Faslodex Girls

M360

Ladies I was to start Faslodex this weekend and was actually waiting and happy about it because I saw that others took chemo while on it and I called the company and there would be no interaction if I wanted to stay on my Enbrel and take such.  So you would think that my doctors were on the same page.  NO!  They don't want to do the Cytoxan or allow me to use the Enbrel while on Faslodex.  The thing is I spent five years in a wheel-chair with a full time nurse and it took year to get out and turn my life around.  Then in 2009 I got cancer and they said I had three months.  Ummm!  I fought for the treatment I knew would work best with my health issues.

Reading, researching and listening to all of you ladies I really thought I found the right combination for me.  But I'm told the hospital and Cancer Center that I go to does not use this type of protocol to treat. PLEASE!

If there are not drug interactions in each with the use of the other then why not?  I know I can't take Enbrel and Cytoxan together but let me have one to keep me mobile while on Faslodex.

I have had 18 bone surgeries that are not cancer related.  I work out three hours each morning to keep me able to walk and muscles flexible.  I'm not ready to die, and I don't think I have to, but why do we have to fight so hard for what will work best for our own life and medical complications.  

I'd like to ask you ladies how many of you are on Faslodex and taking chemo besides.  I want to go to the head of the Breast Center and say, okay this is your protocol but women around the World are taking both and you can, so why can't I have such?!  

I don't know how to put under my profile all that I've been on or have.  But right now five tumors in my left lung, in vertebrae from T1 to T1l and in my right hip and right femur.  I used to get each report and all my blood tests and levels, this time they are not giving them to me, I ask and they say at the next visit.  Yes, there are a lot of changes taking place and expansion but don't forget about the patients.

I'm frustrated is an understatement.  Thank you for listening.

susan_02143

No chemo with faslodex here. Sorry. *susan*

bourscheid

I am on both chemo and Faslodex!  I take Doxil, Faslodex and Xgeva for my bones all on the same day once a month since Jan.  So far all is well!  No tests yet but I feel good!

Aerial

M360, it sounds like you've been through Hell and back.  Then, the Stage IV cancer diagnosis and the drug changes which, I imagine,  would cause anyone some intense worries and panic.  Maybe, it means you can't take your "usual" drugs with the Faslodex but, there might be something similar to replace them. 

I've been wondering if we have a thread (on this forum) for people suffering from other health problems in addition to the Stage IV cancer.  I have Spondylolisthesis (vertabrae slippage on the L-5, S-1).  I've been trying to find a solution for the bad leg pain (left side) I have.  I'm not able to be very active and it's so frustrating to have this chronic pain.   I'm afraid that, eventually, I'll need to have surgery.  Blah.  Despite the cancer lesions in the middle of my spine I have little to no pain with that.

I hope your doctors can offer you some comfort and specific information to ease your mind, M360.  You could try a second opinion, too.You'll be in my thoughts...((((Hugs))))

EvaPerone

Nice quote on your signature line, Aerial. I need to remember the secret more often.

My $.02, I'm all for second opinions. Medical science is more art than science. 

Tree3

Eva, I'm all for second and third opinions in the beginning or if things are not going well. But when they sre, I say leave well enough alone.

Teresa

M360

Ladies, thank you all for all the information and for those who PM'ed me regarding such.  I will see my Oncologist tomorrow and have a list of medications that will work with Faslodex.  I really feel that Faslodex will help me in so many ways for all my tumors have been 97 to 98% ER & PR+, also seeing a Geneticists been referred by three different doctors for more than just the cancer.

Aerial, I'm lucky I have a jacuzzi bath that helps a lot with pain, plus I use Volteran and LMX cream on my legs and along the spine, hip etc.  Lidoderm Patches helped also but I can't take the adhesive any more.  Have you tried any of these?  They help so, so much I can't tell you.

Again thank you all for the insight and information.

Tina2

Good News Dept.: Had my six-month,eyes-to-thighs PET-CT last week. The lung mets are still there, but inactive. There are the usual lumps and bumps and degeneration that will occur in an aging body, but nothing glowed except the Faslodex injection sites!

I recently sought out a rheumatologist to evaluate my back and hip pain. She immediately gave me cortisone shots for trochanteric bursitis (who knew?), and prescribed a muscle relaxant, Tylenol and PT. I haven't started the PT yet, but the shots and muscle relaxants have already worked wonders. It was so great to have someone looking at me who was not as specialized and micro-focused on one particular area as the orthopedists I had already consulted. She is young and smart and seems to take the whole picture into consideration. This is heartening.

