Faslodex Girls Thread
Comments
-
I seem to be having the worst time with the Faslodex - I am due for more shots on Tuesday (the 17th) and after that once a month - right now the se's are getting seriously bad - I am nauseous all day every day, I have the worst pain in my joints and muscles - my hips are literally killing me - I am on a steady diet of Tylenol Arthritis and Ativan - I am not sleeping more than six hours a night, am very weak - in other words right now my life sucks! Any idea if this is just a transient thing and will get better? I am seeing my onc on Tuesday and my PCP the following Monday and I am sure I'll hear the "none of our patients have reported these se's" which is a crock because I've had to look up the se's on Web MD so I didn't end up at Emerg last night because the pain and the muscle cramping was so bad I thought I was throwing a clot - guess I'm just venting because I want this to work so badly but I also need to be able to live independently and take care of things not planning on a nursing home any time in my near future......
0 -
I wish I knew what to tell you. I just never experienced these side effects, so I can't tell you if they are transient or not. I also never had any loading doses since that was not protocol back then. I am so very sorry that this drug, which has served me so very well, is making you feel so very crappy.
Wish I had something that could give you some comfort,
*susan*
0 -
I have had 4 sets of Faslodex ...I have had no se...that I know of...just my joints are very arthritic but most of my se is from the chemo IV (red demon) I get weekly....I am really run down for at least 4 days after treatment...I have the faslodex mthly...just had my 4th set of shots last Tuesday...
Really sorry your going through a rough patch..I hope it all gets better...for you
L&R Carla
0 -
I am so sorry about your se's. I have had pretty minor ones compared to yours, but I do find I have to eat smaller meals or I get wicked heartburn. I don't know if that is connected, but perhaps you can try that. I also give myself permission to take a half hour nap each afternoon with my dog on my lap. Very comforting...best of luck
0 -
Hi Sandy, I have been in the Palbociclib/Faslodex study for over a year. (Just started cycle 17 on Thursday). For me, muscle spasms have been so painful. My onc right away tested my magnesium levels and they were below normal. He asked me to take over the counter magnesium (250mg) daily. It helped a lot. I do occasionally take an extra one if necessary. Also, when you get your injections you MUST insist that they are warmed up - I make them use a heating pad! A very slow injection is also important! It make all the difference between sore injection sites, backaches and exhaustion. Also a heating pad when you get home will help. The loading doses are sometimes difficult but when your injections become monthly, it does get easier! If you are feeling nauseous, it is a side effect! Ask for something to help with it. Not sure if you like it (I don't) but coconut water can be very helpful. Hang in there! It does get better.
0 -
Sandy,
I just want to confirm what SusanAnn said. I get nasty leg, hand, body cramps when my magnesium levels get low. The side effects you reference certainly could be from the Faslodex but could also be from your electrolites being out of balance. You're nauseous so you aren't eating and drinking enough. Bananas for potassium, you can soak your feet or body in Epson Salts for magnesium but I take the pills as well. And salt.
It's worth a try.
0 -
Sandy, I'm so sorry you're having this trouble. I don't have any advice; the electrolyte idea sounds plausible to me. Gatorade?
As for me, I'd been having neck pain -- muscular. A masseuse took care of the muscles (and the pain) but meantime I told my onc and we agreed on an MRI, just in case. MRI report says 'we see something at C6 but it could just as easily be benign as cancer.' Sigh.
PET/CT scan in six weeks. I may be faced with my second progression (if you assume mets diagnosis is the first progression). I'm trying not to borrow trouble but since I'm mentioning it I guess I'm unsettled. These muscles have caused me trouble back to age 19, and the pain is gone, so whatever the lesion is it's not causing trouble. And it's a long way up the spine from the original spot. And there's nothing I can do about it right now anyway. . . [I'm rolling my eyes at myself]
The snow is so high on our deck that we can no longer see the table and chairs. It's one curvy mound of snow.
0 -
Thank you all so much for your advice and good thoughts - I am definitely going to address the mag levels at next appointment (on Tues.) - the shots have not bothered me at all - the nurse that gives them is awesome and I feel fine the day of and the day after - then the next four days have been wicked this past cycle and now I am left with the nausea (but not vomiting), the weakness, the cramping and the pain. I do have the nap thing in the afternoon with Penny (my wonderful companion doggie) on my lap (much nicer than a heating pad I think).
pajim - keeping fingers crossed that it's ONLY pain and not anything else - surprised you haven't been buried by the snow and now we're sending you a cold front - it's warmed up from -25C this morning to -23C now and I have to take Penny out again - we walk four times a day!!! It'll be a very short walk!
