Switching from Letrozole to Fulvestrant, markers going up fast, any advice?

[Fiercefighter13]

I'm curious about anyone getting Fulvestrant with Ibrance. My markers started creeping up about a year ago, then took two huge leaps two months ago, then last Friday. My markers are back up to where they were when I was first diagnosed. Ive taken Ibrance/Letrozole for 24 months. My doctor ordered a PET and is inclined to switch me to Fulvestrant from Letrozole. Are the shots as horribly painful as some people say they are? I'm scared about the injection pain. Any info, about the shots themselves or personal experiences with switching from Letrozole to Fulvestrant is greatly appreciated. Has anyone had their markers go up, with clean PET scans? My last PET was NED 4 months ago.

[Ntash01]

I was in the same boat as you a few weeks ago - I have needle phobia but my experience is that it’s been ‘ok’ so far! I’ve have had 2 of the 3 injections they give you every 2 weeks until you get the monthly one. Last booster is this Tuesday.

You will feel the ‘scratch’ once that’s done and needle is in, I begin to talk nonsense to the nurse for the sake of talking, trying to focus on anything other than what’s going on!! I’ve listened to all the advice I was given by the wonderful ladies on the board, you’d think I’d been to medical school the checklist I go through with the nurse…especially is it warm😂

I wanted to so stay on ibrance and swap letrozole with faslodex, but I’m only on Faslodex at the moment. I was sooo upset, but now I can see some improvement with my nails - less ridges and the discolouration especially on my hand and foot has lessened. December scan will reveal all!

Good luck with your treatment!

Nx

[Fiercefighter13 in reply to Ntash01]

Good to know!! I'm taking in every bit of advice that I can so that I don't suffer needlessly over these shots. Ten days to my first shots, countdown on! I wish this disease was easier to control and maintain. I suppose three years on the first treatment, doesn't give me too much to complain about, but I would have liked a couple more years out of the first line treatment. Thank you for your input, I really appreciate every bit of information I can get! Take care!!

[NPmary]

metaphor. Obtain a 2cd opinion? Many docs don't follow markers at all so l would question changing course without evidence of progression.

[Fiercefighter13 in reply to NPmary]

My doctor ordered a CT, endoscopy and PET while we waited to get insurance approval for the Fulvestrant (life takes time and patience sometimes and a little foresight). They found progression in my stomach on CT and endoscopy, my doctor was right on spot making arrangements to change to Fulvestrant. She knows me well, and at least this time, she got things rolling early with getting insurance approval to start the Fulvestrant right on time, to start with the new test results, so no unnecessary waiting for treatment. I understand your advice though, I get it.....I'm really blessed to have a proactive doctor who knows me really well and so far, has got everything and timing right spot on! Take care!!

[NPmary in reply to Fiercefighter13]

Glad you are feeling good about the plan. Sorry about the stomach progression. I was recently diagnosed with progression of bone mets. Will also be starting fulvestrant and have an MRI scheduled to look for possible spinal cord compression.Wish you and everyone here the best.

🌺

[Fiercefighter13 in reply to NPmary]

Wishing the same for you, this disease gets a bit tiring after a while. It's a game of chase without a lot of rest breaks. I'm sorry you are experiencing progression as well. I hope your MRI shows results that are workable, and that the Fulvestrant gives you many years of regression, peace and quiet! Take care!

[NPmary in reply to Fiercefighter13]

Thank you. ❤️

[diamags]

The shots can be painful. I've been on it for 8 years. I would say they're worse than a misquito bite (Xgeva is like a misquito bite), but nowhere near as bad as a wasp sting. Nowhere near. Where I get mine they offer freezing the site before injecting, but I find the freezing spray more painful than the shot.

[Fiercefighter13 in reply to diamags]

Good to know!! I will ask about the freezing spray, and see what the nurses at my clinic think about it. It does sound like freezing the area would just aggravate the whole situation. I wonder if putting a little lidocaine in the area would help? I'll certainly ask. 10 days and I start the loading doses, ugh! Thank you for your input, your analogies really help put it in perspective for me! Take care!

[mariootsi]

I have been getting Fulvestrant shots since 2018 along with Ibrance. I went for my shots today.Just make sure they warm up the shots, give them slowly and relax your legs.

I have been asking them to give me the shots more on my side and I find it easier to sit without any soreness. If you are sore after, a heating pad will help. Good luck! Try to relax. It really is very tolerable.

[Fiercefighter13 in reply to mariootsi]

Luckily, I have heated car seats, and they get really warm, which sounds like a good way to start off on the way home. I will be sure to ask them to warm them up, or let me hold them under my armpits for a bit to get them warm. As far as relaxing the legs, or muscles, holy moly.......not sure on that one. I tense up like crazy and have even cracked teeth because every muscle in my body gets in knots when I'm stressed. My doctor prescribed Lorazepam and told me to take it before the shots.....I think I will definitely being doing that. Thank you for your good advice, take care!!

[luckysmom13]

I lie on my stomach and they do both shots at the same time. They do hurt, sometimes worse than others, but it's tolerable. I'd do just about anything to keep this monster at bay!

[Fiercefighter13 in reply to luckysmom13]

More good advice and things to try, thank you!! I agree, got to keep this monster at bay, I call it my little dark cloud and when scan time comes, I call it playing hide and go seek with the boogey monster. Lying down reminds me a bit of traumatic shot experiences I had as a child, but it's something to consider, if standing won't allow me to relax those muscles. Thank you for responding, I really appreciate all the support!! Take good care!!

[Fiercefighter13]

Thank you to everyone who responded! All of your information and shared stories have given me much food for thought. I am so grateful for all of you!

[Hidden]

I am on fulverstant injections and I can honestly tell you that the injections are not painful at all.

[Fiercefighter13 in reply to Hidden]

I love hearing that!! I'm hoping and praying I will be able to say the same!! Take care!

[ScoutnFlower]

No problems, the nurses are key, they kinda pinch hold the skin so u don’t feel much at all. My advice DO NOT LOOK AT THE NEEDLE when on the prep table. Good luck. Cannabis helps before going in too😊

[Fiercefighter13 in reply to ScoutnFlower]

Thank you for the advice! I was thinking of Lorazepam before going in instead of Cannabis.....Cannabis makes me paranoid, that wouldn't be a great way to start a shot I'm afraid of.

[ScoutnFlower]

Also, I stand n lift my leg 1 inch from the floor n relax it as they inject on same side. Works wonders, take a deep breath to relax your butt muscle. Relaxing muscle Is key.

[Fiercefighter13 in reply to ScoutnFlower]

Sounds like the Lorazepam my doctor prescribed for shot day will be in order for me. I have a very, very hard time relaxing muscles when I'm tense. I have actually cracked teeth from locking my jaw when tensed up. Lifting the leg being injected sounds like a great idea and distraction. As a matter of fact, I should probably wear my teeth night guard on that day. My dentist really doesn't need to be in the middle of all of this! Good to know, I will be working on meditating skills as well. Take care!!

[Misspositiveattitude]

With all I had read I was terrified of the injections, and couldnt sleep the night before. Now its 9 months later, I get them monthly and never had an issue during or after. Just make sure they warm the solution first and stand slightly bent over with toes pointed at each other to relax muscles. Good luck.....

[Fiercefighter13 in reply to Misspositiveattitude]

Oh, toes pointed at each other, sounds interesting and I will give that a try. So much good advice, I think I just might "survive" the shots. Honestly, I really thought I wouldn't be able to go through it, but after reading so many good suggestions, I think I can now manage this. I hope as time passes, I will be able to say "never had an issue" like you said. Take care!!