Afinitor and Faslodex combo
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Sunset,
I'm sorry to hear about the odd labs. I think that "odd" can be more unsettling than certain, in some ways. Fingers crossed for a good set of labs next time around!
I'm still so very very tired, and finding myself pushing my food around on my plate, even though I've been really hungry. I don't know how much of that is just hormonal weirdness from the Faslodex, because I'm feeling particularly moody since the injections. I seem to be very sensitive to hormonal drugs. The other thing is the injection site tenderness. I feel like I have the world's worst bruises on my backside, even though there's no discoloration. Walking seems to help keep the sites from stiffening up, but I'm real tender to the touch. I'm hoping that starts easing soon, because it's hard to find a comfortable position to sleep at night. I'm wondering if icing the areas would be helpful.
I've decided to rename the "event" on my calendar for when I go back in 2 weeks for the injections, because it'll be the 2 Faslodex, plus the X-Geva and the Zoladex. The new name that shows up now is Princess Pincushion's Prickly Porcupine Pokey Party. Since it's a party, that means I get ice cream. I think that's a win, don't you?
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butterfly, this is hilarious! If you don’t mind, I might use that as well. Hahahahaha.
Yep, I thought I could breeze through this month unconcerned about the impending scans and labs, but nooooooo...can’t have that. Gotta start freaking out that I’m going going to die....
I’m sorry the Fas shots are super uncomfortable for you. Hopefully they can try a spot next time that you dont need to lay on. Perhaps more on the side by the hip..... unless you sleep on your side then I guess that wouldn’t work. Also, the fatigue and the not hungry stuff couldn’t also be a sign of depression. Hope you are on some happy pills...my life totally sucked before I started taking mine.
Sunset
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Sunset,
I'm so sorry things are so uncertain for you right now. This monster just sucks. That's why I find ways to laugh about as much as I can, like the Princess Pincushion thing. I ugly cry, and laugh lines don't look so bad as frown lines. 😊 That, and I refuse to give the monster the victory over the one thing I can (usually) control!
I've been on effexor for the last couple years, which usually helps keep me on an even keel. But new hormone treatments always throw me for a loop. I'm sure I'll level out once I've had some time to adjust. I was able to eat a bit better tonight. My daughter's suggestion of chicken fajitas was apparently just what I needed.
As for the fas shots, I was told to expect injection site pain for a few days, so I'm going to do my best to just get through it. I may try icing it before bed tonight to see if that'll help.
I'll be praying for you as you wait to find out what happens next!
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Dear Princess Pincushion - Maybe you will need to change your username. That's catchy! Just making sure you know there are some separate Faslodex threads with great info. I've been on Fas for about a year and a half. My experience has varied depending on the person giving the shot, so I try to request the same person when she's there. Usually it doesn't bother me much anymore, but on one occasion when I had a different nurse and had a fair amount of pain afterward, I took some ibuprofen and that helped.
Sunset - Must be the month of uncertainty. Just saw my labs and my TM's went back up some this month also, but still significantly down from when I started. So that wasn't much of a downward trend. Bleh. Still feeling great. My cholesterol had a big increase, but other numbers looked pretty good. So joining you in trying to put it out of my head now for another month. Officially giving us both monthly marker amnesia.
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You know, Moissy, that's not a bad idea! I'm amazed by how many people laugh at the names I call myself, but then I tend to approach chaos with humor, because it keeps me more-or-less sane.
So I'm really despising my insurance company. I found out today that they've denied my Afinitor tabs, because it has to be administered along with a hormone inhibitor. You know, kinda like Faslodex. The Faslodex which the insurance company already approved for me. Apparently, now my doctor needs to write a letter ("Doctor Review" in insurance speak) proving that it's a valid protocol. No idea how long it's going to take. So in the meantime, I get to go with no treatment other than the fas. Fun times. And I hate insurance.
Beyond that, life is good. It's amazing how quickly things become normal, isn't it? One day the recurrence is the end of the world, the next it's just another part of life. Cancer life is one crazy train ride!
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love your new moniker, Princess! So sorry you are dealing with insurance woes. 😡
Sunset
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Thanks, Sunset! The name makes everyone laugh, including me. Laughter usually helps me cope.
I got my second pair of Fas injections yesterday, and oy gevalt! the headache I woke up with again! Looks like that's going to be one of my major SEs. Fun times. I got my other two injections as well yesterday, so my everything hurts.
