Faslodex Girls Thread
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Oh, ok. The little round bandaids on my port for a few hours are ok, so I will ask for them unless something bigger is required. Any kind of tape seems to irritate.
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Shetland - what Tina said - short walk, then lazy day........enjoy! I am also allergic to tape so they are using a paper tape over gauze that hasn't bothered me - I take it off shortly after I get home. I've just passed my second anniversary on Faslodex - so far, so good.
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Brownies! In the early days of these shots I'd indulge after having them. Nice lunch, chocolate for dessert. After a year or two it became a routine thing; I don't do that so much.
I bleed so I ask for gauze, but they aren't big and lumpy. Most women just have bandaids.
Next Wednesday, once again.
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Pam, I swing by Starbucks after my shots and Zometa and treat myself to a Peppermint Mocha. I just get a bandaid, although I do bleed through occasionally. Last time my nurse gave me a bandaid from Frozen because they were out of regular ones. Nice huh?
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Right, so a treat and some TLC on Faslodex day. That sounds like a good idea. Really don't want to do this. Have to. Ok. I start this week. Question: Why don't people use licocaine/prilocaine cream (Emla) before the shots? I'll be re-reading the tips. I hope I get a nurse who is really good. Not planning on looking at the needles if I can help it. I like hearing how Fas has worked so long for many of you.
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Shetland,
My nurse numbs the skin at the injection site with Gebauer's Ehlyl Chloride Mist Spray before she inserts the needle. It's a topical anesthetic used for injections, starting IVs, etc. Bet your place has some in the chemo room. Just ask.
Tina
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Good to know. I will ask about that numbing agent, Tina.
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Shetland: three years on Faslodex, never use numbing cream or anything. No problem at all, just hydrate before and after. Walk around and massage the injection sites after injections. I also get a shot of Xgeva on arm during the same visit. Don't have any obvious SEs.
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I go in today for the usual. Good luck, Shetland! Seriously, the shots probably won't hurt at all. In my case the treat isn't for the shots. It's for surviving another 2 hour trip to the cancer center. I do not like feeling like a cancer patient.
Those trips used to be four hours which really deserved a treat! Then I started going for blood work the day before.
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Hi Chicas;I hope you are all doing fine.
I wonder how long does faslodex takes to start work. My MO once said that hormonal therapy take some time to kick in. I've been on faslodex since the middle of December and he wants start an IV chemo.
Thank you and stay well
Ziz
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Well ladies, yesterday's PET scan was mixed. Most previous spots gone/healed. A couple of new spots (all in the bone). One in the femur so orthopod to be consulted on whether to radiate. Tumor markers are rising but not high yet.
He left me with choices (to be discussed by phone on Friday):
(1) Do nothing -- guessing that would last about three months
(2) Move on to Xeloda
(3) Apply for a clinical trial of A/A/Ibrance. It's a dose-finding study. And to stay in it they have to be able to do a biopsy. Don't know that I have that much disease.
(4) Move on to something else (i.v. chemo)
I have a bunch of questions/reasoning but wondering if I'm off base.
If I'm going to do (2), I may as well wait for a while. Right? Any downside there?
(4) is out.
If (3) then what happens? Do I then move on to Xeloda? The trial is of limited duration [I think]. Is it even worth it to give up the three months I'd have on my current therapy?
If they radiate the major spot on my femur, isn't (1) the way to go? That'll kill the cells and the tumor markers will go down again.
Sigh. Decisions are hard. I have to keep reminding myself that there isn't a wrong choice.
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Oh, Pajim. Both times I have considered a clinical trial it has been very stressful. Please help me understand your treatment history. Were you on letrozole along with fas, and then Ibrance, so currently on all three?
Hola, Ziz. I have heard that Fas can take a while to work. I'm wondering how long because I'm getting occasional pains from my liver. Why does your onc suggest iv chemo now?
Thanks, Cling. Added hydrate to my notes.
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So, in spite of following all the tips--warming the syringes, relaxing the muscle, going slow, and walking afterward--the shots hurt and I am sore still. I've had to sleep on my stomach, which is my least favorite position. The pokes hurt. The first shot I could feel the stuff going glue glug glug, so I asked the nurse to slow down. Second side no glugging. Now the first side has a red bruise. So I guess I'll ask her to go even slower next time. I am not tough, you know? More like the princess and the pea. But I am courageous.
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I'm glad your first dose is behind you (no pun intended), Shetland, but sorry about the discomfort. I've had that happen twice, I think, out of 18 cycles -- where I literally couldn't lie on my sides to sleep. So hopefully, it won't continue to happen with you. But you may want to try getting them lying down next time, to see if that helps.
Also, for what it's worth -- the last time I had my shots, they hurt like h*ll going in, and when I told the tech, she said, maybe she was going too deep with them. I'd never had that happened, but she immediately pulled the needle back some, and the pain totally eased up and it never bothered me after I left the office. Just one more thing to maybe keep in mind as something that can happen and needs addressing immediately if your shots are very painful going in.
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Shetland, to me it sounds like the nurse went too fast. Particularly if the left side is better. I'm sorry you're in pain. Should fade soon.
For me: I started in 2013 with Femara and Fas. 2 yrs NED, one year stall. 2016 we added Ibrance, good response. That's lasted a year.
I can probably do nothing for another couple of months, but then a decision will be forced upon me.
One other thought. It's interesting that my onc suggested the trial of A/A/Ibrance but didn't offer A/A as an option. I'll have to ask him why.
Complicating all this is a trip to the Galapagos in August (a friend's bucket list trip. She came on mine). Hand/foot syndrome is not going to play well with water and hiking. :-)
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pajim, the question is how you feel physically? Last summer I was faced the same delima from my second opinion MDA onc, do nothing, change to ibrance/ Famera or go to AA. I asked my body, physically I felt fine, so decided to "do nothing". Because the MDA onc told me " we treat patients, not images". Maybe it is too naive of me, but the images 3 months later still said stable. I am not due for next one until April. Your onc has made some creative treatment for you. Listen to your body and onc.
