Faslodex Girls Thread
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Giving IM injections is a skill. The injections should be confined to the "upper outer quadrant" to avoid the sciatic nerve. If a nurse who is new to me is going to give them, I always ask--in a friendly way-- that she go high and slow, even at the risk of insulting her knowledge.
My onc's office takes the Faslodex out of the fridge hours before I arrive. Over time my regular nurse and I have discovered that numbing spray diminishes some of the sting of injections and using gauze and paper tape instead of band-aids helps prevent itching and hives. (During this adventure we found that the tender skin on my inner elbows and butt reacted badly to whatever adhesive is in band-aids. Who knew?)
Tina
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My mother's debilitating back pain that started immediately after Faslodex is now being chalked up to progression. Her CT scans showed stable disease but her blood calcium levels began to rise and she is very anemic again, which the onc says means the Faslodex wasn't doing it's job and the cancer is not controlled. Back to chemo and now also rads to the T10, T11, and T12.
It's scary how bone mets can't be reliably tracked with CT and bone scans. Thankfully, her onc is amazing and sees her right away when there's a change in symptoms.
Thank you to all the ladies who've offered advice during my mom's very short run with Faslodex. I hope Faslodex kicks cancer's ass for all of you for a long time
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Thanks rpoole,
PT was really hard yesterday since the pain was so bad. My therapist pressed where the shots go in and the pain shot up to where I get my spasms.
This is the worst pain that I have ever had.
Left a message at my chemo center to ask if I can skip the shots this Friday.
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Denny123, if your back spasms are really related to an issue with your hip or knee I wonder if a massage therapist could help? I have a go to person whenever my ankle or knee goes out. She does injuries and loosens everything up for me.
mascarecrow, I second the concept of talking to your doctor or nurse about rage. That does seem unusual. Menopausal mood swings are perfectly normal but rage is another thing. One other thing to think about -- I've noticed over time that the first cycle or two of a new med is much harder than the next. Somehow the body gets used to metabolizing whatever but it takes a little time.
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Denny, Sorry you are experiencing so much pain. You and I have been receiving Faslodex about the same number of years. I started in April 2011. I can say that the shots are more difficult to administer now as I have, and most likely you do as well, lots of scar tissue. I've had some back issues and spasms as well but they are mostly related to spinal surgery I had. When was the last tine you had a scan?
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Thanks ladies for the info on the location. I guess I won't ask for it to be towards the center because I don't want to risk the nerve. But I dread getting in the sore spot. Oh well could be a lot worse so I will enjoy my shot day, which means I get to leave work early.
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Hello there, im new to this site, my question is my treatment is Faslodex once a month and ive been doing this for about a year. I have chronic lower back pain that is very painful, I had a pet scan and MRI nothing shows up. Does anyone else experience this ? It is worst on the day i get my shots. Thank you....
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Welcome Nikster to the thread and to our community!
We hope you find them helpful in getting answers and peer support.
Feel free to reach out to us via private message with any questions or comments you may have.
Sending our best wishes,
The Moderators.
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Nikstir, I have only been getting it one month and I have minor lbp, but I'm pretty sure this is a known side effect. It's the first thing my onc asked about. I'm not sure if it's the medication or if it's because of the injection site.
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Well I had my third set of shots yesterday and she did inject slighty more center than last time. It was much better and I didn't feel that rush of numbness down the sides like last time. Glad to have not further irritated that are and now I will have a month in between. Since I will probably have more appts now than before, my boss encourage me to sign up for intermittent FMLA so I can use sick time instead of vacation for anything medical. We accumulate sick time at half the rate of vacation and it can only be used for long term illness, such as surgery and maternity leave. This way I can use a day or a few hours here and there. Something to consider for those of you who still work.
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Thank you to Moderators and HLB, so nice to be able to talk to someone who knows what your going through...... Keep fighting and have a great day
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I had a real hard time on Tuesday at PT, since I was unable to sit and do the back exercises. Yesterday I talked to my chemo nurse and asked about quitting the Faslodex shots. But she would only delay them for 2 weeks and suggested that I see my PCP about a muscle relaxant.
So I have an appt tomorrow with my PCP.
