Faslodex

[Puppy_love]

Had a horrible reaction this past Monday after my injections. I’ve been having this treatment for 3 years and I had so much pain during the second injection. When I left I felt horrible. BP dropped to 78/56. I almost hit the deck. I experienced nausea, weakness, sweating and coworkers called 911 and off to the ER. I’m home this week from work and of course my boss is not happy. Not quite sure what happened. Has this ever happened to anyone. Maybe its a wake up call to quit my job. I don’t think stress can help a patient with Mets.

[Ycats277]

I have been having trouble too. This is Stacy . I found out that I was getting a generic recently filled with preservatives that stops it from having to be refrigerated. Also the syringes for the generics are different as well. I’ve been getting the faslodex injections for four years now and the first 2 1/2 I was OK yes they hurt but not where I was in tears. Recently the shots are so painful that I believe that the syringe needle on the generic is different. I have a lot of pain it makes me cringe and shiver I feel it through my whole body. If this helps I hope it does. All last week I had a horrible break out which I thought was shingles from the shots or I go to find out that it wasn’t shingles and it was just a really bad reaction like oncologist said .

[Puppy_love in reply to Ycats277]

Oh wow this was the first time I had this also it’s not refrigerated. It was the most horrible experience and I have such bad lower back pain on the side of the injection. Thank you for reassuring me that I’m not going crazy. I’m out of work the whole week from this. It really knocked me off my feet.

[Corrina97 in reply to Puppy_love]

I'm hoping they can go back to giving you the refrigerated version. Sounds awful what you went through. Hoping the don't start giving me the unrefridgerated one. Hope you get the refrigerated one next time after getting so ill. Good luck x

[Puppy_love in reply to Corrina97]

I’mWorking out it and I’m going to report it to the FDA. Cheap doesn’t mean it’s better for the patient.

[Corrina97 in reply to Puppy_love]

Exactly🥰Good your reporting it x

[DDIL1]

If your boss was upset because of this and not concerned about their staff .. I say go on SSDI. I supervise 11 staff and their welfare and their families is important to me. There is nothing more important, I also know they appreciate that and as an effect go over and above.

[Puppy_love in reply to DDIL1]

I work 40 hours a week and not always do I feel good but it’s never enough because if I’m not there it affects her. I feel guilty about it and I don’t know what else to do. SSDI refused me because I was still working and was told that there are people working with no arms which I felt was not ok to say.

[DDIL1 in reply to Puppy_love]

I was told that that if you’re MBC they process you within 3 weeks. I do think you may need to quit. Are you in the states? I met someone who’s husband works at SS and she has lots of info. On how to do it.

[Puppy_love in reply to DDIL1]

I live in Florida and I spoke to a lawyer yesterday saying I have to be out of work totally before they will process anything. I feel trapped and not know what to do.

[DDIL1 in reply to Puppy_love]

Do you have any vacation time to pull from while they get your request processed, or short term disability? Did you sign up on the social security website to see how much you will get on SSDI? With MBC we need to take care of ourselves first. If you stay Will they allow you to work remote?

[Puppy_love in reply to DDIL1]

I have STD yes and my primary doctor told me she would do whatever I need. She told me that the work stress is not good for my cancer.

[DDIL1 in reply to Puppy_love]

No stress is not. Maybe look into that until SSDI kicks in.

[Hidden in reply to Puppy_love]

Wow, what a catch-22!!

I just want to encourage you - and others - *not* to engage an attorney who will take a portion of the proceeds....When I was researching similar they were crawling out of the woodwork!!

As noted by others, SSDI is pretty much a given *and* fast tracked for metastatic but, you heard right, you have to *not* work due to disability (fatigue, pain, low blood counts, etc.) for some period of time....6 months?....before you qualify.

It sounds like you have Short Term Disability/medical leave at your company...great! Do you happen to also have Long Term disability? You can collect *both* LTD and SSDI, sort of/in effect, but if your LTD benefit is larger than the SSDI benefit, the LTD will just deduct what you get from SSDI. So, in the end, you get the amount of the LTD calculation (60% of pay or whatever...)...again, *if* it's larger than SSDI.

So **I think** (not gospel, but this is what I did...) what you do is go out on STD to carry you over to SSDI. If you also have LTD, you put in a claim against that, too, when STD is running out. Your docs do need to understand that this is what you want. I've found them to be nothing but supportive, but they do need to fill out forms and check a box that says that you cannot work. My doc notes the fatigue, pain, etc.. What they don't note, but it is huge, is that my brain no longer works so I'm pretty useless to any employer anyway!

Good luck with it, please do let us know if you have any questions....

Ugh, "social safety net"!!

[kearnan in reply to Puppy_love]

Plus, you do not get paid for the first five months. I have no idea why but even if you are automatically approved bc of stage iv, you will not see any money until the sixth month (SSDI pays for the prior month).

[kearnan in reply to DDIL1]

You do not get paid for the first five months. Stage iv is automatic approval but you need to have enough money for those first unpaid five months and you do not really get your money until the sixth month. They will go by the date you stopped working, not your diagnosis date, if you continued to work.

[Puppy_love in reply to DDIL1]

Wish you were my boss

[Hidden]

Hi Puppy_love -

I responded to the topic of SSDI below but wanted to loop back to your primary post re: reaction to the Faslo.

