Faslodex Girls

kaycancer

I start faslodex with velcade in couple of days any advice

Groovywilma

Hey Kaycancer,

It's really hard to read through all the info on this thread!  I only got through about nine pages, but did get some good info.  Some of the highlights are to make sure the medication gets warmed to room temperature, and to have the nurse inject it slowly.  Also relax the leg on the side they are injecting by putting your weight on the other leg (if you are standing).  I have gotten four injections so far.  I am wondering if I should ice my buns before and after the injection to help relieve that bruised feeling.  Anyhow, I wish you the best of luck on this treatment!

kaycancer

Thanks for the info im really nervous though

pajim

Crone, I postponed mine a week last month.  Doc said no sweat.  I did rather enjoy having an extra week for my rear to heal up.

Hey KayCancer,  welcome to the club.  I know the thread is Loooonnnnnggggg.  I couldn't read it all six months ago when I joined the club.

The basics are:  (1) warm up the shots.  Literally.  Ask the nurse to bring them out then stick them under your armpit or roll them in your hands for a while.  (2)  Ask the nurse to inject it slooooowwwwwly.  The label says 1-2 minutes -- usually I can get them to slow it down to about 45 seconds.  (3) relax the leg they are injecting.  Stand on the other leg. (4)  take a walk afterwards.  You don't want the castor oil to get "stuck".

There are other permutations -- some ladies need to hydrate.  Others get allergic reactions and need to take a benadryl before the shot.  The first few months I got lovely skin reactions (allergic drug reactions) but haven't had them lately.

All in all I find it a very easy treatment.  Even if it can be a pain in the butt.

FridayGirl

Hi Kaycancer,

I would just add that the nurses at my local hospital just make us lie down on the bed and roll over onto our sides for Faslodex injections.  At first I used to bruise terribly, then I bought some Arnica cream from a health store and rubbed that into the injection site - since then I have not been bothered with bruising.

blainejennifer

In addition to warming up the Faslodex, slow push, no weight on injected leg, and plenty of hydration, my oncology nurses recommend using the gluteal muscles right after the shot to help it disperse.

So, I make sure to take the stairs out of the building, and do a few knee bends before I get in the car. When I get home, I do those stretches where you get on your back, and pull your knee up to your chest. It seems to help banish the soreness.

Does anybody else get an attack of PMS-like blues in the first week after treatment? I've been spending one crap day every cycle, about two to three days after treatment. For now, I've just been taking a fistfull of Ativan and warning the family. And, my joints are really creaky. Small price to pay for effective treatment, she said with all her fingers crossed!

Crone

I just read about taking the Benadryl before and after the injections but what do you do once the itching has started? One injection site is fine, the other site is red and itching. What has anyone done to stop the itching. Does anyone get headache and stiff neck after shots - it may be a reaction to the flu shot that I received the same day.



Any help to keep me from tearing off my skin will be appreciated.

Tina2

Crone, when that happens to me--and it's not every time--I slather on globs of a generic version of Caladryl Clear and it works beautifully. (I don't want to take Benedryl: it knocks me out.) Interestingly, I have not had severe itching or a bad skin reaction ever since the nurse started using a numbing spray pre-injection.

Tina

susan_02143

Crone, Pleased that someone else could help. I don't get particularly itchy following treatment, have never taken benadryl in my life, so would be of absolutely NO use to you.

Jennifer, My body goes through a predicable cycle following my injection, though I wouldn't call it PMS-like. The first two days I just feel tired and fatigued [different things for me.] Then some where around day 6, I once again feel "off." I need a nap, my optimism is fairly low, it is hard to get motivated to do much, but I can if I have a client meeting or something else on my schedule. It has been a while since I mapped this out in a journal, so I am not being as precise as I would like.

*susan*

beth1118

I have had 3 shots of faslodex so far.  I would love to hear from those who have had tumors shrink while on it.  How long did it take to see results?  

how long after starting it did you see results.  

susan_02143

beth,

Mine shrunk, and can't be found anymore. There was a mixup so I wasn't rescanned for almost a year after starting Faslodex so giving you a time frame would be difficult. My tumor markers came back down after three months which for me, is a very good indication.

