Faslodex Girls Thread
Comments
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For some reason I bled a lot on one side when I had my shots last week. Usually the nurse has me put pressure on the injection site afterwards and I think I didn't put enough pressure on one side. Not exactly something serious, the only thing I had to do was use some hydrogen peroxide on my skirt and blouse where it dripped.
Tina, thanks for the "quote". It helped lighten my mood, which I needed.
Leah
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Desi, over time I've discovered I'm getting creaky joints, but no pain. I know some people have joint pain with the anti-hormonals. There are some newer non-narcotic pain meds, or you could try Fentanyl patches?
Welcome to all the new members. I had my shots yesterday -- new nurse, no problems. (Yay!) Drink up Susan!
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Today's injections were done by a different nurse. To say, I wasn't happy when Nurse Sharon arrived would be an understatement. I insisted that i have Nurse Judy.... who did come to explain that her hands have been troublesome and she just can't do the injections right now. So Nurse Sharon it was. Funny set of interactions. She went from being surprised by how much I knew about the drug and my disease to talking to me like I was a toddler. Takes all kinds, eh?
However, the pain was not bad at all. Not too much nausea, though my digestive system complained almost immediately. Came home and slept for three hours! And I had slept for 8 hrs last night!
Dinner out. Wonderful fish and chips at a local Irish pub with a mojito to start. This drink was about three drinks in one! The waitress noticed that is was "potent" and brought me a huge glass of soda water to water it down as I ate.
Haven't checked the bandages for blood yet. Seems to vary each month. Leah, hope you aren't having too much pain.
*susan*
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Desi, my GP prescribed patches for the pain. You stick one your upper body for 72 hours and replace it with a new one after that.. The patch releases the drug slowly over the time and are very good if you cannot tolerate other pain killers - also do not mess up the stomach. So far I am on day2 and I must say they are really helping. Hope that helps.
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Lots of newbies on this thread. Welcome!
Great news. I've been on Faslodex since the beginning of June. My tumor markers have jumped down twice almost to normal. I won't get any kind of scan for another 2-3 months, so it really doesn't prove anything. But I'm still pretty happy.
I also get Halaven (chemo), aromasin and just finished with rads for wide spread skin mets across by diaphragm. My mets have been thickening of abdominal wall and several places around colon.
Thanks for sharing my good news.
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Hi all! I'm happy Tina directed me to this thread. I've been a lurker since January 2009, but really feel a need to share stories and experiences with people now that I am stage IV (diagnosed June 26 2014). The information we need as survivors is really so individual and needs to be told through stories. I have lung, bone and liver mets -- way too many to count. But after a horrific, debilitating episode with flare, I am back to swimming 1 1/2 miles in under an hour and running my 9-year old and 14-year old kids around pretty much pain free. (Sneezing still hurts!)
I'm taking the horrible flare as evidence that this treatment is going to work for me -- and that my onc hope/prediction that I could on with this for 3-6 years before moving on to something else will ring true. I have to admit, though, that I'm a bit frightened by how fresh on the wagon everyone seems here. How many fanny pack sisters have been on Faslodex for 3+ years?
Warmly,
Suzy
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I'm on Cycle 2, Day 1 of Faslodex tomorrow and have had a horrible week with flu like symptoms, achy torso, spine, aches that jump all around the place from one day to the next. My tumour markers have 'flared', could also be the trial drug, Palbociclib, that I'm on. Never felt like this the 9 years I was on Femara when I was stage 3 , nor the 7 months on Abraxane. Hope it settles and it's kicking the tumours in my liver as well as me!
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Suzy, Faslodex has been my sole treatment for three years.
Fitzy, sorry to learn it's been rough for you, but maybe it is the Palbociclib, as you say.
Everyone reacts to Faslodex differently in terms of SEs, but the main complaints here seem to be pain and itchiness at the injection site, sore butts, lower back aches, hot flashes and other symptoms of estrogen deprivation, such as weight gain. Hang in and hope that things will improve with time.
Tina
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hi Birdlady and Highhopes! Wanted to say thank you for your words and thoughts!
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Hope radiation works well for you, Skylotus.
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Hi all! I was diagnosed stage iv in April. Tamoxifen didn't work for me so they shot me full of Lupron in May to chemically castrate me then started me on Faslodex in June. I've now had 3 rounds of Faslodex and I'm having a strange side effect - my skin hurts. It's localized to my stomach, sides and back and it is very uncomfortable. I also have back and hip pain, which I know is common.
Has anyone else had hurting skin? If so, did you find anything other than pain meds that helped? I feel like a Motrin addict because I'm not ready to pop the top on the Vicodin they gave me. Am still working every day and I'm afraid of getting addicted to the Vicodin.
Any advice is greatly appreciated!
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Terri, I have a fair amount of soreness in my butt, particularly around the injection sites, but I can't say that my skin hurts. I have no idea why this might be happening to you. Maybe it's some sort of allergic reaction. Have you told your oncologist? If the skin pain is so bad that you'd consider taking Vicodin, you need to discuss it with your doctor ASAP.
Tina
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Tina - I called oncology a couple of days after it started and was told it was a side effect, but the list says tingling feeling and that isn't how I would describe it at all. It feels more like the skin is raw, but there is no redness or heat and I tried a benedryl but it didn't help.
You've been on Faslodex for a while now haven't you? I'm very happy that it works for you.
I have mets in one of my adrenal glands which I was told isn't very common, I wonder if that could be the reason for the skin pain.
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Terri-c, how about trying hydrocortisone cream? Directly on the skin? I had an itchy rash the first month or two. Cream helped. After the third or fourth round the rash disappeared never to return.
