Faslodex Girls

Tree3 · December 2013

oK excuses for my onc. Prior to our meeting, his earlier patient, in a wheelchair, had a seizure, fell out of the chair and everyone ran to him, nurses, other patients, drs and my dr too. Finally he came to me. Really, I should have said I'll come back tomorrow. But right now, my most important concern is my treatmment of faslodex and xgeva which will occur next Tuesday. Don't need an onc for that. And, of course, my thing is to escape. Give me shots and let me get out of there. That's why I liked Cam. Hospital. In and out. In fifteen minutes.

GemStateGirl · December 2013

Susan, my first day of Zometa and Faslodex went very well. I got all my questions answered and didn't learn much new since I was so well prepared with advice from the Fanny Pack. The main things I learned were related to possible side effects from the Zometa (edema in the legs and feet, and hair loss). I was pleasantly surprised by how easy the shots were. The nurse did them in the upper outer quadrant of each cheek and though they did sting a little bit, it wasn't bad. So, so far so good! I haven't had any nausea but I did buy some crystallized ginger yesterday which is pretty darn tasty. I've never had it before so you've turned me on to a new taste sensation.

Tree3, I'm sorry your first appointment with your new oncologist was not what you were hoping for. His comment made me think of an article I read several months ago in a cancer magazine about people with terminal cancer who didn't understand the treatments they were getting were not going to cure them. Maybe, not knowing you, he was just trying to be clear about that and, considering what you said was going on in the office, was not at his best in doing so. Hopefully, your next appointment will go better.

Pam, I liked your prescription for tea and chocolate!

Maureen, I'm glad to hear that your nurse knows of women that have been on Faslodex for more than 5 years. I hope we all end up in that group.

Tina, your comment "God knows how and what they teach oncologists about dealing with real people" made me think of a blog post I read recently (http://lisabadams.com/2013/11/27/give-young-oncologists-advice/). Lisa Adams is a metastatic breast cancer patient who was asking for advice from other patients about how they wanted their oncologists to interact with them. She was then going to present her findings to young oncologists at Memorial Sloan Kettering in NYC as part of their training. I thought it was a great idea.

Tree3 · December 2013

OK here I go! I'm supposed to teach these drs and nurses how to treat us? I'm the one with a stage 4 cancer not them. I'm supposed to say, oh ths is how you should say it. I'd rather say, f.....ck you, dr but I have too much life to live to listen to your stupid beliefs. But.....and here's a big but...........my son was diagnosed with stage 4 melanoma cancer, and he did die after 8 months. And none of us can forget that. So, I return to the saying of "we only have today. Yesterday is gone and tomorrow is not here."

Love you guys and be patient with me.

Love you,

Teresa

Maureen813 · December 2013

Tree3 I am sorry about your son and you are correct. You are the patient he is your caretaker.

Tina2 · December 2013

Tree,

If we don't teach them, who will? Clearly they are not learning about people in med school.

I can only imagine how heartbroken you must be over the death of your son, an endless loss. I am so sorry.

True, we only have the present. Unfortunately that's difficult to keep at the forefront of our minds when our all-too-human wishful thinking leads us to believe that we are in control.

I try to expect the best under the circumstances while I prepare for the possibility of less. Sometimes I succeed.

Love,

Tina

P.S. A silent "f--- you" is often justified and can satisfy the soul. Deploy when necessary.

Tree3 · December 2013

I m not really sure how I'm supposed to be. I was told I had a certain amount to live right on the heals of my son learning he had. A certain amount to live. My living son is the one who had to hear all this shit. 4 stage cancer. 4 stage cancer. Honestly, I don't know what or how to think. Or who or what to love. Or what to do with my new house. I'm going to post this but some times I think I'm nuts. I love you guys.

chris1959 · December 2013

sandilee,

Im still getting flu like symptoms ,headaches,and my bones ache .and I asked mo about it and she said it is a side effect from the fas ,she said that its not unusual .and this last time I only felt that way for a couple days instead of 3 or 4 . I hope it gets better for you .

chris

chris1959 · December 2013

tina

I love your posts .and advice ...chris

Tree3 · December 2013

thanks for listening to my rants my friends. I think the recent changes in my life have been harder on me than I will admit. But I will talk to this dr. I'm going to let him know that it was upsetting to hear. His comments concerning my lungs. I really do feel fortunate that no cancer canbe seen in the lungs and that my meds have been working for me for over a year.