Last night was terrible. I was in this computer chair for about a half hour (I have a store on eBay and have to get my computer work done).
I got a spasm when I stood up and it lasted for 45 minutes! I actually had to crawl up my steps to get upstairs. Was trying to get around my house to get to the Motrin and then the spasm just stopped.
This is crazy.
My last PET scan was May 4 and it is clear as far as any bone mets or tumors.
I am supposed to avoid Motrin, etc, since I get severe nose bleeds from the chemo Kadcyla that I am also on. But since a muscle relaxant will also thin my blood, I will have to take the chance.
Not sure about massages-will be sure to ask my PCP.
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HLB- good luck with the shots! Where in PA are you? I am 35 miles SE of Pittsburgh.
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Hi nikstir, Welcome to this forum! There is a lot of good information and support here, and many good people who are in the same boat as you are.
In answer to your question, I was dx'd with bone mets 2 years ago and have been on Faslodex for about 14 months. I had terrible back and sciatic pain a few months prior to dx. It slowly improved, but is always there and gets worse with activity. My last PET showed me more or less NED, but I still have lower back pain most days. So, that is the long answer, the short answer is yes!
How long have you been stage 4? Is Faslodex your 1st treatment? Do you take any meds for your back pain?
Hope to see you around!
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Denny, The makers/researchers of Faslodex is AstraZeneca. You may want to call them and ask about the SE's you are having. You can ask for the research pharmacist at AstraZeneca. I'm guessing you may be having a reaction to Faslodex. I had a similar reaction to Xgeva. I use a Lidocaine patch occasionally which helps a bit. It's 12 hours on 12 hours off.
My experience with muscle relaxers is they did not do much and I got terrible Acid reflux after 2 days. Let us know what your pcp says.
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Thank you Denny! I am in Linglestown, a small town just outside of harrisburg, PA. I used to love going to Pittsburgh on weekends with a bunch of friends to hang out on the south side and to get Primanti bros sandwiches. I hope you can get the back pain resolved! I would think the relaxers would help with the spaasms but probably also need some kind of pain med. When I had expanders they gave gave me pain meds plus percocet to alternate because the chest would get spasms and really hurt right after surgery! They did it for many years especially when comin in from the cold. Luckily it didn't hurt except in the po period. I can feel a mild pain in lower back if I push a certain area that started after I started getting the F shots. It feels like the bone is sore there. But not even a 1 out of 10. Hopefully it's not progressive. I am lucky so far to have never had any pain from treatments or mets. Anyway I like western pa a lot better than here. people are a LOT nicer. I lived in Altoona until I was 8 and even then I could tell.
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Nickster, keep coming back! You will learn so much more here then even from the dr. Everyone here is wonderful and happy to help and support.
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Thank you jobur....Was diagnosed with stage 4 in 2010.faslodex is my second treatment amon in not sure of the spelling was my first it stopped working in Jan the cancer spread to my bones ribs and shoulder. The shots are very painful for me and have extreme back pain, can't take pain killers so just take advil.... any suggestions on something else to help with the pain. I really want to see if there's another treatment ??? Thanks again, means alot...😆
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I got my second injection yesterday. Right side hurt because she had move a bit from last time since there was still a lump. But, fine afterwards and today.
Blood work is rebounding from 3 weeks off Ibrance, but fatigue is still an issue for me. I'm trying to keep moving more. But, I did notice something on the lab work that wasn't mentioned by my NP- monocytes are up quite a bit- higher than anytime since last November when I was in the hospital with my femur pain (which is fine after rads). Anyway, can this rise be explained by Faslodex fighting the cancer and/ or my antibiotic fighting my sinus infection?? Your experience and knowledge on this are appreciated. Don't like the stuff I read about bone marrow/blood cancer stuff.
I can follow up in 2 weeks if I'm still worried.
