So afraid I won’t be able to take the faslodex injections anymore. Bad rash ! What then 😢

[Ycats277]

Has anyone had to stop due to site rash , what do you go on instead . I’m so scared I’m just gonna die now from the cancer if I can’t take the Faslodex. Crying all the time. I don’t think it is shingles, I think it’s a hives rash . Going tomorrow as an emergency 🆘 to oncologist at 1 pm . Help

[Hidden]

Oh, gosh, Ycats277! I'm so sorry to hear about your distress!

I think it is possible to be allergic to Faslodex....which I imagine can sometimes cause a serious reaction? If I were you, I'd pop a Benadryl or similar just to nip anything at the bud? Then of course phone your doc when you can....

I'm not familiar with your treatment history but there are numerous non-IV alternatives to Faslodex, assuming you haven't already done them....Not that this helps entirely...None of us wants to give up on a treatment...

I'm sorry for what you're going through...Take care!

Lynn

[Ycats277 in reply to Hidden]

Thanks so much for your care and kindness . I will update tomorrow 🌹

[kokopelli2017]

hi Ycats277. i can feel your anxiety....you have my empathy for sure! please take a deep breath. you are not sure yet that you can't take the faslodex anymore. it could very well still be on the table. like Lynn already mentioned, perhaps you can take it with an anti-allergy med? wait to see what your onc says tomorrow....that's great that you got in 'stat". i will be thinking of you tomorrow and wanting to read your post.. after you see your oncologist! and after you really know your plan going forward! please don't assume the worst. wait for answers until tomorrow. i know....easier said than done. BIG HUG.

carole xo

[Ycats277 in reply to kokopelli2017]

Wow , thanks you really made me feel some hope . Thanks , You are right maybe he will give me an allergy medication along with the shots. That would be great I did not think of that. Thanks again and yes I will post tomorrow thank you for caring

[kokopelli2017]

fingers crossed😘

[Ycats277 in reply to kokopelli2017]

Ty

[Discocat]

Hi, so sorry your stressed out. I’m sure there are alternatives. I changed from Kisqali to Ibrance after only 3 months and was freaked that I was going through options too quickly…but my oncologist reassured me that there were many variations and combinations to try.I know that there are three types of targeted therapy drugs….Kisqali,Ibrance and yours Verzenio. Each has slightly different hormone regulating treatments that you can also be prescribed along side. When I switched my estrogen blocker stayed the same, but mine is oral, it’s called Femara. I’m not qualified in anyway to recommend that you switch meds but may be you can bring it up with your Doctor? Good luck. I hope you sort things out and feel better.

Love Zoe x

[Ycats277 in reply to Discocat]

Ty so much 🌹

[Ycats277 in reply to Discocat]

Thank Zoe , I will update after doctor , you have a lot of wonderful advice ty 🌹

[8576]

So sorry that you are so stressed. It isn't enough to have Cancer. Anyhow, you are right to have called your oncologist and take a deep breath. You will find there are many answers before you die of Cancer.

Cheers, June S.

[Ycats277 in reply to 8576]

Thank june 🌹

[Cureforever]

Hi Stacy,I am sorry for your situation. I hope you will feel better soon. Your doctor may give you a Benadryl with it to prevent an allergic reaction. Also Faslodex is not the only medication that can be paired with Verzanio. I also heard that some oral med like Faslodex is coming out this year. Ask your oncologist about it. I heard that it’s even better than Faslodex. Verzanio can be paired with many meds and I believe that it’s Verzanio that keeps your cancer in remission.

Feel better and keep us posted.

[Ycats277 in reply to Cureforever]

Marina thank you , I’m just so scared because I just became NED aka remission. He used the word remission for the first time 3 weeks ago and then this . Crying all the time . I don’t do well with change . It scares me to a panic . I take pills for that everyday. Not working this last week .

[Cureforever in reply to Ycats277]

I cry all the time because of anxiety and also because the last pet ct showed something in my kidney. I got another ct and today I am going to find out the results. It helps when I read that people live with this horrible disease for many years. I hope that ErSo or another long term treatment will come out soon and this disease will not be incurable anymore. We have to fight until it happens. You do not know what your oncologist will say. I understand your anxiety. I also have it today more than usual because I am going to the doctor to hear the results of pet ct. I hope we both will be fine. Best

[mariootsi in reply to Cureforever]

Sending positive vibes and hugs for good results! The anxiety is horrible isn't it! I get it!

[Cureforever in reply to mariootsi]

Hi Mariootsi,Thank you so much for nice words and wishes. I am shaking.

Best

[mariootsi in reply to Cureforever]

I know. It's so stressful. Try to breathe.

[Cureforever in reply to mariootsi]

Thank you so much💕🤞🙏😍

[Ycats277 in reply to Cureforever]

How did things go today ? If it’s too personal disregard my question. I don’t see you posting , I’m worried 😟 are you ok ? 🌹

[Cureforever in reply to Ycats277]

Hi Stacy. Thank you so much for asking. I am semi Ok. Have to follow up with the urologist and gynecologist. My pet ct and ct urogram showed problems that I need to address. How was your visit to oncologist.? What was the solution? I was so nervous today that I felt very tired after. I will talk to you tomorrow. I hope your doctor came up with some solution. Best,

Marina

[Ycats277 in reply to Cureforever]

Ok tomorrow we will chat . I’m tired 😴 yes I am under control, I sure wish you are . Sweet dreams . Stacy

[Ycats277 in reply to Cureforever]

Marina , I did not know you were waiting for results today . I’m feeling a good one today for you 🙏🤞👍🏼🌹. It’s so reassuring to have THIS group and all the support I have had HERE for going on 5 years since I spread to bones. Waiting to here and I will also post my results . I will be thinking of you . 🌹👍🏼 .

