Faslodex Girls

I have been on femara and zometa for the last 12 months and was stable. I had my scan last month and it said that there is some progression on my right hip (bone mets). But my TM marker went down from 52 to 34. So my onc switched me from femara to arimidex and zometa to xgeva and faslodex. Anybody on this combo? I don't know what SEs to expect. Thanks ladies!

Romans, first I am going to say I have taken my nightly mets and I may not be firing on all cylinders.

So is your new regimen Arimidex, Faslodex and Xegva?   I have heard of being on Faslodex with another AI.  Don't thin the side effects from switching from Zometa to Xegva have been a problem.I just have fatigue but think it is realted to oth the Faslodex and Zometa.  Let me know if I didn't get this new treatment regimen correct.

 Aerial, I thought you might have had your scans.  We'll see how I domets in my next Tuesday.  I have just had mets in my hip, then my shoulder and upper arm - none of those were there on my original scan.  Trying hard not to "think" to much.  Just oncologist also has reservations/concerns if my mets are stable or has progression.  I try not to think to far ahead -to much unknown.  I am extremely happy for you that you get to stay on this regimen for awhile longr.  It really is easy to do and you can plan your life and around once a month treatment.

Carol do ask as it made mine worse too.  I am on Protronix 40 mgs. and I use Carafate at night - last thing I do before bed 

Brenda,

Oh how very disappointing. We had all hoped that you would get more than 5 months on Faslodex. May the selected chemo knock those little buggers back on their butt, with minor side effects.

*susan* 

BTW, I HATE THIS DISEASE!

Brenda, I'm so sorry. I prayed for you while we were both in the tubes that morning.  My PET that day had mixed results, so I had to have an MRI and X-rays last night for a more complete look at the scenario. Waiting over the weekend for results... but I am probably on to Afinitor/AI next week... gut feeling.

Onward we go, my dear... thankful to have more options.

Some people have no SEs to speak of, some have several. And the variety is all over the lot. To get a good idea of the range, pedal backward through this and the Hormonal thread or just do a search on Faslodex SEs/Faslodex and Xgeva SEs. My SEs from the Faslodex include soreness and some numbness around the injection site, agravation of arthritis symptoms in my lower back, sporadic nausea and the fatigue that occurs with estrogen deprivation. I had occasional hot flashes when I first started getting the injections, but they have slackened off. Still, and much as I may whine, I count these SEs as minor and infinitely tolerable considering Faslodex has been keeping my mets stable!

Lulubee-Hate to read that you had to have more scans and get through the weekend until you know the results.  I really don't have a clue whereI go next.  Faslodex was my first drug for mets - so he said we have several options. If you go to the Afinitor/AI - have read lots of good things on that combination.  We will have to stay in touch.  I pray the MRI and xrays gave a clear picture and it was a better one.  Said prayers for you too.

Tina, I was kind of worried if my oncologist with ok the nerve block procedure to my back; didn't know if he was even familiar with it.  When we talked on Thursday, he said, if it gives you pain relief, I have no problem with you having the procedure.   I am thankful as the lumbar area, especially the right side is creating problems.  It will take awhile to get everything set up and could be 6 weeks before I can have the procedure if Medicare makes me jump through loops again to have it.  How are you?  Therapy working?  I loved the water therapy - that did help.

Aerial, 17 more days and you can retire.  Ah, the end of the school year is stressful and that only adds to the fatigue. 

I am truly grateful that some of you are stable on Faslodex - it isn't a hard drug once you get the first 2 behind you and kind of learn.  I pray that it gives everyone a very long time - that would truly make me smile.   

Well, ladies, I am sorry to report that I am moving on from Faslodex now.  It kept the vast majority of my widespread bone mets stable over the past four months, but my scans from last week show that three lesions have progressed a bit.  So, on to Afinitor + Aromasin this week.  Faslodex was pretty easy to take, comparatively speaking, and I'm really sorry to have to move on.  I wish you all the best and hope you will all get a long, long run on it.  

