Faslodex Girls Thread
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Thanks Jobur, I am trying to just roll with it. I guess another liver biopsy might be a good idea anyway. Lisajo, Deanna is right, Ibrance is a very doable drug. The SE's were not bad at all. I was on for three cycles but unfortunately I had to stop because of elevated liver enzymes. But it did do me some good while I was on it with some tumor shrinkage and lower TM's. I hope to be able to possibly return to a lower dose at some time when all the enzyme stuff gets figured out. Deanna, I agree 100%, the head trips with the waiting for tests and labs is very taxing on us! Suzie, I have felt no SE's from Faslodex and the Ibrance I felt some pretty much right away but all of them got better after not too long. Best to all!
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So the liver enzymes were lower this time around. I hope it is a trend that is going to continue for awhile. I would like to get off the roller coaster for awhile and hear some good news on my next scan at the end of March....Feeling pretty breathless again the last few days though (all of a sudden). Is that something usual for this med?
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Hi--I talked to my oncologist a week ago about a similar issue. I had severe, severe pain after my 3d treatment that would not respond to 800 mg ibuprofen + norco (Tylenol and hydrocodone) on my left hip (it was pretty much debilitating). I asked the same question: why not 2 shots in the same side? He finally said that he had staggered the shots on the same side for one of his patients. So now I am going to get my 4th shot next week, just one, on the right side and another shot on the right side a week after that. The hope is that it will give my left side a chance to recover.
If anyone else is out there who had really severe pain (that is, so bad you can't function or sleep well), I'd appreciate hearing from you.
BTW, my nurse said that using a heating pad is problematic because it can make the drug get released too fast; it's supposed to be a timed release....
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Hi--I'm responding to a post a while back about the possibility of having two shots in the same hip. I talked to my oncologist a week ago about a similar issue. I had severe, severe pain after my 3d treatment that would not respond to 800 mg ibuprofen + norco (Tylenol and hydrocodone) on my left hip (it was pretty much debilitating). I asked the same question: why not 2 shots in the same side? He finally said that he had staggered the shots on the same side for one of his patients. So now I am going to get my 4th shot next week, just one, on the right side and another shot on the right side a week after that. The hope is that it will give my left side a chance to recover.
If anyone else is out there who had really severe pain (that is, so bad you can't function or sleep well), I'd appreciate hearing from you.
BTW, my nurse said that using a heating pad is problematic because it can make the drug get released too fast; it's supposed to be a timed release....
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Had my shots on Friday, and really very little pain. I did use my heated seats in my car on the way home. Guess I should ask if that is okay. I did tell my nurse about my heated seat and she didn't say anything.
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I plan to ask about a heating pad also. Normally I walk to work after my injections. After I cruise around the office, I sit with a heating pad on the back of my chair. Two different nurses gave my injections last time and theyreally rubbed the injection site after. I was quite sore that night and the following day. We did walk for a while but had a 90 minute ride home that day (I was at the larger cancer center rather than my local clinic). Sitting so much after may have been the cause of my discomfort??
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Those of you with sore rears, do they give the shots high enough on the hip? My injection site will hurt for a few days if I press on it, but they shoot me above where I sit upon my sit-upon. So no trouble sitting or moving. Just don't bang me against a wall.
It's a 10 minute walk back to my car right after the shots. Soon as they are done I am moving.
I can't see why a heating pad would be a bad thing.
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Early on, my nurse told me not to use a heating pad for several days after the injection or even stand in a very hot shower. She said applying heat too soon afterward to the area would interfere with proper absorption. I assume this means applied heat might disperse the fulvestrant too quickly, preventing it from being slowly released over 28 days, which I think is the intent.
Tina
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I don't hurt when I sit but when I lie down in bed or move during the night Ouch! I find that if I walk for a while right after the shots I do so much better than if I don't. BTW my last CT scan says "no definite evidence for metastatic disease" - I've been on Faslodex for 13 months.
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Yay Sandy!
I have scans in one week. 7:00am (sigh). This will tell us what treatment to use going forward. Tumor markers are rising fast even though the last scan looked a little better. If they appear about the same, we'll add Ibrance. If worse, it'll be time to move on. Not sure what. A/A or Xeloda or a clinical trial I suppose. Wednesday I see my onc.
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Hi Pam, I have a PET Tuesday of next week too, if you want to share scanxiety. I would just love to hear that you are going nowhere. (I mean staying on this thread, no progression.) Good luck!
Sandy208, Congrats on that good scan! Wishing you many more.
Artist, Glad to hear those liver enzymes are down! Hope the trend continues and you can relax about your tx for a while.
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best of luck next week pam and jobur. Ya, you are going nowhere! Yaaaaa Sandy, what great news! Yep, next Monday another liver enzyme test along with TM's and more shots. Thanks jobur, I hope to sail through all of that...
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I echo the best wishes for next week's scans, pajim and jobur, and best wishes also to you, Artist, that all is well with your liver tests.
Does anyone find that the soles of your feet, esp under the heel, have become very tender and painful? I mean feeling like you need lots of cushioning in your shoes as you could almost feel your bones going through your soles when you walk? Wondering if it's a SE or not (I have put on 21lbs since starting faslodex/femara though).
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I'm right with you girls -- pajm and jobur -- scanxiety starting to build. Mine are this Friday -- CT and bone. First ones since last July.
I had my Faslodex & Xgeva shots this morning and was feeling pretty good until I just looked at my lab results on-line. Both WBCs and RBCs are extremely low, thanks to Ibrance. No wonder I feel so wiped out much of the time. CA27-29 results tomorrow hopefully will be better, but they had gone up just a smidge last month, so holding my breath...
