How much of a pain in the butt can I expect from Fulvestrant?

[jersey-jazz]

Tuesday begins the new regime because Letrozole only did damage and no healing. This time, it is Fulvestrant at MSK. Will I be able to drive for part of the way or should I arrange for a full limo service with family and friends? Please fill me in with the details. I got absolutely no details from the oncologist.

[jersey-jazz]

Post script-----------Up came other streams all about Fulvestrant as soon as I entered the above post. Now, all I need are prayers and good wishes. Everything helps within our group.

[hdhonda in reply to jersey-jazz]

Good luck and blessings, Hannah

[mariootsi in reply to jersey-jazz]

You have my prayers and good wishes for sure! A short ride isn't bad at all. Have them give you the shots a little more on the side of your hips...easier to sit after. When you get home a heating pad works very well to help with any soreness! Good luck.

[Ardie1970]

I drive after my shots but I don’t have too far to go. Also, if you have heated seats they are heavenly after the shots.

[Tolife_18]

Are going to continue Ibrance and switching Letrozole to Fulvestant? Sending prayers! 🙏🙏🙏

[jersey-jazz in reply to Tolife_18]

Tolife_18 -I started to write back to you yesterday afternoon but I think that I gave up and went to bed without completing my note to you. I never did take Ibrance although my now retired oncologist hurried to prescribe it to me. I took the telephone call from a staff member of Ibrance and asked what they were charging for a monthly dose. Charging $17,000 is sinful and I want no part of an unethical thing like that. My insurance would have paid the vast majority of that. That does not make it alright.

[SMPG]

I have had two injections of this so far and I was able, very well, to drive myself there and back, about 60 miles one way. The nurse who administered the injections gave me some ice packs for the road. So, I put those inside my underwire while I drove. But I don't think I would have been worse without them.

[BluHydrangea]

Sending best wishes and care to you with this new treatment! ❤️

[jersey-jazz in reply to BluHydrangea]

Thank you, BlueHydrangea!

[debbiedo2063]

HiI can honestly say in a year I’ve not had pain from the injections. Mine seem to be given more up in the hip region than the butt cheeks so sitting not an issue.

Hope it goes ok for you

Debra xxx😍

[Nature613]

Hi Jersey Jazz,I’m sending you positive vibes and best wishes. I’ve been getting fulvestrant injections since 2017. For me , they are a little painful. Possible helpful info. would be don’t be weight bearing on the side you’re getting the injection on, since it’s going into your gluteal muscle. I lay on my stomach and 2 nurses give it at same time. I wish you the best with your treatment.

[jersey-jazz in reply to Nature613]

How long does the pain last?

[Nature613]

You can do this. For me it hurts when they are injecting. I focus on breathing . (Try focusing on breathing in for the count of 4 and out for 4.) I just think I need this so I do it. I don’t like it though. You’ll get used to it. You’ll hopefully do great . Sending best wishes to you.

[Melpub]

Usually things are not that bad. Different nurses have different levels of skill; sometimes there's a few moments of pain but you can get up and go after--I go to the gym or walk to the store. You can develop a little lump (frozen pea to marble size) at the injection site; you or the nurse can massage this and it goes away eventually. There are women who have had more trouble with the shot than me, however. I devoted a few posts to the shot on my blog, The Critical Mom, so you could look there for "Fulvestrant" or "Faslodex."

[Rubyjude]

I had my first Fulvestrant injections last Tuesday and, like you, I was anxious about how it would go. Well, I should not have worried. No pain on injection, and virtually no pain afterwards. The nurse was very experienced and gave me plenty of advice on how best to position myself, when to wiggle my toes, and when to rub the injection site. I went for a 30 min walk round the hospital grounds before getting back in the car. Later I did find a small lump had developed at one of the injection sites but a minute's massage and it went away. And that's it. No side effects yet either. Feeling so much less tired and breathless after stopping Ibrance; in fact, feeling the best since my mbc diagnosis 14 months ago. Hope it goes as well for you.

[Hidden]

Hi. I had fulverstant injections for several months. No pain at all from injections. Nurse stands each side and injections at same time. No pain. No more than a flu jab. Don't worry it's OK. . Going on chemo this week as fulverstant didn't work however it does work for others and probably will work for you. All the best to you.

[jersey-jazz]

Wow! This is some wonderful community we have here! Thank you, all of you, who responded to my plea for information and who were so generous with your good wishes. It all comes absolutely at the right time. I am feeling quite shook up about the new cancerous things growing back in my liver in different places. It is the not-knowing that gets to me and you all know that feeling.Armed with the knowledge that the Fulvestrant injections will not be so debilitating, I will be calling off the posse and will be driving myself the distance and thereby continuing as much as possible to be independent.

Thank you!

[AvidBooklover in reply to jersey-jazz]

When I went for my first shots, the nurse told me the woman before me was going horseback riding after her shots. I keep that in my head the day of shots. I find going every four weeks more inconvenient than painful! Urine does smell more peculiar for about 48 hrs!

