Faslodex : I get my first Faslodex... - SHARE Metastatic ...

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Faslodex

Clair19 profile image
44 Replies

I get my first Faslodex injection tomorrow! I’m very scared because I have heard it makes you ache. I already ache enough and if anyone gets Faslodex please let me know how you are feeling and doing! Thanks for your help. Also start Verzenio and all of this is getting me down. I would appreciate any feedback. 👍

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Clair19 profile image
Clair19
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44 Replies
Jerseygirl45 profile image
Jerseygirl45

I went off letrozole and started faslodex in March. Saw my doctor today, told her I am feeling better. No aches and pain. I seem to have more energy. I am hoping it is from the faslodex. Just had bloodwork today, hope markers are going down. Give the new meds a chance. I hope you will feel better.

Clair19 profile image
Clair19 in reply toJerseygirl45

Thanks for that, I feel better. I was on another site but it seemed to be when they took it in combination with something. I guess everyone has different reactions, one lady said it doesn’t hurt one did. I mean that doesn’t matter I have a port. I just don’t need anymore hip pain. Because it’s not Mets related he won’t give me anything for hip pain. So my GP has to give me I like tramadol. I do take 2.5 ml Morphine twice daily if needed, but I don’t like all the other stuff he was giving me.The patch made me sick, Percocet 10mg made me a Zombie. So just a couple Tramadol, no zombie apocalypse feeling. They film the Walking Dead here so I figured I’d make a good Zombie.😋...Thanks I feel better about getting it tomorrow.

Jerseygirl45 profile image
Jerseygirl45 in reply toClair19

I don’t have any pain after injections. One on each side of upper butt. Not in my hips. Is the pain in your hips do to arthritis? They sting for a minute but that is it. I so hope it is the faslodex making me feel better. Will keep you posted. Good luck tomorrow.

Clair19 profile image
Clair19 in reply toJerseygirl45

I guess I do have arthritis at my age. But when I started on chemo treatments it got real bad in rt hip. I had a scan and it showed no Mets except spine and lung. But spine could cause hip pain. Thanks I’m not worried about injection pain worried about general joint pain after Faslodex long term. One lady said she cry’s all the time, I’m like oh please don’t let me have that. Anyway thanks for helping me out.

Epinto profile image
Epinto

I have been getting the injections for two years now. I sometimes get mild soreness at the injection sites and sometimes not. Ice usually helps. U will be fine. I thought it would be painful when I was first getting it but it is very tolerable.good luck.

Clair19 profile image
Clair19 in reply toEpinto

They had to warm it up on a warming blanket. It felt like it looks very thick and took forever. Now I know what to expect. I was so darn nervous, I don’t know why. I was not nervous getting chemo so I gotta buck up. When you say tolerable what do you mean? Like side effects?

Petreep profile image
Petreep

I had my first injections 2 weeks ago. I had both on the same side so I knew I could sleep on one side. It did swell up and I was sore for a few days but nothing so bad I needed to take any meds for it. Good luck. I’m also taking ibrance.

Clair19 profile image
Clair19 in reply toPetreep

She would not do that. I guess I will sleep standing up! I already have hip pain due to RA. Because I don’t have Mets in hips can’t get anything for pain for hips, bummer. I will take Tylenol. I couldn’t take Ibrance due to very low blood work. I would be happy with an older drug I can take without making me very sick.

Clair19 profile image
Clair19

Do you take any pain medicine? I’m burning right now, and I got light headed. I was driving so it scared me.

Clair19 profile image
Clair19

Yeah I didn’t get dizzy until I was driving, of course. I put my windows down and it went away. I’m a light weight because now I’m feeling nauseous. I did drink an energy drink so that might have made me nauseous too. I’m glad I have a great Nurse, I was so nervous she kept telling me to deep breath and when it was almost over. So just going to grin and take it like a big girl!

Epinto profile image
Epinto

Good luck to you. U can do this injection. It is really ok.

PJBinMI profile image
PJBinMI

I got over 9 years from Faslodex and found it pretty easy to be on. Somebody suggested that I have something to lean on so I could take my weight off the side getting the injection so I always did that. It's also helpful if the Faslodex is warmed a bit--it is kept refrigerated and holding it in your hand or putting it in your arm pit helps it warm up. The written protocol at the cancer center where I go is for the nurse to take at least two minutes to inject each syringe. It is very viscous, thick stuff and is a challenge to the nurses' thumbs! I have heard of people having injection site discomfort but I never had more than a little itchiness or very slight discomfort. It is an injection into the muscle and so a port can't be used for it. I've kept my port even though I've not had IV meds in several years. I just get it flushed every 8 weeks. It doesn't bother me at all and I may need it again some time so there doesn't seem to be a need to remove it. I hope Faslodex will be as good to you as it was to me.

