Faslodex Girls

Brenda, please give us updates on how all that works for you.  I'm hoping the fatigue -- if it is in fact from the shots -- won't persist past the loading doses (I have one more two-weeker to go before going to monthly).  

For now I'd like to try to see how much I can address it with natural means.  I take a low dose of Rhodiola rosea first thing in the morning, and it gives me a boost of pep and alertness.  And I know I need to swap out my coffee for green tea again.  But we got a new Keurig toy in the fall -- and pronto! -- I fell right off the healthy green tea wagon in a hurry.  I do love me some good coffee.

I think probably what I really need is a long walk in the sunshine every day or two, and it wouldn't hurt me too much to get up off my duff and replace the dead batteries in my elliptical, ya know?  And then get my big duff up ON the elliptical -- yeah, that too.

PJB - Wow, congrats.  That is so awesome.  I hope it works for you for a long, long time!

Cynthia, I know what you mean -- I told a friend yesterday that I don't think I really remember what it's like to be inside a completely comfortable body anymore.  

Re: pain -- My onc handed me a script for hydrocodone/apap 10/325 when she ordered my first round of shots.  I told her I thought I would be fine with just Advil, and she said, "Let's just fill the prescription anyway, okay?"  Oooookayyyyy.

Well, when the faslo-truck smacked me in the back later on, I did wind up taking some, and it did help better than Advil alone had been.  But I happen to know that Tylenol doesn't do jack for me, and that's what the "apap" part means. I also felt like 10mg was a bit heavy on the codones for me -- I was comfier but I was also nodding off in my chair.  

So yesterday I asked the PRN if there was any chance there was a hydrocodone formulation with Advil instead, and woo hoo, there is -- and it's 7.5 mg with 200mg ibuprofen.  That's worked better for me.  

Get something to get you out of pain, and keep trying different amounts and formulas till you find something that works for you. I'm convinced pain is detrimental to our health in ways we don't even understand yet. 

Lulubee - thanks for the info on the meds.  I will defiinitely ask for that as I also have better results with ibuprofen vs tylenol.  I usually have great results with the Darvocet, but I think it works better on muscle pain vs bone pain.  I'm doing much better today with just a twinge here and there.  I'm so relieved the pain finally let up.  My daughter's birthday is next weekend, and she also has a project due in Social Studies that I need to help her gather supplies for.  It's difficult to explain to little ones how being in pain prevents me from doing things. 

Naniam - I hope your labs are normal this time.  Sorry to hear how much fatigue you are dealing with.  I wonder if it could be due to having your Faslodex at the same time as the bisphosphonate.  I'm pretty sure that if I had to have them at the same time, that I would be down for at least a week.  The Aredia especially makes me feel fatigued.  I just want to sit around for a few days afterwards.

Shirley, my loading doses gave me lots of pain.  This is my first monthly (4th injection) of Faslodex  and 2nd Zometa injection and this time not near as bad. Makes me wonder if it is just our bodies learning to handle the Faslodex.  Also, Faslodex is my first treatment,  I think you have been on some other AI's or treatment.   I don't know, just all a learning experience.

For me, I didn't have this kind of tiredness, fatigue prior to starting treatment.  I know a neurologist told me in 2006 when I needed to see him, there as no reason anyone had to suffer with fatigue from chemo.  I am definitely not a pill popper and don't use the pain meds at the prescribed level but not into lots of the regimens that requires lots of supplements.  I do try to eat  more healthy and walk as weather allows.  WIth my back, can't do other exercise regimens.  

Don't feel bad, not posting as often either.   Good luck with the visit on the 31st.  Hope all is good, no surprises.  Learned I should be having my first scan end of March/first of April. 

Hi Naniam,

 I bought some hair dye the other day, read about it online, looked up the ingredients and then chickened out. I took it back for a refund.

 I'm just going to let my gray come in. It's not gorgeous, but it's natural and certainly easy. 

 I did buy a wig, though.  My hair was coming out with the Faslodex (it has since stopped thinning, I think) so I bought it just in case my hair really started to look frightful. It's pretty cute, but I haven't really gotten used to wearing it.  So for now, I'm just going to go natural. 

  I can't explain why your scalp would be sore this time, although I can imagine that our hair is thinner and dryer and doesn't take the color as well. I'd probably go to a salon and see what they can do if I hated how it looked.  Good luck!   

I had my third dose of Zometa (infusion) and 4th Faslodex (injection to each butt cheek), yesterday (Jan.26).  Like many of you, I had my 2nd Faslodex injection (without the Zometa) 2 weeks after the first dose.  Thankfully, I didn't have any major side effects. I was a bit more tired for a few days and my gastrointestinal system was a little "off."  The injection sites were both tender for about a week. I'm begining to think the Zometa is the cause of most of my side effects. (In addition, I have a weird taste in my mouth and my urine smells "weird"/bad for four or five days).

When I told my onco about the pain and flu-like symptoms (after my first infusion) she added a corticosteroid to my IV drip (I get blood drawn, a saline flush, the steroid drip, then the zometa drip). That has helped me tremendously!  I wonder if there's a steroid type med that would help you girls suffering the painful side effects with the Faslodex?