SyrMom

Wow, Tina, so happy for you, this is wonderful news!  Celebrate!

susan_02143

Tina,

Oh does this make me happy! It is so hard sometimes to separate our cancer from the rest of our health. It is hard for us, and even harder for our doctors. I almost died because doctors couldn't look past the cancer filter years ago and what was wrong was totally non-cancer related. Wouldn't it be wonderful to not be in pain all the time?

*susan*

stellaratovsky

Yesterday I went for my faslodex shots. Usually the Chemo nurse does it and I really don't feel it. She is great after she injects the meds very slowly she rubs the area. I usually feel fine with slight se. Yesterday the nurse was out so my onc decided to do it. Did he hurt me. I still can not sit or lay. He said going in fast is much better. Oh he was wrong I still feel it. I took aleve and that is no help. Anybody have any advise??

Tina2

Stella, the manufacturer's instructions say to administer the injections slowly. They mean it. I once had an inexperienced tech type give them to me really fast. I've never been shot with a gun, but I would imagine that's what it would have felt like. I haven't let her come near me since.

This is from the official Faslodex website:

"The recommended dose of FASLODEX 500 mg should be administered intramuscularly into the buttocks slowly (1-2 minutes per injection) as two 250-mg injections, one in each buttock, on days 1, 15, and 29 and then once monthly thereafter."

My advice is to put some ice on the sites. Take Tylenol. It should ease up in a couple of days.

Tina

stellaratovsky

Thank u Tina, it felt like someone has shot me. My butt is sore I don't know what to do with myself. Just as I am beginning to feel better from bone pain know I have to deal with painful injection. This disease is no joke. It takes everything out of u. We are blessed because there is Meds out there for us. How did women deal with this years ago when they did not have our options. I hate cancer:(

Anonymous

Well, new too.  I will be reading the middle of the thread (so far pgs 1-9 and 28-34).  Will get my first injections on Monday.  The Arimidex was rx'd by the MO as a complementary, but the Faslodex was her choice if only one.  Thank you all for sharing, it helps so much to know what tips to use and what to expect. 

Stella, darn it, hate that you got the onc's version of better. 

I have a question.  The nurse at the infusion site at IU was telling me that heat after the injections would help (??? right, anyone) as well as moving around more.  She said us the seat heater in vehicle, heating pad off and on for a few days.  Must say, the main reason I declined the injection that night, preferring to go to the original MO closer to home, Monday.  But they also did not have the ins auth. yet, since so late.  They wanted me to sign to pay $3500 if ins did not.  I waited. *_*

Question #2.  Phamplet says Faslodex is an rx.  But I was told that my copay would be 10% which means ins is seeing it as a tx instead.  What is it for you?

Thanks!

susan_02143

Faslodex is treatment. Anything administered by nurses will be even though it comes from the pharamacy. (If you could order and self-inject then it would be an RX. I know what too much about this since RX coverage in my house isn't much.)

I think heat would be contra-indicated but I just haven't had enough pain to try it either. Make sure that the drug is warmed. This means it needs to be ordered at least 30 minutes before injection. Hold it in your hand. If it feels cold to your hand, then it is too cold to inject.

Hope this helps,

*susan*

Tina2

My oncologist's nurse, who knows a great deal, insists that heat NOT be put on the injection sites for at least three days. She maintains it interferes with proper absorbtion. She suggests ice, but I'm usually too cold to even consider it. Avoiding heat on that area is a double drag for me because it makes my chronic lower back pain better.

Ai yi yi. It's always something.

Tina

Anonymous

Thank you on rx info and the heat too, seems I dodged a bullet w that one.

Denny123

OK, I have read in several places in this thread that ice will prevent the serum from circulating.

I thought that heat would be better.

My last injections hurt more than usual.  So when the pains got bad, I got on my treadmill for a bit.  It really seemed to help, maybe because it was helping the serum to circulate.

M360

Ladies,

I also had my first Faslodex treatment yesterday.  It is a TX not a RX,  I give myself all my injections, also my Neulasta injections but was told that because it's a treatment I can't give such at home even with a nurse.  

I don't have too much heat in my hands these days so they had my daughter hold the injections for over 30 minutes.  They told me not to put anything on heat or cold, but  after the two hour drive home I had some soreness but I put some LMX cream on and went for a walk.  Today nothing.  So when all you ladies told me this had few side effects, I must say this rang so true for me.  Nothing.

