Faslodex Girls Thread
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Hmmm.
Regarding bruises and skin reactions, I have had both. I assume the bruise, which is not in the spot the needle went in and does not happen every time or on both sides, is either because the needle happened to hit a larger blood vessel, or the nurse pressed too hard with her non-needle hand. The redness that I sometimes had during my first course of Faslodex was itchy and acted like an allergic reaction. This I am guessing was caused by the syrup going in too shallow and going into skin or fat rather than muscle. I still do not understand why the lumps vary. If lumps are due to operator error, can we please know what the error is and solve this problem?!
I don’t know what to do. The two people who did a good job giving my injections are both gone. The two I have tried, who are experienced, gave me painful lumps and a bruise. I need someone to explain how and why the problems happen in order to find a solution. Or to understand there is not a solution. Frustrated.
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Shetlandpony
I am totally with you on let’s get a better protocol and repeatable good injections. I am going to ask them to slow down. 2 minutes is a long time but that is the recommendation.
Sadiesservant
I don’t know about generic. I will have to ask my MO
Dee
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Hi all. I spoke to my pharmacist and apparently Astra Zeneca makes up the difference. The generic is available here so my insurer pays the generic price and then the pharmaceutical company makes up the difference. So, it appears I am still getting Faslodex. I’m not sure if there is a difference but am happy to have one less thing to worry about!
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Banana4me, I have been on Faslodex for about 11 months. I continue to have back pain for several days after injections. I take Alleve or Tylenol and live with a heating pad. Sometimes it helps. My mets are in my liver, so I get side pain as well. My tumors are reducing marginally. So to answer your question, it doesn't mean the cancer is spreading. It is a common side affect as listed on their web page. Hopefully, yours will ease up like some of the others. Best wishes!
I would like to ask those that have been on it for while, if they experience high anxiety or memory issues the longer you're on it? I have never been a very emotional person and recently my moods are up and down and everywhere. My nurse practitioner says this is the Falsodex, but I didn't experience until the last several months. Anyone else?
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As I said above, I would like to know what causes painful lumps, bruises, and red itchy skin with Faslodex injections. Is it a matter of technique? Can anything be done to improve our experience once we have done the basics of warm the syringe, relax the muscle, inject slowly, walk/warm afterward? Because I do these things and still get bruises and painful lumps. Some last a couple days and some last a week or longer. WHY?
During my research I came across some articles by a nurse who writes, presents, and trains about giving Faslodex, so I emailed her but she did not answer me. Then I tried calling Astra Zeneca, thinking that surely the company that makes Faslodex would have some answers for me. Wrong! The nurse I talked to was very nice, but said she had never heard of these problems and had no answers for me. I told her if you talk to any group of patients you will hear of these problems. She took down my comments to pass along to their safety team and also to another department. So A for effort, but no information. I am considering my next move.
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Shetlandpony,
I get bruises and lumps, as well. After one of my injections, it was like it hit a nerve and it hurt every time I stood up. It took several weeks before it got back to normal. So, I spoke to the nurse practitioner. She said she trains the nurses that give the Faslodex injections at my oncologist office. So this is the way I understand it. I get two injections at the same time. One on each side. She said there is a technique, especially when given two. She showed me the position of the injections, but it's kind of hard to describe . It is high on the hip. The lump is because it slowly releases and told that was normal. I was told the more I move after the injection, the better. I can relate, they are painful. Some months have been better than others. Sometimes I bruise and sometimes I don't. The cancer center I go to has an injection room, so I don't usually have the same nurses. So, this is why I think it is part technique. But then again, they are just painful. I am surprised you got that response from the drug company, but in my experience with my large specialty pharmacy, it all depends on who you get on the other line. I don't want to scare anyone new. It seems other people may have better experiences. But, I do completely understand you. My injections are always accompanied by side effects for about a week sometimes longer. I am not a doctor or nurse, so this is just how it was explained to me and this my experience. I would still talk your doctor and/or nurse that gives the injections. I hope this helps.
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Anybody else have ocular migraines?
Started getting them in early June. I'd been on Faslodex about a year at that point so I guess it's a long shot, unless it's a cumulative-effect kind of thing. Brain MRI showed no brain mets (whew) but I do have 4 skull mets.
I'm also on Verzenio and Zometa.
Maybe it's just 2020...
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I started this round of Fas in February. I had one ocular migraine at the beginning of July, two days after Fas shots. Then beginning of August seven, eight, and twelve days after Fas shots. Have you checked yours against your Fas schedule? We both started getting them in summer. Could it be intense sunlight in the window set them off?
