Faslodex Girls

bobkat

Well ladies, it looks like I may be joining you on the Faslodex thread.  Got my scan report back today. Some progression with increased activity in liver, bone and more.  Also changes in mastectomy region.  Arimedex total failure for me.  I will get liver enzyme report tomorrow to see if I can for sure do the Faslodex.  Doesn't Faslodex kind of mess with the liver?  Well this stinks, I don't want to go back on chemo now.  I was planning a fun summer with the kids. If not Faslodex it's back to Ixempra which worked for me in the past.  I'm hoping for Faslodex :l

Denny123

Guess I get to join the club! 

 Herceptin alone kept my liver mets in remission for 6 years, but now I have active lymph nodes behind my sternum.

Got my first Faslodex shots on March 23. 

My onc is pushing clinical trails but I would prefer to see if the Faslodex will work.

 Denise ... 10 year survivor of Stage 4 BC.

PJB

Bobkat, I'm sorry it's looking like you'll be swapping over to Faslodex. I hope you can avoid the chemo, too. I'm with you, I want a summer with no chemo and with hair. And I really want that for you and your kids.

Aerial

Paula, Congratulations on your good news--Yaay, for stable! 

Denise & Bobkat:  welcome to Faslodex land--I hope it does you a lot of good for a long time!

(((((( HUGS AND PRAYERS TO ALL)))))

Naniam

Denise, 10 years with mets?  I think the lymph nodes under the sternum is called the intramammary - how did they realize they were enlarged and had mets.  Did you have a biopsy?  I always have wondered if mine were really checked when I had the testing for the lymph nodes the first time.  My BC was upper inner quadrant.  My oncologist is sticking firm to not knowing if Faslodex is really working until 6 months of treatment - I hope it works well for you. 

Bobkat, not sure if Faslodex is hard on the liver, just know my oncologist wanted me to keep some pain meds to a certain number because of the liver but I also one mets in the liver and I have a "fatty liver: too.    My hair has really thinned from Faslodex but I have hair.  I hope you have a chemo free summer with your kids and get to keep your hair too !  Lets hope Faslodex is the next step for you. 

Denise, welcome.  Hope Faslodex works well for you too.  

Aerial, how you doing?   

  

bobkat

Thanks everybody, waiting for his call to let me know if I can go on Faslodex.  Fingers crossed. Naniam, I have numerous lesions with progression on a couple.  I think I read on faslodex site that if you have a compromised liver you have to be closely monitored, maybe reduced dose also.  I will ask onc today.  I keep asking for oxycodone instead of the vicodon that has 325 mg of acetaminophine which is bad for the liver.  But nooo!  I'm going to insist on it today. I only take one a day so hopefully thats ok. Will keep you posted, cuz I want to join this club!  

holdontohope

Faslodex sisters, I am joining you too.   Got my first two injections yesterday and I give the nurses 5 stars!   I was sooooo nervous beforehand, but I felt no pain.   Hoping this will starve those bone and liver mets!   Also looking forward to a chemo-free summer. 

Aerial

Welcome to the "club" holdontohope.  I am hoping with you that Faslodex will starve those nasty cancer cells.

Mostly, my onco nurses are amazing with any kind of needle...there are little to no pains with injections and blood draws. 

I have my blood tested before each treatment.  I think it's due to the possible Zometa liver damage more than the Faslodex.  (Just my non-professional opinion, though).

Denny123

Naniam-By the time my bi-lat BC was found it had already spread to my liver.  Gemzar with Herceptin for 9 months put my liver into remission.

I was in remission for 6 years until now.  The PET/CT scan showed the enlarged lymph nodes, but they are impossible to biopsy since they are behind the sternum.  I was on Aromasin for 9 months until the nodes increased in size.

My onc wants me to go on a clinical trial with Neratinib, but it looks really nasty.  No thanks.....

My liver is compromised because of the liver mets, but nothing was mentioned of possible liver harm.

Aerial-thanks for the hugs!

lulubee

I was initially written a script for oxycodone w/apap (apap meaningTylenol), but I asked my onc for Vicoprofen instead, simply because I always respond to Advil better than Tylenol.  My onc was fine with that. She has never mentioned to me that some pain meds might not be a good idea with Faslodex, so I am curious what you all have been told about that.