We're still waiting for the insurance to move on the Afinitor. My MO wrote a "very nice letter" to them, but it's still a waiting game. Meanwhile, I'm trying to keep my husband from freaking out, as he talks about retaining a lawyer if they deny the medication to sue them for, and I quote, "killing his wife." Last I checked, I'm still alive, and there are still more options, so... he may be overreacting a bit. He's dealing with my diagnosis much worse than I am, and it's exhausting trying to keep his spirits up.
It's been a wearying week. Not only am I having to hide my struggles with this diagnosis for the sake of my husband who seems on the verge of a breakdown over it, I found out, just before she left for 10 days in Spain, that my 17yo not only wants to come out as lesbian, but wants to identify as a boy; that two years ago her boyfriend was making her so anxious and depressed that she was cutting; and she wants me to believe that the first things and the second are completely unrelated. And my 15yo is dealing with a toxic work group for a project she's working on for a tech club competition coming up in a month; they exclude her from the work times, then accuse her of being uninvolved; they defy the advisor who insists the work be done at school, claiming it's to avoid the parts being stolen, but then I find out that the parents of 2 of the kids are doing half the work! And on top of that I'm trying to help a friend struggling with crippling anxiety and health issues that the doctors have no idea how to diagnose let alone treat.
*sigh* Well, kvetching about things doesn't really help much of anything. The only thing I can really do about any of it is to pray about it and trust God to do what He's going to do. And in the meantime.... I guess it's back to the happy face and helping solve the world's problems! After all, that's what Mom does, right?
Princess Pincushion0 -
oh Princess, youve got a lot on your plate. People are falling apart when you need them to be strong.
I'm sorry Fas is giving you headaches. That's a sucky side effect.
Insurance sucks.
Just letting you know I hear you and I am commiserating .
Sunse
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Thanks, Sunset. Sometimes just having someone listen is exactly what I need.
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Just got the news today that the Afinitor has been approved! Yay!
Now to figure out why my backside has been itching for the last two days. Surely that's not another Faslodex se, is it?
Seriously, do you know how hard it is to be ringing up people's groceries when your backside feels like it's covered in mosquito bites? The best part of my day was when I got home and I could scratch to my heart's content! Lol
Princess Pincushion
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my backside sporadically itches around the injection sites. I would definitely say SE. but hopefully it won’t last.
Congrats on the Afinitor. I hope you find it easy. My MO recommended I take the pill with a teaspoon of yogurt (and water) to avoid mouth sores. Also rinse a few times daily with dethamexadone. It worked for me
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Sunset: Can you tell me the ingredients/amounts of your dexamethasone mouth wash? My MO asked me about this during my last visit for another patient, because he thought that I am a pharmacist (I am not, just working in pharma industry). Using a dexamethasone mouthwash is described in a lot of literature wrt Everolimus, however, a recipe is given nowhere. And there is no commercially available mouthwash here in Germany, it needs to be mixed by the pharmacy. It would be great, if I would surprise my MO during my next appointment ;-) .
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netta, I will try to find out for you and get back to you.
Sunset
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Sunset: that would truely be great. I do not yet need it myself, however, there is a good chance that I will move on to Everolimus when Ibrance fails me, therefore I believe it is a good idea to already support my MO with this issue. I will surely benefit from this sometime as well.
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Four doses into the Afinitor and I'm realizing that I feel like I'm not really filling my lungs when I breathe. I'm yawning all the time, and the worst part is that I can't sing! I'm hoping this passes. I suppose I should say something when I go in for my Faslodex shots Friday. I looked it up, and, sure enough, shortness of breath is one of the side effects. Specifically, one they want me to inform my doctor of. I hope I don't have to go off this after all we went through to get the blasted drug!
Pincushion
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hi Princess. Definately tell him. I think some sort of lung infection is a possible side effect. Hope it’s nothing. I had an MRI last week that showed a questionable node on my lung. Never had a lung met before. First time for everything I guess. PET to verify Thursday this week. Doc says not to worry , benign lung nodules are common. (Yeah..for people who dont have breat cancer maybe)
And so it goes......
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PP- I’m sorry that you have been having so many challenges in your personal life. Sometimes things do seem to pile up at once. About the shortness of breath, that can be a side effect. So I’d give your onc office a call if you are experiencing it. They may drop your dosage
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Sunset -Wishing you well with your scan.
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I started FemarA mid Oct 2017 and then started a Clinical Trial which added Afinitor (10mg/day,) mid Nov2017
I wa doing well until late Jan/early Feb when the fatigue became unbearable. By mid Feb I was worried I had pneumonia. After several tests (x-ray, CT, PET/CT) all my doctors think I am fine. I finally had to insist I take a break from Afinitor as I was just a big, sore blob. Spent most of my day in bed. Too many SE.
