Faslodex Girls

Have many of you get your Faslodex injection one at a time?  They have always give me mine both at the same time on the count of 3.  I hold on to the arms of the chemo chair and they do a countdown of 3.  Last time I didn't get sore at all but I think hitting the same area made it first sting for a bit but then that stopped.

I got the real Miralax - someone on the constipation thread said something about putting it in coffee - not sure about that or my occasional diet pepsi either.  I am going to try the Gerber organic prunes and see if it helps.

Shirley, we color my hair and then I get the highlights with the cap thing.like you do.  Glad to hear that you haven't had a problem with that.  Last time the color really burned, made my scalp itch.  Hadn't done that before.   

Did I mention that I had a PET/CT scan yesterday????

On my treatment visit in Jan, I complained of my left hip pain.  It was more than just the joint pain from treatments.  My CT scan of the pelvis didn't show any mets beyond the pelvis - per the reports.

Oncologist ordered an xray of my hip.  I got the call it showed no mets and no fracture.  So my mind starts thinking - if a chest xray didn't show the mets in my sternum or ribs would a regular xray show mets in my hip. 

I called my radiation oncologist, a family friend.  My oncologist had let him know of my mets and he said regular xay would not show mets unless it was a really big area.  He ordered my scans (out of town research center) and reviewed them.  He said there was no mets in Nov. below my pelvis (what the reports from the research center also said) but only way to tell was a PET/CT. Had that yesterday.

He just called - small cluster met lesions in the left hip.  Faslodex was keeping the peritoneum mets in check; didn't see the lesion in my liver.  I was scheduled to go in and talk to him on Monday and we will be using that time to do a bit of radiation to my hip for pain.  I understand some of my pain may also be from my back but with the mets there, it is worth a try to see if I can get some relief.  Not fun being awake at 4 am because your hip hurts and you can't get comfortable to sleep.

So seems Faslodex is working in some ways but not so much in others but then I haven't been on it that long.  I am not quite sure how oncologist is going to handle my taking matters into my own hand but frankly, I trust him in my treatment, but he and I have a communication problem.  He just doesn't want to talk but is more of "let me worry about those things"   I am NOT one of those people that can just say sure and walk on. 

Worked in medicine to many years; I am one that really needs to know and hope we can work this out between us now that I have mets.  I am going to really try to get him to understand this on my next visit.  I really, really, really, hate the thought of going elsewhere.   I like him; trust him - just need him to talk to me.  Does that make sense?

I lie down for my Faslodex injections and I get them one at a time in the SAME hip.  My other hip spasms something awful when the needle is put in, probably due to the damage from the mets.  I'm going to take Lulubee's advice and try a Valium beforehand, next time. 

Naniam - sorry to hear about the new mets.  Those little buggers just keep on moving.  I'll be interested (scared is more like it, lol) to see where my new mets are.  I don't have any new obvious areas of pain. 

Lulubee - the walking to help with the Faslodex does seem to make sense.  I've found that stretching out that area helps as well.  As for my other issue, I didn't bother to take the Calm last night because I just didn't feel like it and it was a good thing, too, because it really kicked iinto high gear this morning. lol I think if I take 1 tsp every night or morning, it might evventually keep me regular.  I'm going to give it a try.

Eileen, I had great difficulty with the first two Faslodex injections - -same thing you experienced.  I have had 4 doses and this last one was the easiest.  Same thing with the Zometa - supposed to get easier as your body adjust.    I had headaches, nausea and a bit off balance with the first two and the 3rd one with my first Zometa was horrible joint pain.  As I said, last one was much better.

On my scans in early November I didn't have any mets in my hips.  Late December I was having left hip pain and it increased that I mentioned to my oncologist in January.  I don't think he thought much about it as my scans were ok in November and he ordered a regular hip xray and of course it was fine.  It continued to get worse. I called my radiation oncologist; he got copies of my CT's and said they showed no mets in my hips but he suggested a PET.  Had that a week ago today, he called on Saturday and said I did have mets in my left hip.  I got marked for radiation on Monday and need 10 treatments to my hip.  I have 6 left.

Starting Wed. I had some " different" hip pain and increasing yesterday and I had a miserable night.  Vicodin did not touch the pain and I couldn't sleep. RO told me today that I had enough treatments now that it was really starting to hit the cancer cells and I was having inflammation and swelling of tissue. Gave me much stronger pain meds - they make the pain tolerable but I had itched before with them and after 3 doses - itcing again.

One thing seems to set of another and it seems to keep going sometimes - grrrrr !

Don't think you would call this progression - don't think I have been on Faslodex long enough.  Just wish it would kick in. 

I posted this the other day on the Hormonal Treatment thread and will repost here for the reading pleasure of the Fabulous Faslodex Girls:

Friends,

Good news for yours truly. The latest CT scan of my lungs shows the metastasis is continuing to shrink and that the other areas in question are stable. The Faslodex is doing its job! I will have a bone scan in a few weeks to check out ongoing pain in my lower back and hip, but my oncologist thinks and I hope it is due to the antihormonal action of Faslodex agravating arthritis or another degenerative condition that showed up on my last bone scan in July. I had my ninth treatment today and am feeling pretty good aside from the usual post-injection pain and the back issues. I am determined to adjust to all of this and not let it run my life, and feel I'm finally doing so. Thank you all for being here and contributing your experiences, feelings, advice, energy, wit and love to this community that is so valuable to so many.

Tina

Tina, so good to see that you got good results in the lung lesions.  May Faslodex keep on doing it's magic ! 

Thanks for sharing. 

Good luck with your treatments.  My last treatment they stung like fire to but I was ok afterwards. They don't offer anytype of packs to apply no do they rub the area.  Hope you do well with the treatments.

