Faslodex Girls
Comments
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That makes sense about using heat. I did go for a walk, which helped. I asked the onc nurse, "You do get used to this, right, so it gets better each time?" Long pause. "Um, no, sometimes you are just sensitive to it...you'll have to schedule it so you have the weekend off, I guess..." Gah.
She suggested 800 mg of ibuprofen. I told her I was already on oxycontin, and she said that helps with pain (which it wasn't) but that rather than increasing the narcotic, I should try ibuprofen because it's an anti-inflammatory. I tried it, and it really helped.
I also started Xgeva at the same time, so I think some of the bone pain might be from that. It's kind of a weird, ricochet-kind of feeling up and down my spine and into my legs.
So I'm thinking next time I need to walk a lot afterwards, then use a heating pad and ibuprofen, plus benadryl for the itching. I am hoping the more prepared I get beforehand, the easier it will be.
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As I read these stories of side effects and discomfort, I am thanking my lucky stars that the Faslodex has been just about the easiest med I have ever had. I am usually the "queen of side effects" except "loss of appetite." I have NEVER had a loss of appetite!
Wish everyone was having an easy time of this Faslodex.
*susan*
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I just got round four this morning. Last month was the first time I had a month-long gap between shots, after the three loading doses in January. Also found out my tumor markers rose from 36 to 47 during the past month, after falling steadily down from 108 to 36 over the past year and a half on Femara.
Dang it.
Onc said she wants to give it another round to kick in and then do another PET scan in April, after round five, and see what's happening. I really hate tumor markers sometimes!
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Raro, the first time they added the Zometa to the Faslodex - I had such pain in my knee, I could not get up and walk. My husband had to help me stand and support me while I tried to take a few steps and after that I could walk on my own but with difficulty. That lasted for about 4 days and nothing touched it. I haven't had anything like that sense.
Lulubee, as I said my oncologist said it would probably take 6 months to know if it is working. I looked at the Faslodex website and I think it says will have to be on it 4-6 months before improvement will be seen. I think I am about one month ahead of you - my scan will be late May or early June. Let's just hope scans prove that your tumor markers are off.
Susan, my appetite is less but that doesn't mean that I've lost lost lots of weight from it.
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I've been on Faslodex since August of last year (2011) and monthly Zometa since 10/2009. We waited 5 months to do a PET/CT scan and these showed I was stable! Yes I still have mets throughout my skeleton but I ran with this news and celebrated. (My onc doesn't do tumor markers as he believes they're not reliable.) We're waiting 4 months to do the next scan. In the meantime I've had random SE's, different every month. Pain at the injection site is the only constant.. Last month I felt every bone in my rib cage, who knew it was so big! This month my right hand has neuropathy but the rib pain is gone except for one spot. Overall the pain in my hips and neck have lessened to almost nothing leading me to think the medicine is kicking canzer's butt.
This site gives me so much support! Knowing others are out there fighting this aweful disease makes me feel less alone, encourages me to keep fighting. thank you..
Sarah
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I've just had my first MRI scan after four months on the Faslodex/Zometa combo. After my oncologist and radiologist closely examined my scan they declare I am stable. They say stable is good and the most desired outcome because my mets will never go away. I'm sad about that but, what can you do? I've decided to be very, very happy about being stable!
I am blessed to have very mild side effects after both drugs. I get my blood drawn first and so far, it has come back normal (I don't take vitamins or supplements). Then, they do an IV saline flush. The nurses hang a plastic bag containing Faslodex on my IV pole so it can warm to room temp while I get an intravenous steroid. The steroid prevents the body aches & flu like symptoms I had the first time around. After that, I get the Zometa then, I get a shot in each butt cheek. The nurses always go slow with the injection. I have some pain from the shots but,Advil and heat helps it fades away after a few days.
I'm sorry we have to meet under these circumstances but, welcome to all "newbies"--you are in my prayers!
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it is really helpful to have this board!! i am going back to onco tomorrow for what will be my last of the loading doses. i would say i feel somewhat better than i did a week ago when i first posted but i still have bouts of nausea (lost about 8 pounds) and the leg pain is worse on some days. i am going to ask him about giving me an IV steroid, if this can in fact help with the body aches and flu symptoms and leg pain. in addition such exhaustion!! one night i can sleep for 13 hours and still feel like i haven't slept, last night really didn't get much sleep at all.
thank you everyone for sharing your experiences!!
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i thought of another question, for those of you who have experienced some nausea....how long did it last? tomorrow will be 2 weeks since my last shot and i have been having nausea badly today. i have no idea how long it usually lasts and i am beginning to wonder if it could be from something else...like my gallbladder...
thnaks everyone!
