Faslodex Girls Thread
Comments
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I'm wondering if any of you ladies know how much estrogen positive your BC is? Mine is 45%.
Thanks.
Brenda
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Interesting question, Brenda. Mine is 90%. Which didn't keep me from failing miserably on tamoxifen, but, on the other hand, early reports seem to imply that I'm doing better on Faslodex--which is basically to say I'm not sure it makes much difference, but I'm curious now, too!
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Haven't a clue. The relatively recent (2011) biopsy report of my lung mets did not indicate a percentage and, since I had both my mastectomies many years ago, I doubt if I could ever discover the ER percentage of those tumors.
Tina
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No idea. The report from 2008 just says "positive". They didn't type the bone mets even though they have some in the bank (took it out of the vertebra when they operated on my back).
Tina, I know how much my insurance paid for my last CT scan. An outrageous sum of money. I can understand their point of view, though I don't think that's my onc's reason. He doesn't think about how much things cost, believe me!
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My pathology report from 2005 indicates < 5% estrogen, and yet I have done very well on Faslodex. My hospital seems to believe if there are any estrogen receptors, then you are positive. I know at some other places, I would be categorized as triple negative. Man am I glad I am not being treated at one of those places!
Tomorrow is injection series no 54. There is no question that my poor buttocks are taking longer and longer to recover as each month goes by. Mostly, I ignore the discomfort. I certainly don't want to change my treatment protocol, and having itchy-sore buttocks seems like a really small price to pay.
*susan*
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Wow, ladies! Thank you for responding!!! Susan, that is very, very interesting. My BC used to be triple negative. 25% ER positive in 2009 and 45% in 2014. And that's just the lymph node. I don't know if my lung mets have any receptors.
Brenda
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My Ductal BC in 2000 was ER+//PR+ 95% ER. I had a new primary BC in the other breast in 2005 and it was Lobular ER+/PR- 94% ER and -2% PR. Both cancers were HER2-. The neck node that confirmed my mets this past March was ER+ 94%, PR- and /HER2-. They believe the mets is the same as my second BC which was Stage IIIC Lobular. I was on Aromasin for 8 years before becoming Stage IV. Since my mets currently are in scattered nodes throughout my abd/chest area it is most likely the Lobular that spread.
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My original tumor was 100% ER+ 50% PR+. I haven't had any biopsies since then. Tamox didn't work for me (mets discovered 9 months into Tamox tx). I was then stable for almost 3 years on Femara, then on Afinitor/Aromisin for 6 months though stable for only a small amount of time on that. I started on Faslodex at the beginning of Feb and my TMs have dropped a lot though I haven't had a scan yet.
Leah
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Susan, if you mean me...here I am! Just realized that tomorrow is my 3 year Faslodex Anniversary.
I don't check in here much, since the Faslodex isn't working by itself for me. I have mets to the lymph nodes behind my sternum (one mass above my heart and one mass beside my esophagus) and in my supraclavicular area.
I had Faslodex and Herceptin for a bit....Then added Aromasin....didn't work. Then Gemzar instead of Aromasin. Worked at first, then failed for the next 4 months.
Now on Kadcyla and Faslodex....no more Herceptin. Kadcyla is a super Herceptin.
I will have a PET scan this Tuesday. Still on Faslodex, though.
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Does anyone else have occasional hot flashes for a week or so before injections? Interesting phenomenon.
Phew!
Tina
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I seem to be having more hot flashes as I'm on this drug more, but haven't noticed a pattern of when I get the injections and when I get the hot flashes.
Leah
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Leah, I've noticed a pattern: hot flashes for several days before and several days after the injections.
I like to think this has something to do with estrogen searching for new or mangled receptors coming back to life pre-injection, then 20-some days later desperately surging, making one last gasp as it senses the prospect of receptors being newly destroyed immediately post-injection.
(Please note my highly scientific terminology.)
Tina
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I seem to be hot-flash-free, but do find that my fatigue is greater in the 4 days preceding the shots. And strangely, my butt gets sore again. My hormones must have lost their ability to surge or gasp, which are terms I am sure my oncologist uses at cocktail parties.
*susan*
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I have had hot flashes for 15 years, but never noticed them getting worse before any procedure.
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I don't get hot flashed during the day, but I sweat a lot at night with this medication. More often than not, I have to get up in the middle of the night to change nightclothes. And then I have to find a spot on the bed that's not to damp. I don't know if that qualifies for "hot flashes" or not.
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sandilee,
I believe that is text-book hot flash. I haven't had any of those since about 6 months post aromasin. Man were they bad on that drug.
*susan*
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Interesting about the Aromasin for you, susan. I didn't have hot flashes with Aromasin- just achy joints and fatigue. Funny how we're all so different in our responses.
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Maybe it is a factor of our ages and previous treatments we have had that impacts how we respond now to the hormonals. My first BC being 14 years ago when I was 47, I was pushed into "chemopause" immediately. Had severe hot flashes at that time during chemo and while on Tamoxifen. Things were better til my second BC dx in 2005 at age 52 when I went through chemo again and was put on Aromasin. I took Aromasin for over 8 years until my Stage IV dx this past March.