And

, really I'm not a cusser but when I do I really can. I'm just a bah humbug that's all.

pajim · December 2013

Tree, I'm so sorry to hear about your son. And I truly feel for your other son. With all the crap effect cancer has on us, sometimes we forget it can be worse on those who love us.

All you can do is what you can do. Your emotions and reactions are you, not someone else. You shouldn't even measure them against other people. As far as I'm concerned it's perfectly OK to be nuts.

Now if only I could take my own advice.

Tree3 · December 2013

Pajim, you, Susan and Tina know pretty much how to put it in perspective.

To top it all off my son died on Dec. 17th leaving behind two young children, and the rest of us of course. The anniversary of his death is next Tuesday. The day I get my shots. It is a day that I will never forget. Cancer!!

Tina2 · December 2013

Tree,

You are not nuts: you are grieving. This season can be emotional enough without the extraordinary burdens you bear. I have no advice for you other that you try to realize this and give yourself a break.

Maybe you should consider doing something or going somewhere on December 17 where you can give yourself over to thinking about your son. Every December I pull out of storage a silly present one of my younger brothers gave me a few years before he died. It's a goofy-looking moose with little light-up stars on its antlers. I give it a new battery and put it on my desk and turn it on. I can see it out of the corner of my eye, a bright little reminder of a lovely, funny guy.

I love Christmas, but am also pressured by it, and get inexplicably sad at this time of year. I fight it and fight it, but often feel close to tears (and I am not a crier) even while I'm buzzing around shopping and decorating and partying. I know I am not alone in feeling this.

Hanging in with you,

Tina

susan_02143 · December 2013

Very wise words Tina.

Tree, I do hope that you can take Tina's words to heart. I lost my brother when he was 29. My daughter has his last gift to her under lock and key. It is a collection of rocks, all nicely labeled. At that time, my kid thought she would be a geologist when she grew up. I can't begin to tell you how much rocks do NOT interest her these days, and yet those rocks are like gold to her.

Is she nuts? Are you nuts? No. I don't think so. You are just trying to find a way to continue facing the day, remembering someone you loved dearly without allowing yourself to go down a huge rabbit hole.

*susan*

p.s. and I agree with the secretary. why aren't men bowing down before you?

Tree3 · December 2013

I don't know why I don't come here and post more often. You guys are wonderful and I talk about this site and all the things I've learned from you to the nurses in Cambridge. I'm sure I'll be doing the same here in NH

Tina and Susan, wise wise words. Perhaps I'll wear his short all day. It's wearing,,,,but..I don't care. I still have his skin cream in my car that he used to use as I drove him to the hospital in Boston. I have his photos all around me. I don't think about him as often now that I have my cancer. But you're right. This is the time of year I grieve for him. And that's just the way it is.

Thanks so much for being here.

Teresa

Tree3 · December 2013

and, Susan, maybe the men are bowing, I'm just not noticing. Seriously, and this would be for a whole other subject, but when dating, at what point do you tell the person you have stage 4 breast cancer?

NickyJ · December 2013

hello ladies,

It looks like I'm going to be joining you here...

I've started reading through this thread but seriously; 57pages!!

Today I had my 3weekly herceptin and my 6 weekly visit with my onco. Unfortunately my markers are creeping up and my onco thinks that tamoxifen is failing. He's ordered an MRI for tomorrow so we'll see if anything shows up in that, but he said that if there's any increase at all; even 1 or2 points in the next blood test (6weeks) then we stop tamoxifen and start faslodex.

