Faslodex: My PET scan showed three new... - SHARE Metastatic ...

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Faslodex

Gram10 profile image
27 Replies

My PET scan showed three new areas that have metastasized plus pleural effusion. I've been on Letrizole for 2 1/2 years and it obviously has stopped working. My oncologist is switching me to Faslodex injections. What can I expect for side effects? Is anyone familiar with this treatment? I am very scared .

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Gram10
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Bestbird profile image
Bestbird

Faslodex is a good next-choice, but I'm surprised your oncologist didn't propose pairing it with a CDK4/6 inhibitor such as Kisqali, Ibrance or Verzenio. You may want to obtain a second opinion!

That said, below from my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available as a complimentary .pdf, is a list of things to ease potential discomfort from the injections. For additional information please visit insidersguidembc.com

I hope your next treatment works well for you!

Faslodex injections are administered intramuscularly in the buttocks and can be quite uncomfortable during and after the shots, which is due in part to the thickness of the vaccine. These suggestions should help to minimize discomfort:

• Consider taking an over-the-counter pain relief tablet an hour or two before the injection.

• Warm the syringes under your armpits for several minutes until the vaccine reaches body temperature, which makes the shots easier to administer.

• Ask the nurse to gently massage the injection sites before the injections.

• Have the nurse put numbing spray on the area before injecting the vaccine

• Ensure that the nurse will use the “Z-track” method for the injections to prevent leakage of the serum into the subcutaneous tissue. Z-track instructions are located at: healthline.com/health/z-tra...

• Make sure the nurse will inject the vaccine slowly (1 – 2 minutes per injection)

• Ensure that there is no weight on the area being injected by standing with your weight on the opposite foot or lying down on your stomach and pointing your toes inward (most patients prefer this method).

• After the injection, apply ice packs or heat pads to the area (some patients drive home with the car seat heater turned on), drink lots of water, walk as much as possible, and avoid sitting for long periods of time.

Gram10 profile image
Gram10 in reply toBestbird

Thank you so much for your input and suggestions for pain relief and what to ex pect

My oncologist did have me on Ibrance couldn't tolerate it. I have an autoimmune disease.

Bestbird profile image
Bestbird in reply toGram10

You are very welcome! : )

Here_now profile image
Here_now in reply toBestbird

These are great pointers. Thank you.

Bestbird profile image
Bestbird in reply toHere_now

You are very welcome!

Adele_Julia profile image
Adele_Julia in reply toBestbird

Bestbirds authored and extremely helpful “insiders guide to MBC” book and .pdf is amazing! What a blessing ! I’ve read rumors that Fulveresant (Faslodex) may be coming out in an oral form. Does anyone know more about this? Hugs !

Bestbird profile image
Bestbird in reply toAdele_Julia

Adele_Julia, thank you for your kind words!

Oral SERDS (oral versions of the injectable SERD Faslodex) have been studied in clinical trials for years, the longest-running of which has been Elacestrant (RAD-1901). Results appear to be encouraging, and I do not know why approval is taking so long.

love2golfwell profile image
love2golfwell in reply toBestbird

That is wonderful advice Bestbird! If I ever need to go on this medication, I will remember these tips. Will also look for a copy of your book.

Karen2235 profile image
Karen2235 in reply toBestbird

Thank you.

Diana_Long profile image
Diana_Long in reply toBestbird

also have them massage the area for 1-2 mi utes.

Mine are brought out early, so it is at room temp. 1-2 minutes very slightly injected one side, no weight, then the other.

This last time I did get a bump and big bruise on one side because she put it in too fast. I had her do it slower on the second side, which has no side w

Blessings

Iwasborntodothis profile image
Iwasborntodothis

I was on this briefly and had no complaints - don’t be scared.

Gram10 profile image
Gram10 in reply toIwasborntodothis

Thank you. I need all positive thoughts. I've been battling this monster for many years.When they say five years you are cured. No way! Four bouts for me. Metastatic was unknown to me whenI got that first bad mam6

Iwasborntodothis profile image
Iwasborntodothis in reply toGram10

You are in the right place for positive thoughts - you will have lots of good responses to your questions

Topood profile image
Topood in reply toIwasborntodothis

Me too! The shots were a little intimidating at first, but were not a big deal once you get used to them! I had no significant pain or side effects...

debbiedo2063 profile image
debbiedo2063

Hi thereI have been getting these injections since Dec 20. They don’t take long, a few minutes and I have had no pain as yet from them or bruising so no complaints. The only thing I have noticed is for 2 days after injections there is a metallic smell coming from my urine but I drink loads of water and it goes by day 3.

I stand up and lean on the back of a hospital chair during the injections and it seems to work fine for me. I go home straight after and drive no problem. Good luck. Xxx

Here_now profile image
Here_now

Hi,I am on Faslodex, it's going fine. I found it painful the first month, but three rounds in and it's much better.

I had kind of noticed that walking a lot after helped, thanks to Bestbird for confirming it. I'll be sure to do that everytime now.

Yes, drink lots of water too. Though you'll probably feel thirsty and want to anyway.

I think I'm tolerating it better than Letrozole, I don't feel as achey.

Hope it goes well for you.

Faye x

queeneee profile image
queeneee

I recommend walking or cycling after the injection to get the blood moving around that area - I found that it helped with follow-up pain from injection.

