Dis Breast Cancer Survivors - GAGWTA!

[Tinkertude]

I just edited my profile. It made it real, and I almost got teary-eyed I am offically now a 10 year b/c survivor. God bless the pals that stuck by me, the new pals that showed me the ropes, the Medical professionals that used their God given talents to help God give me a new lease on life and my family that are the best reason for living I can think of .

 

[MNSusan]

GAGWTA! I hope everyone is having a good new year so far.

Tinkertude, what a nice message! I only have nine years, ten months to be where you are!

A question for you ladies: Who's been on Tamoxifen and how was it? I'll most likely be starting after I see the med oncologist on Jan 10. I've been reading stuff on breastcancer.org about the side effects and its scaring me silly. I keep telling myself that women that are doing okay probably aren't posting, but there sure is alot of bad stuff being written.

I just turned 50 a couple of weeks ago and am premenopausal - haven't had any symptoms yet. It sounds like Tamoxifen is going to slam me right into menopause with mood swings, hot flashes and weight gain. I know its worth it to reduce the chances of recurrence, but it sounds gruesome.

Anyone have a good, or at least not horrible, experience?

 

[snappy]

Susan, I've been on Tamoxifen since last summer. I was almost 51, still premenopausal as well when I started on it. It did send me straight into menopause. I have hot flashes, even in winter, but I find I am adjusting.
The two summers were a bit difficult. Absolutely can't stand not being in air conditioning. I have several friends who do not have BC who had a much more difficult transition, prolonged bleeding, etc. when starting menopoause.
Mine just ended in November. I really think it depends on the individual. I do drink lots of cool fluids, dress in cotton, and I can't tolerate socks at night. You kind of have to experiment around with different things, like fans.

I had heard that chemopause is rough. I think I got off comparatively easy.
Try not to worry too much about what you have read from other's experiences. Due to your age you might just slip quietly into menopause.
I hope so!!

 

[NHAnn]

Still thinking of you Beth, and as snappy put it, your "contagious spirit"

Susan, I experienced surgical menopause as result of a hyst at 44....managed quite easily with 1 mg estradiol daily...which in turn may have contributed to my DCIS at 48 so it was cold turkey for me after diagnosis and then onto a study drug to counteract what my body and the 1mg no longer produce anyway I'm on either Tamozifen or Arimidex in a blind study. I am tolerating it very well, my symptoms seem more in line with the Arimidex ones - I have some achiness in my legs and joints especially if I fall off of my exercise plan (walk at least 1/2 hour 5 days a week) My hot flashes are very manageable and can be triggered by hot drinks, alcohol and excess chocolate, so I try to avoid those or use very very moderately and occasionally. I also use a supplement called Peridin-C which has been effective for me on the hot flashes. Snappy's use of fans and layered cotton or "wicking" type fabrics and water are typical of the approaches that you can try. Also, try not to "assume" that it going to be horrible ...Many women tolerate it very well I believe Laurabelle on this thread has finished her Tamoxifen and did not have any of the horror stories.


HAve a great day all
GAGWTA!!

 

[snappy]

Good luck today at work, Ann, after being off for the holidays.

I can relate to the dread of returning.

I worked for 16 years for a publicly traded company in New Orleans, which releases earnings on a rther quick baisis every quarter. In January we worked like dogs in order to meet deadlines, seven days a week, late every night, sometimes through the night. Whatever it took.

I had lots of vacation so I often took an extended leave around Christmas. Going back to work on Jan 2, especially once we had kids, was like heading off to prison.

I miss many of the folks I worked with and for, but I don't miss the stress.

Hope your morning and week goes as well as possible.

Enjoy your dinner with you sistas tonight!!!

Laura, hope you are feeling stronger.

Beth, how is your back?

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Thanks for all the good thoughts and prayers. My GI doc wants me to have a test to rule out C. Diff. infection, though I seriously doubt I have it. He did this test in the hospital too and I didn't have it then either. He wants me to try the suppositories again, though they didn't help before. He said if I'm not better in a week he'll schedule my Remicade sooner. Thank you for your prayers...please pray this works. I really don't want to lose my colon.

Beth- It's good to see you posting. I hope you're getting better every day!

Tinkertude- Congrats!

 

[Pea-n-Me]

GAGWTA! aw:

Laura, keeping you in my thoughts and prayers.

Tinkertude, congratulations!

I have an HP laptop as well. Now you, too, can Dis From The Potty.

I guess the beauty of working holidays is not having to dread going back afterward. Now WDW vacations are another thing altogether... You really do have a double whammy on your hands.

Anna says hello to all of you!

snappy, your job sounded very stressful. I can understanding missing the people but not the stress.

MNSusan, my tumor was ER/PR negative so I am not a candidate for tamoxifin. Before I knew that, the side effects scared me a bit, but now I wish I could take it despite them. You'll find your answers from the great ladies here.

 

[snappy]

Anna says hello to all of you!

snappy, your job sounded very stressful. I can understanding missing the people but not the stress.

Hi back at ya, Anna.

I am thinking it is even more stressful there now, Linda. I tried to reach someone there this am to ask about something on my 401K. The office was in a building directly across from the Superdome on Poydras in N.O. My call went directly to phone mail, and I have not heard back. I am wondering where the staff has relocated to. I hope everyone is ok.

Thank God for nurses like you, Linda, who work during the holidays. Being in the hospital over a holiday is tough.

 

[Pea-n-Me]

Believe it or not I've never really minded working holidays. There's something special about being there for people who need you, especially when they may not have anyone they can be with on the holiday.

 

[MareQ]

Stumbled across this page. Just wanted to give all of you a..... ((((((((((((((((((((((BIG HUG)))))))))))))))))))))))))

I lost my mom on 8/17/01 to breast cancer. She was diagnosed at stage 4 - we didn't know what hit us. She had only just turned 54 2 weeks before she died.