Because of my concerns surrounding pain/possible injuries and who gives me the injections, my onc has switched my Fas shots from the research clinic to her breast cancer clinic, where the more experienced Fas nurses are. So that’s my plan. This is not the usual way, but when my onc wants something, she gets it!
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shetlandpony, lulubee
I hope you get some relief.
I have started getting headaches this summer too. They hurt in the temples, behind the eyes and down the back of my neck, but I do have arthritis in my neck. I am also on Afinitor for 7 months. Both meds say headaches but they just started in July.
Getting another brain mri on Monday. The one in June was clear. These headaches have been almost everyday all day long for a month. Tylenol barely touches the bad ones. I’m already on Celebrex. stupid cancer.
Dee
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brain MRI is clear. Shots hurt but not as bad as last time. I think they are messing with my arthritis too. My back and hips and foot all ache. Headaches are ongoing but livable. I am looking the CDK 2/4/6 trial single agent ( no shots! ) hoping for stable disease which I have yet to achieve
Dee
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Great news AlabamaDee!
I get headaches too but I've been getting them on and off since the first cancer diagnosis. I attribute them to the medications.
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Hi there everyone!
I just got completed my third month of Faslodex treatment, and my scans are showing amazing results. With far fewer side effects than Ibrance/Letrazole, I'm wondering how long I'll be able to stay with the current regimen. So my question to all of you is: How long have you been on Faslodex, and showing good results?
Thanks!
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Hi Banana4me,
I’m at about 33 months. It’s been a great treatment for me. I did decide to layer on Verzenio, primarily as I suspected that I would have trouble accessing it down the road given approval processes here in Canada but everything seems to be holding steady for me with the exception of some potential small progression in my bone mets.
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Hi Banana4me,
Congratulations with your scan results.
I'm at 5 months, and it is also a good treatment for me, - with milder side effects. As I have Her2+ mbc with bone mets, Faslodex is combined with Herceptin every 3 weeks, and Xgeva every 4 weeks.
My scans show I am stable, and the frequency of the pet/ct scanning has now been extended from every 9 weeks to 12 weeks, and a switch to ct scanning for routine checks (and pet/ct scanning once a year).
Hoping we all can stay with this treatment for a very long time.
Take care,
Meja
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Dee, sometimes I think that we can get body aches because of our body compensating when we have pain; or even more than that, from some unconscious psycho-physical reaction of protection or fear from the trauma of the injury and the indignity. My yoga teacher gave me some poses to try (haven't done so yet).
I have decided that warm compresses for the car ride home, and a bun massage during my warm shower, are probably helping me lessen the painful lumps after injections. This works by getting the syrup to circulate instead of pool, I suppose.
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Hi,
I visited my oncology dept. yesterday to have my Faslodex (and Xgeva) injections. Recently, I had complimented a nurse, because I had had a minimum of local side effects following the Faslodex medication, she had injected a few weeks earlier.
She said, it is probably time for us nurses to brush-up on the best technique(s). Lo and behold, today this poster was hanging on the wall above the bar, which we are asked to hold on to take weight off from the side being injected. Some of the text is in Danish, but the pictures are self-explanatory and there is a reference (in English). Actually, I was surprised because the injection site was a bit higher and more to the side, than I had experienced previously. And this morning - much less tender 👍Other important points:
* Warm up the syringe before injecting.
* Inject slowly.
* Go for a walk after the injection.
Have a nice day,
Meja
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Had my first shots yesterday and it was my nurse practitioner who did them, so I know her which helps. All procedures as in Maja’s poster followed and, apart from my being very anxious and spiking my BP to a silly level, all was fine.
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Changing the subject a little, I've been on Faslodex almost one year. The good news is that my lung mets and medialstinal lymph node are responding to it. The bad news is that I've been gaining weight since I've been on this TX.
Now, my type II diabetes iris getting worse since I've been on it. My doc has just added another medication, hopefully it will help. I think the next step would be insulin if this doesn't get my A1c down.
I wonder if anyone here has diabetes and if SE of Faslodex has affected it. I hope you'll respond if you do.
I have scans coming up next week. We'll see if Faslodex is still working. It's been an easy TX for me so I hope it is. I've had y90"s for my liver mets, they are very stubborn. .and don't seem to respond to any other TX.💞
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Karen, I had my first shots of Faslodex yesterday. I was a bit apprehensive, but all went well. One of the Infusion Center nurses gave then to me and did quite well. No bruising or pain. She had me stand and injected slowly. She said there was a kind of safety on the syringe that kept her from injecting too quickly. Glad it was uneventful for you.
