Faslodex anyone?

• By dj64
• Posted December 28, 2009 at 6:13 pm
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Hi Terri,

Faslodex was the drug I began after learning of my widespread lungs & pleura mets. I began with 2 shots. I had another sets of 2 shots, 2 weeks later, then when on to one shot a month. I was on them for 7 months. Then progression. I began Femara and continue to do well on this drug.

Six months on Faslodex, I began experiencing nausea and was given some meds. The wrong kind, as they made me sleepy and tired. I thought it was the Faslodex, but it was the nausea drug.

Femara has given me joint pains that I never experience on Tamoxifen, Arimidex and Faslodex.
I am also taking percocet for joint pain.

I have a real problem with my foot. Diagnose with chronic posterior tibial tendonitis dysfunction and awful arthritis (bone scan), having had all kinds of walking braces, I am beginning to think the real culprit is Femara.

I hope Faslodex works for you. Maybe give it 2 months before deciding. Femara might be still in your system. I was 2 months into Femara before the real foot problems began.

Good luck!

DJ

• By Kmungles
• Posted December 28, 2009 at 7:51 pm
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I'm taking Armidex and Faslodex, but my onc is convinced that a double dose dose is the most effective, so I'm doing that and I will continue this regimen till it doesn't work anymore. I did tell him to give me the big guns, so he called me on it and I;m getting the double dose. (Me and my big mouth!!) Actually Faslodex is not as big a gun as I have had in the past, I was in a research protocol that put me down three weeks out of a month. The Falsodex is certainly not as benign as I thought it would be. I have had the same side effects as what you had - I have had three double doses of it now, and the last one really kicked my butt (so to speak!!). BUT the down time is about a week - compared to to the possibility of something not working, so I'll take whatever it takes. The hot flashes are incredible, but my darling husband put in an air conditioner window unit in the bedroom and he swears that he can see his breath in there. It is extreme because we have two feet of snow and ice on the ground, but I just use it only when necessary; and he believes in keeping Mama happy because you know the story if Mama ain't happy, no one ain't happy. He's such a sweet, wonderful man. It can be really challenging with the hot flashes, neuropathology pain and severe hormonal issues. As far as joint aches, hydrocodone usually does it, but I do take the percocet when it gets too bad. Here's the rest of the arsenal that they have given me to fight the side effects: Besides the hydro and the oxy, I have been given scripts for veneflaxine 4 times a day (kind of an antidepressant that really helps hot flashes, as does xanax when needed, gabapentan for the neuropathology and joint pain. I have been told to take everything exactly as directed and not miss a dose If I do mess up the concoction, I really feel rotten. I have mets in my lungs, my pleura, my media sternum, my bones (my Th rib has been destroyed by the cancer, but boy that area really is painful), I also have cancer in the soft tissue throughout my body, and I just found a lump on the original side where my cancer first started 25 years ago. Not a happy camper since I first felt this lump just a couple of hours ago.

I really encourage to stick the current regimen. Just think - wouldn't you think it would have been all worth it if it worked really well for you? It may not get better, but maybe if you can just schedule a week of your "chemo" week, and think of it only one week out of a month and that would be only 12 out of a year, but I think I remember your doc only had you on it as a double dose for a couple of months and then take you off of it in 7 months.

Only you know what you can live with, and I wouldn't fault you if you feel it's too hard, but I really do encourage you to wait another treatment and then a long talk with your onc because maybe he can prescribe you a drug cocktail like my onco did. It really does help.

Good luck.....

• By Pink94
• Posted December 29, 2009 at 8:23 am
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Hi
I have been on Faslodex for 9 months. I have the shot once a month.I have liver and bone mets with pleura mets that only show up on MRIs. At first the only problem I had was at the injection site. I had redness and itchiness. Now I am having severe hot flashes and am hot all the time. My hips have started to hurt me. I feel like an old lady!!!!

I plan on talking to my onc next time I see her. I suggest you do the same. i always side on the safe side if there is anything that bothers you talk to them.
Good luck I will be thinking of you

Michelle

• By SIgirl
• Posted December 29, 2009 at 8:34 am
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Sorry you are having bad reactions. I have had 3 shots of faslodex with no reactions. So I think you need to talk to the doc. Hope you are feeling better soon.

• By specora
• Posted December 29, 2009 at 11:06 am
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I was having the same side effects from Arimidex, so started Falsodex two weeks ago. It seems to be getting worse, so I now take darvocet, sleeping pill and heating blanket just to sleep with the bone and joint pain????

• By mom2acat
• Posted December 29, 2009 at 2:02 pm
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I was on Faslodex for a little over 2 years; my oncologists switched me to Aromasin this summer because my tumor markers starting rising.

