Faslodex Girls Thread
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Tina, Thank you for the information. I think that Animalcrackers is in a trial that includes an oral SERD. Yes, I am cheerfully continuing on the fannypack trail. I am finding it to be quite tolerable (even with Ibrance), and so far the results have been good.
Joyner, Enjoy your son's wedding in VT. Will you be passing through NH again? Wave on your way through. I do hope we see pictures of the wedding. It is always good to see photos of celebrations posted on the threads.
Hugs and prayers from, Lynne
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Not through NH this time. In Saratoga Springs right now and headed north to Brandon VT for the wedding. Thanks for the well wishes!
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Hey. I just wanted to stop in and say hello to my Faslodex thread friends. I apologize for missing and not responding to some kind replies to me when I was switching treatments. But I read them just now and still felt the love. Xeloda got my tumor marker back to normal and the side effects are not bad for me. So things are pretty good. Carry on, Fanny Pack!
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Thanks for checking in, Shetland! Glad you're doing well.
Tina
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Hello Falsodex gals. Just started after failing Ibrance/letrozole (16 cycles) Tolerated 1st two sets of injections well, third is next Friday. On pins and needles waiting to see if it will work. PET scan will probably be early February. Pain in lower right quadrant is constant reminder of the liver progression. Some MBC adjustment phases are harder than others. Must get up and get absorbed in daily activities to occupy my mind!
Love to each, MJH
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MJH,
I also failed with Letrozole / iBrance, and am now on Faslodex. Although the ‘booty’ injections take some getting used to, overall, it’s not too bad. I have very few side effects, and feel pretty good on Faslodex. I am also hopeful that this one will work. Best of luck to you
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booboo1, you diAd not fail, it failed. I have an awesome young male nurse who does my Faslodex Injections and I cannot even feel the needles going in or out. Blood work today was great so cycle 5 of Ibrance starts Sat. and Faslodex on Wwd
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QUESTION - Has anyone been on Faslodex, had progression then a year++ later gone back on Faslodex (insurance approved) and had it work.
If so, did insurance approve revisiting and how long before you have to wait to try again?
Did Faslodex work the second time around?
BACKGROUND - I was on Faslodex from 2013 - 2016 April. Then off on my own decision though my oncologist recorded disease progression in Autumn when the PET CT revealed there HAD BEEN small multiple yet unreported lymph nodes. They got very active throughout that summer too. So, yes, that would have been disease progression while on Faslodex. I was in Nov - April on Ibrance / Femara. Then April 5 to Nov 25 Xeloda.
Thank you for helping any way you can. I am trying to find my way to a do-able treatment, have been informed by an oncologist that I am hospice now, though won't be using them for a few *weeks* and that was a month ago and no treatment since. I would like to be on Faslodex / Kisqali if possible. See what it does for liver lesions and keping lymph node masses down. When they grow my airways close.
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"On pins and needles waiting to see if it will work." MJH, pun intended? I hope it works great for you and the other Fas ladies here. It gets better after you finish the loading doses and go to just monthly injections.
Bluebird, I don't know but I would think definitely try to combine it with a targeted therapy if you go back to it.
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Thanks for that reminder, Marioneliza. You are correct....the drug failed me! But how blessed are we to have so many different options when one drug doesn't work? I was very anxious when the Letrozole / iBrance combo didn't work....but my onc reminded me that we have only just begun to explore the many different drug options available for MBC. And new ones are getting approved all the time. So chin up! I'm feeling very grateful today to all of the researchers and scientists who are working to cure this disease. I really believe it's possible that a cure is out there
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Shetland- I didn't intend any pun- my subconscious was thinking otherwise, I guess! Thanks for the words of encouragement. Won't really know til scan time end of Feb. Hoping tumor markers show decrease next week. Still having some right side discomfort and general back pain and who knows what that means.
Bluebird-I would think combining Falsodex with the CDK4/CDK6 inhibitor would be a good thing. What does your MO say? There is also Affinitor/Aromasin but they come with some heavy duty side effects? Have you had genomic testing? Might give you another target. Are you a candidate for Y90? Thinking of you at this juncture, keep us posted.
