fulvestrant

[Oberammergaux2]

Just an FYI.

I received first doses of Fulvestrant. Walking out of the chemo pod my right knee buckled…odd, I felt that I must have overdone working outdoors earlier that day. Flu-like symptoms that evening and within 24 hours I was unable to walk without assistance. My legs simply would not move. I contacted my oncologist, called my pharmacist to no avail. I called the pharmaceutical company that manufactures the drug. They are aware of this reaction, drug induced myopathy, a “severe” reaction listed as tingling, numbness or weakness in legs. So please be aware. Symptoms have resolved except for leg muscle pain. This drug has a 40-50 day half-life to excretion so there’s that to consider. Hopefully, I’m the only mouse in the lab that fell over but any knowledge can be helpful so just putting it out there. Keep on moving on my friends! 👍💕

[13plus]

Wow I have never heard of this reaction before regarding Faslodex. I guess I was lucky taking it for 3 years without issues. That must have been scary. I'm so glad to hear you got your movement back, and hope the pain subsides well with some time. Does that mean you can't take Faslodex now?

[Oberammergaux2 in reply to 13plus]

Thank you for your reply. Absolutely no more of that drug! Second dose could be much worse.

[Warrior77]

I was on Fulvestrant for 3 months and developed sciatica on my right side. Nothing on the left. Walking was agonizing but I could ride my spin bike without a problem. The circular motion seemed to help. The Fulvestrant and the drug it was paired with (Truqap - also a disaster) didn’t work and I had increased progression so I asked to go off the Fulvestrant and go back to anastrozole. The sciatica cleared up after 3-4 weeks. Sciatica is a side effect of Fulvestrant and it’s a doozy!

[Oberammergaux2 in reply to Warrior77]

Goodness….its difficult to manage these meds. Side effects don’t seem to be communicated to MDs (mine had no clue) by pharma and they can be devastating. With a 40-50 day half life to elimination of the drug, that’s an awfully long time…once it’s injected it’s on board for a long time. I’m going back on Afinitor and exemestane, it kept my disease down to 2 small liver mets in 16 years, successfully treated with gamma knife radiation. Taken off Afinitor and exemestane for 9 months and developed two new liver tumors….again treated with gamma. So I put my big girl pants on and demanded to go back on original meds. These new and improved meds seem to have debilitating side effects and people seem to be changing them out frequently, it’s rather frightening.

Hope you are walking up a storm now without pain! Best of luck to you!

[Warrior77 in reply to Oberammergaux2]

I absolutely am! ❤️

[Praising in reply to Warrior77]

What else are you on with anastrozle?

[Warrior77 in reply to Praising]

Enhertu. Three treatments so far. Scans at the end of this month. Fingers crossed for this one. I need a win,

[Dragonfly2]

fulvestrant is a problematic drug. I also feel that the delivery of the drug into an area with lots of nerves and large joints is touchy. I have developed a numb area in my right hip…blamed it on an injection that hit a nerve. Recent injections are now higher on the hip. Such a conundrum to use drugs that hurt with the intention to blunt this cancer. I’m so sorry about your experience. Please communicate with your oncologist about this issue and ask for some changes…maybe another person to inject..technique matters. Make sure you walk or move after the injection to make the muscles disperse the drug. Warm compresses as needed would help. Best wishes !🙏🙏

[Oberammergaux2 in reply to Dragonfly2]

Thank you for your good thoughts! No more Fulvestrant for me…..a second reaction would be worse. I agree completely with administration technique. Please be careful of any numbness! Hugs to you

[muzzatron in reply to Oberammergaux2]

Don’t be too hasty. My partners first injection was a shocker, pain in area. . In your case it may be that you had an allergic reaction and if that’s the case discuss with doc, and as you say it’s all over with .

The second was much better.

We left that Oncologist practice. She said could go to a Public Hospital if we had problems with it.

Just because they have the title leading Oncologist doesn’t mean they are professional.

New Oncologist , team player, admits knowledge gaps and networks with his colleagues in public system.

Here we have public free Medicare but some work privately, fee for service.

Best of both worlds.

We now get injection in a public hospital setting as they are the most experienced. There is a correct technique, z pattern ?

Also load up on analgesic, the injection should be kept cold then body ? temperature and ideally avoid the sciatic nerve. 😲

Then cold packs and warmth after a few days. Sequence is contested but ice packs have been first aid well forever. After 8 or so ok injections the last one by an indifferent foreign male nurse was a shocker. He administered both from the one side.

Reported to authorities.

🙏

[TammyCross in reply to Dragonfly2]

Yes, that should do it! Injections should be on hip, more on the side. Many nurses think it should be given in the butt, too many nerves, risk of sciatica.

[Nocillo]

Wow! I’ve never heard of this side effect either. Glad you found out quickly so you can eliminate it from your regimen. I hope something else works effectively for you!

[Oberammergaux2 in reply to Nocillo]

Thank you! I am learning such important information from those, like you, who are in this fight and willing to share their experiences. You all are a wealth of important facts!!!