I am conservative with them, but they help greatly when I really need them.   

lulubee

Oh, also wanted to say welcome to the wave of new Faslodex girls!  Glad you found us.

Tina2

Ladies,

I've been hesitant to post this because there are so many Faslodex newbies on this thread and I don't want to discourage anyone with a litany of whines about side effects. Faslodex treatments have rendered my metastases stable and I am grateful beyond words for that.

However, I would like to know if anyone else here is discovering that some SEs of Faslodex treatment appear to be cumulative. 

Tina

P.S. I have my monthly treatment this afternoon, so this subject is at the forefront of my mind!

Naniam

Tina, I find the fatigue overwhelming.  I ask the oncologist about this last month and he said that it was with "some" women.  I don't think food has much of a taste and I really have to be careful of what I eat since I started the Faslodex.  Nothing spicy or hard to digest.  This past month I have noticed I am having some problems with balance.  However, I have not been on Faslodex 6 months yet so probably not the one to answer.

Lulu, my oncologist gave me Vicodin 7.5 and because of the amount of Tylenol in it, told me he did not want me taking more than 4 a day.  I did during some recent radiation have to go to Percocet but found that it was not kind to my stomach.  I am careful with pain meds and probably often don't use then enough. 

Welcome to the new Faslodex gals.  I hope it is a drug you can use for a very long time.   

   

susan_02143

Home from month 24 injections. Feeling a tad queezy, but I expect that now. This is the fourth or fifth month of feeling nauseaus after the injections. Since I met with my oncologist this month, we noted this new side effect. She offered me anti-nausea drugs, but it isn't bad enough to add more drugs to my life.

She also gave me room to ask for a different treatment plan. I told her that she was nuts! Out of a 28-day cycle, I don't feel great on 2 days. I challenged her to find another drug that had such minimal side effects. She was pretty funny.... evidently she likes my realistic approach to this crap. She did not however say I could have nothing at all, though I did throw that out!

Turned down 6-month scans. Just don't think I need them right now.

So there is this month's report!

*susan* 

Naniam

As a side note - this probably won't surprise some of you but for me, never had I had to have a 2 1/2 hour MRI.  Done it now.  Did my upper arm and shoulder with and without contrast. Knew from CT's at diagnosis had mets in both humeral heads.  MRI showed that as well as the humeral shaft and bursitis, tendonitis,and a rotator cuff tear.

I am using my right arm but trying not to use as much and careful how I use it.  I don't know if a rotator cuff tear can heal on its on but I'm praying.  On a Medrol Dose Pak for respiratory issues due to all the pollen and it seems to have helped calm down the tendonitis and bursitis.  RO told me today he didn't blame me for trying to avoid surgery because when there is cancer it seems to be harder to heal.  

I just know near the end of the MRI, after the contrast, I had to have them bring me out due to pain.  She just let me move my lower arm and  I went back in; she did speed up the sequence of views but was in tears again by the time it was finished.  I have a hard time with MRI's anyway and, sure some of you know this, terrible to be in there and be in severe pain.  Geesh ~ 

lulubee

Oh, Nan, I'm so sorry.  Sounds like an awful day.  I hope you're relaxing this evening.

Aerial

Nan, I'm so sorry to hear of your rotten MRI, experience.  I wonder if there are pre-meds you can take to lessen pain and anxiety? 

I've been in the "lovely" MRI tube for up to 45 minutes but, I always take Xanax before the scan due to some moderate clostrophobia.  I think you can tell the techs you're having problems, at any time. Several doctors have encouraged me to speak up for what I need.  I know I tend to want to be the "good girl" (even as a cancer patient)--it's a hard habit to break.  Despite the fact that I believe we deserve as much comfort as possible.

I hope you're feeling better, hon.

As for cumulative effects--I think the fatigue has increased--especially after a work day.  I'm on Spring break right now and not feeling nearly as tired!

Naniam

Haven't been around much the past two weeks as my brother has been in the hospital and I was in the ER with him one day for 5 hours; two days later for 8 1/2 and they were going to send him home and he refused.  All that was prior to my MRI. 