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I feel fine. But my tumor markers are rising. Eventually they'll rise far enough that we have to do something.
We went through this in 2015. At the beginning of the year, progression. But onc said (as you just did) "you feel fine?" So we did nothing. Scanned every four months for a year. Eventually the tumor markers rose high enough that we had to do something.
It doesn't feel like I can get a year out of this one. But anything is possible.
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Oh, Pam, I am very unhappy with your news. I have no experience with any treatment other than Faslodex and therefore no helpful suggestions to offer. I do know, however, that you will make the decision that's best for your lifestyle, state of mind, etc.
The Galapagos twice?! Be still, my heart! I hope you can go and hike to your heart's content with no "issues." Is hand-foot syndrome always a given with one of the potential new treatments?
Shetland, ask the nurse to administer the injections more slowly. Relax your leg completely. I have found that getting the shots while I am standing and leaning over a countertop is the best position for me---much better than bending lower over an examination table.
Ziz, Faslodex is notorious for taking a while to act, but when it does, it can be very effective. In my case, it took a while --nine months or so-- to make a visible difference on scans, shrinking my mets bit by bit until they were no longer active. I would ask your doctor for his or her reasons for suggesting the move to chemo.
Whatever works, ladies!
Tina
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It is good to know that the other Fas injections will not necessarily be like the first ones. I will try lying down next time. (I was standing at the counter.) Good to know about the depth, too. Yes, we both thought she was injecting slowly, but I think I need to ask her to go extremely slow next time. I think the fact that the second side was better than the first supports that idea. I took a photo to show her the bruise. (Ha! Good pun anyway, Deanna.) I really appreciate the support, you guys! I'm such a newbie.
Pajim I don't remember how much of my story you followed recently, but my TMs were slowly rising my whole second year on Ibrance, and at a certain point my onc said we should switch even though the last three or four scans were not definitively distinguishing still NEAD vs. progression. Then the next scan was unambiguous. So she called it right. I had a feeling all along, but I think it was you who cautioned against giving up a treatment too soon if it was mostly working, which was good. Aromasin + Afinitor with or without Ibrance should not cause hand foot syndrome.
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Hi Ladies,
Joining the fanny pack club! First shots will be tomorrow. I read all the instructions above and my nurse has been giving these shots for years and claims to be a pro. Off to a good start.
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Hi, Linda. Courage! We can do this.
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First loading dose went like a charm. Don't feel anything this morning. I just had an odd feeling later on during the day as in sooo tired/weak to the point where I had to lay down for a while and then all was back to normal. Shetland, they must have done something wrong. I hope next time goes smoothly. Courage, we can do this!
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Ouch ouch ouch. Ouch ouch ouch.
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Ladies, this morning I signed on the dotted line for a clinical trial. Ibrance, Aromasin, Affinitor (not the full dose of the last).
I and my lumpy rear are moving on. I wish all of you at least as many years on Faslodex as I had (four).
Shetland Pony. . .may it get better for you.
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Pam,
The Pack will miss you! May your clinical trial be the trick that brings the return of fickle NED.
Hoping to run into your wit and wisdom in other threads,
Tina
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Pam, Yes, you will definitely be missed. I look forward to hearing about your experiences and results in the clinical trial. Please keep us updated. I hope your new treatment plan works at least as long for as Faslodex did.
Lynne
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Pajim, four years on Fas was a good run, and encouraging to me. So your trial means staying on an anti-estrogen and Ibrance -- which are mostly working -- while adding Afinitor, which addresses a third pathway. Of course Aromasin is a different kind of anti-estrogen than the others. Which means there are two new drugs as well as Ibrance to go to work. How awesome would it be if they got you back to NED?! What part of the protocol is for dose-finding? Do you know how long the trial goes? If you give me the trial number, I'll look it up. Anyway, I'll see you on the Aromasin-Afinitor thread.
Linda, I'm happy to hear that your first dose went well.
So I can't say I have any side effects from either of my drugs now, other than the occasional hot flash of course. (I'm only on 5 mg Afinitor to start.) I just had a day or two of headache after the first Fas dose. I feel more normal than I did on my last protocol. But, oh my, does my fanny hurt! I barely recovered from the first loading dose, and then I got the second one. I lay on my tummy this time, we warmed the syringes well, and the nurse went very very slowly. It was a different nurse. She massaged. I walked. I massaged. I danced. But next day, soooo sore. My onc indicated that the problem may be the large amount of stuff (5 cc) going into a small area. I fear this may be the way it is for me. I wonder if aspirin would help. It's not bad enough to make me cry or anything, but it gets old fast. On the plus side, I have not felt any liver pains for the last week, so we have hope that these drugs are working! And after one more loading dose, I will only get the shots once a month.
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Hugs to you all.
Yes, I hope the next treatment lasts at LEAST as long, with the same quality of life. I've really had no problems so far with all these drugs. Genuinely lucky in that respect.
Though not lucky enough. :-) I'm not as down in the dumps on this progression. The last progression [since it was the first] was depression-inducing. Assuming the drugs don't do me in I expect they'll last a while. Onc thinks the side-effects will be the rate-limiting step and so far he's always been right.
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Pam, wishing you tons of luck as you move forward that this combo will keep the cancer in check. Please stop in often and let us know how you are doing.
Shetland, Let's hope the worst of the shot experience is over for you and that the next ones will be more tolerable.
Linda, Encouraging that your first dosing went well.
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pajim - I come on board and you leave! I wish you the very best on your new protocol.
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