Hugs to all. See you all around the boards. 

After oncology visit & discussion I will be moving to Abraxane.  Never had skull mets and they were not on the PET/CT in Feb but are there now. 

Lulubee - sorry to hear you had to move on also.  Good luck and hope both our new drugs reduces the mets. 

Dina, yes thinning of the hair is pretty common with Faslodex.  It does get to a level that stays consistent within that 28 day cycle.  Not uncommon to have some bone pain.  Do you take Zometa also?  It is known for some of those symptoms also.  I did get my Zometa treatment and have had aching in back and upper legs - not bad but felt it. 

Wishing all of you great success.  Going to miss you but hope you stay here for a very long time.  Thanks for all the support and caring these last months. 

Thanks, Naniam. Thinning hair isn't listed on the Faslodex website. My onc says it's not that common, but I suspected otherwise. No, I'm not taking zometa, I opted not to. I also refused pet,ct and bone scans for the time being as I want to give my immune system a chance. These are tough decisions we have to make.....my onco is not happy. Needless to say I wasn't happy either with my dx nor the stats she provided.

I did find another doctor who has had a lot of success with cancer patients (breast, colon, lung, pancreatic etc.). My TM's have gone down from 97 to 34. Of coarse the onco attributes it to the faslodex and the doc says its the protocol he has me on. I really don't care which as long as they stay in a normal range!

I wish you (and all the ladies here) the best of luck with your treatment.

btw....I found the American Anti-Cancer Institute website to be very helpful and full of info. For anyone interested its americanaci.org

Mazy,

There have been tons of suggestions on this thread, but I will see if I can recap them. [LowRider is the name to search for. She did a really nice post about this.]

Make sure that the Faslodex is really at room temperature. This takes about a half an hour, though you can speed that up by holding them in your hands. You will probably receive the injection standing up. When you are getting the right cheek injected, put your weight on your left leg. Your hand should be holding the edge of a chair to steady yourself. The right leg should be bent and loose. Reverse your weight/leg stance for the second injection.

I had almost no side effects at all for the first year, maybe year and half, beyond the pain of the actual injection.

Now in month 25 of Faslodex, I get some nauseau/fatigue during the first 24 hours following the injection. My back feels "stiff" most of the time. I have never needed someone to drive me to the hospital. I tend to eat soup the night after just to keep my stomach calm.

I was on aromasin for 6 years and found the bone pain/joint aches to be far worse on that drug than the faslodex. I will hope that you follow in my SE footsteps.

All the best,

*susan* 

Has anyone with liver mets had success with Faslodex? I think mom is at the end of her run on taxol. Thanks mary

Hi ladies,

I had my first Faslodex yesterday and that surely hurt. My rump hurt all night but by this morning it was alot better. I just hope it stays about like it is now..I could handle it pretty good. My onc also put me on prednisone for 3 weeks in hopes it will lessen the tumor flare etc. I dont know if thats why it doesnt hurt as bad today or not, but I sure feel better. I'm still running to my pill box every evening to get my Aromasin LOL..but its not there anymore . Something of interest my onc told me for those who dont know already..( I didnt know)..PET scans are not always the scan of choice for "lobular" as  often it does not catch lobular activity etc. She said as mammograms dont catch them..PET has had its fair share of misses too.

Shirley thats nice to know and I hope I have few side effects too. I can handle tired better than I can hurting. 

Thx for the welcome .Hugs, Mazy

Lulubee I had Ductal and oncologist does CT scans with contrast for measure my mets and this time he also order a bone scan.  Bone scan is one that showed the skull mets as CT scans only start at the chest. 

My radiation oncologist told me that some breast cancer mets, just as with men prostate mets, does not show up on PET. He said a man with prostate cancer mets will hardly ever show up on PET.  A PET scan is not as all knowing as we think it is I have decided. 

Got m port in place today - miss you guys