[jersey-jazz in reply to AvidBooklover]

I think that I will be happier with a once a month shot than taking in the drugs every day. Thank you for putting the vision of the. horseback rider in my head.

[AvidBooklover in reply to jersey-jazz]

Trust me the horseback image helps. I also tell them to go as far left or right with the injection and I raise the leg that is getting the injection. 95% of the time barely notice later...and in fact I have forgotten there are bandages there!

[1711JPD]

Hi.

I have mentioned this before. I have been getting Faslodex injections since February if this year. I bring this spray with me and the nurse sprays the injection sites before administering the shots. It numbs the area . I get it through Amazon and it costs about $4. Hope this helps and best wishes!

Cold spray

[jersey-jazz in reply to 1711JPD]

Thank you for the recommendation. It's too late for tomorrow. However, since it's Memorial Sloan Kettering that I am going to, I will ask if they can put such a spay on me before the deed.

[AvidBooklover in reply to jersey-jazz]

Which Sloan are you going to? I go to Basking Ridge in NJ.

[jersey-jazz in reply to AvidBooklover]

I am currently going to Montvale NJ. I am about the same distance from each location and used to go to the Basking Ridge one until the Montvale one opened. I'm from Ridgewood NJ. so, Bergen County is my old stamping ground and I know the back roads if traffic is piling up. I live in Wantage Township, very close to the two state parks, High Point State Park and Stokes State Forest. It is beautiful but because of the recent political divide, I call it Deliverance country. Where is your nest?

[AvidBooklover in reply to jersey-jazz]

I live in Warren and Basking Ridge Sloan is one traffic light away and since I am there at least one day a month....this works!!! You will do well...seriously!!!

[cpidacks]

I have been on Faslodex since March of 2019. Try to relax when the nurses are giving you the shots. Do not tense up. I have no trouble driving home, although it is only a 20 minute drive. I have heated seats which makes my butt feel good. I try to walk after the injections. This will help. Sometimes it does hurt when the nurses are giving the injections, but I find it depends on the nurse. Make sure the Faslodex is warm and not cold. The only side effects I have sometimes are bruising at the injection site, itching for a few days and soreness. This is tolerable. Good luck to you and to all of us in our journey.

[jersey-jazz in reply to cpidacks]

Thank you so much for the encouragement. I am feeling better and better about all this.

[Ntash01]

I’ve had 3 loading shots, and last week had my first monthly ones. No pain from 1st three, I requested slow and steady as per advice, but 4th shots the nurse just went ‘bish bash bosh’ and it was over in seconds on each side. Not sure if I’m slightly abnormal - but I’ve had no issues since Wednesday. However, my outer thighs feels numb for about 3 days. Had this sensation with the super slow and super quick nurse…guessing it’s the effect of the meds rather than anything else.

[jersey-jazz in reply to Ntash01]

Thanks for the description. I will be right behind you, As noted, number one is tomorrow. Then the second and third ones are on December 14 and December 28. . Rubyjude responded and she has just begun her loading doses last week. All of us will have to keep tabs on one another.

[LadyKatarina]

I was on Fulvestrant for about two years. NO PAIN upon injection. Any pain happened about 2 to 3 weeks after. The muscles eventually got knots and painful spots. And then one muscle started seizing--near lower back. I think it was the same spot--or very near it-- where they injected. If there are nerves close by they can be affected. It was my best anti-estrogen therapy. Anastrozole and letrozole are very toxic for some of us and cause cognitive impairment. Best to you!

[Hidden]

I’m distressed your onc offered no details. Is that usual or not? Either way, it’s worth bringing up? Managing a patient’s treatment fears should be an important part of the job.

[jersey-jazz in reply to Hidden]

She is my new oncologist. I did not bring any questions to her today. I didn't know what to expect although many sisters have kindly shared their experiences. I had my first Fulvestrant treatment and it was a little scary but okay. It was more emotional for me because it signifies that the monster cancer is agressive and it poses so many unknowns. I believe that I mentioned on this steam that one of my dear dear friends died on Thanksgiving night. The wake is Thursday 4pm to 8pm. There will be no church service. It is being organized by his two children, not his girlfriend. The offspring are in their twenties and have their own lives. Having been theatre connected, I am all for ceremony and ritual. My friend was a musician and so are so many our friends. A keyboard will appear toward the end of the wake and some of the men will sing for my dear friend. This includes my part time boyfriend who has been gifted with an absolutely beautiful tenor voice. This is a low point.

[jersey-jazz]

Thank you, dear Sandra! You write the word, "palliative" When I hear the word. "palliative', I have alway think that this is the end. There is no hope and the end is soon. Members of our exclusive club here teach each other all the time. You went from a palliative state back to a good place. I really did not know one could do that. Good on you!

[jersey-jazz]

Thank God for small favors, only that's a big favor. I am very glad that you are fit enough to carry on with your busy life. Your entries on this forum are so helpful and so comforting. We all value your input on this and into our lives.-------------------------XXX OOO