I def have PTSD from numerous very severe allergic reactions when I was young...so I might be overly sensitive....but this sounds like it could be an anaphylactic reaction, i.e. going into shock, e.g. with the very low blood pressure? If this is the case, obviously do. not. mess with it. I.e. take it very seriously ( I did not, in my 20's, still can't believe I survived all of the self-inflicted death by shellfish possibilities!).

BUT, is it also possible that it was...not sure of the right word....an...emotional?...neurological reaction to the needle? I used to have this, too....I would faint after any needle. Does/did that also involve a low blood pressure? I don't know. But *both* felt very similar...and similar to what you describe....Did you have hives or throat/breathing issues? If not, it's probably not an allergy, but not definitely...

I would definitely look into it further but I would also encourage you to push back to your satisfaction re a potential allergy....that would necessitate changing treatment, which clearly you would not want to do without being *certain*....

Take care, carry Benadryl/epipen just in case!

[Debbigbang]

Wow... only thing I heard was your boss wasn't happy !! Talk about empathy. You have cancer, exactly what does this person expect..because we don't know how our treatments will go.

Sounds like you had some sort of reaction. Weird if you have been taking it for awhile? I have heard some people get reaction from the oil. That would be a chat with your onocologyst?

As for work..I struggle with it. It's like my life is way more important than the daily grind. I work in collections and used to like it, now I don't see the meaning. If I have to work, I would rather it be doing something that has meaning or helping somebody. I have to work I am 59 yrs no pension, no life partner, life just worked out that way.

Hang in there. I always say through it out to the universe see if an answer manifests.

Deb ❤🙏

[Puppy_love in reply to Debbigbang]

Ha I never wanted to be 65 so fast. I’m so over my job and most of my stress is from people there and the job and of course my lovely boss. I have a year and 3 months left and not sure I’ll make it. Cheers to us!

[Debbigbang in reply to Puppy_love]

I hear ya !!! Are you Canadian? If Canadian get on sick benefits then switch to long term disability from your work insurance?? That is my plan..I have 6 yrs if I can make it to 65 lol.

Bad enough we get the 1 out 8, breast cancer, but then the 1 out of 3 to get mbc. I want the lotto odds to go in my favor retire on my winnings LOL 🤣🤣.

[Puppy_love in reply to Debbigbang]

Yes indeed I play the lotto all the time. I live in Florida the land of misfits

[Debbigbang in reply to Puppy_love]

Working in AR and collections is like working in a day care. Except in a day care you can teach the kids not to engage in bad behavior. Well with adults, that ship has sailed 🤣🤦‍♀️

[Puppy_love in reply to Debbigbang]

I work as a Supervisor in a Breast center and I’m being undermined by employees who think they know everything and a boss who’s heartless and is all about herself.

[Debbigbang in reply to Puppy_love]

Now that is interesting. Considering you have mbc, you know enough. I often wonder why we end up in those places? Is it a lesson we need to learn? If so I don't know what it would be. Raise up from it sister, you have more power than you know. Keep your positive light and put their negative energy in a box. Their negative energy can't penetrate you if you don't let it.

I once knew this lady, most positive loving soul I had ever met. It was like she had a tin can around her. Nasty environment everywhere, yet she was the most positive person. She always said, she learn to not let the negativity penetrate her positivity. I do not know how she did it, I work at, but must be missing the trick.

Stay strong, and remember it is only a job that pays the bills.. it isn't who you are !!!

[mariootsi]

I agree! Stress is our enemy!

[Puppy_love in reply to mariootsi]

I am starting my meditation again. It helped before so let’s see

[LadyKatarina]

I have also had problems with the Fulvestrant/Faslodex injections. My former clinic used to purchase whatever generic brand. Since the patent ran out for Faslodex by AstraZeneca in 2019, most clinics purchase the generics. Ask them what brand of generic they are using, and what brand was used for past injections you have gotten. Most clinics do not record this information on your chart, but the pharmacists will have a record. That way you will know--and I am sure your oncologist will be wanting to know too. If you have tolerated the injections in the past, that way you can sort out when they switched, and which you did tolerate. That is what I did. You might be able to tolerate the brand name again--which is Faslodex made by AstraZeneca. Sounds like you had a very severe reaction. I also got sick from one brand with preservatives (Fresenius, I think)--but also got red spots from another brand (Mylan.) Fresenius advertised that theirs was the only brand that can be stored at room temp, so now I think there are more companies adding preservatives. It is so sad that we can't get quality medicines. The very best to you! Kay

[Puppy_love in reply to LadyKatarina]

I also got Fresenius and never in my life have I been so sick. I’mLiterally still home from work all week and the pain is so bad on my left side it goes into my back.

[LadyKatarina in reply to Puppy_love]

Oh, I am so sorry to hear this! And angry--for you and all of us! Please make sure you report this to the FDA and everyone at your clinic. They have to stop giving us these toxic drugs! I hope you recover soon. Let us know how you are doing. I have had something similar--the lower back pain. It all somehow gets transferred in the body to other close locations. Bizarre. Keeping you in my thoughts! Kay

[Puppy_love in reply to LadyKatarina]

Thank you 🙏 I reported it to the pharmacy and the FDA and this is the first time I got this Fresenius and hopefully never again.