Faslodex Girls Thread
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Bring on the cookies! Congratulations on three years, though I'd guess your rear feels like a pin cushion.
Hope you hip is doing well. . .
Pam
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I'll be partying along with you, Tina. Next month will be three years on Faslodex for me, too!
I'm trying to beat a nasty bout of chest congestion at the moment. My GP gave me Zithromax yesterday and it had better work. I've had this for a week, along with a low grade fever, and if I'm not better in a week he wants to do X-rays. Anybody know hoe long it takes for this stuff to work. It's only been 12 hours since my first dose, but I'm getting impatient.
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Hi Sandilee, ugh on the cold/infection. Z-packs usually take about a day to work. At any rate, normally I take first dose one day and wake up feeling better the next.
Congratulations on the three years!
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tina2, Congrats on 3. May you have many, many more.
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I had my appoint with my MO yesterday. No more Afinitor for me! I've had such bad stomach pain and abdominal cramping in the last 6 weeks. Since I have mets in my stomach and abdomen, I thought the pain was due to the mets. My MO said It could be from the Afinitor. Some of his other patients have had stomach problems with it. Besides being excruciatingly fatigued, I feel lightheaded. On the up side I've lost about 25 lbs.
As far as the Afinitor working for me after six month, my TM's have gone up and CT showed some progression. It's hard to know if I would be worse if I had not taken Afinitor.
We got a second opinion at NIH last week. The team we talked to said there is hardly a wrong choice since they really don't know what will work with each patient, but that hormonal inhibitors seemed to work better than chemo for ILC. They all thought that Faslodex would be a reasonable next step. My MO talked to one of them on the phone, so I start on Faslodex next week and continue on Aromasin.
I'm getting a CT and TM's next week just so we have a starting point. I'll let you know the results. A/A was my first treatment since dx with mets.
It's been great reading the last few pages of this thread. It seems to have good results for most. I'm joining the Fanny Pack!
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Welcome to our cheeky group, Danishgirl!
Tina
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DanishGirl,
Welcome! Hope Faslodex works for you.
*susan*
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Agreeing with Susan and Tina, wishing you a long and successful time on Faslodex!
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Welcome Danish! I hope you'll find this easier than Affinitor. (quite likely yes).
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how r u doing? I start in study this week also, w/faslodex & x-geva. Praying I get drug & not placebo, have been quite anxious to get started , having been waiting over a month for clinical trial to get going.
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question for ladies on faslodex over a couple of yrs, have your tumors disappeared or just show now signs of growth of further mets?
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I had great news last week. I have been on Faslodex/aromacin since Jan, and progression has stopped, markers inching down, tumor smaller. I was so worried that it was not working. So I can breathe a sigh of relief now. Wilsie
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Sue, My mets can no longer be seen on a scan. They were soft tissue mets. I understand that bone mets are always scannable, even when they are no longer active. Will let others post their responses.
Wilsie, that is terrific!
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I get my first post-stage iv scans in a few weeks, so I'm no help to you yet, Sue, though I hope I'll be able to answer that same question in a year from now
Right now I'm just hoping to see that Faslodex is doing something.Wilsie, that's terrific news, very happy for you!
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Wilsie, congratulations!
Sue, welcome to you! My last scan showed "no evidence of metabolically active disease", 8 months after starting Femara/Faslodex. I didn't have a lot of disease to begin with, and we radiated most of it, so we don't know which form of treatment to "blame" for this (the mo and ro both take credit).
Next set (end of July) will be the real telling ones; 14 months after beginning treatment. My husband is already nervous -- far more nervous than I. The clinical trials which got Faslodex approved showed a median response of 14 months, after which the "curve" flattened out. In other words, if the drug works for 14 months, it's likely to work for quite a long time.
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Good news, Wilsie!
Sue, my lung mets are visible on scans and probably will always be, but only as shells of their former selves. They have been metabolically inactive for nearly two years. I have been on Faslodex for almost three years and have no other detectable mets. (Cross fingers here.)
Tina
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Joining you ladies tomorrow for my first Faslodex. I see that some of you are on Faslodex PLUS an AI. I progressed on letrozole + Afinitor, have not responded to Gemzar or Xeloda, did not tolerate a bunch of other chemos. Not sure why MO thinks Faslodex may work even though it seemed like the letrozole quit working, but maybe it was an absorption problem. In any case, I will be joining you and have looked over the pages on all the advice, do's and don'ts, hoping I get a response. I am currently on Xgeva anyway, so it looks like I will be on drugs that are being used in clinical trials, but I am not eligible for any trials that are close enough for me to participate in right now. I know I have met several of you on other threads, and will check in here and follow along with you all.
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Welcome to the Fanny Pack, Linda. Always room for one more!
Tina
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Welcome, Linda! I hope the Faslodex works for you. Femara stopped working for me after almost 3 years, then Afinitor/Aromasin didn't keep me stable for long. I started Faslodex at the beginning of Feb and my TMs have gone down drastically. I hope it continues to be effective for a long time for both of us.