Honestly, I don't look sick and I take meds to help me with my fatigue so seems my family thinks I can do for them as before.  I have been so stressed and upset - my problem. 

My RO told me I am at a high risk for a fracture in that arm/shoulder and didn't blame me for not wanting to have the rotator cuff repaired - that sometimes with cancer you just don't heal as quickly after surgery.  My local ortho doc told me he would not have the surgery as it was a difficult surgery and a long difficult recovery time too.  I did end up having to have steroid injection just for some pain relief.

Monday will be my 5th Faslodex injection - with new areas of mets showing up I really wonder if it is holding at bay the bone mets.  It just seems new areas should not keep showing up after loading doses and 4 monthly ones.  Guess we will find out in late May/early June. 

Know lots of other things have been going on on the board but wanted to say hi and hope everyone is doing OK - things are stable. 

Naniam

I have been thinking that the Faslodex hasn't been doing a good job for me.  Since I got my first loading dose in Nov. and another treatment yesterday, I have now had 5 and my two loading doses.

During that time, mets developed in my hip and I had radiation treatment there and then had upper arm problems and had MRI.  We knew it was in both humeral heads - but it was found in the humeral shaft, and humeral head, coracoid process,acromium, glenoid and I am at a high risk for a fracture.

Knew it was in my Tspine, C-spine, my lumbar spine and sacrum are filled with mets and now my T spine and my other uppper arm has just started hurting.  My lumar spine is really beginning to bother me again.

I told the PA yesterday, I was really questioning the Faslodex.  WHen my oncologist came in he told me he shared my concerns with the Faslodex and he wanted to scan now instead of waiting.  So will be having a bone scan, a CT of the chest, abdomen and pelvis on May 8th.  My next scheduled treatment will be May 14th and he wanted the scans so decisions could be made prior to that visit. 

My potassium, sodium, chloride are still running low and I had to have fluids yesterday.  When all of this started, I got the impression from oncologist that Faslodex was the end of the hormonals he would try, then probably on to a chemo.   I don't know - so getting ready to do my scans to see if Faslodex has done its magic.  I don't see how with all that has gone on but really scared to find out too.  Only all of you can understand that last comment ! 

holdontohope

Sorry if this has been addressed already on this thread, but I wonder if any of you got blurry vision with Faslodex.  My distance vision is fine, but anything I try to read is extremely blurry.  I am wearing reading glasses to read things on my computer screen.  Just got my second loading injection yesterday.

sandilee

Naniam- I'm sorry to hear that the Faslodex isn't working for you.  Are you also on Xgeva?

I hope your scans give you some answers and that the next med is one that will keep things under control.  I will probably be on to chemo, too, once the Faslodex fails.  So far, it's working, but we all know it's just a matter of time.

  Let us know what happens at your appointment.  I'm sorry that you have to wait so long for it, though.  It's just hard to wait.

PJB

Hope, I haven't had that SE but you might check their web site and see if it's on "the list". I had to bow to reading glasses a couple years ago when I hit 45, and now have to make sure I have a couple pair around to make sure I have them handy as the close-up reading is just getting worse. 

Nan, I hate it when they move up scans. You're in our thoughts, hoping things come out better than you think! 

Naniam

Hope, if my eyes are tired from computer or reading - it is more difficult for me to have clear vision especially just after a treatment. 

Paula & Sandilee,  On Zometa- 5 treatments under my belt along with loading doses.  I hope oncologist & myself are wrong - Have had a PET and MRI  scans for pain new areas with the humeral shaft having numerous lesions.  Neither my hip (had radiation) or humeral shaft showed up on scans at time of diagnosis.  We'll know in a few weeks.  

bobkat

Naniam, I hope the Faslodex is working for you.  Good luck on the 8th.  I had progression with the Arimidex and now I'm on Faslodex.  Had loading dose last Thursday.  I was under the impression that this is my last of the A1's too, since my onc mentioned going back on Ixempra. I guess I should ask, phooey.