Scott Hamilton has a good informative web-site where I found these links--

http://www.chemocare.com/bio/zometa.asp 

http://www.chemocare.com/bio/faslodex.asp

On his site, I noticed this bullet point, especially:

"There is no relationship between the presence or severity of side effects and the effectiveness of the medication. "

I don't think pain or any other effect is really an indicator of the drug "working."  Frankly, I think it's a myth or, at least, a "theory."

My onco said I'd have a scan in March or April (just like you, Naniam) to measure the drugs' effectiveness.  She's going to check the tumor markers, too (I believe that's done through a blood test).

As for hair color--I tried a permanent color (I use light blonde) and it did sting my scalp.  I use a semi permanent color now and it does not sting like the other, "stronger" chemical mix.

I've got a question for all of you--How do you tell bone pain, from nerve pain, from muscle pain?

I'm staying home today--mostly resting, still have my p.j's on (at noon) , face feels a little flushed, body feels a tiny bit chilled and I'm very, very tired.  I might go back to bed for a while and the heck with household chores!  (((((Hugs)))))

Nan, I get paper-wrapped highlights put in my hair every other month.  Of course, I just started Faslodex three weeks ago, so the jury is out on how Faslodex might change things.  But I mention it because highlighting does keep the color off your scalp... just a thought.

MKL - welcome!  Glad you found us. Interesting that you mention depression. I have been unusually down in the dumps this week, and I too have wondered if it's Faslodex.  My trusty trio of herbs for mood maintenance, which have been noticeably helping me for the past few months, is not quite doing the trick right now.  I was weepy yesterday, and finally took a Valium yesterday afternoon just to settle down.  And I am shocked at the depths of my lethargy... I have spent more time in my cushy chair this month than I have in the past two years, I think.  If the gloomies & lazies continue like this, I will be thinking seriously about Wellbutrin or something.  

Aerial -- I have a slight metallic taste in my mouth after the Faslodex shot.  This time it was most pronounced for the first 48 hours or so, but it still lingers a bit.  An my lower gut was a little crampy after both my shot rounds so far... and I have been struggling with constipation.  Anybody else? 

 I will say though, that after 15 months on Femara, Faslodex is still feeling like a holiday by comparison, so far.

Okay ladies, now that BCO is all abuzz with poop talk (you've all seen the new and very hopping thread about constipation, right?), I am really curious if any of you are experiencing what I am...

I have always been super regular, even when I was on Femara.  But ever since I started Faslodex + Xgeva in January everything has changed.  I am having to work on this every single day just to keep things moving at all.  HUGE change.

Anybody else notice this? 

Well, well, well.  Alrighty then.  So I guess we all need to go hang out on the constipation thread, huh?  Ha.

The nurse didn't say anything to me about this, but she DID tell me to drink a ton of water after my shots to help my kidneys flush it out, and "don't put off going to pee because you don't want this stuff just sitting in your bladder either."  Sure enough, after my second round of shots I didn't drink as much right away as I should have, and my pee did burn a little that evening. 

Maybe we all ought to share what our nurses have advised us to do?  No telling what we might learn...

Yes, I'm definitely having bowel issues.  I have IBS, so I just figured that was causing my issues; although, it had improved in the last couple of years.  It makes sense that my meds are contributing.  What makes me really annoyed is that it referring pain to my jaw and face.  I'm in more pain from the constipation, than anything else most of the time.  That's just not right.  lol

I've tried stool softeners, colace, and Miralax.  They all work to some degree, but not completely.  I hate the taste of the Miralax so I tend to use it last.  In a pinch, I've used ascorbic acid past bowel tolerance, but I have to have a chunk of free time before I do that.  It does work very well, though.  lol 

I think I need a plan to get this under control and keep it regular.

Lulubee - You crack me up.  lol  I actually have some Calm, but I can't remember why I got it.  I do remember that it didn't work for the reason I got it, but I don't think it was for "regularity".  It does taste better than Miralax, though, so I guess I can give it a try.  I have peeked into the constipation thread, but I didn't take notes which I what I really need to do if I'm going to remember anything.  I'll try the Calm and see if I have any results.  Thanks for the suggestion.

There is something wrong with my taste buds - Miralax doesn't taste bad to me.  Are there differnt kinds

Naniam - I have a generic Miralax so maybe there is a difference.  It's like drinking salt water. 

Lulubee - I'm having some results with the Calm (which is magnesium citrate).  I'm up to 2 heaping tsp at night and I gag it down, not crazy about the fizziness or flavor.  It has gotten things moving a bit, but not too much...I think I'm going to add another tsp and see how I like the results. It's gentle, which is good.  I'm not using anything else so I'll know just how well it works. 

No ice on my injections!  Thanks for the info.  I'm actually having less issues with the injection sites once the medication is in.  It's getting it in that seems to be problematic still.  My muscles cramp immediately and we have to wait for the spasm to pass, then go very slowly.  At least, it's better after that. 

I have my bone scan on Monday.  Not looking forward to it.  I feel really panicky when the scanner is over my face.  The hospital where I'm having it has called me 3 times trying to get money out of me.  I explained to the same person each time that I would have at least 3 more treatments/visits/labs before I even have my scan and I won't owe them as much as they think I will.  Grrr.  I quit returning their calls.  Seriously???  I've always paid them, what is up with that?

Shirley - good luck with your colonscopy. 

)

(I forgot to close my parentheses.)

(We can't have that, now can we?)