Faslodex Girls Thread
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Thankyou Tina ! I did call the doc office, and they suggested ice packs to help with the nerve inflammation..it helped and I’m almost in no pain now 🙏..suffered for a few days..
I hear that oral faslodex is in fda approval..will be a welcome change..
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Hello everyone!
Due today for my 9th injection. Just found some vaginal bleeding--very light. Anyone experience this? What happened with that?
Thanks for any advice.
Cheers
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Movingsoccermom - My wonderful nurse told me that might happen, and it did. Only happened to me once during all my time on this drug, early on, and has not occurred since. If it's light and doesn't continue I wouldn't worry about it. Best to you!
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Jobur. Whew!! Thank you so much for your quick reply. I knew it was a unusual side effect, but had not seen anyone else mention it. I have an appointment with my primary on Monday to confirm its nothing to worry about, but honestly hearing from you is worth so much more. THANK YOU!!!!
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Movingsoccermom, You are so welcome! Hope this drug combo is as good to you as it was to me. I got 3 years of NED from Ibrance & Fas. I wouldn't be too surprised if your primary is unfamiliar with this se. I'm always amazed how little other docs know about mbc. Our forum is the best!
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Hi all, I'm just reporting my good scan results. Nothing new! Still stable! Quick review.
Dx 4/17 with 1 bone met. After radiation started femara and faslodex and ibrance and xgeva.
3/18 dropped ibrance cause 1 yr was enough. Will add back if tumor markers start to rise.
4/19 dropped femara
8/19 reduced xgeva to every 90 days.
Remaining on faslodex. Generic started in Dec.
I wish you all felt as good as I do.
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Hello,
I’m newly dx stage IV Mets to bones. I’m about to start treatment. I’m having a hard time deciding whether to enter a trial. My oncologist offered Faslodex with Ibrance or the study drug alone or study drug with Ibrance. I’m scared of all of them. Lol. I know I need to start treatment soon. I’m getting another pet scan this week. My last one was in November. I had a delay because I tried to go to my old oncologist but insurance won’t pay because it’s out of network. So now she wants to repeat the pet to get a current baseline. Any advice?
Glenna
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Hi Glenna. Sorry you have to be in the Stage 4 area with the rest of us.
I'm not sure why your doctor would start you off with a trial before first trying Faslodex/Ibrance/Xgeva. There are many here on that combination and a few for many years. I would check out the Ibrance thread here as well.
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Glenna, So sorry you have mets to bones, but many of us have done well for years with only bone mets, so there is lots of hope here. I agree with JACK5IE, why would you do a clinical trial for your first tx? I was NEAD for 3+ years on Faslodex and Ibrance, so I would suggest Ibrance and either Fas or an AI. I would probably go with Ibrance and letrozole for starters and save Faslodex for the future. I know, when you read the se's they all sound frightening, but do remember not everyone gets any or all of them. The first 2 months on a treatment seem to be the most difficult, but usually improve as your body gets used to the drug. Best wishes to you in whatever tx you choose.
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Hi All!
I hope you don't mind me joining your group. I'm finding it very helpful and I thank you all for sharing your personal experiences.
You can see in my signature line that I was dx in 2009, mastectomy, chemo & radiation, then on to Tamixofen.
Dx with a met in my femur 2013, treated with radiation and switched to Arimidex (Brand name as the generic gave me terrible side effects).
Fast forward to 2019 when I was dx with another bone met in my sternum and once again treated with radiation.
I'm still taking Arimidex but ONC has suggested adding Faslodex and possibly Ibrance.
So I started Faslodex last Thursday with a double butt shot and so far so good.
I had a bit of expected bruising and tenderness at the injection sites but that has subsided.
However, I have noticed that the last 2 mornings I've been waking up with numb thighs. I don't believe it's from sleeping because it's both sides and in the same area.
I've read about joint pain as a side effect - and my knees are now a bit more achey than usual - but this isn't joint pain.
This thigh ache is like a numb muscle soreness that starts at the hip and runs across to the inside of both knees.
It does improve as the day goes on and doesn't stop me from carrying on with my day.
I'm just wondering if this is a side effect of the Faslodex or something else?
Any thoughts? Anyone else have numb thighs?
Thanks!
Marie
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I've been on Faslodex for five months. I haven't had any other chemo since Gemzar failed. Several others failed, too. So, my MO decided to let me stay on it until my next scan, March 20. I had to take a break while I had my y90s.
So, I really haven't had any SE from it. I've felt really good. I don't know if it's working but I feel good.
I haven't read all the posts but wonder if weight gain is a common SE? Or is it just that I feel better off of toxic chemo?💞
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MarieK,
I have been getting faslodex shots since last July. I haven't experienced the numbness that you described, but I would definitely mention it to my oncologist and to the nurse who is doing the infusion. I have sciatica on one side, and I specifically reference that each and every time I have an injection, even though I generally have the same nurse. They can angle the shots so as to avoid muscles, etc., and that may be the problem.