I'm also on exgeva - started with zometa and switched to exgeva in march 2013. Basically, I'd just like to know what to expect? Would be grateful for any input!

Nicky

susan_02143 · December 2013

Nicky,

We just wrote up a long list of "what to expect." Should be back two pages, give or take. Let me find it for you, and repost. Welcome to the Fanny Pack! [That is Tina's brilliant moniker.]

*susan*

susan_02143 · December 2013

Nicky,

Hard to repost, so I will tell you WHERE to find. Go to page 56: http://community.breastcancer.org/topic_post?forum_id=8&id=702314&page=56.

About half way down is a list of questions from GemStateGirl. Then there are about 5 responses from some of the regulars. Take a look, and then ask any questions we didn't cover.

Faslodex has been my magic bullet. I have gotten 48 months of NED for a very low cost. If it works for you, it can work for quite a long time.

All the best,

*susan*

NickyJ · December 2013

brilliant, thanks Susan! That was a great help. I'll be back to let you all know how I'm doing; in the meantime happy holidays to all

Nicky

pajim · December 2013

Nicky, welcome to the group. Sorry tamoxifen may be failing you -- it failed me after four years.

Faslodex is easy, all things considered. Just makes you 15-20 years older in some ways (thinning hair, "menopausal" symptoms). You may be living with much of that already depending on your reaction to tamoxifen.

Pam

NickyJ · December 2013

thanks Pam,

I hope I get a bit longer out of faslodex; I only got 10 months out of tamoxifen! My onco was a bit surprised because I have all the menopausal symptoms from tamoxifen and apparently this is normally a good indication that it's working. But obviously not...

No thinning hair at the moment though, and it's only about 2" after chemo, so I'd like to avoid that one if I can!!

Nicky

Romansma · December 2013

My hair seems to be holding fine on the Faslodex. Just had injections last Tuesday. Finally today I had a spurt of energy and got some things done!

susan_02143 · December 2013

My hair was thinner when it grew back in 2005 after chemo, but by then I was on aromasin. Was it the regrowth? Was it the aromasin? I have no idea. Then the hyperthyroid thing happened and my hair started to thin for real, which is when I donated my hair again. As far I can tell, Faslodex has nothing to do with my hair. I was lucky that I started with so many follicles per inch that a small reduction is not really noticeable to anyone but me and my husband.

*susan*

pajim · December 2013

Thinking about what Nicky said. . .I too had to read through a zillion pages of this thread in the beginning. It's hard for newbies to find the exact info they need.

Would it be disrespectful of the women who came before us to start a new thread? The initial post could have all the tricks we elucidated on page 56 of this one.

If you all like the idea I'm happy to put together the list and start a 2014 Faslodex Girls/Fanny Pack thread in January.

Pam

Tina2 · December 2013

Pajim, my reaction to your sensible suggestion is "Why not? I would include in your first post a link to the current thread so anyone can wade through it if they're so inclined.

Tina

Tina2 · December 2013

Pajim, my reaction to your sensible suggestion is "Why not?" It would be good to include in your first post a link to the current thread so anyone can wade through it if they're so inclined.

Tina

Maureen813 · December 2013

great idea

Tree3 · December 2013

I think its a great idea. And thanks Pajim for offering to do it .

Teresa

NickyJ · December 2013

Pajim,

That sounds like a plan!

In the meantime, i do have one question. I'm 43 in January, premenopausal, and I notice that a lot of premenopausal ladies here have Lipton shots with their faslodex. It hasn't been mentioned to me yet (maybe because the protocol isn't in place) but is it something I should expect?

Thanks for any info!

Nicky

NewGardener · December 2013

Hi Nicky, I was also premenopausal when I was diagnosed Stage IV (after 4.5 years of tamoxifen). I had Lupron shots (monthly) to suppress ovarian function, then had an oophorectomy.

Faslodex Girls

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