[Cureforever in reply to Ycats277]

Thank you so much Stacy for nice words and encouragement. I believe your issue with the Faslodex will be resolved as well. People write about generic. I always was getting brand when I was on it. You may question that. It happens. Also you may have developed rash from something they used when they covered the sites of injections. I recently had a pacemaker and developed rash on that site.Best

[Ycats277 in reply to Cureforever]

I am now 7 years , 5 metastatic and just told remission (NED)and so will you . It takes time for the meds to work, I’m on my first line of therapy now going on five years. First time ever in five years NED, remission . Now this infection, this scary bump in the road . We will be fine , I’m just feeling it 🌹🌹

[Cureforever in reply to Ycats277]

Thank you StacyUnfortunately I am on my fifth line of medication over 2.5 years of mbc. You might be right. Your rash might be due to infection not an allergy. Usually if you are allergic to medication it happens right away or in some short period of time. I was allergic to Piqray. I developed rash in 10 days of accumulation of this drug.

Let me know

Good luck

[Ycats277 in reply to Cureforever]

It started Exactly 2 weeks after I got my Faslodex injections. Today is three weeks ago and this last week is when I’ve had the rash. And it starts on both sides for my injection wiser now surround my entire back to the hip on both sides. I’m on Verzenio 100 mg twice a day, two injections of Faslodex every month, while every four weeks along with an injection in my arm Xgeva. I Take lorazepam now for seven years twice a day since I was diagnosed with breast cancer and never stopped. That’s all I take when are you getting your results? I’m surprised you’re not on the phone already with them.

[Cureforever in reply to Ycats277]

Keep me posted. What pills do you take?

[mariootsi]

Good luck with your appointment. I hope the onc can alleviate your fears.

[Ycats277 in reply to mariootsi]

Thanks so much , you were the first person I met on here 5 years ago ? We are still here . How are you doing and feeling 🌹

[mariootsi in reply to Ycats277]

We are still here! I'm ok. Trying to stay positive and just do the best I can.

[Ycats277 in reply to mariootsi]

Thanks 🙏, I’m here now waiting to see doc .

[mariootsi in reply to Ycats277]

Sending prayers!

[Likes]

HiI have been on faslodex for two years and my scans are good. Lung right is clear due to faslodex!

I would try Claritin after you ask your dr of course and try it for at least a week. I also take gabapentin 100 mg at night for the other side effects. That is a very very low dose. When I began the faslodex it was exhausting but I got used to it after a month or so. They have a generic faslodex and the brand faslodex. Idk if they would be willing to try that switch . $$ insurance, etc. some oncology offices will do that .

Pray 🙏 it will be ok. Hugs, Susie

[Ycats277 in reply to Likes]

Thanks , I am going to fight for the astra zeneka faslodex

[Kcap430]

Sending you nothing but good vibes and the hope of good news from your doctor. Thankfully there are so many more options for us than years past. Praying it is as simple as you taking an allergy med with your treatment. Please keep us posted!

[LadyKatarina]

Hello--I have not been following your posts to know if you have a rash every time you get the injections, or if this started along the way. I was on fulvestrant (Faslodex) injections for two years--they were fine at first when they were using the brand name of Faslodex which is made by AstraZeneca. Then all the generics came out--and my clinic's purchasing dep't. would buy whatever. They kept switching around. Some of us had a bad reaction to one generic brand, Mylan I think it was. I got red spots at injection site. I ended up talking to the cancer center pharmacists, and they were able to order a brand that I had tolerated. There are also some generics that are adding preservatives--if the syringes of the fulvestrant are stored at room temp--and not in the cold--then you know. I got ill when they gave me one with preservatives--even the nurses at the center knew that some people don't tolerate preservatives. So try asking--maybe there is a problem with the generic brand they are giving you. And all oncologists don't believe this can happen--but those of us getting the injections know it can. Best to you!

[Ycats277 in reply to LadyKatarina]

OMG I have been fighting with them about this now for three years. I started on faslodex the real one the refrigerated one that used to walk with them under their arm to warm them . Then things changed and I have been getting generic and warm shots and having bad issues ever since . Thank you for confirming my suspicions all along I have brought this up to them many times now I’m gonna go in and fight today big-time thank you so much for this text. I will update later xx

[LadyKatarina in reply to Ycats277]

Best to you today! Advocate for yourself! I got the names of the brands that they had injected from the pharmacist--and made an Excel chart correlating my symptoms vs the injected brand. I hope they will work with you. The newer generics came out in May of 2019. One o f the first was Sandoz, which was pretty good. But now Sandoz has changed their formula and they too add preservatives. It is a rough world to navigate!

[Ycats277 in reply to LadyKatarina]

Thanks I’m here now very helpful xx

[WhippetX2]

I’m on a different line of medication but I could feel the anxiety in your post. We MBCrs understand completely. The only thing I can offer is when I was first diagnosed my ONC said “don’t worry, there are many, many meds to try” and more being developed all the time “. In your situation it might just take a simple tweak. Be sure to get LOTS of water. I’m on Ibrance but I get rashes if I don’t get my 64ozs down. Let us know how it goes. Hugs, Sandy

[Ycats277]

UPDATE ITS NOTHING , no shingles, just a reaction because I’m allergic to preservatives , the generic faslodex, the warm injections That don’t need refrigeration is filled with preservatives .

[WhippetX2 in reply to Ycats277]

I'm so, so very happy for you. Whew, you can take a deep breath now. Hugs

[Discocat]

Phew!!! Glad you got it sorted out !! Hope the rash clears quickly and you can continue with your meds. On a positive note, your obviously responding really well to the treatments internally….to be down to NED status.

Best wishes, stay positive and relax - I know it’s hard to do but it’s better for us.

Love Zoe xx