Concerns about Faslodex

[Blondslovelife]

Hi everyone, after 3 1/2 yrs. the cancer returned. Was on letrizole & it quit working. Will be getting Faslodex shots. What has your experience been? Good, bad? How long have you been on it? What are your thoughts and success of it working? Thank you for your advice.

[HoneyBadgerLady]

I've been on faslodex for over a year and a half. The shots are annoying but not seriously painful for me. Sides effects for me include fatigue, muscle weakness, and some brain fog but again more at the annoying level rather than awful.

[Blondslovelife in reply to HoneyBadgerLady]

thank you & has it shrunk the tumor s?

[HoneyBadgerLady in reply to Blondslovelife]

Yes, although some are still show low level FDG uptake on a PET scan. (bone mets) Fingers crossed!

[kearnan]

I was on 50 mg. of Verzenio and the falsodex injections for three and a half years. The injections for me were just like donating blood. A small pinch in each butt. Never had pain, could sit down immediately. Then again, I have a meaty butt. Unfortunately, the cancer has progressed to liver and growing rapidly. I actually cried bc that combo of drugs got me through 3 and 1/2 years of feeling basically normal were being taken away. It was like losing a friend you can trust. Now things are changing fast. I really had no major side effects and felt normal. Now, the drugs are tougher and not working. Falsodex was the easiest of them all for me.

[Blondslovelife in reply to kearnan]

thank you and sorry to hear about your progression. Praying for you!

[Rbeth]

I’ve been on it for 4 years. I weigh 132 # and have a small butt. The next day I have diarrhea and feel like I got hit by a truck. I keep going. I have shots Tuesday. Ice packs and walking for a half hour at the medical facility then onto a heating pad. When you find a nurse you like have them as your regular. Yes they give shots differently.

I put lidocaine on the spots an hour before my shots. Also I get them standing up and take the weight off the side I am getting the shot. I hope this helps.

I’ve had MBC for four years now and have been on faslodex with all my treatments. Best to everyone in fighting this awful disease. Reenie

[8576]

I don't do the Lidicaine but did the rest of the ritual. Had Faslodex shots for a year before progression. No side effects to speak of. Good luck to you.

Cheers, June S.

[8576]

I don't think the dosage matters. What ever works.

Cheers, June S.

[Leefromct]

So far so good with Faslodex. I take it with Ibrance 125mg. No pain or terrible side effects. This is what I do:

1. Apply ice to the injection site 30 minutes prior to injection. I would prefer lidocaine but the doctor is against it.

2. Make sure the Faslodex is room temperature. It should be out of the refrigerator at least 30 minutes prior to injection.

3. Make sure the alcohol swabbed area is dried before they inject.

4. Make sure they inject slowly.

For me it was the fear of the unknown and the fear of needles and pain. So far it’s been fine. The bonus for me this is the first treatment that is working so far after a year of 3 other combos that didn’t work. Good luck to you.

[AuntyJane in reply to Leefromct]

Very good advice - I also follow #2,3,4. Do you know why your doctor is against Lidocaine to numb the area before the shots? My oncologist just prescribed it for me. Thanks.

[Leefromct in reply to AuntyJane]

The Oncologist was against Lidocaine because anything applied to the injection site poses a risk for infection. I disagree but the ice is working for me.

[13plus]

I used to be on it when I was also on iBrance for nearly 3 years. I don’t think it gave me any side effects except itchiness, sometimes intense.

However, I did find the first 2 times getting the shots (kneeling in a chair which I found very awkward/weird) that right at the end of the shots I got quite light headed. They thought maybe because I’m small it went to my head quickly but I was a first for them with this symptom! Lol.

So, from then on I got them lying down on my stomach and then I had no issue at all - go figure! I found this helped me keep my butt cheek much better relaxed too. Heat packs are great for increasing blood flow to get the thick substance to spread through the tissue better. I did usually have a hard lump at each injection site but the BEST thing to do to minimize this is to move your body!

