Faslodex Girls Thread
Comments
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Georgie-our chemo center does not let us take vitamins during radiation.
Who knows??? I guess you have to keep asking.
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I just received approval for Ibrance so will be getting a baseline scan sometime this month and get started trying to kick the progression back to the curb. Seems to have mostly recovered from rads I had recently, but sure didn't expect the SE I had to deal with, but they're mostly gone so yay.
I hope all our Faslodex friends are where they're suppose to be with treatment and minimal if any SE.
Amy
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Georgie, I told a mets friend of mine recently that we don't work for the oncologists, they work for us. (She was unhappy about continuing carboplatin in the face of ugly side-effects). In the end, all decisions are ours. I find that's a lot of pressure on me [at least] but I'm learing to accept input and handle it.
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Hi Ladies,
I had my onc appt. Thursday. My tumor markers went up from 74.5 to 77 in a month. I got my 5th falsodox shots also. I do not understand why my markers are not going down. My onc wants me to have a pet scan in January. My last one was in July. At the time I had only one small met in my pelvis. It was radiated. I still feel some pain off and on. Do you think I have more mets and the falsodex is not working? I am new at this. My radiation doctor told me I was oligiometastatic. I find this all so confusing:(
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lisa-that is a very small jump, and I wouldn't worry about a few points. It could be skewed by anything, really.
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lisa, I totally agree with Denny. My onc once said she is only concerned if TMs double. A variance of 2.5 pts. is nothing to worry about, unless it's part of or becomes a distinct upward trend. Sometimes our meds can make our cancer cells more active (tumor flare) as they die off.
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Lisajo, I third the "don't worry". a difference of 2.5 could easily be within the standard error of the test. Your markers may have gone down an equivalent amount.
The "object of the game" as my oncologist likes to say, is not a tumor marker of zero. It's (a) feeling well, and only them (b) having the mets stay stable (not grow, or even shrink). A scan every six months seems about right.
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Ladies, I have a question. I've been on Faslodex for 4+ years and now have to get both shots on one side from now on. My left sciatic nerve is bad as a result of many many shots. Anyone have experience with both shots one side?
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No, no experience with two shots on one side BUT they are quickly destroying the sciatic nerve on my right side (only been on Fas for a year). Also I have been having tremendous cramps in both hips and low back pain but when I mention to my onc or her nurse am told they don't think it's an se which is the reason I wish I could find another cancer clinic and may look for one in the New Year. Hope someone comes along to answer your question soon..
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Lindalou, your question, for which I don't have any firsthand input, has made me wonder... Is the sciatic nerve always going to be impacted by a shot in the buttocks, or can it be avoided if the shot is given more to the side, for example? I guess what I'm asking is, can the situation you find yourself in now and we're learning from be avoided by possibly giving more attention to placement, or is it just inevitable that monthly shots in the buttocks for several years will more than likely cause that kind of damage? Just wondering...
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Well it's getting close to Christmas and I just had my oncology appointment and lab work drawn and my last two loading doses Of Faslodex, now it's just 2 shots a month. Yesterday was my first night of the 2nd cycle of Ibrance. Outside of 5-6 days with some mild nausea, queasiness, I have not had any pain woohoo! I have had unusual extreme need for afternoon naps, twice lasting at least 2 hours. Pretty sure I have never ever had more than 5-10 min naps before.
My CBC did drop pretty low, but was able to complete the entire 21 days of IBRANCE. Wondered what the symptoms are for low CBC counts.
I have script for anti nausea med, but want to save them for severe nausea. I did get a big yeast infection in my mouth and some skin folds, that I was not able to treat with OTC med. Took 7 days of Diflucon it cleared it up, but I hadn't read that was a SE of either drug ? Anyone had this? I'm a slow Typis so gonna end this now and have an incident want to share with you all tomorrow.
Hugs,
Donna from Missour
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Thanks for replying
As I understand it, every time we get the shot, because it is with castor oil, that volume is thick and pushes on the sciatic nerve. Also the size of the needle contributes to it as well as where the shot is given. Mine have been given to the side and up higher lately. A few times though, the sciatic nerve was hit and then intense pain shot down my leg. I've built up a lot of scar tissue too in 4.5 years, so that plays a role. I'm guessing that placement does play a role and to the side and a bit higher is better, but my duration is what I think has caused the bigger problem. I will always have sciatica now on my left side. My nurse is looking into it as well, but she has never given it twice on one side. I may have to go down to one shot.
208Sandy, I get cramps too, but usually only right after the shot. If I massage it and walk it helps.
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When I started Faslodex, I asked the nurse if I always had to get the shots in my bottom because I have a flatty Patty butt. I do however have wonderful thigh muscles. My thought was one month butt, next month thighs etc. She said she had never given the shots anyplace but buttocks.
It makes sense to me because for years now babies get some of their injections in their thighs.
Many subQ injections are rotated, like insulin,
Getting 5 cc of injectable in one butt muscle goes against all my nurse teaching from many years ago. Maybe things have changed, but 2.5 was the limit back in those days.
Good luck!
Donna in Missour
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Here is a video from Astra Zenica showing injection site starting at about 2:42 in the video.
