Faslodex Girls

lulubee,

I know nothing about any treatment butt (!) Faslodex, which I've been on since July.

Faslodex Tips:

Make sure the syringes are at room temperature. If they've just emerged from the refrigerator, ask the nurse to warm them up before administering the injections. 

When assuming the position, put all your weight on the leg opposite the cheek receiving the injection. Try to relax that leg as much as you can.

I find that the higher up in the permissable area the injections are given, the less pain I have afterward. Some women prefer it lower. To each her own!

Good luck,

Tina

Nanaskids, glad you found your way over to us.  Do you return to Hickory often?  So many of the fish camps are gone now. 

Lulubee, see you made it too and sure hope the Faslodex works wonders. The thing I have found now having my 3 Faslodex injections is just to make sure it is really warm.  They give them to me and I rub them in the palm of my hand.  The 2nd injection I had them really warm and even the nurses commented how much easier they were to even inject.  I think someone here said they take a Claritin the day before, day of and day after and it helped.  I did that the 2nd time - didn't realize I was going to get the last Faslodex when I did, so I didn't take the Claritin.  I don't know if it was just having the Faslodex warmer or if it was also that I took the Claritin - but I didn't have the sore injection sites for a few days.

Susan, PJB, I guess over time I will learn all the different combinations.  I am one of the women that stopped the AI's (Femara) before the 5 years.  I was put on the Faslodex and I have wondered if this doesn't work, will I then go back to one of the other AI"s.  I was thinking I would be put on one of the other AI's.  I'm hoping I can understand all the different treatments, just overwhelmed.  Sure hoping some of the new combinations bring great results.

Aerial, guess in time we will not be so overwhelmed.  When is your next treatment? 

Diagnosis: 8/18/2005, IDC, 3cm, Stage IV, Grade 2, 0/7 nodes, mets, ER+/PR+, HER2-

Lulubee, I was off balance for about 24 hours with my first one.  I have an hours drive home and every one of them have given me a headache by the time we get home.  I had a bit of nausea with the first one but nothing bad.   Think we are all a bit different but just wanted you to know that you might have a few side effects the first time.  Yes, our bodies are weird sometimes.

Seems lots of the oncologist are trying to get people on the Afinitor - that is very encouraging.

I remember well the low back pain I had with the first one - hasn't been as bad since but with that first one it was very uncomfortable.  All is very doable but think the two weeks after I get the Faslodex and Zometa I have increased bone/joint pain . 

At the 2nd injection I told the chemo nurses how badly my low back hurt and they checked with the oncologist and he sent word back that it could be a good thing - meant med was working.  I have mets in all my spine and since being on treatment have hurt in parts of my spine that never hurt before - I'm taking that as the oncologist said, a good sign.   

Aerial, get mine on the 23 of January.  We'll be the the "double-cheek chicks" sistas for sure that week.

I pray that Faslodex brings good results to all of us.  Think everyone could use some good scan results.

 Question:  Does anyone color their hair or do you know if it is ok to do color while on Faslodex.  I've tried to find the answer by Mr. Google but failed.

judie, how long have you been on the Xeloda and Faslodex combination?  Glad you are seeing good results. 

Lulubee, oh yes.  My spine is full of mets.  I never hurt in my thoracic spine but after I started the Faslodex, I felt as if someone had taken their fist and pounded me between my shoulders.  So I have hurt all areas of my spine.  I keep telling myself that the Faslodex is working.  I have it in my humeral heads and my right one hurt like the dickens too.  That's ok if that means the Faslodex is attacking the cancer.  Funny thing is, I never hurt before, didn't know I had extensive bone mets.  I've had to pop a few of those pain pills myself - yesterday was one of those days.  However, I tried to do some of the stuff I was so used to doing as part of my normal days and routines.  I walked along the driveway and piled up limbs that had fallen in the wind and then dragging them to an area that I can burn them.  Felt good but I paid for it later ! 