Get walking, do squats, stairs, bridge exercise, stuff that uses your glutes well - for the same reason as the heat pads work but even better. You can also rub the lumps, don’t be afraid to roll them on a foam roller, or even use a table edge etc, Unless you have no butt, so to speak, you won’t hurt yourself with that last suggestion.

Lastly, a nurse told me to take a Claritin before the shots. Seemed odd BUT the itchiness is a bit like an allergic reaction? Anyway, that helped me a lot! Before I did that walking around scratching both butt cheeks simultaneously was not a good look 😂. Try these things as you need them (def use heat pads and have the nurse warm the syringes first!! Ask her to inject slowly too - should be at LEAST 30 secs to a minute for each) and you’ll be fine. Best wishes moving forward

[mariootsi]

My experience with Faslodex has been good. I think you will find them tolerable with few side effects. Works well.

[Blondslovelife]

Thank you for all the helpful information!

[AvidBooklover]

Have had these injections for 3.5 years now. Small butt. The last two injections at Sloan they have done more out towards the hip. They gave me paperwork on why they are doing this, which I read and filed. I had a tumor in my left hip...been NED for a while thank God! Also on 100 mg Ibrance. Side effects are smelly urine for 24-48 hrs and forgetting the bandages are there and finding them in bath water! The first time I went they told me the woman before me went horse back riding afterwards. Not sure if that was true, but think of that when I get the shots. Biggest pain? Going every 4 weeks!!! They are working slowly on a pill and I wish they would ramp that up!!!

[Blondslovelife in reply to AvidBooklover]

thank you & I have a class to attend before the first shot. Also I have about an hour drive to get to the hospital where my cancer center is at. Not looking forward to all the driving! Will be watching about the pill progress.

[AvidBooklover in reply to Blondslovelife]

I go to Sloan Kettering in Basking Ridge. There definitely is a nursing shortage in this country. Labs and shots take longer due to low staff. Insane everywhere. My mom was in rehab recently and every shift had a shortage!

[mspti8383 in reply to AvidBooklover]

That’s true about the smelly urine after Faslodex injections, fortunately it goes away after a few days. I found that massaging the area immediately after injections helps to reduce bump formation, also warm packs to increase circulation.

[Blondslovelife in reply to mspti8383]

thank you!

[PJBinMI]

I'm a long timer (18 1/2 years) with E+ her2 - MBC and bone mets. I've met alot of women with MBC (on line, conferences, support group) and it hasn't been unusual for us to get longer results with Faslodex than with an initial AI, like your Letrozole! Plus, having Letrozole work for years rather than months, or not at all, makes it very likely that the Faslodex will work well for you. I got over 9 years from Faslodex after almost 5 from Letrozole, I am treated at a cancer center and the onc nurses there are experienced, knowledgeable and kind. From the first shot, they asked me to stand on the foot opposite the hip there were going to inject, and to put my weight away from the shot side. I may not be explaining this well. If shot going into left hip, weight on right foot and left foot up a bit and that whole hip-leg relaxed. Their pharmacist always took all the Faslodex to be used that day out of the fridge when they first got there, so it had time to warm up. IF it was still too cool, the nurse would hold it in her hand or give it to me to hold in my arm pit! When I started getting Faslodex, the dosage was for just one shot. Just after it was increased to two shots was the only time in mmy whole MBC journey when my CA 27-29 went down to the normal range. I did feel really tired for about a day and a half after the first shot and for about a day after the second, but otherwise had no side effects. (I do take Effexor for the hot flashes as I had extreme hot fllashes from anti-estrogen treatment.) Two things I loved about being on Faslodex were not having the daily "cancer pill" and getting to know the nurses better. I hope you will have a good long run on Faslodex! Much to be hopeful about!

[Blondslovelife in reply to PJBinMI]

thank you

[Hotlantaphatz in reply to PJBinMI]

thank you for your input! Stay strong.