For those being offered or starting this protocol - here’s an update. I know when I joined this group - it meant a lot to get information and experiences.
Faslodex is my second line treatment- after Ibrance, Femara & zoladex. I’ve been feeling well on Faslodex - still going about my daily routine and working. After second MRI, my onc called with good news that there has been good shrinkage in liver and clavicle, and my femur had healed… yay! I was so afraid and anti this treatment but I’m so happy to be on it, apart from the obvious ‘pain in the butt’ which actually isn’t that bad, more of a discomfort. I’ve been fortunate not to have any side effects worth mentioning. I have a good diet and drink lots of water.
However, even though MRI was excellent, something new showed up that still needs investigating under my armpit, but until I know what’s what… I’m not crying about it just yet (too busy!) even though I’ve convinced myself it’s bad news and I’m either going to have a mastectomy, change drugs and go straight to hardcore chemo and lose my hair… I’m just processing the possibilities whilst clinging onto positivity. What the hell is under my armpit? Bring on the CT scan and biopsy I say!
N x
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Ntash01
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Thanks for the positive update re: Faslo...*and* the good news re: your scans! Congrats!
I hope the issue under your arm is nothing, but are you thinking it's possibly some lymph node involvement? If so...this makes me wonder...I'm assuming this would be viewed differently from, like, normal mets? I.e. not a sign that the treatment is failing but rather that the nodes are doing their job *preventing* spread?
And good for you carrying on as normal, with a full load!
I had that ! Is was there and it disappeared and since they say it calcified which means it’s dead . It shows up as a calcified lymph node that’s dead . 😘😊🌹❤️
Hey Ycats…. That’s so encouraging - thank you so much for sharing. What a relief that was to find out it had calcified. If you don’t mind me asking…were you on fulvestrant at the time? Did you have a CT scan and a biopsy to get that info?
I shall definitely share my news once it’s in! My onc wanted me to have a break between treatment as I had faslo & zometa today, we agreed to scheduled CT for April.
Hi it’s Stacy , yes for the last 4.5 years I’m still on my first line since then . At the 2 .5 year mark was when I had the full body pet scan which resulted in that news that the lymph under the arm which I couldn’t feel anymore calcified. Dead . It died was how I was explained . The only test I get since day one is a full body head to toe pet scan every 6 months like clock work . Good luck 👍🏼 🌹🙏❤️😘
Yes Calcification is what you want. Calcifications what you are going to get. The meds today if they work really work if you fine the right recipe. I’m feeling very hopeful for you. Xx Stacy
Hi GlasDefinitely be reassured! If you haven’t been told already… make sure it’s warmed up before it gets injected (under armpit or hand - do not drop….worth a small fortune) and do not stand on the side that’s being injected - completely relax the muscle. Once it’s done, no pity party…. Go straight about your business and walk… you may get tingling & the area will feel tender but after your loading shot you will feel the benefits of not having to pop pills.
Agree with all but just wanted to add that at my place they warm them up on heating pads...So if you're warming them up yourselves (I cringed when I read your comment re: dropping them! I'd be the one to do that...), you could always bring your own heating pad? Just a thought!
All along the nurses would put them under their arms and walk around for the first two years and I knew they were being warm that way, which is kind of gross if you think about it under their arm? But they needed to be warmed. And then all the sudden I noticed that they were on the counter just sitting there when I walked into the room a few times I felt them, and I inquired and I was given the answer that they’ve been out a long time warming , which was a lie which I found out today. The shots that I’ve been getting for the last year and a half or year unrefrigerated filled with preservatives so they don’t have to be kept cold to stay fresh. I’m allergic to the preservatives and that is what the reaction came from he said . He was very apologetic and he was very pissed off it seemed that his staff. He walked out the door and he yelled down this long hallway for the office manager , and he told me he will take care of it abd not to worry .
Like I said he doesn’t say much but when he does it’s important. He also doesn’t answer stupid questions, apparently I’ve had a few of those. He just waved his hand and they are at you like you’re an idiot. LOL I told him that when I first met him 7 1/2 years ago. I went into his office the first time I met him with a bottle of Tums, I was with my mother and my sister and I was just diagnosed, I was popping the Tums like they were candy. He said what are you doing? I said they make me feel better he took them out of my hand and he threw them in the garbage he wrote me a prescription for lorazepam I’ve been on it ever since. Never up the dosage I’m on the lowest dosage you can get but it’s just I guess takes the edge off and I don’t have to chew on Tums LOL
I am real lucky, my family Dr and her nurse give me the injections. They also warm up them first and slowly inject. I have not had any pain with the injections, more just tender. I look at it as a get together with the ladies, swap family and kids stories lol.
Wish my family doc could give me mine. It is a 6 hr round trip each month for my bloodwork and shots between quarterly scans. My choice to get the best care but once Fulvestrant becomes available in pill form I will only make that trip 4 times a year. For the shots though, the nurse puts hot water in a latex glove and sets it on the meds for a few minutes to warm. She grabs another nurse and I get both shots at the same time leaning forward with all my wait on my arms. It has gotten less painful each time. I’ve noticed that the shots given more toward my side rather than the back is a lot better. I just became NED this week so I may be able to have scans less frequently. Yay!
