I’m Allergic to the Preservatives in the generic faslodex and I can’t get approved for a Faslodex by Astra Zeneca. What then? 😭😭😭😭scared

[Ycats277]

Does anyone have this problem ? What advice , I can’t see straight with all the phone calls I have made and got nowhere . I have Florida blue . They turned me down for a medically necessary drug to keep me alive , the picture below is now , the injection was 5 weeks ago Tuesday . They were all welts that hurt 😢

[AutumnLove]

How can this be allowed? Blows me away!😔😥

[Bettybuckets]

Seems like a good enough reason to ask for compassionate use of the new oral serds which may be allowed in your circumstances. I always tell my kids that you don’t get what you don’t ask for. Good luck!

[Ycats277 in reply to Bettybuckets]

My cancer spread to stage 4 on oral serds

[Bettybuckets in reply to Ycats277]

I am so sorry. I just started Verzenio 2 days ago after failing Ibrance and now I have a painful rash. Hoping that this will settle and not lead me to go quickly to 3 line.

[Ycats277 in reply to Bettybuckets]

Wow , did you try taking Claritin with it , when I started it I had some issues and Remember that I took Claritin for like six months and I do take Claritin still sometimes I go off for a few months. And I’ve been OK ever cents. The combination of Verzenio faslodex injections and the Zometa infusion, and just Recently they switched me to Xgeva instead of the Zometa. Xx

[Bettybuckets in reply to Ycats277]

Did you have NED or was that someone who replied to you? I really would like to hear some success stories onVerzenio…was that you? Did you have Ibrance then verzenio and then reach NED?

[Ycats277 in reply to Bettybuckets]

Hi it’s Stacy , In 2017 I was diagnosed with metastatic breast cancer and began Verzenio and faslodex and zometa. I was switched to Xgeva just recently. I’ve been on Versenio going on five years and I reached remission, he called it remission, I corrected him and said (NED) He said the last two PET scans before this one we’re NED, I get them every six months so for a year and a half I’ve been no evidence of disease so he’s calling it remission. That’s what I know. Now I’m having a reaction to the fulvestrant injections. I was on the brand faslodex and never had a problem than the last few times they switched me to a generic and I’ve been having a reaction. I’m fighting to get back on faslodex and I’m getting turned down. That’s my problem and that’s my fear, what happens now I was slightly turned down for Faslodex. He will not give me a medication that caused The reaction, their office and him the doctor himself are trying so hard to get me approved. I’m now two weeks late and scared.

[Bettybuckets in reply to Ycats277]

Oops read down below as I have 2 faslodex and happy to help. By mistake wrote to just me!

[Justme153 in reply to Bettybuckets]

Hi Betty buckets I tried to respond to your post but for some reason it wouldn't let me. But it lets me here so ill respond here and hope you get it. Since you say estrogen could still be responsible I wanted to ask did you have an ompharectomy (not sure of spelling) . My gynecologist pushed for me to have one cause of all sorts of statistics on recurrence of cancer . I dont remember all the details he rattled off but he really felt it was a good idea with estrogen positive cancer. So if you haven't maybe ask if you could and then see if this straightens out your issues! Even if you are past menopause your ovaries and utterous still produce estrogen. So does your adrenal glands and fat cells etc.

[Bettybuckets in reply to Justme153]

Hi Just me- I had BCa 16 years ago when my kids where small and I really wanted to get the ovaries out. But the surgeon I went to said she didn’t want to because of the risk of Parkinson’s. I wish I did because then my cancer returns to my bones with MBC.

[Justme153 in reply to Bettybuckets]

Can you ask to have a full hysterectomy now ?

[Ycats277 in reply to Justme153]

I had a full hysterectomy and they left me one ovary when I was 40 , 20 years ago.

[Justme153 in reply to Ycats277]

Sorry Ycats that comment was for Betty buckets for some reason one of her posts that I wanted to respond to wouldn't let me respond. But when I saw her respond to your post I clicked on it and it let me respond. CRAZY!!! I txt my problem to the site head I think it might be straightened out. I hope !!!!

