Faslodex Girls Thread
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Saw the MO at MSKCC and she feels I'm the perfect candidate for the Ibrance/ letrozole combo. She also put me into the study where they test your cancer tissue for over 400 genomes so they can target the therapy specifically for the oatients needs. She started me on the letrozole right away and I'm waiting to get approval from the specialty pharmacy for the Ibrance using Pfizers special copayment since my insurance company said the drug is too new to be on their approved list. It's always something!!! Hoping the combo is really the miracle drug they think it will be!
Babs
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hi freebird,
I haven't been on this site for a long time and I was just looking for info on faslodex when I saw your post.
Last year was a bad year for me. I have had mets on lungs for over 3 years, bone mets for 2 and liver mets 15 months. Last Aug after taxotere which didn't work my cancer sent more aggressive and my calcium levels went very high. Had rehydration for this and denusanab and venorilbine and after 4/5 months my cancer is at the moment inactive! Onc says it is back under control. So don't give up free bird. You will find a treatment that will work for you. I am just on faslodex now so hoping I stay stable but onc says there are lots of treatments to try yet and he already has something in mind if faslodex doesn't work.
All my good wishes. Sheila. Xx
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Wow...what a Monday I had...In the ER again...I am under quarantine due to a Highly contagious intestinal infection called C Difficile Colitis...will it ever stop...my immune system is so low...that I'll catch anything...Well...start another new chemo Thursday...I hope they find something...Going to have a blood transfusion also...Another fun full week for me... Oh boy!!
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feeling determined. 0 -
Yikes Freebird - my DH had c.diff - it's a bugger for sure. Any idea how you got it? What's the new chemo? Here's hoping the transfusion bucks you up. Feeling determined for you and sending hugs, S.
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OK been approved for Ibrance, with only $4500.00 co pay. Ideas please!
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Myra- on the manufacturer's website they have information about a program that you may be eligible for. Apparently you have to have commercial insurance (not medicare or medicaid) , but it looks promising. Scroll down until you see the "Co-Pay One Card" info.
http://www.ibrance.com/getting-ibrance0 -
Myra-Also, you might PM Romansma, as she is starting the drug and would have good information.
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Thank you sandilee for your suggestions. Today will be a day of investigation now that the shock has worn off! Will keep all posted
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Freebird prayers going out for you!I have had Faslodex for 4 years now and in spite of progression of my lymph nodes, I have remained on it.
My onc. added Kadcyla which did get rid of the nodes. I have pain in my knees and it is too sporadic to be arthritis, I think.
I really don't know if my nurses wear gloves, and I will have to notice tomorrow. But they always wear gloves for my infusions of Herceptin. They are very strict there, TG.
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You are an inspiration, Denny!
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Report to the Pack: My nurse does not wear gloves when she give the injections. I made a point of checking at today's appointment. She does, however, spray numbing spray on the area, then swabs it with alcohol. After the shots, she places a piece of gauze and paper tape on the punctured areas. I do not feel at any sort of risk from this.
The injections are becoming more painful. The needles hurt going in and out and the area stings for quite a while afterward. My nurse said today that scar tissue is responsible for this and that she will have to drop a bit lower. She added that she will have to be careful to avoid my sciatic nerve. Needless to say, I wholeheartedly agreed!
Tina
P.S. Do any of you notice if your face flushes bright red after the injections? Mine does and stays that way for at least an hour. I've become so accustomed to this that it I've never asked anyone about it.
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Oh Tina, Not happy to hear that your injections have gotten more painful. Mine have gotten less so since I have a new nurse who injects higher and wider, so to speak. But, I think for us folks who get a lot of time on this drug, the scar tissue is an issue. I have never looked at my face post-injection. Maybe I can remember to do that next month.
*susan*
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Susan, I always visit the restroom before I leave the doctor's office, so I see the flushing. It's pronounced, rather dramatic. At first I thought it might be an effect of the artificial light in the building, but I am told that my face is also very red when I'm outside. It's usually calmed down by the time I get home.
Tina
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My face has been red since I started taking digoxin for my a-fib but now that I'm on Faslodex it has reddened substantially so I get a lot of "are you feeling o.k." have you taken your bp lately - whatever. I have had three sets of shots now and my one knee is absolutely killing me - I might try the Claritin "trick" and see if it works.
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So far at the 1 year mark (yay!) my injections are less painful and the pain doesn't come back on and off for a couple of weeks they way it did the first few months, Tina, I'm sorry yours are getting worse now!
I haven't noticed the red face from Faslodex, but I do notice that when it's close to time for my next Lupron shot my face gets red during my hot flashes (otherwise I'm just uncomfortable and sweaty but not red).
Red faces, pain, aching, strange smells, so weird all the things that are tied to these meds and hormones (or lack thereof)!
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Roses, I too get hot flashes several days before I'm due for the next Faslodex injections. The flushed face seems to comes and go through the month, but is never as bright and completely red as it is just after the injections. I'll have to start keeping notes.
Maybe I can sell tickets?
Tina
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Sorry to hear about your increased pain, Tina. Is the same nurse giving the shots? No face flushing that I have noticed after or during the month. I wonder if it's a sort of allergic reaction to the medication.
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Yes, Sandilee, the same nurse. She has been talking about the scar tissue problem for a couple of months and said yesterday she would have to find other spots. I realize my red face could be an allergic reaction, but find it puzzling that it dissipates after a while and then returns sporadically through the month.
