fluvesant injection.

[Praising]

has anyone got back hip leg pain from the injection being put in wrong? I know it can cause sciatica if so. I’m in a lot of pain. I think I have a lesion on the femur on that leg? Help

[TammyCross]

Oh, no! It would be hard to tell whether the pain is from the injection or from the lesion -- except for timing. I had the worst time trying to get the nurses to inject the fulvestrant correctly, The oncology nurse practitioner knew to give it in the hip, not the butt, but the nurses at the infusion center did not. I downloaded a diagram from a nursing journal and took it with me, talked to the head nurse....and read an article about how nurses don't like to change their approach. Really bad pain hitting the sciatica. It will pass, but it takes a while. The alternative explanation is worse, however. You have had a scan recently? Did it show a lesion in the femur?

[Nocillo in reply to TammyCross]

It’s ridiculous to what levels we have to advocate for ourselves. I find myself, more often than not, having to tell them what to do, which veins to use, etc. When they still want to use the vein they think is the best, it usually blows out and they end up using my suggestion and it irritates the heck out of me! After almost ten years, I think I know my body! You did well to take the drawing in!

[TammyCross in reply to Nocillo]

Yes! I have blood draws monthly. I have prominent veins and bleed easily. That means I am easy to get blood from and that I bruise easily. If they do it slowly and gently, I don't feel it. Some listen, but then there is that one who contradicts me, jabs me hard, and I end up with a bad bruise.

[bikebabe in reply to TammyCross]

Yes that irritates me as well. The lymphoedema on left arm means the right one is hammered from chemo, infusions, IVs, blood draws - nearly all veins are scarred but some don’t listen and cause significant pain so I’ve become anxious and somehow it’s now my fault as I’m anxious . Last month I had two unsuccessful draws from the technician and was thrn referred back to the person who had caused me huge pain and swelling a week earlier (am on warfarin and she went right through). I’m under 6 different trusts and they all insist on their own bit of my blood despite me taking my spreadsheet of results from Previous very recent draws. I did consider a portacath , even a picc line until I realised that hardly anyone outside the cancer unit knows how to use it. Or use my lymphy arm for urgent needs.

[HelenWi in reply to bikebabe]

I have a similar situation, with lymphedema in my right arm. I’m ok for blood draws but the average technician or nurse can’t insert an IV into my left arm veins. So now I schedule a picc nurse when I need an IV for MRIs or PET scan. (Having said all that, I recently had femur surgery at UCSF and 2 IVs were inserted successfully on the first try. Maybe it’s just a matter of competence!)

[GooGooGee in reply to TammyCross]

Good job! I read the inserts too.

I’ve had it hit a nerve all the way down to my foot

My left butt check is numb.

[av66]

Oh, I have had a few injections hit the sciatic nerve. It's so painful and debilitating. I have been getting the Fulvestrant injections for over 3 years. I noticed when the nurse is stressed out or ranting about her crazy day, that's the times she has hit it. In fact earlier this month she did it again. This time as soon as she injected shot #1, I think I squeeled or something. I know it buckled me for sure! I was in so much pain. She was so apologetic but had to continue administering it. She offered for me to use the bed in the other room. I told her I just wanted her to get the other one over with. I was wheeled out because I just could not walk without pain. The big pain lasted like 2 weeks. I was prescribed Tramodol and Flexeril. Haven't been able to shake it. Still aggrevated by any little "incorrect" movement. But I have prior back and sciatic nerve issues way before starting the fulvestrant. I have used SalonPas patches in the past as well. They seemed to help temporarily at least.

I do hope you find relief from the pain. Also, if you think it's because of a lesion, then of course contact your team.

[Praising in reply to av66]

Thank you. I really think the shot after reading responses. My knee really hurts as well

[TammyCross in reply to av66]

This shouldn't happen. The oncology nurse practitioner had to give intramuscular injections to her sister. She had her sister lie on her stomach and injected her in the hips. It is less painful to begin with, and no risk of hitting sciatic nerve. It sounds like you have the same nurse regularly. It sounds like she is injecting your buttocks. There is no reason she cannot learn to do it correctly, in the hips. Why don't you try to find some nursing journal articles, with diagrams, on how to inject fulvestrant? You cannot be the only one she is hurting. You don't need weeks of debilitating pain. It is incompetence (as with phlebotomists blowing veins described above).

[bikebabe]

oh that sounds so horrible Praising. It’s hard enough anyway without the added injuries/pain we get from poorly administered interventions. I hope you can find something good to distract your mind away from the pain til it gets sorted. Would hypnotherapy help - I started to train up and was amazed how effective it was in being able to redirect pain. Acupuncture & massage are more immediate but maybe worth learning tai chi which also helps longer term to focus it, redirect it, and send healing energy to it.

[Beryl71]

I only had discomfort once. I took paracetamol and if subsided after a couple of days. My GP does it for me. I told her and she has since been careful to do high up on my bottom. It's been fine since. Good luck.

[genealogy74]

This happened to me about three months ago. I've been on fulvestrant for about 3 1/2 years without any issues. It was very painful for about a month. I told my doctor about it and she said that the site is close to the sciatica. I also wondered it I got the shot too quickly -- it's supposed to go in slowly. Haven't had any issues the last two injections. Good luck.

[Praising in reply to genealogy74]

Did you have pain in the knee leg as well?glad to hear it’s better and you continued. If mine isn’t it will be time for the next one….

[genealogy74 in reply to Praising]

I had some pain down my right leg, but none in my knee. All is good now.

[SKoter]

I’m getting my shot today and dreading it…. I have not had any bad ones luckily like yours but it still hurts badly. It is definitely dependent on which nurse is administering the shots. Like others said, when the treatment center is busy, nurses are stressed, there are chances that our shots being very pain ones! I am so sorry that you had to experience that pain. I’m crossing my fingers that the treatment center is peaceful today and I will have a good nurse!!

[Oberammergaux2]

PLEASE report to your MD immediately. Fluvesant can cause a severe reaction (per the pharmaceutical company) called Drug Induced Myopathy. Also report it to the drug company who makes your Fluvesant. I ended up unable to walk for several days and still have residual pain months later. This medication has a 40-50 day half-life so it remains in your system a long time.

[Praising in reply to Oberammergaux2]

Did you continue? Were you given anything? Heat/ice, Tylenol

[Oberammergaux2 in reply to Praising]

No, the pharmaceutical company recommended that I not receive the medication again. They recommended that I have certain tests drawn to monitor muscle damage and possible kidney damage. It’s listed as a “severe reaction” causing tingling, numbness or weakness in legs.

[Praising in reply to Praising]

What tests did you have? Glad you are doing better. I can walk but slowly. My knee gets it too

[Duckftball]

my wife puts hand warmers (the kind golfers use) in her pants pockets an hour before her shots. For some reason it helps immensely. She also has 2 nurses doing the 2 shots simultaneously.

Anyone on Truqap? The wife finished Trudelvy a couple of months ago and went to doxil but it made her neuropathy worse so going to Truqap. She has been stage IV for 6 years and 4 chemos so don’t lose hope.

[Dragonfly2]

oh gosh, I’ve been there! I’ve had fulvestrant shots for nearly a year…but it took a few months before 8 got a nurse that followed the oncologist’s directions to avoid the sciatic nerve, I now get the shots high on the hip without an issue. Also, try to roll on some lidocaine about an hour or so before the shot to numb the area. I hardly feel anything…and the nurse always wonders why…because apparently it’s (sshhhhh) a big needle.

But your pain may have something to do with a lesion…ask about some radiation to stop the pain. Wishing you relief and comfort….its a loooooong journey.