Jerseygirl45 profile image
Jerseygirl45 in reply toPJBinMI

That is just how I get it. Please let me get 9 years on it. Did you tumor markers take a long time to drop.

PJBinMI profile image
PJBinMI in reply toJerseygirl45

It's so long ago that I don't remember exactly how long it took. I do remember that when I first started treatment, with bone mets from the get go, they showed a significant drop within 3 months. I was diagnosed over 14 years ago and just stopped Faslodex about two months ago and began hormonal #3 about 5 weeks ago. I worry more about my onc retiring than about progression! She's about 70 and started working just 1/2 time a few years ago......

Jerseygirl45 profile image
Jerseygirl45 in reply toPJBinMI

Thanks, this is my third month. Had blood work Tue waiting for results. Hope they dropped a little at least.

Clair19 profile image
Clair19 in reply toPJBinMI

Is the Faslodex the only thing you where on? 9 years great 👍

PJBinMI profile image
PJBinMI in reply toClair19

I was on Xgeva for the first few years and had to go off it because my bones were becoming like bones with osteoporosis. I tried Ibrance with the Faslodex for 10 cycles in 2016 but had problems with it and have ended up with Interstitial Lung Disease that I believe was caused by the Ibrance. I only have a bit of ILD but I do get out of breath easily and have to use two different inhalers every day and am doing pulmonary rehab, which I love! Anybody with lung mets might want to ask if pulmonary rehab would be helpful. It's mostly exercise and some education. But it is helping me alot and I love going--it's a happy friendly place plus I'm one of the healthiest people there! lol Imagine that!

Clair19 profile image
Clair19 in reply toPJBinMI

They warmed it on a warmer. I’m fine today just sore. She did a great job being a Nurse I always told my patients to take weight off. I give my husband Rebif injections for MS but it’s sub-q. I can pinch his skin but IM totally sucks. But this is no cake walk. Thanks.

Gracie301 profile image
Gracie301 in reply toClair19

Another tip I was told on faslodex was to walk around for 15 to 20 minutes afterward to get it circulated. It's so thick. I also would lay on a heat pad that night . I wish you all the best w/treatment.

Epinto profile image
Epinto

What is hormonal number three. Can u please share.

PJBinMI profile image
PJBinMI in reply toEpinto

I just meant I have been treated sequentially with two previous hormonals and had a bit of progression and switched meds to the third line of treatment I have been on. Third drug for me, not code for some specific med. I understand that could be confusing with all the med speak we have to learn! I started on Femara and it worked for almost five years, switched to Faslodex and got over 9 years on it and recently switched to Aromasin, the third hormonal I have been on.

AlisonGilmore profile image
AlisonGilmore in reply toPJBinMI

Why are you not on Faslodex anymore?

Mcap profile image
Mcap

My neutrophils were at 1.19, so Dr let me start back on my ibrance 100mg. Hoping I can stay on the lower dose. Also had my first 3 month ct yesterday. I was told result would probably be in be Thursdays or Friday, a little nervous. I also have this intermittent urge to cough, non productive, but they don't seem too concerned about it. It's something before diagnosis that I would have never even given a second thought about. Now with the lung mets of course, the worry is always in the back my of mind.

Clair19 profile image
Clair19 in reply toMcap

Oh how I know. Did you think it could just be sinus? The reason I said that is I’m so hoarse in the morning. My nose runs and I remember that cough I had it when I was diagnosed. I had pneumonia and after it cleared up I quit the dry coughing. So I live in Atlanta where pollen is crazy. I would not worry about it unless it gets worse. Sounds like allergies to me. I think all this medicine messes with our immune system. Hope you feel better!!

Clair19 profile image
Clair19 in reply toMcap

Also I pray your scan is good news. I will pray for you. 🙏

Mcap profile image
Mcap

Thanks Clair. I'm thinking it's allergies as well. I've been out mowing the lawn and that kicks up a lot of stuff.

How did your faslodex injections go?

Clair19 profile image
Clair19 in reply toMcap

Hey just saw this they where painful but nothing horrible. My hips still sore for some reason. I’m very tired too, I expect that’s normal. Thanks for asking.

Angelfish4 profile image
Angelfish4

Gosh, just one more site with replies to keep track of! It seems I get more stressed from trying to keep all the groups & people straight because I don’t want to offend by seeming I’m ignoring. Truth is that I get confused & can’t find the posts again!

After joining, I see this is an old thread, but I’ll ask anyway. Had my 1st Faslodex shot this week...so worried, but it was a piece of cake & I have zero tenderness! Yay!

Stage 2, lt DIT MX 16 mos ago, ER & PR +, HER- onco 16 so no chemo. 1 lymph node taken & clear. Refused Tamoxifen & AI’s.

Bad choice: Biopsied 2 lymph nodes on same side & 1 was positive. Pet scan clear.