My heart goes out to every person and family member that has to face this battle. Stay strong!!!

 

[snappy]

Glad you found our thread, Mquara.

Sorry about the loss of you mom back in 2001.

Thanks for the words of encouragement.

GAGWTA!!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~
Linda- That is too funny! Apparently the Tag Fairy has been reading our thread too!

MQuara- I'm so sorry you lost your mom to this beast, 54 is far too young... please take care of yourself.

I got such a boost last night...I found out my scholarship application was approved and I'm going to Denver next month for the Young Survival Coalition conference! It used to be held in Philly which was so much closer, but they decided to move it out west to include more women who couldn't attend before. A bunch of my sistas from my website are going, plus I get to visit my in-laws who just moved to CO a few months ago. God knows I sure need this now! Hopefully things will be settled down for me healthwise by then...

 

[snappy]

Great news Laura, congrats on your scholarship to the conference. Great timing with the inlaws there as well. I wanted to send well wishes last night but the dis seemed to be AWOL.

DD10 has a nasty rash with blisters on her right forearm, she went to first aid at least 3 times yesterday, the nurse even called me in the afternoon. It surfaced during the day and burns like all get out. I applied hydrocortisone last night and this morning. Off to the dermatologist this afternoon. First doc visit for the new year. Here we go!!!!! SSSHHHHEESSSHH!! I am still not done filing all the claims for last year. BUMMER!!

 

[Pea-n-Me]

Hi All, just a quick vent.

Does anyone remember the story of the acquaintance I know who's injecting herself with a substance from Canada and drinking tea she believes is going to cure her from Inflammatory BC (she's refused herceptin; I never did give her those articles on herceptin because it was clear from our conversations she would not be open to it)? Well I ran into her today even though I've been trying to avoid her. I just feel bummed out every time I talk to her. She was very much "in my face" about how great the stuff is working and that a young man in her group was "cured" of "spreading cancer". She kept asking me if I was ok and she seemed almost disappointed or doubtful when I told her I've been fine. At one point I think she sensed my irritation, but I held back what I really wanted to say because I didn't want to hurt her feelings or discourage her from what she believes in. The thing is, though, that it's not what I believe, and I wish she wouldn't keep pushing it on me.

She put a damper on what was an otherwise pleasant day today, and I decided that the next time I see her I'm going to have to say something so that she stops laying this stuff on me. I did tell her that we all have to do what we believe in, but I stopped short of saying that what I believe is very different from what she does (which she knows from previous conversations). I believe with all my heart and soul that her negative, almost paranoid assertions about the medical profession and hospitals have no merit. She knows I am a nurse, but she really doesn't know what it is that I do, or anything much else about me (she's a cashier at a store I frequent, I only know her from there). I should say, I never thought of her as anything other than a pretty normal person, but I'm beginning to wonder if she's a little, well, you know. I should also say that I'm usually pretty forthcoming with what I have to say, but I worry a lot about this woman (who has two young children) and I don't want to belittle her belief system in any way.

OK wise women, how should I handle this? It's driving me nuts.

 

[laurabelle]

~~~***GAGWTA sistas***~~~
Linda- I think you've handled the situation well. I'm sure you'll have the right words to say to her, and in your own gentle way you can let her know you each have your own way of fighting this disease and you would appreciate it if she would not expect you to do the same things she does. I don't know any two survivors who have the exact same cancer, why would we all do the same treatment?

 

[snappy]

I think you have certainly handled her with kid gloves, Linda. At this point, I would gently say basically, to each his own, and end the conversation. she sounds very outspoken and what I lean towards with a person like this either avoidance, or walking away when they start with the complaints and negativity. Hopefully, she will get the idea if you walk away consistently, and end this line of discussion.

You can't change her mind, don't let her ruin your day. If she wants to wallow
in paranoid feelings towards the medical profession in general, then let her do it without you as an audience.

Sounds cold I know but she has not been truly considerate of your feelings despite her asking if you are ok. I think she at some level might want you to doubt your approach to BC and that is inexcusable, IMHO.

My 2 cents anyways.

Laurie

 

[MerryPoppins]

Linda, I think you are handling it very well. Just don't let her get under your skin. Just as she has the right to her beliefs and approach, so do you. Tell her so. I wouldn't be negative about her approach (even though you feel that way). I'd just say, you have your way and I have mine. Glad it's working for you. My way is working for me too. Then change the subject or walk away.

Susan, I can give you the details on my experiences with Tamoxifen if you'd like. Just PM me. Some of what I'd say has trouble getting past the filters. I was (and still am) premenopausal and have been on Tamoxifen since June of 2002. Nothing has been bad enough to make me stop taking it. I'm pretty determined to stick with it, but there have been some negative side effects.

 

[Pea-n-Me]

Thanks, guys, that was helpful.

 

[NHAnn]

I remember you telling us about her Linda.

She kept asking me if I was ok and she seemed almost disappointed or doubtful when I told her I've been fine.

.....I should say, I never thought of her as anything other than a pretty normal person, but I'm beginning to wonder if she's a little, well, you know.

Linda, to me she does sound a little, well, you know And maybe a little insecure or subconsciously doubtful of her own decisions, perhaps? That she may feel that you (and/or the established medical community as a whole) have to be wrong in order to justify her own actions to herself ? Or maybe she's just pushy and insensitive...in which case I'd avoid her. I'm sorry that running in to her gets you down. I agree with all the comments posted....firmly but gently tell her you have a different outlook on the matter and walk away if you can or change the subject...and if she persists I'd avoid her altogether.

 

[Pea-n-Me]

Boy, you guys are good. Thank you, Ann.