Naniam

Bobkat,  my bone mets was very extensive and had a spot in my liver and several in my peritoneum - this was the drug of choice and was told very successful with this drug.  THat was my understanding also; I have no idea if I have progression where I go next.  This is my first treatment drug for mets.  I know each oncologist probably has their favorite drugs to use.  I have just had mets show up in the 5 months I have been on this that was not on my original scans; that doesn't seem stable to me and my oncologist finally agreed.  To suddenly hear that you are at high risk of fracture when you didn't have all mets in the humeral shaft and shoulder is a bit unnerving !  

I was always told I had the "good" kind of breast cancer, no lymph nodes involved, etc.  I should be fine.  Duh -------    I've read about being on chemo, getting stable and then going back to AI's -so you were on Ixempra and now to Faslodex.  How long on the Ixempra?  Not familiar with that drug - not familiar with most of the mets drugs to be honest.  

Tina2

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Faslodex Femmes,

 

You were so helpful a month ago with your responses to my post about back pain that I owe you an update as well as my thanks. I saw an orthopedist. X-rays show facet joint arthritis in my spine as well as severe arthritis in my hip. He wants me to see a hip specialist in a few weeks and assured me that surgery would be a last resort. In the meantime, he put me on Mobic, which seemed to be tamping down the back pain, but in just three days my feet, ankles and calves became scarily swollen. He told me stop the Mobic. When I asked for an alternative, he said all NSAIDs would affect me the same way and taking any was too risky.  RATZ! Today I started the PT he ordered and hope that will help. The physical therapist acknowledged that the Faslodex injections might be further irritating my back. I know that I am lucky in many ways compared to others here who are younger, have more mets and are enduring harsher treatments, but I feel as if my body is betraying me big time when I need it to be strong-- and I am well and truly ticked.

 

Better informed about the situation but still whining,

 

Tina

lulubee

Nan, thinking of you.  Sending up prayers for better news for you real soon.  Please keep us posted.

Naniam

Tina, before we discovered all the mets in my lumbar and sacral area, I was diagnosed with facet arthritis or degenerative disc disease, buldging disc, and on and on.  Twice now I have had through a pain management doctor, a procedure called "radiowave nerve obliteration".  It has been wonderful and last me for about 8-9 months.  First time we did on the right side, 2nd time we did both sides of the back.

They do some nerve test to make sure they are at the right level and then they do something that kind of "puts the nerve to sleep" for a time.  It is not permanent.  I was a bit uncomfortable for a day and it takes a week or two to start feeling the results.  Since my mets diagnosis, I have read that is it also safely used for pain relief to those that have spinal mets.  I know you can google and read about this.  It isn't surgery; I would highly recommend it; just make sure you know the doctor that does this procedure is skilled and has good results. 

If you have any questions, please feel free to PM me.  My last one is beginning to wear off a bit but still not in lots of discomfort,  I will have it done again and sure better than having surgery.  They were telling me I needed a fusion - I didn't go for that at all !  

Aerial

Tina, feeling ticked off and betrayed by your body is something we all feel.  I think anyone would in our situation. 

I had my 6th doses of Zometa and Faslodex just yesterday.  I breathe a sigh of relief when I remember both drugs keeping me stable (for now) . 

Nan, I'm sorry to hear you've had new mets turn up. That's rotten but, I'm still holding out hope that the drugs will kick in and do some good.

I  noticed my eyes were fairly red rimmed this morning and the fatigue is creeping up quicker and lasting for a longer time.  My aches and pains seem to come and go and none have been really extreme.  That's a blessing and I'm grateful.  However, the uncertainty of the future can take a big toll on my emotions.  Blah..cancer sucks.

lulubee

I have a question for you all.  I go in for round #6 on Friday... started shots the first week of January.  I'm starting to notice that I feel like I'm losing my appetite. For the past several weeks I have been eating primarily because I have to, and if I'm not paying attention I wind up skipping meals.  Even when I'm hungry, nothing really sounds all that great.  Anyone else have this SE?I just wish it would translate into weight loss, which so far it is NOT. Also feeling more fatigued as the months go by, but I keep wanting to think that may be from spring allergies. The pollen is really a monster here this year!