My next one is Monday .  Sorry I didn't see your note sooner, I've been taking some radiation to my hip and not reading as closely.

Hey gals,

Just wanted to report in.  I've been on Faslodex now for a couple months and it is going great.  My onc's nurse called last night and my CTC test is ZERO!  We use the CTC as a tumor marker for me (regular TMs are always normal, but the CTC has been slightly elevated when I've had progression).  Anyway, I'm so thankful to be on a hormone treatment after blasting through Xeloda with no success.

Have a great weekend my friends. 

My next treatment is Monday.  Guess this will be considered my 3rd dose after the loading doses.

In Nov. the CT of my pelvis and abdomen showed no mets below the pelvis - nothing in my hips.  I had my first loading dose of Faslodex on Nov.21st.  By late December I started having hip pain which progressively got worse.  I mentioned it on my mid-Jan appointment and a regular hip xray was ordered.  It was fine - the pain continually got worse.  So called my radiation oncologist - he reviewed the CT scans and agreed nothing showed in my hip.  He ordered a PET/CT - it was there - in the hip in 3 different places.  I just finished 10 rads to the hip. 

So, I'm thinking this isn't a progression but simply not on the drug long enough.

I knew the Faslodex especially but Zometa also could cause stomach issues - mine is bothering me but it is the steroids to come that I just can't handle because of stomach issues.  Not sure what I will do when that time arrives.

Nancy, good to read some good news - congrats.  My oncologist doesn't do tumor markers; I really don't know what CEA is. 

Cynthia, well dang-it was hoping all would be ok.  I don't know anything about the drug you mentioned but hope it works well for you. 

I'm wondering how everyone is doing - lots haven't checked in for awhile; hoping they do.  . 

PJB - I think most of the time I am glad that my oncologist doesn't do the tumor markers.  I don't think I would do well having them to deal with.   I pray it is working on the next scan - that the tumor markers are just wrong. 

I am glad to have found this post....not sure I will figure it all out at one time but here we go....first b/c was 4/2008.  5mm, node negative, stage 1a, ER/PR+...yeah you heard right stage 1a...8/2010 mammo shows something suspicous in other breast, biopsy shows DCIS.  had been having hip pain, family dr. does mri....radiologist says "metastatic cancer".  every dr. i go to says "no way".  bone marrow biopsy, negative.  bone scan, negative.  repeat mri in 6 months, more "freckles" but no bone deterioation (i am sorry, i am tired and my spelling is bad).  bone biopsy done...again being told there is no way this is cancer, could be sarcoid or something else.  results come back...bone mets.

 so i have spent the last year trying arimidex (oh the side effects), aromasin (even worse side effects) back on the arimidex....but the tumor markers keep going up.  i don't get scanned because my scans look normal, onco goes by the tumor markers.

i had my second set of loading shots of the faslodex on 2/21...tuesday.  by friday i thought i got hit by a truck.  by sunday, my legs literally felt as though they couldn't support me.  the muscle spasms/cramps on both legs thighs and calves has been awful.  yesterday was better, today i feel as though i have got the worse case of hip bursitis ever.

 i have read through the entire faslodex girls...and thank you for being here but i didn't read anyone having the extent of s/e that i seem to be a week after the injections.  i do know when i saw the onco on 2/21 and complained of fatigue he said it could get worse before it gets better but i don't know about this pain?

 i take magnesium/vit. d/potassium and a whole host of supplements.  any ideas/suggestions/thoughts????  and i am sorry that it had to be under these circumstances for all of us that we meet.  prayers. 

I had a PET scan last Wednesday and found out friday that my lymph nodes under my right arm are getting worse.  Also a spot on my ribs that had went away is back now.  I had only been on Faslodex since December but the oncolgist is stopping my treatment,  He is also stopping my Herceptin.  He is looking into clinical trials I will find out tommorrow what my new course of action will be.  If I dont qualify for trials I will be starting Xeloda and a pill that does the same thing as Herceptin, i just cant remember what it is called.  I will be continuing my Zometa.  Thank you all for being here for me when I needed it. 

Okay, I'm desperate and need help. I started Faslodex last month, did my 2 loading doses, and on Monday had my first once-a-month shots. I came off Femara, which caused a lot of bone/joint pain that was controlled by oxycontin.

But faslodex is kicking my butt!!! I get welts where the shots are, and an itchy rash on my behind that lasts a good week. I also feel like I have the flu. Throwing up, shaky, in pain all over. I took off work yesterday, felt pretty decent by evening, and thought it was over. I woke up today literally unable to move for the pain. Mostly it's in the entire area between knees and waist. I can hardly stand, can hardly sit, and just...HURT.

Has anyone had this? I don't want to go off it. I want to give it a fair trial, but I can't keep taking off work. I've already used my sick leave for this school year, and even though I have FMLA protection, I don't get paid when I take off. I'm the sole support for my family and I have to work. But this is as bad as chemo! Does your body get used to it? Help!!!

The lab nurses told me to never put ice on the injection sites, because that would hold up the serum in the buttock muscles and only make things worse.  They told me to walk, walk, walk after the shot, and to use heat if I wanted. I've had much better results when I've walked around a nearby mall a couple of times right after the shots, before driving home.

My onc prescribed hydrocodone with advil (Vicoprofen) to take on the days following the shots, and believe me, I take them for about four to five days.  It's not magic, but it does help.  Water, sleep, and long showers help, too.

Tell the nurse to Take Her Time injecting the stuff.  I think they hurry sometimes because they think it would help us if they got it over with... but slow and steady is best, I think.  I've only had one out of six shots so far cause me any soreness, and it was the only one given to me by a different nurse.  She went faster than the other nurse, and that side of my bum has been tender to the touch all month! Believe me, on Friday I am going back to getting the shots one at a time, by my regular nurse!