0 -
Hi Ladies....If I may "butt" in for a minute....I also have not had any pain as you describe. My two cents worth...my injections are administered by one nurse while I stand and lean against a solid object with foot turned slightly inward on the side to be injected. All weight off that foot. This may be where you are experiencing pain. It is impossible to relax two injection sites at once with simutaneous administrations. I hope that this helps. Message afterwards to the area.......and a double cafe mocha also helps.
Peggy
0 -
Hi All
I was just diagnosed with a recurrence of my BC-it's in my lymph nodes- in my left clavicle and left internal mammaries, and might be in other lymph nodes. My MO didn't use the words stage 4 but implied that. She wants me to go on faslodex as she has ruled out surgery (in too many areas for this) and has ruled out chemo (had AC and then T which obviously didn't do its job). I'm nervous and so disappointed that this is happening. But, that being said, I would like to know how long some of you have been on faslodex. I see another MO tomorrow at MSKCC tomorrow for a second opinion. I am hoping they might have a clinical trial for me.
Thanks!
Babs
0 -
Babs,
I've been on Faslodex and nothing else since the summer of 2011, when I was diagnosed with lung mets. The drug can have some side effects over time--in my case weight gain and joint issues from estrogen deprivation--but overall is a relatively easy treatment for most of us.
It's definitely worth a shot. (Pun intended.)
Tina
0 -
Hi all,I had my first set of shots two weeks ago and going in today for my second set of shots. With regard to side effects at this time, I had/have some itching in some areas of my body, i.e. right fore arm underside, lower outer leg and chest. It comes and goes. Yesterday I used Calamine lotion and it seemed to help. I also have noticed numbing of both hands when I lye down and fall to sleep. Has anyone noticed numbing hands during/after falling to sleep? I'll report back after two weeks pass to see what, if any, and I sure hope not, side effects I may have for this next round of shots.
0 -
Hi everyone,
I've been on Faslodex a few months - I seem to get some red bumps on my skin that come and go and are itchy and bleed if I scratch them - will try the hydrocortisone or benedryl cream, thank you for the advice. Other than that, it has been fine after a couple of days of achiness, not bad, though. Heartburn might be worse, and I found out that I can't drink Coca cola EVER while on this - it gives me severe diarrhea after the reflex/heartburn. Good to know for any who need a coca cola every once in a while, just be aware of what could happen!
Has anyone taken the Faslodex with the new FDA approved drug Ibrance?
Also Ibrance is approved to be taken with letrozole, but can you go to a letrozole/Ibrance combo if you have already used letrozole alone and moved on to Faslodex already? Of course, I also don't know whether Ibrance will ever be approved by Blue Cross even though FDA approved, and the exorbitant cost will of course preclude almost all patients from taking it at this point.
If you are considering the Ibrance if you have coverage, I wonder if you should find out whether you should move on to Faslodex, and even if you should start letrozole since the FDA approval is for the Ibrance/letrozole as a "1st line treatment" and I don't know if it is an option if you already tried letrozole alone, or Faslodex alone?
0 -
babs,
I have been on Faslodex since May 2010, 61 months. A very, good, long run to be sure. It appears that I have had a progression recently, but we are sticking with the Faslodex until at least April, when another set of scans will give us a better idea of what is happening in there. As a Grade 1 patient, my cancer is pretty mellow, as cancers go, giving us more time to decide the best plan of action.
For me, this drug has been more than tolerable. I hope that you can get over 4 years of no cancer activity with it as well.
*susan*
0 -
babs6287, I'm just back at my desk from my 26th set of shots. Two years and counting. . .
Pfizer may be still enrolling for the Fas/palbociclib trial. MSKCC would likely be a center for that (there isn't one in Boston).
0 -
Had my 2nd 'loading shots' yesterday. All went well. But, the nurse who gave my shots did not wear gloves. I mentioned to her that she did not have gloves on to administer the shots and she says she doesn't wear them. This nurse was not the nurse who gave me my first shots two weeks ago. She also opened the band aides, and stuck the two directly to her skin. This did not sit well with me. I hated to complain since I was in her hands so to speak with these shots. I may report this to my oncol. when I see him in two weeks. I'll get my 3rd loading shots that same day. What I would like to know is if your nurse wears gloves? Am I out the box so to speak? What would you have done? Thanks all.
