Falsodex

[Frenchgirl69]

I recently changed from Ibrance and Letrezole to Ibrance and Falsodex. I has my first injection of Falsodex on October 29th. Does anyone know how long it will be before I know if Falsodex is working? I have Mets to the liver only.

Camille Keller

[Nocillo]

I suppose you will have to wait until your doctor wants a scan to see if it’s working. Not sure what time period they wait for.

[Fiercefighter13]

Typically they wait a full 6 months with Faslodex to evaluate the full results. That being said, the timeframe could be different, given extenuating circumstances such as a bad reaction to the shot, or a rapid onset of progression. It’s really important to remember that with most cases of metastatic breast cancer it is a marathon, not a sprint.. I know it’s hard to be patient and wait, but after almost 6 years of running this marathon, patience has become one of my best friends. Wishing you well! Take care.

[visitingnurse]

I have been on Faslodex for a little over 3 years now and my numbers have been stable. I have had breast cancer over 34 years. I know I am one of the lucky ones, so be patient and think positive and pray. God Bless you and all of us warriors!!

[diamags in reply to visitingnurse]

Have you had stage IV for 34 years?

[Cocoacandy in reply to visitingnurse]

Is Faslodex your only treatment ? I am approaching 2 years on just Faslodex and Xgeva

[BorisCarloff]

Hey Camille-Quickie question. Why did the doctor switch you to Faslodex? And if your shots hurt, use ice packs before for a few minutes, it really works!

[Frenchgirl69 in reply to BorisCarloff]

After 20 months on Ibrance and letrezole, I had progression. Thanks for the information.

[diamags in reply to BorisCarloff]

Either the ice pack, or make sure that the Faslodex is room temperature. I do that, and no problems.

[SaraJukebox in reply to BorisCarloff]

Yes, make sure the Faslodex is warmed before the injections, if you're standing up while they give the injections point your feet inwards towards each other. This makes you relax the area where the injections are being given. Then I make sure to sit with a heating pad on the injection sites after the shots and the next couple of days after that. It makes a big difference for me!! Wishing you all the best with the switch!!

[Beryl71]

I made progress after a few months, lymph node reduced and tumour markers reduced. Good luck!

[cpidacks]

I have been on Faslodex as my only line of treatment since March of 2019. I have a tumor in my liver. My scans have not shown any progression and my labs are in the normal range. I was first diagnosed with Stage 2 breast cancer in 1991. Had radiation and chemo. I am hoping for many more years on Faslodex. Good luck to you on your journey.

[Oberammergaux2]

I don’t know about “working” but the drug has a 40-50 day half-life per the manufacturer so your doses will be overlapping. I have had liver mets over the years and use gamma knife radiation to eliminate them. Much prefer that to the meds but everyone is different. Here’s to your next scans showing positive results! Hugs to you 💐

[yevgeniakoretskaya in reply to Oberammergaux2]

I have liver mets.After ablation I got more mets.Doctor das not believe that ablation works in my situation. Whot is the differene approach doctors have.After ablation i was sick for 3 weeks. Now is chimo terapy. Please share your experiences with ablation. Hugs Yevgenia.

[Oberammergaux2 in reply to yevgeniakoretskaya]

I have had a total of 19 gamma knife radiation treatments to my liver for mets as they appear. I have some fatigue with the longer sessions but generally the treatments are VERY well tolerated and so much easier for me than chemo.

I am currently waiting to see if the last radiation was successful for all the most recent mets.

[Trissh in reply to Oberammergaux2]

Over what period of time have you had 19 gamma knife treatments to the liver. Were the previous 18 treatments considered successful, do they treat one lesion at a time? I am considering histotripsy, but this sounds interesting as well. --Trish

[Oberammergaux2 in reply to Trissh]

Hi Trissh

I think my first gamma knife sessions were about 10 years into this road. I had 6 daily sessions to treat a few liver lesions. Next round was a couple of years later and consisted of 3 sessions for one lesion. My last was this April and treated multiple lesions and was 10 daily sessions. It’s incredibly specific radiation involving radiation oncology and physicists to bring the radiation in “spokes” to deliver a high dose right to the tumor (sparing surrounding tissue). So far the gamma has destroyed the lesions each time. The liver is forgiving and recovers. Honestly, my only real side effect was some fatigue, some right sided tenderness after the last round but that was a lot of sessions.

Hope that’s helpful! Best wishes!

[Trissh in reply to Oberammergaux2]

I have heard of cyberknife being used on liver lesions but this is the first time of using gamma knife! That's incredible. What facility is using this on liver?

