Dis Breast Cancer Survivors - GAGWTA!

[Tinkertude]

I really think for fit and style you should at least go to a wig store and try on to get an idea for what looks and feels best. Please check with your inc. co. they may pay for your wig, mine did. Also my local ACS and Y-Me have loaners.

 

[Tinkertude]

Yeah for Ann!!

 

[Shugardrawers]

I did check with my insurance and they'll pay for 1 each year 70% up to $100 so I can get a decent one from a wig store. I really want to have a couple more just for variety. I tried on quite a few at the store and got a pretty long blonde one. Now I'm hoping to find a shorter light brown one and maybe a strawberry/light brown one. I figure if I have to wear a wig I'm going to have fun with them. Dh can have a different woman each day of the week and that could be fun for our marriage

 

[Pea-n-Me]

H Everyone!

Ann, so glad you had good results and you can move forward now.

I do not have the option of taking tamoxifin or it's counterparts since my tumor was ER/PR negative, but I wish I did. If you reread all the studies I posted in the last couple of weeks you'll see that survival rates have improved over the last several years, especially for those with ER/PR positive tumors who are on/have taken tamoxifin. (Instead I am now on a statin and also exercising regularly and following a healthy diet which are things I can do also known to improve survival odds). There are some risks to its use but you are closely monitored. I'll be interested in seeing what questions you ask and the responses you get. I know several people personally who had the option but decided not to take it which surprises me (knowing it improves survival) but everybody's individual choices are to be respected.

Is anyone else here ER/PR negative?

Tammy, the important thing about a wig is that it fits properly and is comfortable. It should stay comfortably on your head even when you're active and out in the wind. It should also look good without a lot of maintenance or fussing. From what I've seen many people buy wigs but don't use them because they're uncomfortable (your head becomes sore when you lose your hair) or they don't like the way they look. I can honestly say I liked mine so much I never left the house without it (except once when I forgot and ran out to get the mail with just my bald head and didn't realize it until I saw our mailman pick his jaw up off the ground, LOL). I could also make it look good with just my fingers or a light brushing which was great. So find something you really like the look of and also is comfortable on your head. I've been strung out this week but my goal next week is to get your care package in the mail.

Now for my own good news. You may remember I had asked for prayers because I was having a bone scan due to some deep right sided pain I've been having. I was pretty much a mess in the few days before the test even though I was pretty certain it would be ok. Your mind does do funny things when testing time comes. Anyway, it was fine so I was relieved and happy. Thank you for your prayers and good thoughts, I know they help. I'm having an endoscopy next week and I really hope they find something that will explain this pain since the multitude of other tests I've had have all been negative. My own feeling is it's my gallbladder but we can't prove it by any of the testing so far.

I am off to chaperone my kids' class today on a trip to the Audobon Society to do a nature walk and make birdhouses. I will be enjoying every second of it.

Have a nice day everyone!!

 

[laurabelle]

Ann- Whooooo hoooo!!! Great news! I'm so happy you've got that behind you and can move on now! I finished 5yrs of Tamoxifen a year ago, so if you have any questions I'd be happy to answer them.

Tammy- I agree with the other responses, at least for your "main" wig, go in person and be fitted. It will need to be cut a bit to suit you too. Even though you'll know you're wearing a wig, you can bet nobody else will know. Heck I have friends who had people want to know wear they got their hair cut, they wanted it too! lol! Definately go for fun looks too! I'm sure your hubby will enjoy that!

Linda- Whoooo hooo for you too!!! I know how your mind plays tricks on you waiting for those test results...it's hard to trust that you'll ever get good news again, but it's extra sweet when you do!!!
I developed ulcerative colitis after cancer. The docs say it's because my immune system is screwed up.

 

[mickeymost]

NHAnn I'm so glad it was good news. I am currently on Tamoxifen, so if you have any questions, I'll be happy to answer them.

Linda I'm doing the happy dance for you My testing time is coming up this month. I have six appts. this month , so stressful. But it's great when it's over! Good luck with the other tests.

I'm off for a get away to Wildwood for the weekend. Have a great one everyone.

Kelly

 

[Cruise04]

So awesome to come here this morning and see the good news!!!!! I had so many prayers going for you guys lately, they won't stop but at least they can reflect on to other parts of your "treatment" and stages.