to all of you in the fanny pack gang-may the force be with you. Love MJH
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Haven't been on stage IV message board in awhile, I have been stage IV since 2011 and still having a good life! Had lumpectomy, chemo, radiation and ablation on 1 liver spot in 2013. Only spot on liver since then, and in 2014 I was NED. 2016 spots on different parts of my spine showed up. Did paclitaxol for a year and radiation on 3 parts of my spine, which worked and I had no further pain in my spine and neck-very happy 😊 about that. Did not like radiation on my neck-ugh-had to have that mask that holds your head still and I'm very claustrophobic. Sedatives took care of the worst of that. After a year of paclataxol and radiation, the progression of spots stopped and last 3 CT scans showed no more progression. I am now on Faslodex and bone strengthening Zoladronic acid. Overall I think I've done pretty well for stage IV. I just have a couple of questions/comments about Faslodex, First the injection-my nurse injects really slowly, she says because it is so thick , I think it takes her about 20 seconds to empty syringe. and I've never had pain at injection site. The main problem I have is waking up 3 or 4 times a night and having really vivid, weird dreams. Does anybody else suffer from that? What did you do for it? Tried Zopiclone sleeping pills, but they're not working. Walk 5k in the freezing cold and that does nothing for my sleep either. Will tell onc on the 29th when I see her. I know it is the Faslodex because the first night after injection I wake up every hour, then stays at 3 or 4 times until next shot. It really sucks cuz other than being really tired I feel really good. I move through the day like a zombie sloth 😂
As always, be kind to yourselves💜💜
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Hi tsu, wow your history is amazing! That is great!
I have difficulty sleeping too, and my MO said its the faslodex. She prescribed me ambien to use as needed. I dont take it every day, but it works well when I do. its so nice to be able to get a great night’s sleep when I really need it.
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Tsu....WOW!!! Your results have been so great! Were you de novo Stage 4 or were you in remission before? If so, for how long?
I don't have the issues you do with Faslodex. My nurse warms the shot well and then injects very slowly, too.
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Hi All,
It looks like I am now joining this club. My MO and I have decided we are not seeing the results we want from Xeloda so will try Faslodex alone. I wondered about adding Ibrance but my MO is not keen. I had pretty significant anemia when I took it in conjunction with Anastrozole (which ultimately failed).
I anticipate I’ll have my first set of shots this week so trying to figure out what I need to know. I have heard about warming up the syringes, injecting slowly and taking the weight off of the side being poked. Anything else?
Thanks in advance. Pat.
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Pat,
There's good info at the top of this thread. Welcome to the Fanny Pack!
Tina
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Thanks Tina. I did see that. I hope I see your success. Have you really been on Faslodex alone since 2011? Wow.
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Hi Tsu. Hi Pat I’ve onlybeen on Faslodex since June. The best info I found was here at this site. I think the warming is important and slow and steady. Yesterday was the first time I had a two big glumps. The nurse said she warmed it but I think she did it before my Herceptin infusion. She also pushed it fast. I massaged it and walked for 45 minutes. That helped.
I’ve had some spots on my thoracic spine get smaller. Hope it works well for you . I don’t have ¡sleep problems from Faslodex but I’ve been on AIs before.
I mentioned to my mo that I had odd smell in my urine. She said she never heard of such a thing. I read about here. Otherwise I might have been concerned. Asparagus does something similiar too.
I did 75 mg of Ibrance for 2 months but had to stop. Blood counts crazy but I have underlying issue. It works well for many people. Take care. Maire
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Pat, it looks as though your answers are here. Maire, I think maybe the fast injection could have caused your issues. My first two times were unpleasant bu the nurse who does mine now clearly read all about it~~he had heard about my bad experiences and it was just as above.
Maire, I don't think we tell our doctors everything and I have not mentioned the smell thing myself but it was mentioned on the Canadian mets thread on Facebook. For sure is is happening to me. TMI for some, but I now have feminine wipes in my bathroom. Otherwise my parts smell horrible even a few hour after a shower or bath. Maybe we should be called the Faslodex gang? It is truly gross and over my cancer years there have been a few gross things. When I was doing chemo 5 years ago, what I felt were bumps like what is on top of lego parts. My MO even sent me to a Gynie doctor who had never seen anything like it either. Luckily it went away.
Marian
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Hi! Jamiemarie, JoynerL, Marie67
I started out with stage iv right away in 2011. I wasn't confident with my self exam so I thought I also would look at my breasts in the mirror every day after my shower. After about 3 months I noticed left breast was looking a bit different and shifted a bit left. Still not feeling a lump. Watched for a few days and decided to see my doc and sure enough that's what it was,3 centimetres. It also was in an odd place. It was underneath where breast meets rib cage. So that small lump was pushing breast up and slightly left.It was stage iv and about a year later had tiny spot on liver. Had that ablated and showed no other symptoms until 2016 when the spots started on my spine. So I guess I was in remission. Oncologist called it NED (no evidence of disease) But still am doing pretty well considering.