I initially had hot flashes and pretty severe joint, hand pain during
the first 18 months on Aromasin, but eventually my body adjusted. The
last several years on Aromasin I had no side effects other than the low
estrogen effects of dry skin, thinning hair etc.Now that I have been
on Faslodex for 3 full months, I do not have any but the very rare hot
flash and no joint pain to mention. I think being now 61 years old and on some type of hormonal for several years may have made it easier to adjust to the Faslodex. I don't have any real SE's except the periodic "itchy butt" after the shots!0 -
I started the PALOMA-3 trial with Faslodex yesterday. As Faslodex isn't on our Pharmaceutical Benefit Scheme, the nurses aren't experienced in administering it. I was able to pass on all the tips given here; they were very appreciative! I had my shots lying down, do you guys have them standing? Thanks for all the wonderful information. Good luck to all for long PFS on Faslodex.
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Standing up, weight on side not being shot. Then the other side. The nurse always volunteers to have another nurse come do the 2nd one at the same time, but honestly, I do not find it that painful. Wilsie
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Fitzy,
Due to some trauma from earlier in my life, I was not willing to be standing with my back to the nurse to start. I had them lying down for about the first 18 months. When I felt trusting, and was assured that the shots would be less uncomfortable standing, I gave it a try. The shots were equally effective both ways.
*susan*
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Hi all,
I'm new to this thread. My Onc is taking me off Femara and switching me to Faslodex. I was told that I would get a shot every 2 weeks 3 times and then go to once a month. I'm also getting a shot of Xgeva and am trying to coordinate that I can get both shots on the same day. I'm currently scheduled for my next Xgeva on Jul 30 and Aug 27. I've been thinking of asking my onc if I could stay on Femara until the 30Jul and then begin the Faslodex treatment. This way I on track for the monthly shot for both. Do you think this is doable?
highhopes
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highhopes, I will start my Xgeva tomorrow when I take my 3d Faslodex. My Faslodex started 4 weeks ago, but my Xegeva was not approved by the insurance on time to start with Faslodex. To sync two shots together is just for my convenience, my Onc had no objections.
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Cling, thanks, I, too, want the shots together for convenience. It's much easier going once and getting it over. I've had no side effects from the Xgeva (thank the lord). Remember to advise your dentist that you're on it. A concern is ONJ.
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highhopes- another suggestion might be to wait to get your xgeva shot until your next scheduled Faslodex. It's definitely easier to get them at the same time, but I'd want to start Faslodex right away and let the Xgeva be scheduled around it, but yes, try to get them at the same time.
Even if you have to wait a month to start Xgeva, I think that would be better than waiting for the Faslodex, which is really the cancer-fighting drug. Faslodex should drive the schedule, not Xgeva.
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Sandilee,
I'm currently taking Femara daily and Xgeva monthly. I checked with my onc. It's okay for me to stay on the Femara for 2 weeks and then begin the Faslodex with Xgeva. The office worked out the schedule and waiting for the insurance to approve it. Thanks for all the information. Highhopes
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Hi Ladies, I'm new to the Faslodex thread. I'm leaving the A/A thread and coming over here. I just got my scans back (the results) yesterday and my lung tumor is bigger, as are the spots on my bones plus new ones on my skull, in the 2.5 months since last scans. Markers are up 120 numbers again to 480. Doc is taking me off A/A combo and starting me on Faslodex as of yesterday. I'm thinking this is going to be like the little kid roller coaster ride, slow ups and downs, although I am waiting for some stability or better yet backwards movement. Sigh.
I'm hoping the side effects won't be as bad as the A/A combo. I'm getting 2 shots every two weeks for 6 weeks, then one shot once a month. Just wanted to say hello. :-)
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Welcome to the Fanny Pack, Fitzy, Highopes and Skylotus.
Bottoms up!
Tina
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Shots Tuesday and for some reason can hardly sit. No problem with the injections, but never had my backside hurt. Been on Faslodex 6 months, now anyone else? Wilsie
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Sorry I can't help you, Wilsie. I've only had the first three. So far I've been very grateful for the advice here. No pain, no problems. None of the three nurses seemed to know that the Faslodex injections needed to be warmed first. And thanks for the "heads up" to inject very slowly, keep injected muscle relaxed, keep well hydrated and exercise that muscle after injection. One nurse told me that some patients responded well to Claritin before injection.
I'm just finishing 25 days of rads to the skin mets on my upper abdomen. I do not remember the rads making me so tired before. At least I'm hoping thats what is making me so tired. I have 7 more days of radiation and will be done one day before my daughter gives birth to a baby girl. Her first was a boy who is almost 2 years old.
I'm also getting chemo, Halaven two Mondays on, one off. So I guess it's hard to tell where the SE might be coming from. Tired could be coming from all three. Hair loss probably from Halaven. No fanny pain thanks to all of you.
My TM's are coming down. Mets are mostly around my colon and stomach, but bowels are more regular than when I was on A/A for 6 months.
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