I started on Zometa the same day as the Faslodex, so it's hard for me to say which side effects were from which drug. And since I have been on Lupron since 2004, I was already experiencing hot flashes.

I think the worst part of the Faslodex was the pain of the injection; they have to use a thick needle and push it in slow, and a couple of times, it really hurt for a couple of days after, had to use ice on it those times.

• By Femtazzie
• Posted December 29, 2009 at 2:15 pm
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I want to thank you all for the information. I spoke to the onc and he says that the side effects are worse because the Femera was still in my system. I had no pain at the injection site so I am lucky with that.
The onc told me if the pain does not lessen by the end of the week I should call him again and he will figure out what pain killer to give me. He suggested using the Percoset and changing off with Ibuprofen or tyelnol arthris strength so I don't kill my stomach. Also drink much more water than before. Remeber to eat something every time I take a pain pill - even if it is only a couple of cookies in the middle of the night.

The onc is still considering doubling the dose of Faslodex but he ssaid if he did he would give me a pain patch so I would be able to function better.

Thanks again for the info. I am willing to keep on this if it lowers my numbers again. As the onc said the next step is a chemo cocktail and I prefer this.

Terri

• By susanrose55
• Posted December 29, 2009 at 8:18 pm
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I get 1 Faslodex shot once a month. I ask the nurse to give it to me immediately after it comes out of the frig. so it's still cold.
It takes a long time for this shot to empty into
my body so I find if it is cold it hurts less
I'm on this for the last 18 months
I am happy I have a big butt..........
Good luck Terri
Susanrose55

• By Missouri
• Posted December 30, 2009 at 5:00 pm
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Hi
I have been on faslodex for 18 mo. without any severe sideaffects. I receive 2 injection every 4wks. My onc nurse gives me 2 ice packs when I get to treatment room, that I place on injection sites. I keep these on while I have an infusion of hercepten and zometa. The injections don't hurt. When I get home I put a heat pad on the site and it helps to disipate the oil base of the faslodex. I was on femara for 2yrs and now on arominsin. I have mts to bone, so far all scans show no further damage or tumors. I am blessed

Pam

• By barb366
• Posted January 14, 2010 at 12:06 am
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I just searched to see if anyone has had joint pain with faslodex. My new oncologist who is terrific took me off femara in August bc of pain from that. I had a month of nothing as was starting to feel really darn good! (even something like a libido returned)

Then we started the faslodex monthly shot and the joint pain returned. My onc thinks I have fibromalgia (sp?) bc she insists faslodex does not have this side effect. I don't think I'm crazy and making it up. If I were I'd make up something a heck of a lot nicer than this. I am relieved to see others have had pain too for my own saneity. Barb
PS I got a laptop for xmas and just discovered I could use it in bed. This is great!

• By Femtazzie
• Posted January 14, 2010 at 10:52 am
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My pain is btter after the Femera wore off - but it is NOT gone. I spoke with two oncs who both said that the pain is a side effect and if you look the med up online it also says that it can be a side effect.

If it works I feel it is worth the pain. I switch pain meds around so I don't kill my stomach - tylenol, advil and aleve with Percoset on occassion. I find that the more active I am the less it bothers me.

Don't let your onc tell you it cannot hurt. He hasn't taken it - we have and it can.

Good luck

• By barb366
• Posted January 14, 2010 at 11:13 am
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Thanks for relieving my paranoia. I do believe it works! And that's worth everything.B

• By jo823
• Posted January 22, 2010 at 3:21 pm
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I started on Faslodex after smallish liver mets (diagnosed as coming from my breast cancer) showed some growth (I had bone mets in my left hip which were and are treated by Zometa...every month for 2 years now every 3 months...bone is stable). First month was one injection every 2 weeks for the month then an injection every 28-31 days. I have had 2 months of the one per month...last scans showed the liver mets starting to shrink which is a good thing (hope it works for a long time but never know)

Was on Aromasin but went off of that to go on Faslodex. I have had no side effects so I guess that's lucky for me.

My biggest problem is that I'd like to travel out of the USA for over a month which means I would need my Faslodex injection during the vacation...medicare / insurance will not cover it. I'm told the shot must be given in a USA doctors office to be covered...otherwise I could "buy" the shot for $860+ and take it with me and then try to find a doctor to administer it wherever I am (and pay their bill which would also not be covered). I checked with a few countries that I would like to travel to and also with a cruise line. I have been told that the drug isn't available in Mexico yet and I don't know what the cost would be from an oncologist there if I could find one. The cruise line would administer the shot but I would have to bring it myself (so cost would be the $860-not covered by any insurance + the doctors office visit $60 + his services to administer the shot...bumping up the cost of the cruise too much for me to do). I called Astra Zenica who makes Faslodex but they were no hlep with this problem...any ideas?

Hope this Faslodex keeps working for a long time :-)