Faslodex Girls

Thanks for all the 'tips' about this shot! This is really helpfu. I have just started Faslodex and going in for the second shot on Monday. My nurse didn't know about bringing the vial to room temperature! I had to tell her this and I am glad she obliged!

I got Xgeva and Faslodex on the same day. Not too bad compared to the chemo I had five years ago!

Greetings to all of the Faslodex girls--

Thanks to all of you who have posted on this site!  Your advice and insight have been a huge help and comfort as I've started this treatment.  Just had #5 on Thursday.  I've had a different nurse every time, and each has had her own warming technique.  The first was by far the easiest-- only felt the initial needle stick.  The next two were more uncomfortable (not bad, and only for as long as the needle was in)-- a combo of not quite warm enough and given a bit too quickly.  On the 4th, I decided to take charge and felt the syringes myself to be sure they were warm enough.  They weren't, so the nurse and I joked about it (I told her I had a lot of gardening to do over the weekend and couldn't be sore).  After getting the temp up, she administered the injections slowly, and all was well!  Same routine with the nurse this week-- we did some extra warming, and she was the slowest yet, so no injection site issues this time.  Funny how we become thankful for these little details that can make a big difference.

I've noticed more "zinging", pin-prick sort of burning pain after my last two injections.  It's not constant, but was off and on for a couple of weeks.  I'm hoping this is the Faslodex taking care of business.  It's not bad- advil usually takes care of it.  Have any of you experienced this?  

I have a good friend, also with metastatic disease.  She just started Faslodex on Thursday, so we'll be on the same injection schedule.  How crazy is it to be excited to have a treatment buddy doing the same thing?  We're just glad to have each other, because the rest of the world just doesn't get what it means to be on our  journey.  I've been an avid reader of all of these boards, and am soooo thankful for all of the information, advice and support that I've seen.  

Sending big hugs to all of the stage iv girls--

Holly

Thanks for your reply, Tina.  Almost all of my aches and pains are the area where I have lung mets- left side, in the rib area.  I've had some minor itching around the injection sites, but nothing needing medication.  Hope that continues- one less thing to think about!

Holly

HOLLANDER--thank you for your statement about "the rest of the world just doesn't get what it means to be on our journey."  That is something I struggle with.  I want to be understood but, it's so hard to communicate what's going on in my head and heart.   I, too, have a few friends who are living with metastatic breast cancer.  In their company I do feel understood and it is such a relief

Hang on to hope my "Bottoms Up sisters" (((((HUGS)))))

Annettea, great news! A smiling oncologist is a lovely sight indeed!

Tina

Annetta, good news!

I have been on it for almost a year now, and on all my every 3 month scans, it shows shrinkage of my tumors. I asked my oncologist recently, how long was the longest a patient of theirs was on Faslodex. She said 10 years, but the average is 18 months. I'm hoping to break that average! : )

Good luck!

Lynne

Okay ladies this is hard to ask but I want to know if anyone else has back pain and then loss of control in the bowel area after their injections.  I had a lot of bone and joint pain and with lupus and arthritis they felt I had to be on Cytoxan while on Faslodex.  I do so well with Cytoxan but the Faslodex is still causing shoulder joint pain, but the lower back along with loss of control makes me wonder if I should stay on such or not. The cancer in my spine and right hip and femur caused such groin pain and hip pain that I couldn't drive that is how they found the cancer there.  My tumor marker finally stayed the same and didn't increase for the first time in six months so the Faslodex is working, but I can't eat dinner with family or go out to eat because of control problems and loss of feeling.   Has this happened to any of you in the past or do you know of anyone else this has happed to?

Desi NJ

Yes the shot really hurt last night. The nurse that gave the shot was in a hurry she didn't warm it up and injected to fast and hit me high on the backside. I didn't care I just wanted to go home after seeing the onc and getting bloodwork it was a long visit. My husband takes me to all my doctors visits and he had to get back to work so I didn't want to sit there and tell them to warm them up and inject it slow. Next time I will.

Annettea,

My nurse was also in a hurry and had not warmed the vial. I told her that if the vial was not at room temperature, I should probably wait. She was nice enough to wait for another 15 mins and gave me the shot very slowly. This definitely makes a difference. I am sorry your shot hurt. Does advil or some pain reliever help?

Ladies,  Thank you so much for your input.  I do have a GI Doctor and with discussion of such and a accident while at the hospital even though I ate nothing before visit.  I was referred to a new study for a FI Life Study with a new device for IBS.  The study is now reviewing my medical history and neuropathy to make sure I can participate.  This is not medication but a device that stops leakage and accidents from happening.  Hopefully I can be a part of the study, if not Oncologist feels that we might have to stop Faslodex and opt for another medication.  I was allergic to Femara and had severe swelling that I had to use a Epi Pen.  They say that there are other new medications that are on the market.  I've had such good results from Faslodex and other side effects I'm able to live with.  They are worried about too much dehydration for I take Cytoxan and you have to drink, drink, drink water so that you flush it from your Bladder.   I'm having a PET Scan in two weeks to make sure the problem is not being caused by the cancer in spine and right hip that could be causing numbness and the incontinence.   

Hi Faslodex sisters,

  I just wanted to mention again to any of you who are new to this drug and have allergy problems with it (itching, swelling) that taking Benedryl an hour before my shot, and then another one when I get home (so I don't get too sleeepy) really helped me.  My oncologist suggested this last year when my skin was splitting at the injection site and causing a big sore.  It's been a great supplement, and really stops the itching and swelling.

  This month is my two-year anniversary on Faslodex, and it's still keeping me stable. Knock on wood.

I didn't know there was a shortage!   You might have your doc prescribe it if you can't find it in the store.  I'm using a prescription pill, although it's the same stuff you buy over the counter.

Spent a bit of time viewing my calendar this morning, and why yes, another month has passed. Tomorrow will be month 40 for me. Tonight I will begin my hydration since the blood draw continues to be difficult. No benadryl etc for me, at least for now. As long as I can tolerate the injection without any additional medication, I will not take anything. As usual, I will NOT cook on treatment day and instead, we will go out to dinner. That is my treat for getting through the day!

*susan*

Good luck to you on that question with your onc. Tomorrow, Tina. I wouldn't dare ask, I'm just taking it a day at a time. But I don't have to see my onc until sept. but wait, I bet something happens and ill have to see her sooner.

Tree and Susan, I am curious as to why you wouldn't ask. Here's my reason: In Rome I saw there were pitifully few accomodations made for tourists with any physical disabilites: from people in wheelchairs to those who simply were slow to keep up with others. Many countries are not as advanced as the US with our ADA, etc. Realizing this anew--now in the light of being Stage IV in addition to aging-- gave me pause. Frankly, if it's at all possible for my doctor to gauge, I want to know how long I can expect to be in this state of relative capability and health so I can make travel and other plans and spend my hard-earned savings instead of leaving it to charity. Do you think this is this an awful question to ask my doctor because it puts him on the spot or because he won't have an answer or because I might not like the answer?

Tina