I have never had an issue with my injections. The nurses warm it in a hot towel and then have me stand with my toes pointed in, bent over a tray. The first couple of times I didnt even feel them, and had been so afraid from all the stories about getting the injections !
I have aches and fatigue but I tend to ignore until I can no longer ignore - which is not often, then I relax and remind myself you have a cancer diagnosis. I’m usually in denial.
I feel better than I did on the combo you’re saying good bye to, I only got 17 months on that, I was hugely upset & disappointed when I had to change, but I needn’t have been! I like the less is more approach, until I have to have hardcore stuff 😏
Hi bone only but there’s a shadow in my liver - I’ve to get further mri. Only found out this week so I’m terrified . I was diagnosed March 18 so had done really well . I have young kids so desperately wanting to stay around ❤️
I am in the U.K. and have had a similar treatment journey to yours. Initially on Letrozole & Palbociclib (2.5 years), Exemestane and Everolimus (which didn’t work for me) and now on Fulvestrant alone.
How long do you have to wait to find out what is going on with your underarm? I hope it is soon as the waiting can sometimes make us crazy! Do up-date us when you have answers. Vicki
After the progression on Ibrance my onc started me on Faslodex and said if that isn’t successful I would be given cape, which I believe is oral chemo. I was quiet happy not to start those.Because I had zometa and faslo yesterday, she wanted to book CT in April to give me a break, zometa tends to wipe me out for a few days. I usually get results within a week of scans, which is ok. She added if they don’t like the look of whatever it is under my arm they will do a biopsy…better to know that not to under these circumstances.
Where about a in the UK are you? I’m in west London.
That’s not too long to wait (for the U.K.). I do hope it is nothing serious. 🤞I was on Zometa and it used to wipe me out for about a day but last summer I was swapped to Denosumab injections (so I’m now bum and tum). It is sooo much better. It’s administered at the same appointment as the Fulvestrant in a matter of seconds. No more long visits to the chemo suite.
I have also been told my next line of treatment would be Cape. It must be the NICE guidelines but I’d rather avoid that for as long as possible. I must research to see if there are other options first.
I’m just hoping for a good run on Fulvestrant jabs for now. 🤞
I’m based in South London, just a 15 minute drive from the Royal Marsden but I’m also based in beautiful Budapest. I travel back for treatment on a monthly basis. Not ideal, especially during a pandemic, but life is complicated sometimes! 🙄
In the meantime until you get the results try not to worry about your under arm. I’ve heard that sometimes lumps can develop after a Covid jab. Take care.
Hi ClairepertYou are so right, but I’m just so busy with daily things that I’m not thinking about it much at the moment….until it’s time for bed ofcourse!!
Wow !!! Great News !!! I am reading all of this and thinking we seem to be on the same road. It is so nice to have company !!! I mean aside from the who the heck wants this. I have been on my second line, fluvestrant and letrozole for about a month. Ibrance failed, as we all know, there is a bit of a fear when that happens. I drink lots of water and keep a reasonably good diet. The foods I eat are liver friendly and do not drink alcohol anymore. I get my first CT scan next month. To hear your liver, I have leisions there as well, has shrunk is so heart warming. I also have leisions on my t3. Although they have healed it seems to be just the liver. I swear mbc is like the game WHACK A MOLE !!! I keep telling my onocologyst I am going to be NED one of these days. She says she is looking for shrinkage and stability right now, but you go girl lol. I am so grateful to have a team of amazing doctors, nurses, tech team. I
I know you got this!!! Keep singing that positivity song !!
Thanks for the update. I'm on faslodex only now, 2nd line after ibrance, zometa and letrozole. I was worried that it might not be "enough". I have a scan next week, so fingers crossed!
What are you on along with the faslodex? I take it along with Ibrance. Good luck with your scan - hopefully it will turn out to be nothing to worry about. ☘️❤️
Just Faslo every month & zometa every 3 months. I had begged to continue with ibrance, but you can’t continue once there is progression- no matter how small!
I just wonder if you did not have a Covid vaccine recently. It happened to me after a Covid vaccine and that time the oncologist did not know that vaccine causes it. The next pet ct did not show it. Good luck,
Hi. The problem is that I am trying to be positive but I have anxiety every day. I do not want to hear the word terminal Our while life is terminal. No one knows what’s going to be tomorrow. I believe that new drugs are coming until we get cure. About vaccine. I got problems with my heart right after the booster and needed a pacemaker.
I love your attitude! It makes such a difference to how we feel, is what I believe. You have such great news on your preexisting areas. I’m hoping and holding positive vibes that it’s the same for the armpit thingy too
Thank you for sharing, I keep thinking my day is coming when the Ibrance/Letrozole/Zoladex stop doing their job! Wishing you the best possible outcome and hope the armpit turns out to be some other weird but harmless side effect. 🙃
Thank you AmosF… don’t think about it negatively, when change comes (I did and went a little doolally) ask the questions, make sure you understand choice & go with it. I’m no expert, but my understanding is we all act differently to the same meds, one glove does not fit all! My BC nurse reassured me that we have just scratched the surface of potential meds available…..And can we dare dream of a major breakthrough in our lifetime? Regardless…we have to roll with punches now x tc
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