So...I’m confused why I’m taking Faslodex.

It seems too easy...I feel like the drs are not telling me something. 😨 Next up is node dissection (maybe 10). followed with radiation if any more are positive.

I so do not want radiation! I so do not want any of this stuff! No support system so I’m pretty much on my own. I said when I got this, that I’d rather have a few good years vs being miserable if I was going to die anyway.

I saw someone said they got 9 yrs from Faslodex. I’d take 9 years! At my stage, does anyone know what I can expect? Dr says it’s curable, but that’s not what I’m reading.

Any comment appreciated...I need enlightening! Thank you, strong ladies! 💜

in reply toAngelfish4

Hi Angel,

I see from your post that your breast cancer is stage 2. I'm sorry to hear of your diagnosis. It is never easy receiving a diagnosis of cancer. At stage 2 you stand a much higher chance of being cured. If you are unsure of any of your treatment protocol I would suggest speaking with your oncologist who will be able to enlighten you with what is going on, why you are taking Faslodex and so on.

This site is for ladies with metastatic (stage 4) breast cancer. There is currently no cure for those of us with metastatic disease. Some people have gone into radical remission, but it is harder for us to reach that stage.

Take care,

Sophie x

Angelfish4 profile image
Angelfish4 in reply to

Hi Sophie, Thank you for your comments. I’m so sorry...I did not understand this site was only to address stage 4. My heart & prayers go out to you ladies. 🙏🏻💜🙏🏻

I will see if I can now remove myself from the group.

in reply toAngelfish4

Hi Angel,

Please don't feel bad or feel that you need to remove yourself from this group. It's just that your diagnosis is different to ours, so you might find it beneficial to also connect with ladies who are stage 2. We talk about lots of different topics on this site. It isn't all to do with metastatic breast cancer.

Take care,

Sophie ❤

Bailey3266 profile image
Bailey3266 in reply toAngelfish4

You can read all of this but yes Stage 4 is very different and I’d think if your stage 🙏2 it’d frighten you to read some of this; mostly I see great strides with stage 4 & I agree with below post you have really great chance with stage 2. FYI my stage one without Tamoxifen was cured for 7 years until my stage 4; I wish I’d had an AI like Femara back then; my 1st Oncologist said she’d wait until I was post menopause and then she got sick & I thought BM, Neg Sentinal node, Onco #13–I thought no chance of recurrence. Wrong. If you can tolerate Falsodex—take it and wgatever else they tell u (short of iv chemo—I dunno I’ll face that when I have to but my gut says no—so I understand your quality views! Ps Breastcancer.org is a great site for any stage cancer and they even have one for Ibrance and I think all other meds too! Good luck prayers to all

Rbeth profile image
Rbeth

I wrote a process I use for a no pain injection. It’s on this site. Good luck

Stinkinpinktink profile image
Stinkinpinktink in reply toRbeth

I’d like to read that, as I’ll be starting the faslodex shots. Where can I find it?

Rbeth profile image
Rbeth

I am getting my shot tomorrow too. Been getting them since August 2018. Reenie

Hi Claire, I hope you're doing well! I found that the Faslo/Ibrance combo was MUCH easier than the Letrezole/ Ibrance combo. Easy pie. I hope you find it to be the same...

Mammyhen profile image
Mammyhen in reply to

I'm glad to read this! The letrozole is giving me horrible leg pain! I start Faslodex the 7th of August. I've been on Ibrance since last September.

But, yes, those shots can hurt a bit, but it goes away pretty quickly. Also once they hit a blood vessel and the blood ruined a new pair of linen slacks, nbd though... :)

Terilyn12 profile image
Terilyn12

I was on Ibrance and Letrozole for a year and Letrozole stopped working. Switched to Faslodex - I love it !!!! My joint pain went away within a week of stopping Letrozole AND my tumor markers finally are dropping and dropping a lot !!! The shots are not that bad - I was so anxious but you can do it!!

Rbeth profile image
Rbeth in reply toTerilyn12

I was on Ibrance and faslodex for 5 months and the faslodex stopped working and I am now on Ibrance and letrozole and my numbers are stable. It’s great we have choices. Good luck with the change. Reenie

Sebina profile image
Sebina in reply toRbeth

Hi Reenie,

How did your dr know which med stop working faslodex or ibrance!

I was on Verzenio and faslodex and when pet/cat scan showed progression, my oncologist changed the treatment!

Sebina 💕

Rbeth profile image
Rbeth in reply toSebina

My oncologist made the decision. I also saw an oncologist at Sloan Kettering in NYC. He was consulted. I live in Rochester NY. Sloan consults worldwide if you are interested. Thanks Reenie

Sebina profile image
Sebina in reply toRbeth

Thank you Reenie!

Antares12 profile image
Antares12

I've had two injections of faslodex so far with no real issues with the injections or pain afterward.

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