Hi, Grannax,
I started off last June just with Faslodex because I was waiting for my microwave ablation, and I felt good on it as well (not so much with the now added Ibrance.). I have added a few pounds over the months that I've been on faslodex, but hard to say if it's that or the Ibrance, or the fatigue from the Ibrance so I don't want to do anything. I think that faslodex is very easy on the body, and I would stay on it forever if it would work alone.
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Me too, Bev Jen. I have ESR1 and Faslodex is mentioned in my report since its not an AI but a SERD. So, maybe it is working. Yes, being on Faslodex alone is sooo much easier than Ibrance. IF failed and was much harder on me. My first MO refused to let me have Faslodex instead of Femara. Weird!?!? My current one was excited that I had never had it so she was happy that she could use it for my TX while I was having y90s. There's always a silver lining.💞
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Does anyone know if an oral version of faslodex exists or is even inn a trial. I was pretty severaly injured at my last injection of faslodex about a month ago. The nurse injected directly into my sciatic nerve and my leg and foot went completely numb. I was unable to move them for about 30 minutes. some sensation came back in my foot but i am still not able to walk well and I am in excruciating pain. My next treatment is coming up and Im not sure whats going to happen. Has anyone had something like this happen?
Thanks
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There is a thread for the Elaine trial. It is a pill. It's called lasofexofine, or something like that. They are testing to see if it's better than faslodex So, I'm thinking it may be similar to faslodex. for ESR1 mutation patients. 💞
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Sungem,
To my knowledge, the oral version of Faslodex is nowhere near ready for prime time. Your experience should not have happened. It indicates to me that you must ask for a nurse who knows how to administer intramuscular injections.
Tina
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Thank you for this info. Maybe there's a trial going on in my area
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I know. It's pretty outrageous. Iits 4 weeks since this happened, I'm still in tremendous pain and now worried about getting my next treatment this week
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Hello all
My first post. no matter where I look, I can't seem to find the answers I'm looking for perhaps one of you can help me out?
Stage 4 Mets to the Bone and on faslodex IM injections.
my problem is that I'm thin with not a lot of real estate on the back end.
I am trying to get a handle on what kind of knots I'm experiencing in my butt after these injections. I'm not worried about the pain the pain is not the issue. The issue is, am I developing hematomas? Cysts? Lipomas? Lipohypertrophy? there are a number of conditions associated with lumps in your butt. Some are benign and some are serious. Currently, and MA is administering these at the treatment center I go to. She does inject slowly but I'm not sure we're capturing the correct IM sites best for ME and although there are other acceptable I am sites for large-volume injections, like your thigh, the answers I'm getting is the insert does not indicate injections anywhere other than your butt. I will discuss this further with them tomorrow.
I want to know what to label these lumps as? And what others are doing for them. Are you using hot packs? Cold packs? Massage? I got off of faslodex for about 3 months and tried anastrozole and letrozole and tolerated these poorly due to intense bone pain these created for me.
I like the fadlodex otherwise and have no side effects. I just want to understand these lumps better and whether I should worry? how to avoid these? I called fresenius on the package insert and got a totally stupid remark from someone supposedly clinical who did not even know whether faslodex would ever become available other than an IM route. ( even though some of you here have already mentioned an oral route is in clinical trial). More waste of my time as I'm still working out disability paperwork STD paperwork and I can go on and on..
I just retired as a nurse.and I've certainly given my share of IMs. However I think what is happening is more due to the frequency of getting these injections along with the size of volume that is being injected into each muscle. I'm running into this response from others that I should be thankful for the greater good of these injections and not ask so many questions about what's going on.
I disagree. I am thankful, in fact grateful, however I think this process can be done better once I understand better what is actually going on underneath this skin and how to circumvent it. I'm not getting very good answers from the clinic although I'm going to be pretty persistent tomorrow.
If any of you can share your experiences on this with me, let me know what you were told these lumps are, and how these were handled by your facility and providers, I would greatly appreciate it.
Thanks so much, Melisa
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Hi Melisa,
Given how much knowledge you have already, I'm not sure if I can be of much help in terms of the "why" but can corroborate the fact that I now have some extra lumps that were not there pre-Faslodex. They don't bother me - I don't have any discomfort from them - but they are there. I chocked it up to a combination of scar tissue building from the frequency of the jabs, the large volume and the viscosity of the castor oil suspension. To be honest, I never gave the lumps much thought. Just part of the "new me" post MBC diagnosis.
I recall there was some discussion a while back on this thread regarding the optimal location for the injections (don't know the clinical terminology but higher and more towards the hip bone rather than the tush). If you look back you may find the link to the article published on this.
Hope that helps.
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Here's the article: https://www.oncologynurseadvisor.com/home/hot-topi...
Tina
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Hi Sadie!
Thank you for your response. It all does help! yes it's a question of the dorsogluteal site or the ventrogluteal site. I'm actually going to brush up on that tonight myself.