0 -
No one has ever worn gloves during my injections. Never occurred to me that they should. I see them sanitize their hands at the omni-present sanitizing machines. They rub my butt with sanitizing solution. Open the bandaids and gauze so that they have not touched any surface except the wrappers that contained them. I don't really see how anything could be transferred from even some accidental skin-skin contact. I agree that her casual use of the bandaids is odd. I get a gauze between the injection hold and the bandaid [at my request], so for me this would still not result in any direct contact.
If gloves is important to you, then you should make sure that this is in your chart so you only get nurses who are comfortable holding the needles while wearing gloves. You could also, if you get this nurse again, offer to hold the bandaids for her so she keeps them off her body.
Curious what others have been experiencing.
*susan*
0 -
Faslodex did not work according to my ct-scan today. The thickening in my pleura has increased and one rib met has grown.
I wish you all the best. You will hopefully be not as unlucky as I am. I will go back to abraxane on Friday. Bye, baby hair and baby eyelashes.
0 -
Adnerb,
How very disappointing.... hate to see you go. May the abraxane do you better.
*susan*
0 -
Adnerb - sorry the Faslodex didn't work out for you - hope the abraxane works its magic. Sending a hug, S.
Nature - no gloves at my appointments - but lots of handwashing - doesn't worry me. I had a different nurse today and was quite upset when I saw that my nurse was on vac. - shots weren't as easy as they had been but no lingering effects.
0 -
susan & sandy, thanks for your input. Okay, I feel better now with regard to non use of gloves . But, I didn't see her use sanitize soap unless she did this before she entered the room. She also used the computer to type in my info. and touched other items as well, i.e. band aid box, scanner for my id bracelet etc.. I'll need to observe next time whether or not she sanitizes her hands.sandy, glad you did better with your injections from diff. nurse. I counted again how many seconds for each shot from my nurse. 32 seconds, one one side, 35 seconds on other. I was okay with that!
Adnerb, sorry for your news. I hope you do better with upcoming meds.
0 -
naturegirl- my nurse wears one glove on the hand that she injects with. I never asked her about it, but I assume it's to protect her as much as me.
Babs, sorry about your progression. Like Tina, I've been on Faslodex since June of 2011. I do have a little fatigue the day of and the day after, but nothing debilitating. It's been much easier than I had reason to hope. I wish you a long, relatively side-effect free run as well.
0 -
Nature - above every sink in every treatment room and in every public area and waiting area in our hospital are signs that read "it's o.k. to ask me to wash my hands" - there was a major c-dif. outbreak in this particular hospital more than five years ago and many patients died so.....
0 -
Adnerb, Wishing you every success with Abraxane. That was one of my drugs with my first courses of tx in '07...it was pretty kind to my hair and very little se otherwise. Sending big hugs. Peggy
0 -
Well a very very frightened morning for myself...early calls from nurses and doctors...My tumor markers have gone up...even on the most strongest chemo out there (Red Demon) they call it in the chemotherapy world and also Faslodex....Well this chemo is not working as planned..so cancer is progressing rapidly...now have to have another PET scan to see what the hell is going on...with the cancer...then will probably will be put on 2 different types of chemo plus blood transfusions...because my blood counts are always low...so getting clean fresh blood will help...who knows...I trust my doctors...but oh boy...I really have to stay strong and pray for a miracle....Love you all..I need you all more then ever!! *****TEARS*****
—
feeling exhausted. 0 -
Oh, Freebird, I am sorry to learn this. It's extremely disconcerting news. Of course you're exhausted.
You're in shock now, but things will look more manageable once you have real answers and a new plan in place.
In the meantime, know that we are by your side.
Tina
0 -
freebird,
What crushing news! Adriamycin is a powerful drug, but it doesn't work for everyone. I really hope that the scans give your doctors some insights into what drug combination might work for you. Obviously, we are here for you.
*susan*
0 -
Freebird, I'm so sorry you're going through this! Saying prayers, hope you get good news soon. ((hugs)
0 -
Got my Faslodex shots this afternoon. Last month the new insurance denied Xegeva, and required me to get Zometa infusion. Got every SE cited in the info plus bruised vein for a week, pretty miserable. Onc office appealed for me and insurance allows me to go back to Xegeva. Walked 45 minutes in 66 degree nice weather afterwards, pretty happy this time!
0 -
Freebird - we've got your back!!!
0