[Ycats277 in reply to Justme153]

No worries 😉 we are all together as one . Post away on my stuff it’s fine

[Ycats277 in reply to Bettybuckets]

I am going to ask thanks

[wendle3007]

Hello. Sorry to read this news. I'm in the UK and so don't have any experience of dealing with medical insurers. However, I've seen on other threads, regarding other drugs, that it is sometimes possible to get help from the manufacturer themselves so is it possible for your oncologist to contact AZ and ask if they can help either with a discount which your insurers are happy with or even for free!

[Ycats277 in reply to wendle3007]

Thank you, I did not do that I did everything if I did not even think of that. I’m gonna contact them you are correct and thank you very much. My brain is just blank xx

[Justme153]

Since you live in Florida I would contact Governor DeSantis office ask if the governor could help. His wife has been diagnosed with breast Cancer so he may be more sympathetic now then others. Can't hurt to try!!!!

[Ycats277 in reply to Justme153]

No , never 👎🏻

[K_I_T]

Hi, I have had a similar problem with raised, hot, bruising from faslodex, just like your picture. It also causes a lot of itching in the area of the injections. In desperation I started taking Loratidine for the itching, but the "bruising" and reasonably intense pain (especially if accidentally touched) from the injections lasts for two+ weeks , then remains tender for the rest of the time before the next set of injections. The oncologist does not accept my concern that I have a reaction to the faslodex or its "excipients" (fillers/preservatives). I have had a bit of a break from it and the itching has finally pretty much gone. I am supposed to be going back on it, but cannot ask for a particular brand (I am NHS), as I am also concerned about developing a cough (and what I can only describe as excess saliva/secretions which leaves me coughing until I almost vomit, if I lie on my right side) again. Oncologist refuses to accept it is an adverse reaction and I must accept there are potential side effects to any treatments! I have had Dr Reddys (itching, pain, swelling, slight cough) and Zentiva (cough was worse).

[Ycats277 in reply to K_I_T]

Wow , My oncologist is very sympathetic and going out of his way to try to find a brand that doesn’t bother me. He even called my insurance company himself. Maybe you should think about that. Your oncologist should be on your side and believe your symptoms and help you so that you can live the most comfortable that you can on these aweful meds we have to take . Xx 😘

[K_I_T in reply to Ycats277]

My oncologist says they are all the same! Have you tried different brands or just the one type? Either it was cumulative effect after 6 months, or it was the different brand that increased the cough situation for me in the last two months when the brand changed. xx

[Ycats277 in reply to K_I_T]

I would never say anything about anybody else’s Dr, but I will tell you that my doctor knows and told me they are not all the same. The reason for my bad reaction is because when I was taking faslodex by Astra Zeneca it was a refrigerated injection without preservatives. Now within the last two years while these generics came out that don’t have to be refrigerated and the year filled with preservatives. It’s the preservatives that I am allergic to. Because the insurance companies don’t care really and don’t understand because the generics are cheaper they will only approve the generics I can’t get the Faslodex I Astra Zeneca approved because it’s more expensive than the generic. This is a big problem. They’re fighting for me to get the faslodex by Astra Zanaka

[K_I_T in reply to Ycats277]

Thank you for your response. That is very interesting. Are you able to share the Astrazenica injection contents with me please? If I have some evidence to show the oncologist she might pay attention! I was just told faslodex injections are kept in the fridge and have to be warmed slightly before being given. One set of injections were given cold I think and caused a great deal of pain. xx

[LadyKatarina in reply to K_I_T]

I have found the ingredients of all the fulvestrant products on-line. Try searching!

[LadyKatarina]

When I had problems with the fulvestrant injections, I found that the clinic kept switching brands--whatever the purchasing dept. ordered is what they used. I was able to talk to the clinic's head pharmacist and made an excel sheet of the various brands I had been given. Even some that don't use preservatives caused problems. I found one generic that I had tolerated, and they were able to order that one for me. (Back then it was by Sandoz--but I think that recently they too have added preservatives to their mix.) Maybe you want to check and see if they really were using the Faslodex by AstraZeneca--or were there others before they switched to the ones with preservatives? The Faslodex patent ran out around May of 2019, and then oodles of generics flooded the market. Most clinics were not using the actual Faslodex brand name after that date. Also--I was able to find on-line info as to the ingredients of all the generics. Best to you. Kay