As always, Be kind to yourselves
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Farewell Falsodex sisters. After 6.5 months I’m going on Arimidex , Herceptin and Tykerb. So I will miss being on this group of fanny packs. Tsu I like your words of wisdom “always be kind to yourself”. Take care all. Mair
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Oh, Maire....I hate to see you go! Good luck on the new treatment, my friend-
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Wishing you the best of luck with your new treatment, Mair!
Tina
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Well, it"s official. I am now part of the fanny pack. First jabs today. Not too bad. Stung a bit and I think my GP was a bit quick with the injection but overall no issues. The only downside was that I was so preoccupied with the injection that I left my iPad at my GP's office! I'm sure I can get it Monday but I was the last appointment today so by the time I realized what had happened it was too late to get it. Serious technology withdrawal tonight!!!
Thanks all for the advice. Pat
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Pat, I am assuming that you are either using a computer at home or your phone? When you have your favourite technology tool it can be tough. I am not a very good iPad user so love having my computer for posting here. I am glad for you that it did not take long to sort out the funding/insurance issues.
Welcome to Faslodex. I had my injections on Thursday and nothing new to report though I await the nasty urine or whatever smell. I was with two really good friends in Calgary earlier in the week and both have had breast cancer but it was TMI about the smelly Faslodex issue I have. Oh well.
Maire, best of luck with your new meds.
My next Faslodex injections will be Feb. 16 in a small village north of Auckland. My SIL has arranged it.
Marian
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Hi Ladies, I start Faslodex on Friday. I am quite scared. I think it's because it's new and different to me and I wasn't expecting a change so soon. Thanks for listening. It feels better to "say" it out loud.
Hugs,
Suz
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Hi Stllivin,
I’m a newbie too. I had my first shots to the butt last Friday. I’m generally pretty stoic about treatments but for some reason I was also pretty nervous. I think it was primarily nervousness about my GP’s patience in terms of injecting slowly. But I am happy to say I survived. 😉 I did have very achy hips for two days afterwards. Felt like I had been riding a horse!
Ladies, a question about aches and pains. Does the Faslodex cause ongoing aches in your groin area? I have pain in my groin, feels a bit like a torn muscle but when I poke around the pubic bones are tender. This groin thing started a couple of weeks ago (before Faslodex) but it seems to be getting much worse. Nothing I can’t live with but persistent.
Cheers. Pat
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Sadiesservant- I have not had any pain in the groin, but I have had back pain, right upper abdominal pain, and rib pain. MO and I don't know if it's tumor flare from the new treatment, or progression. (scan in March) The transition from Ibrance to Falsodex has been disconcerting and moderately painful. Pain also seems to travel around. Anyway, I hope you have improvement STAT! (ASAP no longer acceptable to me) Best, MJH
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Hi ladies. Is anyone on just faslodex? I have several tiny bone mets and my proir incologist had me on ibrance and xgeva but then I got Osteonecrosis of jaw. So i have been on 12 weeks of iv antibiotics in the meantime com jan 1 st my insurance nade me go to MdAnderson. Oncologist there said my mets look stable and she only wants me in faslodex. Are there others in just faslodex. Thank
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Welcome to all those new to this treatment! I hope it will work as well for you as it has for me. I have been on Fas with Ibrance for 2 1/2 years, and NED for 2 years.
During my last 2 treatments my nurse has had an extra hard time pushing the plunger during my shots, to the point of wondering if they changed the needle size. For my 2nd shot last month she used a bigger needle as the 1st shot took almost 4 minutes. I tried calling Astra Zeneca, but they were unaware of any change to the med or package. So now I am wondering if my nurse's difficulty is due to scar tissue buildup in my butt. I have the same nurse every time, so it isn't her technique.
Have any other long term Fas users experienced this? I'm wondering if it's time to go to another injection site. I have always gotten my shots in the dorsogluteal muscle.
My nurse also informed me in December that my clinic now recommends the ventrogluteal injection site rather than the dorsogluteal. She said this was due to concerns of the injection not reaching the muscle for those with more padding in the rear. As I had good results in the past (and my butt is on the lean side) she was okay with continuing with dorsogluteal injections.
I'm a little (okay, a lot) afraid to try the ventrogluteal (hip) site for injections. Looking for experience from anyone who receives their shots in the hip rather than buttocks.
Best wishes to all!
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