Learning more each time

lynn1950 said:

Hi Jackie
I hope you are feeling OK after your treatment. I am also praying for Moopy and Mimi. Just remember: Ativan IS very nice. I have fond memories of it. (The steroids kept me hopping too.) Compazine was not helpful. Zofran was good and I've heard it's good for carsickness, too and it doesn't make you drowsy! My eye doctor told me that. Unfortunately, he knows about it because his wife has cancer.

I am a little bit farther along than you, but from reading your bio, our cancers sound very similar, except that I am HER-2 negative. I finished radiation in October and started taking Arimidex. Thanks, Kathi, for sharing that the chemo can CAUSE osteopenia or osteoporosis. Before chemo my bones were just fine, but when I had a bone scan afterwards, I had osteopenia and have wondered if that effect was from the chemo. That bone scan is important! I take a drug called Boniva once a month to prevent osteoporosis from the Arimidex.

There is so much to learn - so many changes. It's not only the club nobody wants to join (as Lili says), it's the post-grad education none of us wanted to take!

Remind me - are you from rural Montana? I live in rural Idaho; I moved here from Montana and always loved living there (Polson, Fortine, and Eureka).

I too am not getting threads in my email inbox. I thought I did something bad!

PS. You and your husband look beautiful together!

rjjj said:

Thanks all!
Can't tell you what it means for you to say i look ok.. i need to hear i am not a leper which is how i felt the first couple days!! I asked my son if he wanted to see my bald head. (i was wearing a hat at the time and he replied "not really" I think it was to hard for him to take..but he stepped up a couple days later when he came in unannounced and caught me reading the paper with my bald head shining in the morning light.. he said "you look cool mom..think i'll get mine buzzed tomorrow. I guess once the shock wears off we need to accept ourselves for the beauty that lies within and hope that others see it to.
We tried to take my pic from my cell-phone (from verizon!! Go Moopy!) and had to turn it the other way so we could not see what we were getting, but still to shy to have someone else take it. My husband is very proud of me with or without hair and calls me "curley" now.
I plan on taking my wig in to my beautition to get it cut and styled then maybe i will post another pic. I love all you sweet brave ladies and seeing how beautiful you look without or with hair....your inner beauty and strength shines through!!
God bless
Jackie

CrystalW said:

Herceptin
Jackie, You look awesome!!!! I posted a "naked " picture of myself on here. Hope it comes thru since we are all sharing :-) I took Herceptin on a study when I was going thru treatment (2002 and '03). My study was the last leg of the study so I took the standard "adremycin/cytocin(sp) and then taxol. I took taxol once a week for 12 weeks then started Herceptin in conjuction with my radiation after taxol. Radiation was 7 1/2 weeks every day along with an infusion once a week for 1 year. This was in 2002-2003. After my clinical trial closed in (i was done with treatment in November of 03) 2004, the FDA approved Herceptin for treatment. Herceptin was the last chemo I did. I will celebrate my 7th anniversary of dx on valentines days. I am still on the study as they watch us for a 15 year period. So I go back for a visit once a year and have a MUGA scan of the heart (because this drug can do heart damage)along with my Mammograms and regular check ups with the oncologist. Keep posting here for support. The sisters in Pink all known your pain and your victories. You have a great big cyber hug from me.....Keep smiling
Crystal

mimivac said:

Triple Negative
Moopy,

I am triple negative, too. Many younger women with breast cancer are. I have a wonderful (though slightly technical) article on triple negative breast cancer that I can send to you if you would like. It really discusses some of the myths about this type of cancer and talks about a lot of treatment options that go beyond the typical chemo and radiation. I am going to write down some of the suggestions and discuss them with my doctor tomorrow. Not to overwhelm you, but there are other things you can do after treatment for triple negative cancer: one is to take bone strenghteners to prevent bone mets. Also, if you express the Her/neu gene (not HER positive, but a normal expression), there is now a vaccine that is in clinical trials. Sorry if you are already up on these therapies -- just wanted to let you know. Moopy, I don't know how old you are, but there is a great board for younger ladies with breast cancer called young survival. It mostly caters to women under 40 (although there are plenty of women in their 40's who are on) and there are many triple negative ladies out there who know tons and readily share information and experiences. I wish you (and me) the best of luck tomorrow!

Mimi

mrmauld said:

Jackie, you look awesome,
Jackie, you look awesome, naked, I hope I have the courage to post a naked picture once I lose my hair. I am on day 13 maybe I just need patience. I did sleep better last night. Thanks Moopy. I do think that the first week was steroids. I'll have to tell my doctor tomorrow. Did anyone get sick their first treatment? I didn't, I did feel flu like the fist 3 days but that is all. Did I not get as much as some other people? or what? lots of love all mrmauld

mrmauld said:

friday
looking forward to having a great day with many prayers going out our way and besides , my brother will be taking me and he is nervous that i will get sick. Ha Ha. Hope you get to feeling better moopy and mimi. love and prayers to my new friends mrmauld

mimivac said:

Us Triple Negative ladies.
I am glad I could make you feel a little better, Moopy. People on this board have done that for me so many times, it's crazy. I have PMed you the triple negative article. Let me know if you don't get it. I will let you know what my doctor says tomorrow. I always bombard her with questions about research studies and such that I have read. She probably thinks that I am delusional and believe myself to be a doctor. . But I have found that you have to be pro-active in your own care. I was scared to look up stuff at first, too. In fact, I didn't for quite some time. But your doctor, no matter how good (and mine is great) does not have time to personally do hours of research on clinical trials and different treatments for each and every patient. But if you mention something, they will check into it and let you know whether it is right for you.

Sending you big hugs for tomorrow. Have you taken your steroids yet? I took one this morning. Ugh, it makes my face ghostly white for some reason.

Mimi

PS. the site is youngsurvival.org. You can click on "YSC community" on the left hand side, and then "Bulletin Board." Most people post on the "General" thread. Good luck and hope to see you there. I spend much of my "work" day on these sites.

mrmauld said:

hello lynn, Thought I was
hello lynn, Thought I was doing something bad too. I also am HER2 negative but I was er and pr positive my tumor was 2cm and it was in 2 nodes. So I am taking adrimiacyn and cytoxen then taxol next. Glad you are a survivor.