My mom must have been ER/PR because she wasn't able to take Tamoxifin. The more that I read this thread the more that I think I'm going to contact her ongologist and see what I can do to get her reports from each of her surgeries. I think having those reports from the pathologists would be a good thing to have in my file. I have one from my grandmother, we think she may have possibly had ovarian cancer but it was never proved (no autopsy was done thanks to my lame headed aunt).

I hope everyone has a great weekend and Laura - good luck on your walk!!!!! HAVE FUN!

 

[NHAnn]

Linda that is wonderful news!

My convoluted thought process about Tamoxifen is more to do with the fact that I just don't like taking prescription meds long term...I have a lot of thinking/reading to do before I see the medical oncologist in a few weeks

Wishing you all a GREAT weekend!!!!

 

[MerryPoppins]

Count me among the Tamoxifen takers on this thread. I've been on it for 3 years. My doc said I could opt out for a while, but she really wanted me to take it eventually. Guess I felt like I might as well get it over with. I'm not crazy about taking meds long-term either.

Good news all around. Glad our prayers are working over-time.

 

[Mackey Mouse]

Hugs to all, especially those with great news and those battling this dread disease......God, I wish they would find a cure in my lifetime.. I pray for that all the time.......I cannot stand watching people so sick with cancer, it breaks my heart.

 

[Shugardrawers]

It's encouraging to see that everyone is taking an active role in their treatment by researching and discussing options. After all the reading and searching I think I have to agree with my doc that we are taking the option with the best hope of remission. It's certainly discouraging to read that my peritoneal cancer has an almost 100% mortality rate. I figure life has a 100% mortalitly rate therefore I'm no worse off than anyone else Humor helps. Chemo starts tomorrow and I'm not looking forward to that. Ugh. But whatever it takes ya know? Linda, you take care of yourself first then worry about care packages. I plan to be here for a while so I can wait.

Question, where does one get a wig styled? The wig store or a salon? Does every hair dresser know how to do it or do I need to call around? Love my wig but it definitely needs some personalization to really suit me.

 

[NHAnn]

Thanks for stopping in here Marsha and hugs and prayers back at you.

Shugardrawers.....my thoughts will be with you tomorrow!

I love your line about life having a 100% mortality rate ...and SO true about humor being important
My 82 yr old father refers to any kind of cancer as "The Cancer!" ...or phoenetically in his Boston accent "Duh Cansuh!" As in...."Oh my God, your cousin Mary Lou has Duh Cansuh you know, but she's going to be OK" Or..."Your Uncle Joe DIED from "Duh Cansuh" you know, but he'd been a smokuh all his life!" A couple of times in the last few weeks we have gotten sort of "punchy" around here ...DD(18) to me: "Oh Mom, have you told Grampa about "The Cancer" yet? You know, Capital T, capital C? Be gentle with him. He'll have a "haaahht attack" (in her attempt at his Boston accent). Me to DD: "I'm not worried about Grampa, I'm wondering WHEN are you going to do the laundry you brought home from college?? Don't think I"M going to do it for you, especially now that I have The Cancer!!" DD to my DH when he got in from work one night last week: "We need to go out to dinner. We're all too tired and no one feels like cooking, especially Mom, she has The Cancer you know!!"

 

[Tinkertude]

I did my prescribed 5 yrs of Tamoxifen. My only side effect was hot flashes. The doc gave me an Rx. for a drug call Bellapas. It was a combo drug of belladonna and phenobaritol. At one point my girl friend was put on effexor for same side effect but at a lower dose than you use for anti depressent. I asked my doc for Rx. But Bellapas worked best for me.

Which brings up another subject. Anti depressant drugs. I did not take them because my family freaked out when the doc gave me Rx. But in hind sight I needed them (at least until I had my plan of action in place) and should of thought of what is best for me at the time.

 

[Amy]

I took Tamoxifen for almost 3 years - my main problem was weight gain - 35 pounds! No matter what I try - dieting, exercising, joining a gym - I just can't lose the weight! My hormones finally fell low enough that back in Feb. my oncologist switched me to Arimidex - the weight gain has stabilized (I'm not gaining any more, but I'm not losing any either, dang it!), but now I've got horrible bone/joint pain, mostly in my feet and lower legs. When I get up in the morning, I'm like a little old lady, hobbling around. After about 10-15 minutes of mild stretching, I'm ok. We'll see how it goes.