Six days off the afinitor I feel much better. I have agreed to try 5mg dose per day but not the full dose or I have to leave the trial. I am waiting to see if trial will allow that dose. I am stage III b-c ( don't know which) and the trial is to see if the afinitor can keep us stage III girls from gettingmets.
Aside from huge fatigue, I have lung (breathing issues) numbness in fingertips and right hand, red spots under skin on chest and forearms, joint pain.
I know no one can decide for me, but for you with mets, would you have gone through this for a year for the chance to maybe avoid mets? It is like going through the five months of chemo again, wherein I spent most of my time in bed between doses, with maybe a good day or two in between This is constant and I worry about the long term effects of the toxicity. The clinical trial is for one year, so I would need to take until mid Nov 2018
Of course, it will take years for anyone to make an assessment of its efficacy, so that's not really a consideration at this point. I have agreed for them to use all of my Info for all of the research, in hopes of future progress of course.
Many thanks if you have any advice for me.
Michele
PLEASE excuse if I have violated policy by submitting this question and not being stage IV
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Michele, hi. I could be wrong, but letrozole ((femara) is known to cause achiness and fatigue in a lot of people. Not sure about Afinitor, but I feel Fine on it . Everyone’s is different. Personally, i wouldnt “ use up” any treatments that go I might need later IF you even progress. I would take the hormonals only. Why do that to yourself.? I feel if you are going to progress down the road , then taking afinitor for a year probably won’t deter that later. Just my two cents. Hope you never join us here.
Btw, there is a thread in the stage 4 forums for people who are not stagev4 but have questions. I think that’s even the name of it. Best to post there next time, although you did not offend me.
Sunset
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Michele - Not offended at all by your post. It's a tough decision. I sent you a PM, only because my response was so long.
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good news ladies! This combo seems to be working for me. My TMs dropped back down (maybe last month was an error?) and my Pet only shows two spine spots (had 4 last time and was watching my liver. Liver is clean as can be. Lung module that showed on MRI is not activity on PET.
Looking into rads for the two spots. I feel like maybe I can knock myself into NEAD.
Woohoo! I didn’t even mind the long ass butt needles today.
I hope you girls are having similar luck.
Sunset
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thanks so much for the responses. I k ow I’m in this alone and need to decide. I feel so. Ugh better off of the Afinitor that I can hardly bear to think of starting back up.
I have a little more time to think about it tough.
Thanks again and love to all of you.
Michele
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Michele - Good luck with your decision. If you continue to feel so much better off the Afinitor, your decision may become a lot easier. Trust your gut feeling.
Sunset - Woohoo. I have been holding my breath. So happy to hear. Are you having pain in the spine now? Falling on the floor laughing about not minding the "LABN." That should be added to the official BCO abbreviation list for Faslodex users! Happy dance for you today, my friend!
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Got my first PET/CT results since starting Afinitor. Stable and happy! Many of my previously silenced mets are still not active. The areas that were active last scan all showed less activity since Afinitor. My TM’s have dropped about 40 percent from when I started Afinitor and seem to be hanging at that level now.
I may post this on the other Afinitor thread where there’s more activity, just so people know it does work for some.
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this is fabulous news Moissy. Definitely people should know this combo can work!
Princess P, how are you, honey?
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Sunset and Moissy, I'm so delighted to hear that this protocol is working for you! It makes me feel more confident when I hear it's working for someone else.
And thanks so much for thinking of me, Sunset! Things are going well. I'm still trying to figure out this lung thing, and so's my MO. He wants to just keep an eye on it for now. As long as it's not slowing me down and not getting any worse he's not going to do anything. If it gets worse at all, I'm to call right away. I'm figuring it's just another irritating SE, just slightly more irritating than the four days of itchy buttocks after my shots!
I agree that LABN needs to become part of the BCO lingo for the Faslodex crew! My nurse has been looking for ways to make it easier, and last week gave me a pair of ice packs to sit on while I waited for my injections. It actually helped! I have to say I just love the nurses at my cancer center.
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itchy butt..lol..it’s awesome when you are walking down the street with both hands down the back of your pants...scratch scratch....lovely
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Yes, I have suffered through Itchy Butt Syndrome (IBS) right after the LABN injections! I will say though it has gotten much better the more shots I've had. Building up immunity, I guess.
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I’ve been having a lot of headaches, nausea and fatigue this past month. I think it about 4 months on this combo. I can’t think of anything else it could be, except delayed side effects. Ugh... no like. (Well it’s still better than the peeling burning feet on Xeloda).
Hope you ladies are doing well.
Sunset
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