Leah
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I have a recurrence in the lymph nodes behind my sternum and in my supraclavicular area. I tried Aromasin, (didn't work), then Gemzar, (didn't work,) and now on Kadcyla.
The whole time I was also on Faslodex-about 2 years total. Apparently my onc thinks that it works so well, that he won't take me off it.
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Leah. How soon after you started Faslodex did your tumor markers go down?
I had been on Femara for at least 2 years when my TM's started rising and I was dx'ed with mets to the abdomen. Dr. switched me to A/A. for about 6 months. TM's kept rising a little and my CT came back showing progression.
I'm starting Faslodex with Aromasin this week I hope.
It's so overwhelming. I'm worried that I'll need a colon resection if the Faslodex doesn't work fast enough.
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Danishgirl, do you know why your doc started you on both Faslodex AND Aromasin? Supposedly the Faslodex degrades the estrogen receptors and Aromasin stops production of estrogen, so it sort of seems to be duplication of effects, but maybe it is additive???? I didn't talk to my MO about doing both.
I also have mets to the abdomen - pretty miserable since early January with intermittent "partial bowel obstruction" on several occasions - have not seen a surgeon yet, hope to not have to. I was told I have "peritoneal carcinomatosis" which is not exactly rare, but it is uncommon with breast cancer, much more common with ovarian and colon cancer. I don't know how quickly faslodex works, but am in the same boat you are: I hope it works fast enough to do some good!!!!!
Got my injections yesterday, feel like my muscles have been hit with a sledgehammer. Did I read somewhere that a little massage helps with the soreness, or is it also contraindicated? I think ice and heat are both not recommended because it might alter the absorption, but would rubbing it also do that? I did take a walk, trying to stretch out the muscles, keep them moving. Holy moly, I knew I would probably be a little sore, but this is way more impressive than I anticipated!!!
But if it works, it is a small price to pay.0 -
Linda,
There were some studies that initially indicated that aromasin and Faslodex together had better outcomes. I too was on both for a long time, but, I pleaded my case to remove the aromasin from my protocol. I was taking aromasin when I progressed. The side effects were becoming unbearable after 7 1/2 yrs, and I wasn't convinced that the aromasin was worth the degradation in my quality of life.
If your muscles are that painful, they might have done the push too quickly. How long did your injections take? [I count to counteract the pain. A trick I learned during childbirth classes.]
Welcome!
*susan*
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My oncologist was trying to get me into a clinical trial that tested Faslodex with aromisin (also with everolimus) but it had some delays in opening and we needed to get going with treatment, but I guess the combination is something people are looking at and want to know for sure about.
I'm on Lupron because turns out my ovaries weren't completely knocked out by all the chemo (I'm hoping the rest of me proves to be just as resilient!). I would guess it's a similar thought process as the aromisin, different mechanism, to knock out as much estrogen as possible.
Linda, I had a lot of pain at the injection site the first few injections but it's gotten better. I couldn't say if it's me getting used to the drug, the nurse going slower, or just plain dumb luck, but I'll take it! I'm hoping it gets better for you, too! My Aunt with ovarian cancer had something similar--wishing you much improvement and fast!
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Linda, sorry it hurts. My guess is the nurse did the injections too fast. The label actually calls for each to take 60-90 seconds. That seems like an eternity to me so I ask for around 30 seconds.
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Pajim & others, I think the injections were done pretty quickly, less than 30 seconds each, so I will ask her to slow down next time. She actually called me yesterday to see how I was doing! First time any of my chemo nurses have ever checked on me after a treatment! I have a bout 3 nurses that I trust now, so I end up with one of them and am able to talk with them about what works best for me and they are very receptive and kind. Today I am about 60% better than yesterday, so I suspect this will resolve pretty quickly. I am continuing to walk and stretch my muscles as much as I can, keeping active and I think that is helping.
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I was on Aromacin alone when I had some progression. Doctor added Faslodex and scans and markers improved. Just Aromacin alone did the trick for over a year. Wilsie
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Danishgirl, my markers started to go down the first month after I started Faslodex. I was surprised since it usually takes time for it to start working. My onc was surprised too!
Leah
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Susan, my bone mets did not show up on bone scans, only PET. I was originally led to believe no bone mets since scan was neg. Now RO says I had bone mets which disappeared after chemo & rad. Fast forward 4 yrs, PET shows bone mets so bad my RO says hip may break just walking around. Once again bone scan neg for mets.
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Sue2009, what happens is that PET scans see fast growing cells (i.e. cancer cells). They take up the radioactive sugar. Bone scans show lesions, whether damaging or healing. So it can he hard for a bone scan to tell whether a lesion is active or not.
I may not have explained quite right. bone scan sees abnormalities in the bone. Can't tell the cause. Cancer eats the bone, causing abnormalities. When you treat and the cancer cells go away, the healing bone still looks different on the scan. Can't tell why.
But I'm not sure why your bone scan doesn't show damage enough to say you might break your hip (that sucks, BTW). I've never had one so I don't really know what they look like. Just what I've read.
I hope they can pin or otherwise fix your hip so you aren't in danger of breaking it. That would put a crimp in your style.
Pam
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