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Kaption, Deanna and Pajim:
I ended up calling my Onc Nurse for help right shortly after posting here. She said a pms reaction is not unheard of but that mine seemed to be a bit more extreme than normal (ok, she said she'd never heard of anyone having it that bad before but I'm trying to look on the bright side) They gave me some progesterone to take in the evenings with my lexapro and I give that a 'bump' with a .5mg atavan if I feel myself sliding off again and it has helped immensely so far. I'm back to my regular old self again (well, a touch more irritable than normal but nothing outside what I would experience after like an exhausting day and thank god the random crying stopped. I should have bought stock in Kleenex) and so far I am holding pretty well with it. Yay for being rational again! The plan is to watch it (due for more shots on Monday... ugh) and see if my body adjusts to the change in hormones. I have a history of postpartum depression so I'm not terribly surprised to find out that I had trouble with hormone flux (and I did warn them about that before I took the first dose). I am also trying to understand exactly how faslodex works and its effects on hormone levels in the whole body but between my computer access and recent schedule I have not been able to spend as much time as I'd like on it. Such is life
Anyway I just wanted to pop in and let you know I got a band aid and nobody got hurt in the process!!! I have a hard time (and always have) talking to them about side effects. I keep saying there's no need to suffer and its not whining and they might need to know cause of progression prossiblilities and stuff but I feel like a whiner and if I can tolerate the headaches/joint/muscle pains why bother the busy people with little things like that LOL
My apologies to the group for busting in picking brains and asking for suggestions without really introducing myself or being an active member. I'll get on fixing that shortly
You guys are wonderful and I cant wait to get caught up with the recent conversations and get to know everyone and hope I can offer some help to someone else i the future.Hope the hibiscus are flowering where you are! One of ours exploded yesterday and I'll try to figure out how to share the picture!
Mascarecrow
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Mascarecrow,
I'm so very glad you updated us and extremely glad you spoke to your medical team about your symptoms. NEVER hesitate to do either/both of those. That exactly why we all come here.
As far as telling your docs about se and symptoms- you must. They have limited information, even from all the lab numbers and scans. My RO said something that was an "aha" moment to me the other day. He was walking me through the lit up areas on my last PET, explaining what was larger or smaller, what was new, what might cause future problems. (All bone) Then he turned to me and said, "You know, no one can look at this and tell what pain you are feeling." That part is up to me. Same for all symptoms and reactions. Your talk with your team is critical for their work. And the emotional side of cancer and medication se is critical. Like Deanna said, these are powerful drugs.
Continue to take care and commuicate with your oncs and any and everyone who will help.
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wow thanks you for that.... ah ha moment. I think we all tend to try to be so strong and hold everything in, such a valuable lesson. Unfortunately pain comes with having cancer, that part sucks. Talking with you brave women helps. Thank you.... Keep fighting the fight ! ❤
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Good luck to you and welcome. ❤❤
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Mascarecrow, you should always reach out for help. Us, your medical team, someone. I'm so glad they got it licked and you're feeling better.
Someday you'll be the one passing on suggestions to someone else who is hurting. . . :-)
It is OK to tell your onc that you're having joint pain but you don't expect them to do anything about it. Believe me, they want to know. You're not whining. And you never know, maybe they have a suggestion or two to help.
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I've been off the site for a few days (maybe more than a few) and am thrilled to see that the subject of muscle spasms, pain, etc. has come up. I have been having cramping for months in the weirdest places and haven't been able to get anyone's attention - last week my upper back, my forearm and hand started and I had a panic attack - ended up at the PCP's - had scans just a few weeks ago, blood work is fine - she suggested I take Lyrica (doesn't work for me for neuropathy so I declined) then NP at Cancer Clinic suggested Advil (which I can't take because of bleeding problems, pharmacist suggested muscle relaxant but I tried that two months ago when lower back spasm for 24 hours - I had an atypical reaction and was awake for the better part of two days - I have taken Ativan and it seems to work probably because relaxing helps but can't take that every day I guess - bottom line is that se is listed as "mild cramping" jeesh - who writes this stuff - deep breathing also works if only to keep myself from flying off the walls - if anyone has a solution I'd love to hear it - meanwhile I keep putting heat and cold packs where and when I can.