My Medical Oncologist said I must have a dentist check my jaw and do some special scan and then I have to see a cardilogist, when I clear that they are planning on adding chemo plus  a third  medication which they will discuss more when those two are cleared.   I'm hoping this works as well as it has for others.

Tina, what great news, congratulations!  This gives me such great hope.

EvaPerone

Tina, congrats on the good news! And on finding a rheumotologist that can treat your pain.

I hit exactly 11 months on faslodex yesterday. CT scan next week, anxiety increasing. Only all of you know what I'm talking about....

Annettea

Hi everyone,

Had shot of faslodex on Feb 25 it was my 7th shot and yes if they inject it to fast it hurts for a couple of days later. I could not sleep each side hurt so bad. I think the nurse was in a hurry and did it to fast. I go back March 25th for next shot and I'm going to tell them to take there time. I still have a small lump at the injection site on left side.

Annettea

EvaPerone I know what your feeling I go for a bone scan and CT scan in may. Last scans I had I thought I was doing well until the dreaded phone call from the doctor. As soon as I heard his voice I new they found something. Found bone met on leg a three on lung. Started faslodex in Nov hope it works. I start having panic attacks when I go for any tests and I take medication for them but it doesn't work. I just get so nervous.

EvaPerone

Thanks Annettea, I am scheduling a weekend away with friends between getting scanned and seeing my doc. Any distraction will do.

I heard Hopkins is doing a study on those with advanced cancer using LSD. I've read it reduces anxiety, anyone know more of the theories behind it? I am considering volunteering but will discuss with my medoc first.

Tina2

What in the world is wrong with me? I had a good scan report (which I knew from reading it in advance of my visit), my blood tests are golden, and for some reason I was queasy and anxious today at the onc's office. The phlebotomist had problems finding a good vein and my BP was sky-high. I feel I have to be very concise and quick with my questions for the oncologist because he is so busy and I am in great shape compared to many of his patients. I had hoped the Faslodex injections would get easier, but I dread them more each visit because I am certain they are contributing to my back problems even though they are saving my life.

How ungrateful is that?

I guess I had assumed that these monthly appointments and blood draws and injections would get easier over time, particularly since I'm doing so well, but they haven't. At least not today.

My heart is racing. I am surprised and disappointed in myself. And, yes, I finally caved and asked for an rx for Ativan.

Tina

susan_02143

Today was month No 37. That is a lot of puncture holes! I am tired.... need a nap.

*susan*

Tish_13

Tina,

There is allot of extra weight with all the baggage that you have to carry. Please do not let your oncologist hurry you along, your pain and anxiety needs to be addressed. You are a package deal...a Whole package, body ,mind and spirit all included. He may not be able to fix it all but should be able to refer you to the right sources that could help with your back pain and anxiety.

You are not ungrateful, you just want normal. Plain simple old fashion normal. Other cancer peeps tell me I have to learn to live with my new normal, but I remember life before cancer and it was sweet and very simple. I want it back, but can not turn back time, So go ahead and have a ungrateful day or two, don't let them rush you. Address the pain, the rest should follow.

Tina2

Thanks, Tish. Wise and kind advice. I am seeing a therapist for my "head and heart," and a rheumaologist for my back and hip, but my entire life is in the hands of this very busy oncologist. Clearly being dependent on one person in power brings out my old anxieties. Amazing how after many decades one can be catapulted back into the emotional past.

Tina

EvaPerone

Tina: I'm with Tish. Do not let that busy oncologist rush you. I always see it as I may be the healthiest patient that they see that day, so take your time and let the all important medoc feel a little success. Eva

susan_02143

Month 37 is behind me [pun intended] and my markers are hanging at very low. Pleased to get another month from this drug.

*susan*

Tish_13

10 shots and the verdict is still out if it is working or not. Tumor markers were still slowly rising as of January to the high 60s.

My back is killing me from work and my ribs are aching, it has been a long week. I am telling myself it is from pushing too hard and not giving myself a break. Susan, I hope this drug kicks in and I can look forward to NED, 37 months is GREAT!. Hang in there Eva and Tina. I am going to take my own advice this week end and chill with friends and family. Next weekend Mr T and myself are l slipping away to do some wine tasting and beach walking.

Take care all,

Tish