The reason I ask the question about the hair - I wasn't thinking and I got my first Faslodex and the next day I had a hair appointment for color.  Talk about my scalp burning/itching and my scalp felt for a few days like it did when my hair started to fall out from chemo.  My color and highlights turned out a bit different in color too.  I'm going to be due again pretty soo, so was wondering if it was ok to color.  My beautician is kind of nervous about it as my hair feels so dry since I started treatment.  I'm taking Biotin. 

Was a nice warm day here but clouds are moving in.  Going to head out for that walk to the mailbox again (1/4 walk round trip) but not dragging any limbs today.

Hey Ladies,

I wanted to chime in but couldn't finish reading all the posts or I will forget what all I wanted to comment on...LOL  gotta love how bad the old memory gets  ")  Shirley, what on earth are you doing here???  I'm sorry to hear you have mets but hopefully it is under control and early which could be to your benefit!

For those that haven't seen my posts, I have been on faslodex over 5 years now.  I have scans this week and have a sneaking suspicion that my time has run out but I"m hoping I am wrong. 

For those that are having stomach issues, try some drug of choice for acid reflux.  I have found that any drug that we take for cancer is hard on our stomach and digestive areas.  If you don't take something talk to your onc or your PCP.  It's nice to use your onc and your gen care doc but sometimes it helps to let the gen care docs take care of the easier issues, they keep up better on tx for that type of stuff while the onc keeps up on onc care so don't be afraid to use several doctors.  I have a great team I have grown with and they all work together so well that it benefits me well.

Those that are having alot of bone pains.  There are many things that can cause that.  I'm not sure what xgeva is (I lost track of some of the drugs lately) but zometa & adredia can be a big culprit of bone pain.  Sometimes you can get pain from mets healing, they call it tumor flare.  Just imagine that faslodex attacking those cancer cells and winning if you feel some pain.

I don't take zometa anymore but I have other reasons for not being on that, but try different approaches at attacking the bone pains.  If you haven't seen a rheumatologist, that might be a good doctor to see.  It is common knowledge that the hormonal drugs can cause arthritis & arthritis pain.  The rheumalogist are trained in arthritis pain, they actually found out I have rheumatoid arthritis that was brought on prematurely due to the AI I was on at the time.  Now that I am being treated properly for the RA it has reduced alot of the bone pain.  So it might be worth a consultation with a rheumatologist to see what they think is happening and get some suggestions to ease pain.

Calico, you said you have a mild progression on faslodex.   I did too about 6 months to a year ago.  I did not want to move on to xeloda or a chemo so I suggested adding femara to my tx regime to see if that would help.  My rads doc is very progressive and since I am willing to go along with the idea we are doing what she calls "spot welding" on me where it is warranted.  Since it wasn't a major progression and it wouldn't  be so bad we radiated the spot of the progression, added femara to the mix and I have been stable.  Since my mets are very controlled right now my onc didn't see the harm in giving my idea a shot and it wasn't something that would cause alot of adverse reactions so he told me we could give it a shot for a few months and it worked.  So something like that might be worth a shot if your onc is game and thinks it might work.  Send me a PM if you want more info on what all was going on with me and I'll be happy to share what I know.

I gave some good suggestions that a nurse gave to me early in this thread, if you haven't read them you might want to back track to early in the thread and I gave some ideas that really can help.  Warming the shot is definitely a plus.  Most times I get herceptin or I have to wait on my best friend to finish her chemo so my nurse will pull the shot to sit at room temp until its almost time for us to leave to aid in warming the fluid.  I never thought about warming it myself but I have seen my nurse do it before so by all means try that if you can.  Do you best though to stay still and keep your muscle relaxed.  If your muscle tenses when they are injecting that is what bruises it.  I wouldn't recommend getting both shots at the same time unless you are laying on your stomach, otherwise you can't take the weight off both hips at the same time to get the injections. 

I can honestly say I have never had pain from the actual injection as they are administering it.  To me that is not painful, it's just the thought of another needle going in that bothers you.  Occasionally I will feel a sting as it is injected but that is normally a little bit of the alcohol entering the site where the needle is at but that is just a small sting.