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208Sandy,
I too have muscle cramps that my MO said is from Faslodex as he has a number of patients that experience that as well. Mine are my hands, feet, calves, and occasionally thighs. Have you had a comprehensive or basic metabolic panel run lately? I just did and my potassium is low which accounts for some of the cramping. You might want to have that run if you haven't already. This is what I've found out kind of works for me. I drink lots and lots of water. No soda or coffee as they lead to more cramping for me. I eat as much high potassium foods and magnesium as a I can. I stretch a good hour before I go to bed. Meds wise, well, muscle relaxers just give me acid reflux. I have spoken to a researcher/pharmacist at AstraZeneca who is the drug company and they confirmed that muscle cramping is a SE. They are the ones who told me to stay as hydrated as I can. I also drink Powerade for electrolytes and that too helps some. I then switched to one shot or 250mg. for a number of months and that eased my migraines and cramping. Not gone, but better. Now I'm back to 500. I like your idea of deep breathing. How long have you been on Faslodex?
Mascarcrow, Glad you are better. I had a scary crazy experience like you described, but with Dexamethasone. Oh my, will never take that again. These drugs are powerful that's for sure.
Best to all....
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Kaption - Well said. I might print/copy that to the front of my onco notebook where I write my questions and take notes that way I remember and stop not asking them.
Pamjim - I hope your right! I hate the idea of taking and not giving back. Just got my second shots yesterday so I guess I shouldn't expect much more out of myself than "me too" type posts lol
Speaking of Me Too! I have had killer cramps and aches in my leg muscles and joints the past few weeks. Was chalking it up to the weather which cant decide if it will be dry or wet or hot or cold... but it started a couple days after my first shots and while its funny watching me get started, once I'm moving I'm ok but heaven help me if I sit longer than an hour. Its like watching a 90 year old get up lol My FIL is in rehab from an extended stay on SICU and I go down daily to help and talk to the doc's and its a little over an hour for me to get there. I hate getting out of the car and moving across the parking lot like I'm a patient instead of an advocate lol I started hitting the grape juice (a glass a day pretty much) and the multivites (when I remember... I need a system for those) and it helped the cramps but not the joints. I cant decide if Advil is making a dent in it or not because its always there to some degree or other.
Anybody else thirsty? I cant get enough water! While hydration is good, I'm thinking its either going to be a cathedar or an office in the bathroom so I can just pee my day away...
Ma
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Wanting to stop my faslodex shot for a few months to see if the horrible back pain can ease up..... Any thoughts on this or is it even possible
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I have a similar question to nikstir's. What about doing Faslodex shots a week later than normal (so 28 days + 7 or so days) to allow for some travel? Of course, I'll be checking w/my onc on this, but just curious about the experience of others who may have run into this schedule conflict.
Ma, yes to constantly feeling dehydrated, although I wasn't sure if it was from the Faslodex or Ibrance. But come to think of it, I'm in my Ibrance off week and still extremely dehydrated. But we live in the desert, and although I try, I'm sure I don't always consume the recommended amount of water, which is something like 64 oz./day. And the "system" I use for my thyroid pill is to leave the container by my bed and turn it upside down after I've taken my pill each a.m. Then I turn it upside right at night. That way, I know I've taken it. Same for Ibrance. I take tons of supplements, so would never forget those. Also... one of the things I take that greatly helps w/the joint pain you're describing is curcumin. I like the Life Extension brand. It doesn't work instantly -- takes a few days or even a couple of weeks to build up in your system. But once it does, if you stop it, the pain returns within a day or two -- at least for me. Oh, and I've also found that when we have a rare humid period, I hurt more than I normally do. So I do think dry weather is noticeably better for joint pain, inflammation and such.
nikstir, do you think your back pain might be tumor flare (healing) from the Faslodex? I absolutely have more back and rib pain in the few days right after my shots, and I know from stable TMs and improved bone scans, it's healing.
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Nikstir, Yes it is possible to stop or take a break, just talk to your MO about it. I have taken 2 breaks in 5 years only for one month to give myself a break from the migraines and it helped. Insurance sometimes plays a role in treatment though. I can fudge treatment days 1-2 days on either side of scheduled treatment or else they won't pay. When I skipped a month I thought, oh no, now the cancer will spread like wildfire. It didn't. Hope you find relief soon. Insurance did not have a problem with that. When do you see your MO again?
I forgot about curcumin Deanna, thanks. Does that cause stomach upset/ acid reflux though?
I've had non stop hot flashes with the past few hot and humid days. My personal ( but crabby ) summer!
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