My own lumps do sting for a couple of days when they lump up.
two weeks ago, the left one stung and created a lump the injection in the right cheek went in like butter and never bothered me at all!
Going to do some homework tonight but if anyone else has similar experiences and would like to share I greatly appreciate it!
Thanks to all in advance, Melisa
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Hey ladies... Been a minute since I checked in here. I have had mostly stable response since switching from Ibrance to Verzenio with Faslodex in November. It is keeping the lung nodules at bay and even had some shrinkage in December. Recent scan showed some mediastinal lymph nodes were growing again but they had previous shrunk after only 40 days on Verzenio with Faslodex.
MarieK: Hello fellow Vancouverite! I too have had thigh numbness and hip numbing. There are so many nerves where they do the injection. Do you get the shot at the agency? Who is your MO?
Sungem: Sorry to hear you had this experience too!
I now get the injections done by my family doctor. She seems to do it better than any of the nurses. I lie on my side and it’s more in the hip part of the butt than the back part where I did have crazy nerve stuff hit. I still deal with a bit of pain in one of my legs but it has lessened with massage. I hope that helps others.Nice to hear about the Elaine trial. Hope that comes into play sooner than later to save our lumpy butts! LO
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Ashlyn. I haven't posted much on here but have been on faslodex alone for almost six months. I was happy to read that Verzenio and faslodex is keeping your lung mets stable. I have lung and medistinal mets too. I have liver mets too but am hoping my y90s are taking care of them. Do you have ESR1? I do. Is Verzenio good for that mutation? IL and AA both failed. I've never had Verzenio.
I was interested in the Elaine trial I'm not sure I would qualify and have never had a liquid BX only liver BX and genomic testing twice. Plus the trial is not here in Dallas. Travel would be too difficult for me I think
Fortunately I've had no SE from the injections. 💞
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Grannax: I had an ESR1 mutation in about 1-2% of cells when I biopsied last which was in the Fall of 2018. So I am guessing it slowly brewing over time. You are in BC right? I would ask about Verzenio. I just posted about my experience with it in the Abema/Verzenio thread. Glad to hear you have no SE from the shots! Are you mediastinal mets noticeable? When my cluster gets large enough I cough and experience GERD. So far just a mild cough right now.
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Ashlyn. No I'm in Texas. I've had a few times that my voice was a little hoarse, groverly and I have had reflux for years. It has been a little worse recently. I take omprralozine RX for it. I have never noticed that area being swollen on the outside, though.
I had foundation one testing on a liver met December 2016. Then again on a new liver met July with a testing company used by UTSW. July 2019. Both showed ESR1 but I don't know the % I'll have to look back on my reports. I think both were pretty high % It's not too surprising because I've been on and off AIs for many of my 20 something years of BC and MBC. So it's an acquired mutation. 💞
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Hi All!
I got my second double butt injections last Wednesday. No thigh numbness this time. However I did develop a head cold with fever right after - or could have been hot flashes from shot?
I took a few days off from work and I’m feeling almost back to normal now.
The nurse doing the shots went very slow and massaged my butt for a bit after. It was nice haha! The injections were a bit higher and farther out than last time. Maybe that made a difference?
Ashlyn - I’m going to Lions Gate Chemo Clinic for my injections. I live on the North Shore so it’s easier for me. My MO is Dr Smiljanic. My RO Dr Nichol is out of BCAA and I go there for my scans. PM if you want to chat or get together
I have not noticed any lumps so far but I’ve only gotten 2 shots in each side. I guess this is something that happens over time with multiple injections?
Hugs to all and thanks for sharing!
Marie
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Hello all, My first post on this thread. I was recently dx with mets to my spine after 6 years on Arimidex. Just found out I have the ESR1 mutation and the report indicated the only drug that would be effective is Faslodex. Had my first injections last Monday without incidence, no lumps no soreness after. I had a nurse on each side to administer it more quickly. I started Ibrance and Xgeva the same day. I am feeling more fatigued and been going to bed earlier but not sure if that's from the meds, mets or in my head. The lab that did the mutation testing called me the same day I found out about the ESR1 and told me they are out of network from my insurance. They said they are the only one in the U.S. that does the test so my insurance will pay part of it but the test was $8000 and my insurance will only pay $5000. I've yet to get billed for the other $3000 and my MO office said they'd look into it for me. As it is I have an $8300 deductible. Any of you get a call like this. It was Guardant labs.
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Jenny. No, mine was paid for both times. Foundation One did mine the first time. The second time was a different company that my UTSW MO uses. I don't remember the name right now. There are lots of companies in the U.S. that do genomic testing.
ESR1 turned up for me too.
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I'm not stage 4 but I have a local recurrence and after a lumpectomy I'm being treated with faslodex. I've read most of this thread already. My first shots are on Monday. Will I be able to drive home alone? It's a 3.5 hour drive and DH was supposed to come with me but he's been under the weather with a stomach bug. I'm hoping to get the treatment transferred closer to home in the future and just check in with the MO a couple times a year.
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