Faslodex Girls

Susan, thank you again for reminding me. I had some fantastic pre-theater tapas last night--spiced almonds, herb-marinated olives, boucherones and artichokes, pork loin with peaches and crispy kale washed down with wine, coffee and plenty of water--but will start swilling the H2O again now.

(I listed the dinner fare only because I know you're a foodie!)

Dare I ask the onc today what his experience indicates I might expect down the road? Or do I stay in my cloud cookooland of hoping that I am among that percentage of people with Stage IV whose cancer does not progress for decades, if ever?

Tina

P.S. Bottoms up!

I didn't ask the question today; my partner reminded me that I asked something similar at my last appointment. Then my oncologist responded that he has Stage IV BC patients who have been in successful treatment with hormonals for seven and nine years, and who feel good and are functioning well. I think that's the best and most specific answer I'll get from him.

Great news: My last PET-CT scan was so good that we're extending the scanning schedule from every three months to every six! (If my intermitent nausea increases or any other worrisome symptoms crop up, he'll scan.)

I'm sleepy from my usual post-treatment nap, now flopped on the living room sofa with a hefty tabby cat, hoping that tonight's episode of "Poirot" is not one I've seen previously, and smelling the sauce my partner is making for our traditional post-treatment comfort dinner of spaghetti bolognese.

Overall I am one happy camper.

Tina2 - well, your thread gives me hope, as does so many others.  I've been on faslodex since the middle of July.  Last month the tumor markers came down 5 points and I was elated.  Yesterday they went back up 5 points and I was soooo discouraged.  HOWEVER, I was holding my breath waiting for the CTC results (circulating tumor cells).  Back in July that jumped from 0 to 4 (bad for me as I've always been 0); yesterday it was 1.  Sooo, not all bad; it would have been great if it were 0, though.  That's one of the things I hate about this disease/treatment, can never really feel confident I'm "stable."  Have not been "stable" since my dx.  So, when I hear it took you alittle over a year, it gives me hope.  Thank you.  Next month is the next bone scan, 

I apologize for posting here, but my MO keeps wanting me to consider faslodex as I have been unable to tolerate tamoxifen and AIs, and have had a second recurrence, so technically not stage IV, but not controlling well with current approach. My question is about the SEs. Are the hot flashes about the same as with tamoxifen or AIs? How about joint pain? Anything else? She tells me that the quality of life on faslodex is much better than on the other drugs, but I don't trust her on this because she has tremendously underestimated the severity of SEs for me on all other meds. I know she is very current with indications and effectiveness of these meds, but she seems to minimize the adverse effects. Again, I am sorry about posting here, but this is the only place I could find that had some folks with experience. I will be happy to take PMs rather than use this thread as I truly want to respect the stage IV forums. Thank you for any help.

Linda, here I am, right on cue! (Thank you Susan, for that gracious introduction.)

Susan is meticulous about recording specifics; I am less so, but maybe I'll get better when I'm as experienced with Faslodex as she is! My hot flash schedule virtually mirrors hers, which is interesting. I have had some wicked injection site pain, what I would imagine being shot must feel like, but only twice in the 14 months I've been on the treatment. The rest of the time the injections have caused soreness and some lumpiness under the skin and itchiness, but these are nothing in comparison. I have intermittent nausea, which is uncomfortable, but not seriously debilitating. In fact, when I describe it to my onc, I call it "queasiness" and refuse his compazine. I handle it with ginger root capsules and slugs of over-the-counter medicine.

My biggest and farily constant complaint is a low backache that at times worsens to the point that it is almost debilitating. I believe that this is the result of estrogen deprivation worsening existing arthritis, but who knows? (Astra-Zeneca sure isn't talking!)

If I were you, I would take my onc up on the offer and give Faslodex a whirl. From what I gather in this forum, in the grand scheme of treatments for this disease it is the proverbial walk in the park. Go for it.

Tina

To add another $.02, I believe any treatment has side effects & I find myself expecting it.  My thought is I'd rather have side effects from treatment than progression of disease.  Both reduce quality of life, but at least I have a shot at life and possible new treatments if I'm still hanging in there.  Unfortunately, there's no easy answer to this. 

Hi Everyone,

I got my scan results on Monday from my oncologist (I got the CD the week before and read the reports myself, so I already knew!) and the Fasoldex is showing improvement. All the tumors have shrunk (or disappeared) in my lungs and lymph nodes. Though my spine seems to have a new issue. I had a kyphoplasty in July for the compression fracture of T9 (how we found the cancer, from the back pain) and now T8 and T10 seem to be compressing (not fractured, yet...). No wonder my back hurts! She called the radiology dept, and the radiloigist she spoke with suggested kyphoplasties to those to vertabrae as well. I said what if the next 2 compress, are they going to keep injecting the cement till I have a cement spine?? I asked if insurance covers it, since they aren't fractured yet, she said she didn't know. I said I'll think about it. I then saw the breast specialist at Dana Farber for a second opinion (which I'll do every time I have scans done, it's good to have two opinions!) She came up with the same results. She had said for me to get the MRI of my spine, and see how much they are compressed (they have to be compressed so much, before they can do a kyphoplasty anyway) and then have it done if it's compressed enough, but if other vertabrae compress again after this, just to get pain meds instead of doing it again. I asked about any pain meds that don't make you loopy (the narcotics, that do this and do nothing for the pain, which I won't take because of it), since all I'm taking is ibuprofen for pain. She said no, but they do have narcotic drugs that work by only give you a little over a 12 hr period, so you are not loopy. I'm sticking with my ibuprofen for now. They are keeping me on the Faslodex and Zometa. Next scans in 3 months.