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So I got my first shots yesterday and luckily the nurse was very up on all of the recommendations for administering them. Only th e initial poke hurt a little then it was all fine. Today have very slight soreness in both injection sites but thats it. I guess it sounds like that could change as we go along. I am just happy to be starting up on some med again. I am supposed to start up the Ibrance again along with it tonight which I am not thrilled about SE wise, but whatever it takes......
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Finally caved and started Cymbalta today after resisting for years. I have moderate-to-severe osteoarthritis just about everywhere. It causes me constant pain and often makes walking and other normal physical functions difficult. Some days it's really bad, some days it's better, but it never ceases entirely. I assume Faslodex is contributing to the problem. My oncologist does not disagree. But what's to be done?
I've been taking an NSAID for quite a while, and it's somewhat effective. For a long time my young rheumatologist has been pushing me to take more. I think she's sick of hearing me complain, and exasperated by my never taking her advice to go further with medication (Lyrica/Cymbalta; Tramadol/other strong painkillers). I really didn't want to take another medication, particularly anything that is sedating or can affect thinking. However, since I'm now in more discomfort than ever and exhausted by everyday doings, I'm finally giving in to at least Cymbalta.
Anyone here taking it?
Tina
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If anyone is taking Faslodex and have added Ibrance, please join us on a more specific & concise thread. It would be most helpful. Thanks
Faslodex + Palociclib(Ibrance) Treatment Combination thread
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Do you have a link for the Faslodex + Palociclib thread? I start Ibrance this week and have been getting Faslodex since October.
Amy
Nevermind, I just found it and have linked above for those wanting to follow.
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Thanks AmyQ for linking to Faslodex/Palociclib(Ibrance) thread. The new thread will be most helpful for those of us who are now or will be soon on Faslodex/Ibrance.
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Tina, It is great see you on this thread! I don't read very much but know you have been on Faslodex for a very long time. I've been on Cymbalta for two years. I'm also taking Celebrex (2yrs), B6 and Alpha Lipoic Acid. Just started the last two since November. I'm having a lot of pain but I can get around okay. Some bone pain and a lot of neuropathy in my feet. I think I would be worse if I didn't take the Cymbalta and Celebrex.
My brain? It was not very good to begin with, but really have to search for words and quite forgetful.
I hope the Cymbalta gives you some relief. MaryAnne
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MaryAnne,
Thank you for responding. Yes, I have been with the Fanny Pack for many moons ;-) --four and a-half years.
Just had my injections this afternoon, and have been using my sore and tired state as an excuse to flop on the couch and catch up on some reading. Right now I'm experimenting with timing the Cymbalta, just taking one daily with the largest meal of the day, as per my doctor's instructions. It's only Day Two, so we shall see! No SEs to speak of so far except dry mouth and a bit of queasiness.
Do you remember how long it took for the Cymbalta to start working for you?
Tina
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I said I had been on Cymbalta and celebrex for two years. Actually it has been five years. I increased the Celebrex 200 mg to twice a day about six months ago and take Cymbalta 60 mg in the morning. I really don't remember how long it took to kick in. I just remember that the aching in my hands and feet woke me up at night. The internist ordered Celebrex for the pain and Cymbalta for depression.
In the last six months I've tried gabapentin, increasing gradually and taking it at bedtime. When I got up to 500 mg., I woke up feeling awful. A friend of mine takes a timed release gabapentin 800 mg every eight hours and is in real pain from peripheral neuropathy if he tries to skip a dose.
You just never know what will work for you.
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Wishing everyone in fanny pack land a happy 2016 filled with successful treatment outcomes, joy, hope and happiness.
I'm grateful to be spending time with dear friends in Sonoma County, drinking wonderful wines with and enjoying the woods!!! If there is a picture that appears when I submit (i tried uploading-we'll see) it's the view from the bed. Gorgeous!
Faslodex is working for me and it's been relatively easy- i have gained weight (boo) and this past month have had frequent headaches.
Tina, I hope the Celebrex helps and well tolerated
Best,
Lisa
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well the photo didnt upload
:-)
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Happy New Year to you, Lisa! Enjoy the wine. . .as my onc says "drink the good stuff".
Pam
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Pajim, if the doctor insists on good stuff ....
I will happily comply
:-)
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LOL! Yes, good choice Lisa! I like your Onc's thinking Pam....
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My onc knows that if I ever have to tell him that I stopped drinking wine, or it doesn't taste good or whatever, or he has to tell me to quit, we're in real trouble.
His comment came about when I was complaining I couldn't sleep. I was taking narcotic pain meds at the time. His words: "have a glass of wine with dinner. That will solve your problem. Just be sure to drink the good stuff" (he said with a wink)
No offense intended to those who don't drink because they can't or don't want to.
We have a cellar we've accumulated over many years. I'm sad I may not get to taste some of those wines. But maybe! Just need to make it to 2019 in wine drinking shape.
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Ha ha, Pam. Wine could be my barometer for trouble. I know I'm coming down with something or really fatigued when I pass on my nightly glass. Of good stuff of course! I posted elsewhere about wanting to spend less but having just been in Sonoma and with Alaska Airlines allowing you to check a case for free, well... :-)
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Tina, I have been on Faslodex for 4.5 years too and have developed so much scar tissue from the shots. Do you have that as well? My sciatica on my left side is damaged so yesterday I could only get one shot on one side. I read somewhere that Faslodex may be available in pill form within a year. Anybody else read that?
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https://www.youtube.com/watch?v=zhPJtMnB3vo