I am not alone in having good results, but if you read some of the previous pages, there have been some women who have not found Faslodex to be their magic bullet.

I am approaching month 45 of Faslodex. For me, it has been a good thing. Hope it is for you as well,

*susan*

Tina2

Beth, Faslodex rendered my lung mets stable/shrunken within less than a year, and inactive half a year after that!

Crone, I had another thought re: itching. I discovered that the never-exposed-to-sun skin on my delicate derriere is allergic to the adhesive in the band-aids the nurse applied after the injections. Since she started using a bit of gauze held by paper tape, the itching is almost negligible, no longer maddening. I started to notice the skin on my arm was reacting to adhesives on tape after blood draws too. I think dermatologic reactions to adhesives are fairly common.Tip to all: remove any adhesive-containing tape from your body ASAP. Ask for paper tape whenever possible. And remove it as soon as you can.

Tina

pajim

Crone,  I had an itchy drug rash the first few times I got the shot.  pharmacist said hydrocortisone cream.  Available over the counter. I slathered it on and it absolutely did the job.  I haven't had said rash for a few months now.

Beth, my last scans showed all the mini-spots were gone.  That was three months after starting Faslodex.  My spinal mets were also better (lit up less) but that could also be due to the radiation.  MO said we would ride the wave -- hopefully for a long time.  I won't know until the next set of scans (after New Year I'd guess) whether it's really working.  For me it's early days yet.

Tina2

I can't help but notice that I'm losing more hair: many more strands in my hands during a shower shampoo, lots on the bathroom floor and sink where I blow-dry it. I use only warm, not hot, water and dryer settings. It's not coming out in clumps, as I know it does with some chemo treatments, but it is certainly, steadily coming out. Fortunately I have a thick head of hair (maybe a thick head as well) so the loss is not showing. I've begun taking Biotin on the advice of my hairdresser. Any other suggestions from the Fanny Pick?



Tina

hollander

Hi Tina-

I've had the same issue. It became more noticeable after I added Aromasin to the Faslodex. My oncologist suggested biotin, and I have some friends who have used Nioxin products. They don't have cancer but said it had helped with their thinning. I started with the Nioxin routine abut 3 weeks ago, so it's still too early to know if it will help. My hair stylist told me about a hair "filler", which is a keratin powder, and can be applied to those areas where scalp is showing more than normal. The brand is Toppik, and is available at beauty supply stores. It comes in several colors, so you can come close to matching your color. It's easy to apply-- just tap the container gently over the area that needs coverage, and it looks like your hair has filled in! It lasts until you shampoo again. It does not look like that creepy spray that's advertised for men with bald spots. I've been really happy with the results. Just wish the real hair would stop falling out and start growing back faster!!

Lynne

I got the results from my recent scans on Fri. No tumors in my lungs and no new mets. Same as the scans 3 months ago. I've been on this treatment since we found the mets to my spine and lungs June 2012, 7 years after my original Stage 1 diagnosis. Every scan (which I get every 3 months) showed the tumors in my lungs and lymph nodes shrinking more each time. My oncologist told me the average is a year on Faslodex. I'm glad that I'm above average! 1 year and 4 months now. I hope it keeps on working. : )

Groovywilma

Lynne,

That's fantastic! Yay for above average!!! I hope you have many years on this treatment!!!

Tina2

Lynne, wonderful news. Long may your Fanny Pack flag fly!

Hollander, many thanks for the great advice and information. I will check out Nioxin today. It's good to know about Toppik even though I don't need it at the moment. Very glad that it's working for you.

Tina

pajim

Congratulations Lynne!

Last paper I saw shows that 25% of people last 3+ years on this treatment. Just need to up all of our percentile.

Or another way to read it is that 50% of people who last one year will last 3 years.

susan_02143

Pam,

That is my anecdotal experience over my 3 1/2 years. Those people who get a positive response from this drug get quite a few years. The ones that don't, have to move on quickly. I think an average in this case is misleading since it counts people like FRAPP who were pulled off the drug before the first 28 days had past, to me, that has gotten over three years.

*susan*

MaryLW

Lynne, good for you! Great news! Susan, I think you're right. I've been on Faslodex just since March, but I think I've had a progression already. I'll find out soon. Does anybody know what comes after Faslodex? I guess it depends on what you've had before and how much and where the progression is, huh?