 

[NHAnn]

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?

Tinkertude....I guess that's one of my reservations about drugs in generals...you take a drug for something, then you need another to combat a a supposed side effect, but maybe that's not what caused it. I mean...say I start taking Tamoxifen and then I'm feeling depressed. So I go on an antidepressant...but maybe it wasn't the Tamoxifen that really caused me to be depressed. But anyway...now I'm on both and I have other side effects or interactions.....bleeeehhh....I don't know...it's kind of chicken and egg-ish to me I suppose I'm reading too much into things and "bleeding before I'm shot" again as my DH likes to say so I've gotta get my list of questions concerns organized for the doc.

 

[Tinkertude]

I did not mean to infer that Tamoxifen makes you depressed. My friend was given effexor at a lower dose than you would take for depression to combat the hot flashes. I was talking about me and the need for a little something to help me during the first few weeks after dx. I really felt broken hearted over the fact that my sense of well being had been taken away. It didn't last long because I went into fight mode pretty quickly. As far as taking tamoxifen, for me I felt it was a saftey net after every thing else I had done in tx.

 

[NHAnn]

Oh that's OK Tinkertude, I did not think you were inferring that, though I do think I read that mood swings/depression can be a side effect for some.
And I totally hear you about those feelings post-diagnosis ...having just gone though that! Just getting into fight mode myself here while still mourning the loss of that "well being"

 

[MerryPoppins]

Side effects? Let's see. I've experienced hot flashes, ******l dryness and discomfort (can I say that?), loss of some pleasant sensation, and some loss of libido since starting Tamoxifen. How much is due to the drug and how much is due to menopause I'll never know (in other words I may have had the same symptoms if I didn't take it).

DH and I decided that the benefits outweighed the risks. I've considered going off it several times in the last few years, but my DH is very understanding and supportive. He wants me to finish out the five years.

 

[NHAnn]

Thanks Merry. I understand ....have had some of those issues (except not generally any hot flashes) after my hyst even with the estradiol. My DH too is understanding :teeth
Enjoy the rest of the weekend ladies!

 

[laurabelle]

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

Yesterday was my 7th National RFTC!!! I raced with my family and my friend Dave, who has been there with me every time, and it's awesome of him to make time in his busy (and I'm not kidding) busy schedule to do it with me every year! So, without further ado...June 4, 2005, the race in pictures...

Before the race starts we have the Parade of Pink

Where's Waldo?

During the Parade of Pink, they line all survivors up on stands around the stage and have guest speakers. There are always celebrities...this year there was eye candy -Ricardo Chavira from Desperate Housewives (whooo hooo) who sadly lost his mom to bc when he was 16yrs old.

I hung out on the stands with Jennifer who I met last month at Breast Friends

And here's me and DanaG and Lisa with her baby Molly (who later would be our ticket to, well, you'll see in a second!)

We got bored in the stands as some of the speakers who weren't so cute ran long, so we spyed Jaclyn Smith (who had received the survivor of the year award) just behind the stage. So me, Dana and Lisa just climbed down the stands, walked behind the stage right up to Miss Smith (Jackie to us...) with Molly, who proved to be our secret weapon to meeting celebs! It was love at first sight!
Here's Jaclyn with her Daughter holding Molly

Jaclyn with Molly (Lisa is starting to wonder if Jacklyn is a dognapper)

And finally- the NEW Charlie's Angels

I got her to autograph my co-survivor fan and she wrote Laura, Much love, Jaclyn Smith. She is so sweet and absolutely gorgeous in person! She has def. replaced ONJ as my fav. celeb survivor!

Then Dana and Lisa (after ripping Molly from Jackie's arms) and I worked our way back to the Survivor Tent to meet up with our teammates (did I mention the race already started???) when we ran into Nancy Brinker, sister of Susan G. Komen and founder of the Komen Foundation. Molly is great bait! Unfortunatley Dana isn't in the pic as no one else was around to take it for us and she had the camera.

All my sistas were riding on my back

Peace out!