec. I did my first race while on chemo. I tend to do two races a year, though this year it will be three. I've probably done 14 races.

Amy- A good friend of mine does the Philly race! You should try it, you're done long before lunchtime and you can be pampered the rest of the day...

Louise- I'm so sorry your mom is going through this. I hope you are able to help her plan a WDW trip to celebrate when treatment is done. It really helps to have something special to look forward to...

Ann- She's always been my favorite angel too! She talked to us for a long time, she was really sweet. Her speech to the crowd was great! She talked about how much her girlfriends helped her out...

 

[Pea-n-Me]

Laura, the pictures are great and you look wonderful. It must feel very empowering to be with all these other survivors. Really incredible, thanks for sharing them.

 

[Dan Murphy]

Very neat, Laura. And, Louise, prayers and good wishes are with your mom. She is on her way to remission and being a survivor.

 

[Tinkertude]

Great Pics Laurabelle. I do Race in Tulsa. I have met Brinker in the past, what a woman of vision. Race for the Cure is a money making engine that funds soooo much research and support for survivors.

 

[snappy]

Hey good morning everyone.

This thread slipped down a bit, time for a bump up.

Just wanted to say how much fun my family had at WDW last week. It rained 5 days out of 7 but that was a good thing, kept the temps down dramatically and lowered the crowds significantly as well. We especially had a blast at MK, I think it is easier to get around there with rain than the other parks because attractions are closer.

We did Soaring at EPCO, awesome! We tried to do it the Sunday before Memorial day but the standby wait was 150 minutes so we returned another day and used fastpass.

We also saw the Stunt car show at MGM, also awesome. the show lasts for 35-40 minutes. We got a fast pass (t was star wars weekend) but standby people got in to. It does eat up a big block to time but it is so worth it. My almost 17 Year old DS really was into it but we were all happy.

We stayed in a 4 bd 3 1/2 bath villa. It was great to spread out and we had room for my brother Tom who flew in from NY for 3 days. We sprung for pool heat which was a very good thing due to the rain and lower temps. That water felt great day and night.

Back on topic for this thread, I am going for my first post surgery mammogram (diagnostic), blood work, and chest xrays today at 10 am. I was dreading this a couple months ago, but I purposefully scheduled this for after our trip so I would busy getting ready and enjoying my trip. Now I just want to get this over. One good thing about the diagnostic mammo is that it will be read while I am there so I'll know if anything else shows up right away.
I think I am going to ask before hand to talk to the radiologist either way.

Anyway, just wanted y'all to think about me at 10. Also, keep my Tom in your prayers. Something showed up on blood work (liver enzymes) twice right before our trip, and he had to have a biopsy Tuesday on his small intestine. No results yet.

Thanks,
Laurie

 

[Pea-n-Me]

snappy, good luck to you today. You and your DH will be in my prayers. Glad you had a good trip, I didn't know you had one in the works!
I am off to endoscopy today.

 

[MerryPoppins]

Thinking good thoughts for all of you!

I go for a visit with my OBGYN in a couple of weeks. Not having periods the last few months, so I'm hoping he won't say I need a DNC or something. I'll remind you guys to cross your fingers for me before I go. I actually think I worry more about paps (and the possibility of finding out I have uterine cancer) than I do my mammograms anymore. Maybe because I've done breast cancer once already?

 

[NHAnn]

Let us know how it went snappy..sending good wishes to you and your DH! Glad you had fun at WDW...I can't wait until Christmas to catch the new attractions and enjoy the holiday spirit there!!

Hope you test goes well too Linda!

Has anyone heard/seen anything about MinnieM3's surgery yesterday? I think she said on her "PD request" thread that she'd have her DH post at soem point. I'm still thinking of her....yikes that was to be a LONG time on the operating table!

Well we are finally into a stretch of summery weather here int he northeast....and it's about time!!

 

[laurabelle]

Laurie- I'm glad you guys had a great trip! I"m really looking forward to mine next month!
Is this your routine f/u? My onc only does bloodwork unless I'm presenting symptoms. I don't get mamms because I had bi-lat masts. I'm praying everything goes well for you and Tom...

Linda- Praying your endo. went well today too...

MerryPoppins- praying for you too! I think with us, they tend to worry more if you are having alot of bleeding...

 

[Cruise04]

I'm just seeing this for today and I hope your tests went okay snappy. My mom use to have to have a whole slew of stuff done - mammo, ultrasound, blood work, ekg's (that was the second time around because the lump was near her aorta), bone scans once a year, spiral ct each checkup.