It's over the counter -- just ask the pharmacist.
Take pain meds regularly for a few days to get it to stop. i.e. Motrin every 6 hours without fail for three days. That should prevent your needing vicodin. Though, if it hurts, take the vicodin. I would have thought the pain would go away after a few days. You've had the loading doses, so now have a month off. :-)
Oh, and welcome to the club. Very glad to meet you. (We're in the same boat -- Tamoxifen failed me too, after four years)
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pajim - that never even occurred to me because there is no rash, but I have hydrocortisone in the medicine cabinet, so when my current dose of 3 motrin wears off, I'll try the cream. Thanks!
I am doing everything I can to avoid that Vicodin. I have never taken it, and have no idea how it will affect me.
I can't say that Tamoxifen actually failed me....I was only able to take it for 3 months before the side effects were so bad that my oncologist told me to stop taking it. I had horrible, debilitating headaches and nausea so bad I could not eat. The day I took my last one I hadn't actually eaten in two days, and it did not stay down.
My cancer is caused by a childhood chemical contamination, so every treatment is iffy for me, we have no way of knowing how my body will react.
How long were you getting the Faslodex before you got your first scans to see if it was working? My TM's are normal, so we can't tell from those. At this point we know I have 11 tumors, but my insurance company denied the Pet Scan (it was requested before the biopsy, so they deemed it experimental). The expectation is that when its time for progress scans they will approve the Pet this time.
It is nice to meet you too. I registered on the boards a few months ago when I got the IV diagnosis, but I haven't posted much. I really need some friends to talk to who are in the same situation as me, because you guys understand, whereas my real life friends don't understand that treatment won't cure me
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I had scans every six months for the first year. Last one showed no evidence of active disease, so the next set will be nine months later. If that one is clear (September), I imagine the set after will be a year later -- Sept of 2015. PET/CTs, all of them. There was some discussion with the insurance company, but the cancer center took care of that.
Don't be afraid of the vicodin. If you're in pain, take it. There is absolutely no reason to suffer. It's possible you could alternate? I'm not good on pain meds. [My suggestion about taking motrin every six hours came from a doctor friend of mine and worked when I was trying to step down from percocet to advil] Other ladies will have some suggestions. There's an excellent thread on this forum about pain.
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Does anyone have leg pains while on falsodex and also loss of appetite am on a trial drug besides so not sure which one if not both are giving me these symptoms.Was a Femara for 4years never had any of these symptoms
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Patti, I think loss of appetite is a possible side effect. I don't have that problem right now, but I do have hip and low pack pain, as well as little nerve zingers in fingers and toes. Nancy
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Hi Ladies,
I'll be starting Faslodex in 2 weeks...I'm adding it to Afinitor and Aromasin (which have worked well for 14 months, but now my tumor markers are rising quite a bit-my onc and I just decided to add Faslodex.) Thank you for all your posts. It has helped me know what I may be able to expect. I see, like the other treatments, SE's vary a lot.
Julie
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Welcome to the Fanny Pack, Julie.
Tina
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Hi All! I just had my 3rd round of shots, 2 weeks apart, this past Thurs.. Fri started a backache, that Sat turned into left hip and knee throbbing pain that was almost unbearable. Sun I could barely walk. Feeling "normal" by today, Tues.. I'm thinking it has to be the shots! Has anyone else had such an experience? In other news, my tumor markers jumped again by 130+ to 611, but Doc says not to worry, and I still have 9 more radiation zaps to go....and I'm counting.... ;-/
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I suppose it could be. Or could it be the radiation? (unlikely if it's gone away). good news is that you're done with loading. You have a month off and it might not happen again.
Welcome, Julie!
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Thank you for the warm welcome, Fanny Pack Sisters!
I'll be starting in 1 1/2 weeks. I'll let you know how it goes.Love,
Julie
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Welcome Julie. Sending you good luck with the treatment.
Skylotus - sorry that you're experiencing side effects. Hope that the next round won't be as bad.
I just had my second initial dose this past Thursday. So far I've not experienced any pain or side effects.
Take care one and all
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skylotus,
I had my first Faslodex last Friday, and I had shooting pain in my left hip , upper leg and back. I had to take pain killers.
I could hardly walk, it was the same thing than you, but just my left. weird. It still hurts, and I can walk, no problem, but i cant run, and I am looking forward to have a good run again. Me too, 2 weeks apart, .....just like you.
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Hi All, well, if anyone is going to have side effects (or any other repercussions) it's me, no joke. At least I get the shots once a month now going forward, as Pajim pointed out ;-). But, next time I'm going to make sure they are warmed up and pushed slower, thinking maybe that had something to do with it? Who knows.
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Skylotus, Ask if you can hold the syringes to aid in the warming up. It worked for me.
Mamita49, so sorry you are experiencing such side effects. Hope it clears up and the next one will be better.
Sending you good vibes that you will be feeling better.
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Warming the Faslodex is essential to the happiness of the patient. Don't let them skip this step. Ever!
*susan*
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Warmed up, slow administration, plus the injections are supposed to be given only in the upper outer quadrant of the buttock, well away from the sciatic nerve.
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Today is my treatment day. Blood work, onco visit, Faslodex/Zometa treatment. Last month I did better than ever with limited SE. I hope to have a repeat of that. I asked them to slow the infusion. I don't know if that is what helped, but I will let you know.I had a great weekend with my kids and my baby granddaughter, so I am happy and ready to go. Not my favorite thing to do, but I still feel very blessed that I have been having great results with the Faslodex. That keeps me happy to be a member of the "Fanny Pack"!
Hoping you have a pain free day.....Birdlady
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