About 2 months ago they got me good.  I am on blood thinners and they always have to be prepared because for no reason, every now an then my left side will just start spitting blood and running like a faucet.  It's kind of funny knowing a needle is removed and blood starts spitting out going everywhere! LOL  Anyway it was my right side that something happened, the onc thinks they may have hit a blood vessel or something because I felt something and thought I forgot to pull off the little band aid.  It turned out it was a scab and the injection caused a dime shaped wound.  It have been about 6 to 8 weeks and it is still heaing and has a nice lump in it.  The nurse is watching it close because I seem to get cellulitis easily and she doesn't want me back in the hospital for a week because of a boo boo on my butt!  It's just weird though because it doesn't hurt, just doesn't want to heal and has that lump.  I wish they could lance it or something to get rid of the bump and then I wouldn't even thing about it.

I think I have ran on enough about faslodex.  If you have any questions you need help with, ask away or send me a PM I'm happy to share anything I canthat will help.

LuAnn

Hi Naniam, I have a sister and brother in Hickory, I vist atleast 2 a year. They live in Conover and Granite Falls area. We like to go to Captain Gallay's in the St. Stephens area. Maybe we could meet for a lunch, we I visit next.

Nanaskids, lunch sounds good to me.  I have a Hickory address but don't live in Hickory proper - used to.  I went to a county school; however, my children graduated from Hickory High. I am familiar with Captain's Galley - lots of the older fish camps locally owned are pretty much all gone.  There is Tex's Fish Camp in Hildebran.  We still go there sometimes as it is locally owned.

Susan, I have only had a drop of blood on the bandaid - just from pricking the skin.  Nothing more. But then I am not on blood thinners.

LuAnn, on blood thinners and taking Faslodex?  That is something they have to watch closely I'm sure.

Nancy, sure hope the new combination does the trick for you.  This is the first drug I have been on since diagnosis.  I am overwhelmed by the drugs and the combinations, etc. 

Here is wishing all of us luck - sorry that the Xeloda didn't work for you but glad you found us.  . 

Okay, question... 

I took my last Femara on Thursday night, and had my first Faslodex shots on Friday morning.

By Sunday, my hot flashes were markedly different.  

Anyone else notice this?  Why would this be? 

For those that have taken Faslodex in the past for a long time or currently on the treatment for awhile, I have a question.

My oncologist at the beginning told me the three most complaints he had with women on this medicine was joint pain/aching, fatigue, nausea.

Have only had a bit of nausea normally the week of the treatment.  This morning 20+ days out I woke with full force Nausea. The kind where it is just almost in your throat and you are trying so hard to keep it at bay.   We are out of town and I didn't bring the Zofran.   So I put an Ativan under the tongue and willed myself to get back to bed.  I as also hurting in my right side - area of the liver.

I have not felt good all day but not nausea- just stomach not quite settled.  Last I had eaten yesterday was around 3 pm - spaghetti.  This happened around 7:30 this morning.   

Have any of you had this happen?  Is this normal with Faslodex?  Normal this far out from treatment?  Today was my DH birthday - he deserved a better day that my having an unsettled stomach and feeling drugged. Frustrated !

Happen to any of you?  

I just deleted my post.  First I had been that sick - don't think it is that I am catching anything .  I just wondered if anyone else had been sick from Faslodex that far from their treatment.

I saw your post and heard your frustration.  I did address things that I have done to help with the fatigure.  I was told jointpain/aching was a very common complaint.  Fatigue too.  Make sure you read here and in your thread that there are things to do for the fatigue. 

Some of my side effects seem to be improving...the back pain doesn't happen anymore and the met pains are less.  I have my onc appt on Monday to see if my tumor markers are still stable.  I'll know then if the improvement in side effects is due to time or the Faslodex no longer working.  Lately, my side effects with Aredia are worse than with Faslodex.