NHAnn - you will LOVE Disney at Christmas. I am beginning to get excited to go - and we have a little over 6 months. About the 6 month mark is when I start getting psyched. We're taking my dad, who has only been once for 2 days since 1979. I think that's what I'm more excited for!!!!

Have a good day everyone!

 

[MerryPoppins]

I have no reason to really worry. Just routine. But worrying comes naturally to me after the baseline mammogram that showed I had cancer. LOL!

 

[snappy]

Just back, the mammogram looked fine. I joked with the tech that I should only pay half price since I have only one breast now. I know my blood pressure was way up this morning. I felt like I was on pins and needles especially when they called me into a room to tell me the radiologist had read the views and everything was clear. Just glad it is over. I called my sister (who had a surgical biopsy that removed a huge area in one of her breasts also last May but was thankfully benign) who had her screening mammo Friday. Hers was all clear as well. Now we are waiting to hear about Tom.

I have been seeing my cancer doc every four months since my surgery May 2004. He orders blood work (checking liver function) and chest xrays each time (except this past March, so I am getting the tests now before my next appointment with him June 21st), buth no diagnostic mammo until now. I am hoping soon we will be able to space the xrays and blood work out to once a year like the mammo soon. We'll see.

Good luck on your test pea-n-me.

Thanks everyone for the support, means a lot.

 

[JoannaOhio]

I have been seeing my cancer doc every four months since my surgery May 2004. He orders blood work (checking liver function) and chest xrays each time (except this past March, so I am getting the tests now before my next appointment with him June 21st), buth no diagnostic mammo until now. I am hoping soon we will be able to space the xrays and blood work out to once a year like the mammo soon.

And here are my hopes for you that you will eventually experience that glorious day that I did - when my doc says no need for blood work or x-rays unless I experience any unusual symptoms. I still go for an annual checkup/check-in, but it has been 11 years since my mastectomy, and 10-1/2 since my last chemo treatment. (The oncologists count "cancer free" from the end of chemo.)

 

[NHAnn]

glad to hear it went well for you snappy!! Please keep us posted on your DH!
Merry.......I think waiting for appts and results is sooo tough (as a fellow worrywart I can sympathize)

Cruise04...what are your trip dates for December?

Joanna nice to see you...and you'll be at WDW in December too, right?

Last night at the support group they had "stuff" for us....pamphlets and literature as well as trinkets....little blue buttons with yellow letters that say "Cancer Sucks" (took a couple of those...DH has one on his ball cap already though I figured it would be more appealing to DD (18) . Also the little pink tiny pins that look like the pink ribbon.
Got a big packet "introducing" me to the Oncology doc's office...info and the usual forms/questionnaires....wish they didn't ALL have to have their OWN one filled out sicne all the info is basically the same....but such are the ways of medicine and insurance I guess

Still wondering how MinnieM3 is doing.

Hope you all have a good night!

 

[JoannaOhio]

Joanna nice to see you...and you'll be at WDW in December too, right?

Yep, it looks like we'll be at MVMCP the same night. If you see a gorgeous gal with dark curly hair (DD), pushing gray-haired me in a manual wheelchair, accompanied by her shaved-head sweetie in his electric chair, and her 14-year-old daughter - that's us. I think we'll be doing well to keep all four of our party together and organized, so I'm not promising to try to meet up with anybody else. However, if it's "supposed" to happen - we'll probably see each other somewhere amongst the other 20,000 guests.

 

[laurabelle]

snappy- Gotta keep a sense of humor! The last mamm. I had was when we found a lump while I was doing chemo, when I still had my breasts. I had on my long wig and it kept getting in the tech's way. So I said the heck with it and whipped it off my head and she and I both had a good laugh!

JoannaOhio- Whooooo hoooo!!! That is awesome! I was asking my onc about when my f/u would end when I hit 5 yrs, and she said I'm stuck with her, every 6 months for life. Hopefully it will continue to be blood work and a once over social visit...

Ann- That "Cancer Sucks" pin appeals to me too! Filling out forms- ugh! That's always been a pet peeve of mine. I try to go to through my hospital for everything else too so I don't have quite as many forms to fill out...but just wait to see how big your onc patient chart gets! Mine looks like the phone book!

It's probably going to take a while to hear from MinnieM3...we should have told her to have someone post an update. Sending prayers and pixie dust in the meantime...