[Mimiholl]

morning- have you checked to see if interacting with any other meds you take. I had a severe bout of rhabdomyalosis from ibrance and a statin. I had been having bouts of severe weakness which was treated by going off meds and blood transfusions, till over a span of 2 days I could only move my neck. I was this close to complete organ shutdown. Emergency room Dr got answer right away. Spent almost 2 weeks in hospital and weeks of rehab to regain use of legs, I am constantly checking drug interactions, it may be when first taken no problems and then with enough patient problems the interactions are finally posted as a warning. I am now super vigilant and don’t ignore any symptoms.

Please feel better

[Oberammergaux2 in reply to Mimiholl]

Oh mercy!! What a trial you have had 🤦🏼‍♀️. The pharmaceutical company asked about meds I was taking when I called them. I have found that interactions are not stressed by my MDs so I rely on my pharmacists. Even then, the information has not been collected yet for many of these new meds and new info is not dissipated to MDs. I’ve found that my MD will change to another new med (or two!) and expect pts to “adjust” to new reactions. I refuse to change without doing my own research and certainly will NOT change to two new meds at once, who knows what is causing reactions at that point.

I am finding this to be a matter of googling your own health care and relying on the knowledge passed by wonderful people (like on this site) who are on the front lines and actually experiences the results of these meds.

Thanks so much for sharing your interactions…..you have helped many to make informed decisions! Sending all best wishes to you and hopes for an easier path ahead!

[Elle713]

My first few months of shots brought me to tears they felt so painful. How they are administered can make a big difference. Have them warm up the shots first. The slower they administer, the less painful. Massage the area gently after. Eventually the muscle aches and pain dropped off and I took them for 18 months with no issues.

[Oberammergaux2 in reply to Elle713]

Hi Elle,

Thanks for the reply! No more Fulvestrant for me. I was advised that any future use could be much worse. I’m so sorry you’re going through this! The RNs giving the injections did so in approx 23 seconds (my husband counted) 🤦🏼‍♀️…..not cool! I’m a RN and have given infusion injections, they should be given over two minutes. It’s a beast of a med as far as injection pain and certainly not a bestie for nerves! I hope your new regime is going well and brilliantly successful!

Hugs to you 💕

[cpidacks]

Wow. I have been on Fulvestrant for 5 years and have never heard of this reaction. The only side effects I have had are itching, and some pain at the injection site for a few days. Sometimes my urine will smell for a few days, but other than that I have tolerated it well. My best to you.

[Oberammergaux2 in reply to cpidacks]

Hi!

I’m so glad you’re tolerating it well and it’s been working for you! If you dig deeply into pharmaceutical recommendations they state you should not have any contact with urine, feces or vomit for 48 hrs after injections, contaminated clothing and linens should be washed separately. Probably not a problem unless you’re a caretaker but I don’t understand why this information isn’t disseminated widely.

Keep on doing well!! And thank you for your response, any information is helpful.

💕 Hugs

[cpidacks in reply to Oberammergaux2]

Thanks for the info. I will look up the pharmaceutical recommendations.

[fancydog]

Thanks for sharing your scary experience and all you have learned since it happened. I have been receiving Faslodex 9 yrs w/o problems but my nurses do all the steps in administration correctly. I would not have it again if I were you as well!

[Beryl71]

Sorry to hear that. I've been on fulvestrant for six months and had no issues til this month, when I had pain down my leg and across my back and into the groin. It only lasted a couple of days and is fine now. Some doctors manage to inject without bruising but others don't! I reported at my telephone appointment and the Macmillan nurse spoke as if she'd heard of this before! It has been a good drug for me with ibrance and has made significant improvements to my scan results and tumour markers.

I think we all react differently to the treatments so it's good they have a repertoire to offer.

Good luck with future treatment.

Carolyn x

[Oberammergaux2 in reply to Beryl71]

so glad it’s working well for you!!! Sometimes I feel like we’re all mice in the lab,,,,,I was the one who fell over 🤦‍♀️ but I’m grateful that it’s doing well for others!!!

[TammyCross in reply to Beryl71]

It was probably given incorrectly. I never had injections from a doc, only nurses.

[muzzatron]

I think the 29 secs to inject gives a clue that the nurse may be incompetent, untrained or a xxxxx. Either way look elsewhere, report to authorities as will keep doing same to others.

[SwedishSissi]

Thank you for this information. My legs are extremely week and painful. Have 10 days to next injection, will monitor, but I am not sure how to walk to the nurse giving the injections...

[Oberammergaux2 in reply to SwedishSissi]

Hi SwedishSissi,

PLEASE make sure you have communicated the reaction you are having to your MDs. I was advised by the pharmaceutical company that makes Fulvestrant that this is a serious reaction and that I should not continue with it. It’s listed rather casually as “tingling, numbness or weakness of the legs” on the info sheets….it can lead to serious issues. I know you’re being brave but there are other meds 👍. I’ll be sending best wishes your way!