Faslodex Girls Thread
Comments
-
Georgie, ice packs would be totally counter productive. You need to walk around for awhile after your shots, not just sit and drive. If you haven't already, be sure to read through the earlier pages here. The way the shot is given is extremely important, but so are some things like being sure the vials are warmed and that you unweight the leg in which you're getting it.
0 -
thanks dlb823! I appreciate your input!
0 -
Thanks, Susan. I will give an update after next Monday when I get my shots again
0 -
Never heard of pull and pinch. DON'T USE ICE!!!
0 -
Hi Denny- the nurse grabs a bunch of flesh on the buttocks upper area, and then gives the injection. It seems to be the consensus to not use ice. I'm glad I found out
0 -
Has anyone had bloody urine as a side effect of Faslodex? It only lasted 2 days. I did have a urinalysis which did not show an infection. Any thoughts
Thanks!
0 -
Georgie - no blood in my urine BUT your nurse should not be grabbing a bunch of flesh and injecting - she needs to follow the protocol mentioned a page or two back - download it if you can and take it in to her.
0 -
Geogie-I have never heard of getting an injection like that. Please talk to your nurse about it.
Bloody urine is a new one to me too. I hope you can get additional testing.
0 -
I've never heard of it either and I've been on this thread for close to three years. I wonder if drinking extra water around the time of the shots would help.
0 -
I did find a possible side effect from Fulvestrant of bloody urine on the Mayo Clinic site. I have to say I was relieved as the first thing I think of is mets! The extra water suggestion might be helpful. I'll have to try it. Thanks!
0 -
Georgie - glad you found an se on the mayo site but think you should report this to your onc anyway - just to be on the safe side.
0 -
I had my onc appt. today and I had my tumor markers done-they weny from 57-77. And I have had three Falsodex treatments. I do not get it. I had another today, and if my markers are up in a month I have to get a scan. I only had one bone met too. I guess the falsodex does not work for me.
0 -
Lisajo6, you have just finished your "loading doses," so you are only beginning with Faslodex. Unlike some harsher treatments, this one takes a while to kick in and really work, but when it does it can be very effective. I am proof of this, as are many other participants in this forum.
Please don't give up hope. Hang in!
Tina
0 -
Hi Sandy - I've already talked to my doctor about this. He ordered a urinalysis, which was negative. I will be seeing him on Monday. Thanks!
0 -
Hi,
I have already posted about this, but I am going to try again. I was diagnosed with a small bone met on my pelvis in July. My first diagnosis was in 1998. Stage 2B, 6 pos nodes ER+. had rads, chemo, tram flap, tomaxifan, femara.
My tumor markers went up in 2013-I had three nodes light up and one was biopsied. No cancer. My doc put me on Aromosin and my numbers went into the normal range for 18 months. My markers rose to 57-then they found the met. I had 16 rounds of radiations and my markers dropped to 50. Three treatments of Falsodex they went to 57 now they are 74. My bone biopsy was 5% ER+. My doc had my get my falsodex on Thursday and I go back in a month to get blood work done again and he said if my markers are still up I will get a pet scan in January,
I of course, am devastated. I feel fine-my metabolic panel and CBC are all normal. He thinks I might have another microscopic spot in my bones or maybe a node. He does not believe it is in my lungs or liver. He is the top oncologist at the Clevlanc Clinic Northcoast Cancer Center in Ohio. He has been my onc from day one. He says I am not terminal-and says there a lot of things to try.
I want falsodex to work-any stories similiar to mine? Do I have hope for some more quality years?
Thank you ladies. I am so scared.
Lisa S.0 -
Lisa, it sounds like your onc is doing all the right things. If it helps at all, I can share a couple of things my onc has said to me in the past that might be pertinent to your situation. First... that this is a marathon, not a sprint. In other words, we need to be aware of the long range picture, and TMs sometimes do go up before they come down. The other thing she once told me is that she didn't particularly worry about an increase in TMs unless they doubled. That is assuming no increased pain or new pain or other concerns.
I think it's hard to tell at this point what's going on, which I know is extremely frustrating. I think your onc's plan to scan in January is perfect, and I would try not to worry about it until then, as TMs of 74 are still comparatively low in the overall scheme of things, and probably why your onc isn't worried about any serious progression. Deanna
0 -
LisaJo, I feel fine too. Well, almost fine. I've been on Faslodex near three years now. I'm a little creaky, but otherwise healthy. My blood panel is perfectly normal.
Just because you have mets doesn't mean you should automatically be (or feel!) ill. Celebrate that you feel fine! I hope that continues for you.
I too believe your onc is doing all the right things. There are lots and lots of treatments to try, including a whole bunch coming on line in the next few years.
One other thing to think about -- not everyone responds to every treatment the same way. And I mean that in a good way and a bad way. Some tumors don't respond to a treatment, but respond great to the next treatment. For each treatment some women sail through with no side-effects, and others have a horrible time. So if Fas doesn't work for you, do not despair. The next drug you try may be the magic bullet.
0 -
I am an emotional mess, weepy, all that. It must be the Faslodex. It's bad, I'm going to ask my onc for an antidepressant or else I'm coming off this treatment. I can't live like this.