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Sometimes the shots disrupt my sleep cycles a bit. I have found Advil PM is wonderful for the first few nights following the injections. It helps with pain and inflammation and I sleep like a lamb straight through the night. It's 200 mg ibuprofen + a little shot of diphenhydramine, which is the same thing as Benadryl. The shots can make you feel so crummy, the least you can do is make sure you get enough sleep to feel the best you can!
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Salt, I have had some nausea throughout the month - even up to the week prior to the next injection. I thought that was kind of unusual but oncologist told me just to use my Zofran every day - well I don't. I deal with the nausea when it happens. It isn't every day and sometimes I will go a week. Not sure why but have had increased fatigue with the Faslodex and Zometa this time but then I had just ended 10 radiation treatments to my hip and don't now if that added to the fatigue.
Lulu, something happened to me this last time I didn't have happen before - I bled after one of the injections. Bled through the little bandaid and onto my clothing. Hoping it was just because of who was injecting as I'd never had her before. In fact this last time, I didn't know either of the chemo nurses.
Is anyone else having a problem with their potassium dropping? I get both injections at the same time; they do it on a count of three and I lean on the arms of the chemo chair for support and bend my knees a bit. That is just how the facility apparently gives the Faslodex.
Aerial, congratulations !! I hope at the end of May/first of June, I hear the words stable too. My bone mets is extensive too. Hoping you continue to hear the word "stable".
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I was surprised how much blood was on my bandaid the last time I took mine off in the shower. Maybe your nurses need to use bigger bandaids.
I think because the needle is in are muscle for so long, there's enough time for blood to flow out. I mean, what other shot have you ever received that takes a full minute?!
And Nanian- why do you get both shots simultaneously? My nurses do one hip at a time, and that way I can lean on one leg while they do the other. It takes a bit more time, but I'll bet it's less painful.
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Sandilee, I've never had a drop of blood from my 4 previous injections. Was just surprised. That is just how the cancer center I go to gives the injections to the majority of their patients. They did offer doing one hip at a time but when I got the first one they told me they felt it was just as easy to take both at the same time and get it over; that most women preferred getting it that way. . It is ok with me - get them over with at the same time. I have read some that lay down and get one at a time, some that get one at a time standing and a few of us that get both at the same time. Only pain is it feels like a bee sting when they start to inject. `
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For my first injection ( I have just started) I got lupron and 2 faslodex. The lupon and 1 faslodex did not bleed but the other faslodex bleed about an pea size amount. They also do one hip at time.
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Nan--Thanks for the congrats on my stable MRI results! It's my prayer that you get the stable results, too!
In fact, that's my prayer and hope for all of us! Keep taking care of yourselves and keep giving cancer the "stink eye!"
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hi ladies!!!
well i saw the onco yesterday....he isn't convinced all the pain/spasms etc. i have had in my legs is from the faslodex...i just looked at him like "really"? he told me the "normal" s/e were chills, fatigue, hot flashes (#1 s/e) and nausea. said the way the faslodex is made is why the nausea can come and go. he did give me a script for zofran but said it starts to lose it's effectiveness if taken all the time.
this is what i have found works for me and the nausea....over the counter, called "bonine" used for nausea from motion sickness...it is meclizine. i just chew a little bit of the tablet, wait about 15-20 min. and if i still have the nausea, chew a little bit more. so far, this has helped! yeah! i saw my family dr. today (also a breast cancer survivor) and she gave me a gold star for thinking that one up all by myself. i asked her why i only have the nausea during the day, doesn't bother me when i am sleeping (which i am thankful for). she wondered whether this could also be excess acid and i am going to try pepcid or zegrid and see if that helps as well..
and yes....i got another round of shots yesterday, will pray i don't have the pain that i did. have been given the okay from the onco and family dr. to use prednisone if i need it. i will now be monthly and praying daily that this works and tumor markers go down...
i have had 3 different nurses give me my shots and here is my opinion....the amount of pain from the shot has everything to do with who gives it to you, and where they put the needle!!! the first nurse did it very, very slowly up higher on my hip and i had zero pain. the next nurse did it much faster, a little lower and i had bruising and some pain. the nurse yesterday while a sweetie put it much too low, so that if i sit, i am sitting on the injection and again did it much faster than the first....lesson learned.....ask for the first nurse from this point forward!
aerial...i like the idea of giving cancer the "stink" eye, since i live in part of the country with those nasty stink bugs...
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THE FASLODEX IS WORKING!
Just saw my Oncologist and both my Bone Scan and CT Scans are normal. NO PROGRESSION! Yippee!