I regularly find myself thinking that all the annoying health issues I'm having--increasing weight, increasing fatigue, increasing joint pain---are probably the result of long-term estrogen deprivation and no one knows how to fix them without taking me off the medication that is saving my life. Then I refute this realization because I don't want to accept that all of these things can't be fixed! My back and knees have been steadily worsening, and recently even my wrists and hands have begun to hurt. Do I go back to the arthritis doctor and start popping NSAIDs and having pointless MRIs again? Or is there something else I can do?
On the bright side, although my dry scalp continues to produce snowstorms when I use the dandruff shampoo recommended months ago by a dermatologist, I have found a non-detergent hair cleanser called "Wen," recommended by my hairdresser, is more effective at turning those blizzards into flurries.
Whinging and whining,Tina
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I hear you! Whine away.
I also have weight gain, but it's only about 5 pounds- it's just that the pounds are not where I want them!
My right knee hurts now and then, and it never did before. Faslodex or just aging? Who knows. I tend to worry more about what I'm going to do when I have to get off of this medication than whatever side effects i may be having with it. If it's Affinitor, I know I'll be looking back fondly at my Faslodex days!
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I was having such muscle spasms and bone and muscle pain that I fell back on the Claritin that I used when on the AIs and it worked!!! At least it has for the past couple of days and nothing else was touching the pain - I know I have some arthritis but I didn't have any until the AIs and now when the knee started I was getting crazy - I've never had problems with my knees - my feet and lower back yes but with the Claritin everything has stopped hurting for now - no Tylenol Arthritis for two days - I am thrilled!
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Tina, Sorry about your red skin reaction. What next..huh? If I had to throw a guess, it would be to tie the injection prep to the medication mixture. It really sounds like an allergic incapatability ....the drugs injected with the basic Faslodex, and the topical alcohol and numbing substance may be a problem for you. I would suggest that your nurse check with Onc re using a topical analgesic such as lidocaine to be applied pre injection and then to prep the skin with a more skin friendly cleanse. Hopefully that will be all it will take. There are other hypoallergenic skin preps that are commonly used. No more blushing :-).
Peggy
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Tina, I have the flushing face problem too., but not like you happened right after injection. My face turns red from time to time, more often recently. Since I have had this occasional flushing face for over 50 years, I don't think it is related to Faslodex.
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Hi 208Sandy,
Just wanted to mention if the Claritan stops working for you might want to get your magnesium levels checked as low levels will cause muscle spasms. Boy are those spasms painful!!! I started with one 250mg tablet a day and had to add another one to get it under control.
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Hi Tina, I've never noticed my face getting hot. Of course as soon as they give the shots I am out the door headed for work. I'm not sure I would notice.
I do notice that I get many more hot flashes in the 2-3 days before the shot. Glad to hear it isn't just me.
And dear, you are not whining. Creeeaaakk. That's me!
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Had my Mag levels checked and they were fine but I am taking a very low dose and the spasms seem to have stopped - my onc and PCP are very cautious regarding the magnesium - they've seen a few cases lately of overdose and it's not pretty I guess because it's OTC people are "mega-dosing".
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Sandy, i always have my levels checked every month and they always are on the low side (below normal). I had no idea people were "mega dosing".
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I'm in Susan Ann's camp with the magnesium. Stops my leg cramps and those other weird pinching feelings in my legs.
I still have no idea if Faslodex is working or not but I will hang with it for a good bit longer since my allergies prohibit so many of the other drugs. Had CT scans and blood work done three weeks ago but snow got in the way of my appointment and the thoughtful doctor left town for two weeks. I think he missed the lecture on patient/doctor relationships.
Have debated sharing this because I know how skeptical I would be if I read it. In January I went on the Ketogenic diet, one hope being that it might help the Faslodex work. Called desperation thinking. Anyway, I have lost 12 pounds, a lot of my arthritis issues have improved, really improved and I feel better. I lost the 12 lbs by early February and did not change my activity level. It stayed at a notch or two above sedentary. I have never suspected I had carb issues nor do I think so now. I feel so much better that I have decided to stick with the low carb diet even tho I'm not looking to drop any more lbs.You can drink wine on this diet tho it will slow down your weight loss. My joints are happier. I'm 73 so no big surprise that I have joint problems. The surprise is how much better they are in spite of Faslodex.
For some of you who are really hurting, which is where I was, could be worth a try. I started to feel the difference in my joints early on on the diet. Not like you have to stay with it for months to know if it's helping.
Mary
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Does anyone else have a rash on their arms and legs? Mine started with a few red dots and then progressed. My elbows are solid dark pink/red.
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Gina, Yes. I started getting a rash around both elbows several weeks ago: raised red dots and pink patches. Never had anything like it.
I think in my case it's just dry skin from winter and estrogen deprivation. I slathered on Vaseline Intensive Care for a few days and it's calmed down considerably.
Yours sounds worse. Time to check with a dermatologist?
Tina
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I've been on Faslodex for about six months now, and I've been having the worst aches and pains in my lower back and legs, especially at night. Also some neuropathy in my feet, which I've never had before. Is this something that others have experienced? Combined with my stupid nerve damage to back and ribs, I've pretty much got the whole body covered now! Grrrr…
Thanks, ladies!
Rose.
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