[Oberammergaux2 in reply to Trissh]

I believe gamma has been in use longer than cyber and I’d think should be available at larger cancer centers. Gamma uses a number of radiation paths much like the spokes of a wagon wheel to get high doses to the lesions without over radiating other areas. I think Cyber uses a singular guided pathway to reach the lesion. It’s a blessing!

[fancydog]

Your Dr will probably scan you 3 months after changing to Faslodex and hopefully some response will the noticeable.

[ANNIE6449]

My only met has been to my scapula and it caused a lot of pain. Within 24 hours of my first shot the pain was down 80%. After the second injection the pain was down 95% and no longer an issue. I was on it for about a year, recently restarted it and the same thing happened. I do not know if this is a typical reaction, but it was great for me!!

(Changed meds to capecitabine after tiny mets appeared in other bones. Everything disappeared but the scapula spot so went back on the Faslodex until we can get biopsy to see if it is the cancer or something else causing the PET to light up. Last two PETs showed activity in the scapula which was bone healing, not progression. Othopedic oncologist has to do the reading bc most techs don't know this about bone mets.)

[Timtam56]

Hi. I’m on Faslodex and Piqray/Alpelesib. Changed from Ibrance /Anastrozole to this “Trial” last November. So 12 Months now. My oncologist has told me that he thinks it may be starting to not work as well due to a constant increase in CA Markers..

I used to be very very scared of the shots at the I just get them from at the Catch the lift upstairs and sit and put them under my arms to warm them up.. they’re always past room temperature by the time I get them put into my bum. I don’t know if it’s me or not, but I don’t find them to be as bad as I did at the start. I get them both done at the same time by two different nurses and I ask them to around the of the as they’re putting it into me. And that seems to work really well.

I’m doing alright mostly except that. I think it might be the Alpelesib that some really yucky that I’m not coping with. My nails are coming off. I have hardly any nails left. And that causes a lot of problems for me. My taste buds are not the same my mouth hurts. My skin is dry. I get really really bad cramps and I don’t know if that’s because of the I have to take because of the drug induced type two diabetes. And on and on it goes. To tell you the truth I’m pretty much over it. I’m even wondering whether I want to keep going with any more treatment. It’s not that I’m depressed. It’s just that I’m having to deal with what is and I don’t like what is any more.

[Oberammergaux2 in reply to Timtam56]

Hi Timtam,

Sounds like you have hit a rough patch….I’m so sorry! 😔 It’s a hard road to travel and especially at the holidays. I know you must miss your beloved Stevie. My rock was a Saint Bernard named Geneva…always there, always knew when days were hard, always able to pull me through. I lost her as you lost Stevie and the path has been lonelier. I can’t tolerate Fulvestrant, temporarily lost the ability to walk from a reaction to it so I can understand that “oh I just can’t” feeling with new drugs being offered. I’m hoping your daughter is close to you and can offer some hugs and encouragement that there are other things to try. I also understand your “tired” comment, I think most of us have those feelings more than we admit. I hope the light comes back on for you….there’s more to do, more love to spread around, a daughter and grandpup to hold on to. This is way past appropriate (and please excuse my boldness) but is there an animal rescue nearby you could volunteer at? I think Stevie would approve 💕

[13plus in reply to Timtam56]

Hi Timtim,

I’m sorry to hear you’re having such a tough time with your treatment. It can get us down fast when we have these side effects to either treatment or the cancer itself. I’ve had a couple of particular down times in the last 2 years Each time under lots of stress waiting a whole month for new treatment to start. I was feeling quite negative in September. But Ivstrated my new treatment, (Enhertu) and now, amazingly, I feel great again. So we can never know how it will go. You surely have other treatment options still left? Hang in there my dear fellow Aussie

[Timtam56 in reply to 13plus]

thank you for your lovely response. Im hoping it will pass too. But I had to be honest here. As, I guess, … if I can’t do that here, where else can I do I it?

[TammyCross]

When I finally, after months of arguing and pleading, got my primary doc to order an x-ray, it showed a large mass in my chest. I saw a thoracic surgeon, but a biopsy showed it was mbc. It was in lymph nodes in my chest and lungs, and in many bones. I was in terrible shape by the time I got to a breast oncologist: I was underweight and wasting, very weak, out of breath just walking from bed to bathroom. I started on Verzenio and Fulvestrant immediately. When I went for the fulvestrant injection, the nurse said, "My medicine will have you feeling better tomorrow." She was wrong. I got the injection on Wednesday, and it wasn't until Friday that I was able to sprint uphill. It took two days, not one.

So when will you know? I guess it depends on what your symptoms. There was nothing subtle about mine. It was very clear that the fulvestrant was working.

[POT2018ery]

I had scans every 3 months for the first year to monitor the stability of my disease. At the first scan there was a marked improvement in all my lymph node involvement. Since then I’ve been stable. My Mets are in my ribs and spine.