Lynne

Thanks everyone! MaryLW for myself, the next treatment will be Xoleda, a chemo pill. I didn't have chemo when I was first diagnosed 8 yrs ago. Only radiation. Not sure if it's the same for all. There is a new treatment (sorry, I can't remember the name, I know it had numbers in it though,RU240?) that came out about a year go (right after I was diagnosed again) that is similar to Faslodex. It was used for bladder (or kidney?) cancer before. They wanted to put me on that first following Faslodex, till they found out I had lots of side effects the first time around, when I was on the aromotase inhibitors, and had to stop at 3 1/2 yrs after trying them all.

I hope you get good news, and can stay on this treatment.

Hugs!

Tina2

MaryLW, I once asked my oncologist what I might go on once Faslodex failed me. After a long pause, during which I imagined he was considering everything including possibly strangling me, he said "Probably Femara."

Tina

MaryLW

Thanks, Lynne and Tina. I'll be glad when I get the scan over with and know what's next. The waiting And uncertainty is the worst part.

pajim

Mary, I have no idea what's next; I've never asked. I assume Xeloda but maybe a trial will come along.

I'm really sorry to hear you think you might have progression. Hopefully you'll turn out to be wrong. Waiting must indeed be the worst part.

Pam

sandilee

My onc has said he would probably try Tamoxifen (I've never been on it) after Faslodex. I was surprised, but he is pretty smart, so I'd give it a try. He wants to save Aromasin for the Aromasin/Affinitor combo at some point down the line.

Today I had my 28th dose of Faslodex. It's been very good to me. I'll be getting scans in two weeks.

MaryLW

on a good note--we went to Gettysburg today and had a really nice time. The government shut down has affected where you're allowed to go on the battlefields, but the visitor center, museum, and bus tour guides are all private, so we didn't feel like we missed anything. The bus tour just went on a somewhat different route, which seemed fine to us. We were planning to spend the last part of the trip in DC, but that may not happen now. Tomorrow we're going to the Hershey chocolate factory!

Tina2

MaryLW, tell your bus tour organizer not to give up on the DC area. The Smithsonian museums, monuments and memorials may be closed, but look what's just down the road!

http://www.mountvernon.org/

Tina

MaryLW

Tina, thanks for the info. That's great!

hollander

Greetings to the fanny pack--

I had my 10th Faslodex injection on Thursday, and have had not a minute of soreness this time. I had a Zometa infusion first, and found the best chair ever in the infusion area-- it had massage and heat options! So I cranked that sucker up, sat back, and warmed up for 30 minutes before the Faslodex. I'm thinking that having the injection site pre-warmed may have helped. Maybe it was a coincidence, but it's been nice to have a weekend with no SE's.

But I have a feeling that this have been my last time with the Faslodex. Labs came back late on Friday, and my MO's assistant called to say that my liver numbers were a little up (and they've always been normal), and my tumor markers have gone from 68 to 94. She wants to repeat blood work in 2 weeks, not wait for 4, and schedule a PET scan. Nice way to start the weekend!!! I'm thinking that we skip the blood work and just do the PET. The MO said I looked great, and I've been feeling good-- just occasional pains that advil handles. Now I'm thinking that those pains must be mets (spine, hip, ribs, abdominal), or maybe they're Aromasin SE's. I guess the scan will tell all, or enough...

I woke up this morning and noticed a "blistery" area on my reconstructed breast that I've never had in the 6+ years from my original surgery. I'm trying not to freak out, but on top of Friday's call, it's hard not to. It was fine at my exam on Thursday. Maybe lymphedema? Maybe skin mets? I'll be calling in the morning. I've just gotten used to the idea of bone mets, and now I may have liver to deal with? At diagnosis in Feb., the MO said this was slow growing, and the cells were the type that just sat there and didn't do much. So where did these crazy ones come from? I hate this disease. Why won't it behave and do what we want it to do?

Thanks for letting me vent. I don't want to freak my family out until I know more, and all of you know what this feels like. Hugs to you on Metastatic BC awareness day, or whatever they're calling our special day on October 13!