Baseball Fan, I am falling asleep watching tv in the afternoon sometimes and of course the kids make fun of me! I have never been a napper either, but I know if I'm in the car for a long ride, or just sitting watching tv, I just fall asleep since I've started this!

Aerial, thank you so much for the suggestion of putting your weight on the opposite leg! It worked! I'm not sure if it was the different nurse that I had, or that, but hardly any pain when she injected it or afterwards, and no welts, or bruising at all this week! : )

Well, this afternoon, I am walking in the Making Strides Walk for my 7th year! I just hope my back doesn't bother me today!

Hello everyone, i've been reading your posts for a few days now, and feel I must join the discussion as I too am a faslodex patient.

My first brush with bc was in 2004 with stage 0, lumpectomy and radiation.  I wrote it off as nothing in comparison to what I've seen others go through and pretty much ignored the whole thing.

On Aug 6 of this summer I was diagnosed with stage 4 in bones and lungs.  How did that happen?

I would like to preface here that I'm post menopausal, and did not experience hot flashes during meno pause.  My RX includes the following: a daily dose of Aromasin, begun on Aug. 28th, (was too sick to get to my onc to begin it sooner), a monthly drip of Zometa to support bones, and on Oct 4th I began my first regimen of Flasodex.  A shot in each butt.  I had no idea what I was getting into and I had no problems what so ever.  Returned for my second shot on the 18th (One shot) and again no problem.  I will have my third round on the 1st of November.  I had been exhausted prior to my  diagnosis and blame my continued tiredness on cancer rather than the meds.  Call me the queen of d'nile and I'll agree.  i have no idea if the Aromasin is working as I guess it takes a couple of months to determine.  But I feel one heck of a lot better than I did in Aug, but I don't know if that's me or the meds.  Also have put on 5lbs since starting faslodex  a few weeks ago.  My appetite has become ravenous.  Not sure I like that.

Tree,

Looks like we are neighbors. I gained weight on the aromasin, or I should say, I gained weight with the steroids during chemo. Aromasin did not want to let even one bit of that weight go. Stopped the aromasin almost a year ago, and I am slowly, very slowly, reducing my weight. I was on the Faslodex with the aromasin, and then on the Faslodex alone. For me, Faslodex doesn't have the appetite thing happening at all. Aromasin uses steroids, so that is a major difference.

*susan*

Treesa,

I was originally diagnosed with Stage II and added aromasin on December 15, 2005. I progressed to Stage IV in May 2010 jus shy of my 5-yr mark. I continued with the aromasin plus Faslodex at that point, but last year the side effects from aromasin became more than I could bear. For me it was the carpal tunnel in my hands. This is a rare side effect. Current studies show that the two in combination has the best outcomes. I am lucky that my blood markers are indicative of what is happening with my tumor load, but a scan is the only way to tell for sure. When is your first scan post aromasin/Faslodex scheduled? I would expect something between 3 and 6 months.

I hope that you respond as well as I have.

*susan*

I'm so new to all this that it makes me feel, well, not alone, when I see someone on the board who actually lives close to me and has been through a lot of this and is, thus far, doing pretty well.  It's scary.  And yet I feel pretty good so its hard to believe I'm at stage 4.  A very deceptive disease.  An scary.

But I will be here for awhile as I've learned a lot just reading all the posts.  So thank you all for being so willing to share.  With honesty and openness.

Tree

Tree, make a written list of your questions and consider taking someone you trust with you to your onc appointments. I do and it's invaluable. My partner takes notes while I ask questions. That way I can ask all my questions, not get rattled, and keep information straight later when I can't recall what my onc said--or what I asked!

Tina

So glad to find this thread - I was diagnosed Stage 4 last week - I've had bc since 2008 and been on BCO since 2010.  Onc told me last week that I was going back on Arimidex which I'd had to give up after 18 months as the se's were making me bedridden - now the se's aren't too bad but bp is up and it took a good 12 months last time to debilitate me so I am keeping my fingers crossed - onc told me next step is Aromasin in combo with I think Fareston (don't quote me on this I was in shock at the time), then Faslodex which brings me to this thread - I wanted to know what it was like - so I'll lurk for now and join the discussion when I go on Faslodex - glad you're all here to guide us on this part of the journey.

Hi Tish, you asked is anyone working? Yep, that's me still working!! I've been on Faslodex and Xgeva for 10 months now. I only feel bad the day of the shots, just come home take 2 Tylenol and sleep it off. Back to work the next day. I'm stage IV Bone mets in almost every bone you can name. Fortunately I'm not in pain and I'm able to do all the normal stuff. I feel great to have all the issues I have going on.

Tish, Amen to that!  We have new drugs and treatments these days--of course, a cure would be wonderful!

I worked as a teacher last school year--it was my 30th year of teaching so, I was very happy to retire!  My leg pain is due to two slipped vertabrae (near tail bone) that entrap a nerve.  (My cancer is located higher up in the T & L area.)

I had my Zometa and Faslodex yesterday and, as I suspected, my onco wants to do a bone scan.  I've had some stabs of pain in my hip and knee area. (Not steady pain--just comes and goes.)  Hopefully, it's just arthritis.

Hopes and hugs to everyone, Aerial