I hope you get good news on your liver enzymes, artist!
No experience w/the SE you're asking about Aoib, but maybe some epsom salt soaks would help, especially if you might be retaining fluid that's causing the discomfort. But I'm with you on the annoying weight gain! Mine started subtly, but definitely on an upward trend in recent weeks. Sigh...
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I did. They considered it HFS... hand foot syndrome and indeed it was. Now that I am on Xeloda, it is much worse. It is not a common side effect at all while on Ibrance. One of the research people I met with at Dana Farber was assigned to the Ibrance trials, and she reported to me that only a few other women had this side effect during the trials, so it is not included in the literature. It did not get the "required" > 1%.
It was a bit of a relief to know that I was not crazy, or the only person who was affected this way. There are lots of posts around about dealing with HFS. If you can't find them, PM me, and I will give you what little help I can offer.
*susan*
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susan, They did not consider liver enzymes an SE of Ibrance either although they can happen with Faslodex. if they still go down this Monday it will point to Ibrance causing it. I wonder if it is less than 1% for that? Aoib, I have not had that Se at all. Deanna, I'm sure you are really stressing about the scans after it being so long. We will be thinking of you and waiting to hear good news! Have a week off from school and my two girls flew in so have the whole family for 4 whole days. Glorious!
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Thanks for the good wishes on next weeks scan.
Deanna, Sorry about the low blood counts, but at least now you know you have good reason for your fatigue. Hoping you will get good news from Friday's scan. Do you have to wait long to for results?
Aoibheann, Sorry to hear you are experiencing HFS. Hope that now that you know what it is you can find some thing to help.
Susan, how is Xeloda treating you so far? I was hoping you might have minimal se's as on this tx as Ibrance gave you such a bad time. Hope the HFS is not too bad.
Artist, Enjoy having that empty nest refilled! You and your girls can spoil each other.
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Jobur,
So kind of you to ask. Xeloda has its special life additions, but overall, I have found it far more tolerable than the Ibrance. HFS is bad about 5 days per cycle, but as I said, overall, I feel far more healthy now, and my markers are going down. Scans in a month or two will tell the real story.
*susan*
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Susan, "special life additions" - love it! Glad to hear you are feeling better on this tx.
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Yea susan! I'm glad too. I had a hard time with ibrance too and Xeloda could be in my future. Amazing how a small change in SE's can make you feel like a million bucks! Thanks jobur, we have been spoiling each other for sure. Got a foot of now last night so we are going to try and muster up the energy to snowshoe. Aoib, Just curious, are you taking Femara/Faslodex together? Hope your toots are feeling better!
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I, too, like the term "special life additions"! Susan, I know you had a nasty nasty time with Ibrance so I'm glad this is a little better.
Jobur, Deanna, best of luck with the scans.
I know it looks like I have to wait for results but truth is I could have had my scans the same day I see my onc. Problem is then I spend the entire day at the cancer center. Whenever I enter those doors I feel like a cancer patient. The rest of the time I try to ignore it. This way I spend 2 hours at the hospital Monday and distract myself with work. I will be annoyed on Tuesday though. (They didn't have any scan appts for Tuesday or that's what I would have done).
Hang in there everyone!
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Artist, Yes, I'm taking femara/faslodex together. After dx I was on Aromasin/Faslodex but three mth scan showed progression so onc put me on chemo - Taxol. When I couldn't tolerate the SEs of taxol onc said Afinator would be next and then he changed his mind and decided to give me Femara/Faslodex. I don't know his reasoning but thankfully I've been stable so far. Hope you and the family are having fun in the snow!
Hugs x
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Aoib, Interesting how many different approaches are taken among Oncs. I think I will get to the point that I have to try a larger center as my choices in this small town are VERY limited and mine seems to follow a very specific protocol so far. I hope she might think a little outside of the box when the time comes to expand my options. I'm so glad to hear you are stable and hope the SE's are quite tolerable! Good luck on results Pam!
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Hello, it's been a long time since I have posted anything but having been reading other's posts. I see that there have been some posting about the sore lumps and other side effects. I have been on the shots for 3 years and I am NED. My nurse told me last month that I have ALOT of scar tissue and this time she side I had a lump on the left side. It seems that they are getting more painful more than likely from the scar tissue. For those of you who are experiencing the sore lumps how long do they usually last or do they ever go away? I have used a heating pad and my nurse has never said not to use it but am now wondering since I have seen others post that they were told it's not a good idea. Do any of you use an icepack?
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Tiger, since the med is viscous when stored in a refrigerator and needs to be brought to room temp for proper injecting, my first thought is that an ice pack on the injection site could be counterproductive, at least soon after the injections are done, possibly causing the med not to disperse properly. I've been told to be sure to move around, which I would think would keep your body warmer. But if you've been on Faslodex for 3 years and are NED, we should ask you what you've been doing and for any other tips.
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I've been told by my onc and PCP not to use ice or heat on the site(s) but I know that if I go for a walk after treatment things are really tolerable - I stopped the walk in December because the day of injections it was icy and I was most uncomfortable, same in January, this last time I walked and things are much better. It's good to come here for help but think in this case you should talk to your onc and onc nurse - they are the experts (we hope).
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I occasionally get lumps. Usually it's when the nurse pushes the injection too fast. I always tell them I don't mind if it takes a full minute.
When I do, they last about six weeks. Once a masseuse managed to get rid of one of them, maybe three weeks after it happened. So if you massage the lump in the shower every day it'll disappear faster.
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Had my shots Monday and still have 2 large lumps on both sides of my butt. The shots were warm. Any other recommendations?
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I posted before reading Pajim's post. Will do the massage!
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