Grannax, glad to hear the Faslodex is working for you! I don't have diabetes, but I am overweight, so not too keen on this drug causing me weight gain and increased glucose levels. I'm also taking Piqray and increased blood glucose is a usual SE, so I'm fearing a double whammy. Not looking forward to having to take Metformin. Ugh, it's always something else! Fingers crossed for good scans next week.
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Hi Grannax,
I can’t help with the diabetes question but you and I have spoken before about the weight gain. While my actual weight has not gone up, I did notice early on that i am much thicker around my middle. Annoying but.., Faslodex continues to be good to me so I just keep walking!
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Hi Pam, I've been on faslodex a little over 3 years. No side effects to speak of, though some injections are sore a few days. I've been a bit moody lately but with 2 men in the family off to a nursing home and this covid-19 and political mess, well it's not surprising. Scans were last January and I'm due again next January! Dr is convinced with my grade 1 cancer and high estrogen receptor status that I'll go years. Every ache or pain makes me to wonder, but they are fleeting and that is key. I do work hard in the garden and have a touch of arthritis. If a pain persists i can always go for scans. I didn't have chemo with early dx , I hear that factors in to how long this will help.
Good luck to all
Gailmary
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Thanks girls. Gailmary, I think this pandemic makes everything for us harder. In fact, I made up a new word, scansdemic ( scanxiety during, a pandemic). LOL
So, we just keep on walking.💞
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Gailmary...how does chemo with first diagnosis factor in?
I have put on weight since my first diagnosis and even more on this second bout. But I think any meds that fluctuate hormones in any way have the tendency to do that, especially for those of us that can look at a dessert and gain weight. I also can't exercise much at all anymore so that doesn't help.
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Jackie, it was my understanding that cancer treated with chemo does not respond as well to subsuquent lines of treatment, each drug being less effective than the last. Not so for cancer treated without chemo, like surgery, radiation and hormonal treatment alone. . I dont know. I didn't see a study but read it somewhere, perhaps here on BCO.
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gailmary...I never heard that. 😟
Thanks.
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Hmm, I thought it was just that each treatment encourages more mutations as the cancer looks for a pathway it can use to keep going. But I can’t cite any particular studies.
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SP,
That was my understanding as well. However, not sure that's correct either, because although I had chemo with my original diagnosis, my first metastatic diagnosis was in 2006, and I was on the same treatment (letrozole) from 2006-2019. When my F1 report came back in 2019, I had 25 mutations on just that one treatment.
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Or shall we say just on two treatments? For a while I have been thinking it was a little surprising that there were so many mutations found on your F1 at this point. Is it by any chance grade 3? (Not likely with ILC, I know.) I have an idea that the higher the grade, the more quickly mutations occur.
Edit: I started poking around the internet. There was a paper about glioma (not breast cancer, mind you) and temozolomide. The gliomas that recurred had all acquired a somatic mutation in a mismatch repair gene on this treatment. So this introduces the idea that perhaps a particular agent could cause a mutation that would promote more mutations. But it doesn’t really make sense in my case because I have that mutation germline and it took a long time for my F1 to show high mutational burden. Ok, this is way above my head.
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SP,
Yes, of course, two treatments -- one with original cancer, one with original metastasis.
I don't know what grade my original cancer was -- it was so long ago and the paper reports that I have from that time (2003) are incomplete and my breast surgeon has retired. When I had my biopsy in 2019, they didn't show a grade. I questioned my MO about that (or rather the NP at my "new" cancer center at that time) and she said -- I don't think I have ever seen a grade on a biopsy. I let it pass, but now I see that people do seem to have grades on their biopsies -- I'll see what happens with this latest biopsy and question it again. However, since grade 3 is more aggressive, as I understand it, and since I went so long without anything showing up (13 years) it seems unlikely to be grade 3? But I do wonder how all of those mutations were adding up and I was not exhibiting any changes in my cancer showing up again? That's my very limited knowledge of this stuff. In a weird way, it's fascinating and shows something about how unique each cancer is, despite type. But....
As you said, this is way above my head.
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I had my first two Faslodex shots last Wed. The shots were fine. My nurse is very skilled. Then I started a new cycle of Ibrance on Thurs. I had some D and abdominal pain Fri, Sat, and Sun. I usually have that from Ibrance but I wonder if Fas added to it. Then yesterday, the D and pain ramped up quite a bit. I've read that the max level of Fas is achieved at seven days. My loading doses are next Wed. I'm really worried that things will get out of hand at that point. I've taken some Imodium for the D and upped my regular Pepcid for the pain. The D is under control right now but not the pain. I've spoken to my nurse this AM and have a message in to the PharmD to call me. Is there anything else you do for stomach pain? Do you even have stomach pain? My GI system has always reacted like this. I guess I will cross-post in Ibrance.
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