PJBinMI profile image
PJBinMI

I got over 9 years from Faslodex and had no problems tolerating it! Like you, Faslodex followed Letrozole for me. One thing I really liked about Faslodex was that it was not a daily pill reminder of having MBC! When I started getting it, in 2009, it was just one injection and I did well on that but when the FDA approved the larger, 2 injection, dose, my tumor markers dipped into the normal range for several months, the only time that has happened for me in my 17 + years with MBC. It was suggested to me that I lean on something and lift the foot on the side being injected. That relaxes the muscle being injected and helps prevent problems at the injection site. I did find that the day of and next day I was a bit tired, and I just started planning on having a nap in the afternoon of injection day. Someone here suggested getting a second opinion. If you have never seen a bc specialist onc, that can be really helpful in long term planning. The best places in the US for that are the Comprehensive Cancer Centers, listed on the National Cancer Institute website, and also with a link on the home page of HL under resources over on the right side of the page. CCC is the top designation that the NCI gives, and most of them are affiliated with medical schools and have bc oncs who both see patients and do research. My own onc suggested I do that right after initial staging, when "extensive bone mets" were found. My husband and grown daughter went with me to that appt and as the onc talked, I could feel their anxiety about me lift and leave the room! That alone was worth the trip! I've gone back several times in the last 3-4 years and have also gotten to see a cardiologist who specializes in treating cancer patients. Another thing about being on Faslodex is that it gives you some time with an onc nurse and they know alot and can answer alot of questions, sometimes "little" things like where the best local place is for buying bras, wigs, whatever special things we may need. Getting to know a good nurse was really helpful to me and I kinda miss the one on one time with them.

lynzer profile image
lynzer in reply toPJBinMI

Wow! 9 years! It gas been 3 for me. It works wonderful for my cancer but I have major scar tissue and numbness on one hip. Lumps all over. I just ask my doctor to switch me to letrozole but he can’t until I’m post menopausal. Thinking of getting my ovaries out.

Should I switch to MSK for infusions? Is it possible my hospital nurses are not doing them right?

Griffie120 profile image
Griffie120

Hi, Letrozole also stopped working for me. I do the monthly Falsodex, I was so scared of all the comments that when they took my blood pressure it was sky high and the dr suggested medication lol. Having said that I didn’t feel a thing, only once did I have a bruise and a bit of an ache for for a few hours, but really no side effects at all, extremely tolerable. When you bend over make sure your toes are pointed towards each other and slightly bend you knees, makes your legs relax. I have 2 nurses to do each side, less than 2 minutes and your done, easy peasy. I find the injections easier than some of the meds. Good luck you’ll be fine. Hugs ❤️

bannar profile image
bannar

My injections are done on both sides at once with two nurses, of course. I always tell them to have a contest to see who can be the slowest.

cpidacks profile image
cpidacks

I have been on Faslodex since March of 2019. The first month I had soreness. I have two nurses give me the injections at the same time. I lean on the counter in the exam room and try to relax. The nurses will massage the area after the injections. I find using the heated seats in my car and walking after the injections helps. I have had bruising and some itching. As others have mentioned, I also have the metallic smell in my urine. My liver function test has returned to the normal range and my tumor markers are also in the normal range. Don't be scared of the injections. Good luck to all of us in our journey.

Gingerann1 profile image
Gingerann1

I am on Faslodex along with Ibrance and have not had any side effects from the Faslodex other than a little sore the next day at the injection sites. I have found that having them both at the same time is best for me. I lay on a heating pad when I get home and a little the next day if necessary and that is about it! Once you get the first ones you’ll feel easier going forward. Best to you...

Djd60 profile image
Djd60

Hi, I’ve been doing the Falsodex injections for about 6 months now, with Xgeva injections and Ibrance pills daily 21 days on and 7 off, I found that I have to do the Falsodex and Xgeva a week apart because I get sick from them together , but mst months I’m pretty good on Falsodex injections, but for some reason the last two injections which I get at the same time made me nauseous for 4 days, I take zofran twice a day to help with the nausea, the Falsodex I make sure they warm them up before they give them to me, it will help with them not being as painful, I have to admit they pinch some, don’t like to get but that’s life and we go on, other then that I’m good, thankful to be here and so far my cancer is stable for now, hope this helps, you can handle it, don’t worry yourself sick and good luck to you !

Adele_Julia profile image
Adele_Julia

I agree with the suggestions the ladies mentioned here. I’m on Faslodex and IBrance. A bit tip that helped me enormously is leaning over the examining table and lifting my foot up on the side of the injection. In this way you’re not putting weight on that leg and flexing the hip muscle. Works like a champ !

MaryCos profile image
MaryCos

I am still stable on Ibrance/Letrozole, but I do have a close MBC friend who just started on Faslodex (Fulvestrant) injections. She was really scared too, and I told her what I had learned about Fulvestrant shots from women on this forum and elsewhere.

Seems to me that the side effects are similar to Letrozole (and Ibrance). Your biggest challenge (as far as I know) is making sure they give you the shots properly. For my friend, the "pigeon toe" technique worked best for her. (And she just got her third injection.) Stretching prior to and after the injections help, as does a heating pad afterward. From everything I have heard.... you need to make sure you keep moving after your shots. And, if they have you stand for the shots, make sure you don't have weight on the side getting the injection. So, it seems, loose muscles are best.

I did read that an oral form is in development! Hang in there! Sending you much love and support.

Cos

Karen2235 profile image
Karen2235

I had bruising at the site of the injection and felt a bit weak the next day. I have to take it easy for a few days after the injection. My oncologist has recommended a monthly Faslodex injection and Kisqali (3weeks on and one week off). The main side effect has been loose stools. I have my first bone scan in a couple of weeks to see if the combo is working. I am so grateful to the knowledge and support of other women on this website. I hope the treatment works for you.

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