[Ycats277 in reply to LadyKatarina]

So I would love the list how did you find the ingredients and all the generics? And did you find any other generic that is refrigerated but doesn’t have the preservatives? What is your favorite one now. Can you share it with me please thank you XX

[LadyKatarina in reply to Ycats277]

Sorry, I have been off fulvestrant since January of 2021. I just googled for the list of fulvestrant products and found the info. At that time (2020?) Sandoz was refrigerated and had no preservatives and I tolerated it the best. However from what I have read in the MBC groups they may have added preservatives now. Check their site. Mabye they make both--with and without preservatives? Adding preservatives is only a selling point for the clinics--since they don't have to refrigerate. And bad for the patients--as always--we sell to the clinic and not the end user. I had been given Mylan--bad red spots; and Fresenius--reaction to the preservatives. I got Sandoz for almost two years. I owudl alwasy get the package insert or the box so I knew what I was getting. It really makes a difference! Keep advocating for yourself! Best to you!

[PJBinMI]

I am allergic to the bisphosphonates, had only bone mets when diagnosed in 2004 but was able to tolerate a half dose of Zometa (bisphosphonate) which is given by IV, by arriving "well hydrated," and getting IV benedryl and hydrocortisone before the Zometa, plus longer infusion time. You might ask your onc if it would be worth trying IV Zometa and hydrocortisone before you get the Faslodex injection. If I understand your situation, your body is reacting to the fillers in the Faslodex and you want to find a way to continue on the drug without the reaction. So it seems as though the options are to receive Faslodex without the fillers, or to find a way to prevent the allergic reaction. Since you and your onc haven't been able to get the "pure" Faslodex, maybe searching for ways to stop/prevent the allergic reaction. Unfortunately I have a lifelong history of allergies. A few years ago I had a scary reaction to something, took two OTC Benadryl, and my husband drove me to the ER which is a short drive from home. They saw me immediately there and gave me two more oral Benadryl tablets so now I think I could take up to four of them at a time if I had an allergic reaction severe enough to make me think of the ER. Maybe you and your onc could try a large dose of Benadryl, even given by IV alone or with cortisone. These insurance issues really are crazy! And dealing with Medicare has gotten alot harder in the years I've been on it, with fewer employees. I have to have the non-generic version of a common Rx I've been on for decades and getting that appproved took time and the co-pay is alot more than the generic would be, but only $25 a month, and not like what the cost for Fslodex might me. I hope you are able to find ways to continue on Faslodex--alot of us do well for long periods of time. I got over 9 years from it. Sending cyberhugs, red tape cutters and prayers. Pam

[Ycats277 in reply to PJBinMI]

Hi it’s Stacy , thanks Pam I will mention all of this to the doc . You are filled with wonderful idea and information , ty

[PJBinMI]

Thanks for the compliment! I've kept my eyes, ears and brain open during my 18 year adventure living with this blasted cancer! Learning and sharing helps me feel more in control, LOL! My sense of humor helps alot, too. It sounds as though you have a great relationship with your onc, and that is one of the best things we can have!

[Ycats277 in reply to PJBinMI]

Thank Pat , Stacy Xxoo

[Ycats277 in reply to PJBinMI]

Pam not Pat ,

[Ycats277 in reply to PJBinMI]

So sorry to keep bothering you but when I look at the package what am I looking for and what is a no no . Am I reading ingredients? What don’t I want . I feel so dumb . I understand everything you’re saying I just don’t know what it should say and what it should not say . Please , You have gotten me the furthest so far in my research and I appreciate everything that you were sharing with me. Maybe I’ll become an expert like you, never but may be almost🌹

[queeneee]

I had a reaction to faslodex injections, after 3 months I said I wanted to stop because of side effects... this keeps it on my list to possibly go back to.. I moved onto other meds and found them much better.. Pretty much every appt I as the oncologist about oral serd trails, or if they have been approved for general use yet.

[Ycats277 in reply to queeneee]

My cancer spread on oral seed anastrozole