I am celebrating with Chinese Food! So Happy!
I will have some other test to determine why I am short of breath, but at least it is not a progression of cancer in the lungs!
Susie
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SusieMTN -you have something to celebrate; so good to read your good news. How long have you been on the Faslodex? Thanks for letting us hear the good news.
Salt, I know my oncologist told me he had found most women on Faslodex had nausea, fatigue, joint pain as the major side effects. I just didn't expect the nausea to hit at anytime. I didn't think the Zofran gave me much relief from my nausea - an Ativan under the tongue does much better if I have to have something. Will have to try your solution. Dang, one of the hot flashes just hit and what I would give to have an ice pack about right now - anyway, was curious about the muscle spasm/pain thing. I'm sure you have looked at this too, thus your comment to the oncologist of "really" but here is the list of the most common side effects from the Faslodex website. It sure says "muscle/joint/bone pain".
"The common side effects were: injection site pain, nausea, muscle, joint, and bone pain, headache, tiredness, hot flashes, vomiting, loss of appetite, weakness, cough, constipation, shortness of breath, and increased liver enzymes "
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susiemtn - congratulations!!!! you must be walking on air!!!!
naniam - thanks for the listing of side effects. when i told the onco that my family dr. told me the same s/e you just mentioned his response was "oh every medication has the same list of s/e" well...neither i nor my family dr. agree with him on that.
and i have the same thing...i never know when the nausea is going to hit...try the bonine and see if it helps....i might get some ativan (under the tongue i had never heard of) and give that a try as well. do you have it at night in bed or just during the day?
i should probably knock on wood when i say this but thus far i haven't had hot flashes that are too bad...did i just jinx myself???
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Naniam I have been on Faslodex since about July of 2011. It is so nice to have evidence that it is working.
saltair - I am so HAPPY it is working. Since I had such a hard time with adverse effects with the AI's and Tamoxifen, it is nice to have something with no side effects and something that actually works!
Susie -
Salt, I try the Zofran but it doesn't usually work. If you work Ativan under tongue can make you a bit sleepy but I use it when the nausea hits. . I'll try the Bonine.
Susie, great that Faslodex is working so well for you. My 4th monthy injection is approaching. Always glad to hear good news
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I'm embarrassed to "show my face" here. I've not been on the thread for some time. I'm enjoying reading the good news. I try to block the bad stuff out of my mind.
sarahky, Aerial, SusieMTN, CONGRATS on being stable. I'd be happy with that too! It doesn't take much to make us happy!
salt, lulubee and Naniam, I don't remember having nausea when I first started the injections. But, I have woken up with some nausea a few times recently. I wonder if this is from the injection. I usually take a Tums and it goes away.
Aerial, do they scan your whole body with an MRI? I would love to have that done. I have CT scans and bone scans and I hate all the radiation.
Like Naniam, I seem to be more fatigued. It certainly is no fun especially when you have the grandchildren around. I hate it! I will come back sooner to check back in. I did have my injections, Faslodex and Xgeva, February 28. My next ones will be March 27 with CT scan and bone scan and of course blood work. Then, after all of that I see my onc to find out the results. It's VERY long day and by the time I see her I'm ready to run out of there!
Fingers crossed for ALL of us.
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All,
My lower back pain is turning me into a cranky lady. How much is caused by osteoarthritis? How much by the Faslodex? I saw my PCP for this a few days ago. She thinks my lower back muscles are in spasm and suggested I see a back specialist who is a surgeon. I am extremely reluctant to do this. I just want a diagnosis of what's wrong with my back; will a surgeon be able to provide it ? How likely is he to know anything about Faslodex or what it does or doesn't do? I have never been so hesitant to see a doctor. For some reason, I feel it's just going to cloud the issue and add to my problems. Should I just assume it’s the Faslodex, be grateful that it's keeping the cancer stable, and suck up the back pain and discomfort,which seem to be worsening? Is anyone else feeling as if Faslodex might be crippling their movement?
To top it off, I became suddenly, violently ill the night before last. Although I have had some intermittent nausea from Faslodex, I am not and never have been a “thrower-upper." I lost control at both ends (yes, incredibly awful) three times, to my vast embarrassment and concern. I was knocked out for the entire next day. Faslodex, flu, food poisoning or…?
Yours,
Tina (aka Wendy Whiner)
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I share your concern about the referral to a surgeon for what could be a side effect of a medicine, and the referring doctor should sort that out, first, before making a referral to pass the buck. (but this has happened to me in the case of other medicines, and most often they just do not know, so this is what they do.)