0 -
Hi Janet - sorry to hear you are having this problem with the Faslodex. I have been on Faslodex for the past few months. For the first month/6 weeks or so, I felt like I was being dragged down a dark hole. I went to talk to my therapist and proceeded to cry for the entire hour. She said if I got any lower, I would have to go on an anti-depressant, which I really don't want to do. Well it seems that after my meltdown, I felt mentally better and still do. So maybe just give it a little time, but not too long. Good luck to you
0 -
cjanet, I have sympathy. If I take 10mg of oxycodone I melt down. I'm so sorry Faslodex does it to you. Please do ask for help.
I've said it before and I'll say it again: Better living through chemistry!
0 -
cjanet - I should add that although I am not so down anymore, the last time I saw my oncologist, I told him that I felt like punching him in the face! Now I would never say something like that....but I just snapped. I had blood in my urine and he had told me it wasn't from the Fulvestrant, so I googled it and found it on the Mayo Clinic's website. I printed it out and brought it to him, and he said it's not a "usual" side effect. That's when I told him I felt like punching him in the face. I do think that the Fulvestrant does something to you mentally
0 -
Thanks for the support ladies. Going back on Celexa today. These days are far too depressing for me. I can't snap myself out of it and I need to be strong for my kids and myself and my DH. I just don't want to feel this badly and I hope hope the Celexa can help this time. I got all my shots yesterday so my butt is sore. The nurse said I look like a pincushion down there.
0 -
Georgie, I'm unhappy your doc didn't take you seriously. Whether or not it's a common or uncommon side-effect of Faslodex doesn't mean he shouldn't help you get to the bottom of the symptom. Or at least relieve your mind that it won't hurt you.
Glad you told him you were ready to punch him. Hopefully that will wake him up.
Christina, I hope the Celexa helps. I don't have any experience with SSRIs but I hear they can take some time to kick in? Don't give up. If it doesn't help, try something else. You deserve to live the best life you can.
As for me, scan this morning, shots and consult tomorrow. I'm pretty sure that this time we'll need to change treatment. Of course I thought that four months ago so who knows?
0 -
Georgie, I am so glad you posted about the bloody urine. I had my 4th Faslodex shots last Wednesday, and for the first time I had a similar thing in the first 24 hrs. I would have been freaked out if I hadn't just read what happened to you. Also, the tech who gave me my shots this time was clueless about the proper way to give them. Thankfully, I remembered she was the one with the "pinch and grab" technique (I had her for my very first Faslodex shots, before I knew better), and I she was open and receptive to a quick lesson. The first one went perfectly. But on the second one, she started to pinch, and when I reminded her, she let go but didn't push or pull either -- just kind of jabbed the needle into me, which really hurt. Anyway, just sharing this b'cuz I wondered if the bloody urine might be related to an improper jab.
pajim, good luck with your scans!
Cristina, I don't understand why you'd look like a pin cushion. Are the shots leaving scars?
0 -
Welcome LisaJo, but so sorry you have found yourself here. From what I have learned here, having minimal bone only mets is very good prognosis wise. I think the PET would be good to confirm there is nothing else going on and set your mind more at ease. Faslodex has been very good to me. I started with many mets throughout spine and pelvis and am now nearly without visible mets on PET. Best of luck to you, hope you let us know how you are doing.
Christina, sorry about the sore butt blues. Hope you can look at it as being done with that for another month! You get shots to repress your estrogen levels too, right? Ouch! I hope the Celexa helps you feel better, this gloomy time of year can really add to our feelings of depresson. Hang in there! Your little ones are sooooo cute, they must give you great motivation to keep on. And wear you out too!
It never ceases to amaze me how differently we all react to drugs! When I switched from anastazole to Faslodex I was amazed at how "normal" I got emotionally. I was crying over just about anything on anastrazole but didn't think about it being an se as it was my first tx. And I have been noticing lately how much a 5mg oxy lifts my mood and productivity in the afternoon, just opposite of what Pam said.
Pam, Hoping you get good news tomorrow, glad you don't have to wait too long after scan. What kind of scans do you get? Please let us know what you find out. Fingers and toes crossed for another 4 months, and another 4, and so on!
Deanna & Georgie, scary se! It's so good to have this forum to share info. My mo is another one that acts like se's don't exist.
0 -
Got my shots yesterday. My butt looks like its normal chubby self. Have been on Faslodex for about 4 years.
0 -
Back from the cancer center. PET scan results are "the same". I didn't get the printout so I'm not sure that's really true, but close enough. I can print it for myself in a week and compare to last time. My tumor markers are rising, but have only reached 200.
We've (Hubby, onc, me) decided to wait again. Check the tumor markers in two months. Once again he said "you feel fine, don't you?" (Aside from being creaky and mildly headachy, I do)
Come February it'll be a year since the cancer first reappeared after two years NED. And we haven't switched treatment. (switch in this case will mean add on Ibrance) Heavens!
0 -
pajim, that's great news!
0 -
Great news pajim!!!
0 -
Yea Pam, happy to hear it!
0