If it is a side effect, and likely the surgeon will not know about faslodex side effects, the surgeon could end up treating the symptoms of a side effect?
I hate this part of having to supervise these doctors.
I would ask the faslodex prescribing doctor how to be sure this is not a side effect of faslodex and your pre-existing arthritis, before getting another doctor involved. Make it their responsibility to diagnose the side effects of the medicines they prescribe, because it is their responsibility.
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You are NOT a whiner! Chronic back pain is horrible.
I do believe one of the SEs of Faslodex is lower back pain. Absolutely ask your onc or whomever prescriibe the med about this. A surgeon? That's overkill.
My PCP ordered me a bone density. I got to thinking about it and knowing I'm on Faslodex and Xgeva I decided I should ask my onc about this. She said that I didn't need a bone density. I didn't think so...not at this time. My PCP has no clue what's going on with my mets. Having a bone density would have been a waste of money and time.
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A few things I would be asking and considering if it were me (and sometimes it is!)...
Are you on something like Xgeva to protect your bones?
Does Advil or hydrocodone ease the pain?
Have you tried a muscle relaxer like Valium?
Does it get worse after your injections and then ease off, or does it hurt all the time?
Do your scans show disk degeneration or collapse?
Maybe the answers to those questions could lead to some pointers as to what is causing it. For instance, if Valium eases the pain, then maybe it's tense muscles.
Whatever it is, I hope and pray you'll get some relief. Back pain is misery!
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Tina, I have low back pain and I had an MRI about 2 years ago - there was a question of mets at the time but I then had a PET and it said no cancer. We have treated me for degenerative disc disease, buldging disc and PT helped but I finally did the radiowave nerve obliteration procedure and it last for months and brought wonderful relief. I have seen since that it is also used for pain from cancer in the spine also. I have mets throughout my entire spine, but especially my low back and most other bones. Not sure when you have had a scan but it might be time to do that again. I don't know now how to know if it is my degenerative disease (osteoarthritis) or my bone mets. .
I am probably all wet on this but I thought the "cancer flares" we get were normally with the first doses of Faslodex. The first time I got it my low back pain was awful. I am due my next Faslodex on Monday- this upper arm pain started 2 weeks ago so I don't think that was a flare from the Faslodex.
I agree, I don't think a surgeon is the one you need to see. I would go with a Pain Management Doc - I got no relief from the steroid shots and that is why we started with the radiowave nerve obliteration (just puts the nerves to sleep). My back is starting to hurt again - I just had the last treatments in July or August so I'm counting on them doing them again.
No surgeon, would ask about a scan or MRI of my low back; find a great pain management doc for your back. I really feel for you- you hurt all over when your back hurts and it does make me a bit grumpy too.
I have had some episodes of Nausea (not a normal throw-er-upper either) and I've had some pretty severe abdominal pain and loose stool after a treatment - not at the same time. Not sure if you just had your last treatment but with both those things happening and not having them before, sounds like more of a virus.
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Thanks, everyone, for your thoughtful answers, all of which will help me deal with this in a practical (non-overkill) way. I think many doctors have no clue about SEs. After all, they are dealing with dozens of medications and diverse patients in various stages. It appears to be left up to us to figure out what's what in those areas (like SEs) that physicians deem less important than keeping us alive. So, onward and upward--what choice do we have?
In the meantime, I raise a mug of coffee to you in a Irish breakfast toast!
Tina O'Whiner
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RE: Faslodex Side Effects
I had no side effects from Faslodex at the beginning. I didn't really care for the pain of the injection, but otherwise, nothing. But over the past few months, I have noticed some responses, and with each month they have become a bit more vivid. Starting 3 days before the next injection, I just feel "off." My fatigue level shoots up and I feel less "present." The actual injection seems less painful, but one hour later my stomach becomes wildly unsettled and I feel as though I could vomit. Only have twice, but I now make sure that my stomach is empty and I have soup in the fridge for my next meal. My injection sites now experience low grade pain along with itchiness for much of the month. And finally, I get an infection pretty consistently three days after the injection.
At this point, I have been getting monthly Faslodex injections for 22 months. Just think my body responds more violently as it adapts to this monthly drug. None of these side effects are as bad as those I had on the aromasin or the chemo before that, and I can certainly tolerate them for the results that I am getting. For me, the side effects have started to be cumulative.
Just another person's body's response which seems fairly different from those I have read on this thread.
*susan*
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Susan, what sort of infection?
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lulubee,
I have had infections [or maybe inflammations, can't always tell the difference] in my urinary tract, surgical breast, sinuses, and gums. Generally, in two places each month.
Hope that clarifies.
*susan*
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