Faslodex Girls Thread
Comments
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NCYogi, Thanks. The previous ones weren't terrible. This one is making movement really painful, particularly on one side. What's funny is, I haven't previously noticed the nurses warm the syringes, but this time the nurse did! But when the left side was injected, it did feel a little funnier. It kind of feels like the injection was a bit high, as my lower back is quite tender. Anyway, I'm just trying to move a bit, so it doesn't get too bad.
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Hi all,
I’ve been on and off this discussion board for several years now, usually jumping back on when I can use advice. 🙂 I’ve been getting Faslodex injections for nearly 4.5 years (I get a Zoladex injection at the same time and I also take Abemaciclib and an Eli Lilly trial drug that never got a name. It’s working, so they continue to provide it. I took Xgeva for three years, but stopped due to side effects).
Most of the time, I have no problems with the treatment. I usually take a nap when I get home and deal with some injection-site pain with a heating pad. But, increasingly, the Faslodex knocks me out for two days. I have bone pain, stomach issues, headache, sometimes a mild fever, chest pain, dizzines. Every bone in my body hurts. These post-treatment symptoms are becoming more frequent.
I’d normally assume that the side effects are cumulative, like with chemo, but I don’t feel horrible after every treatment — just some of the treatments. I’m wondering if dehydration is causing this? I try to drink a lot of water but often fall well short of that goal.
Would love to get your thoughts / experience.
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Mazie, I don't have much advice as I'm still new to this. I know people take Claritin for bone pain caused by other drugs. Is that an option for you to try? Hope things improve soon.
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That would be my thought, too, butI already take Claritin daily for allergies. Tylenol does help some.
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I've been on faslodex just over 4 years now with only 1 or 2 painful injections. Zero side effects EXCEPT maybe arthritis. Since I was also on femara for 6 years and it also can lead to arthritis I can't say. I am 65, perhaps normal, but not in my family. Did all my physical work in the garden cause it? It could have.
Good luck ladies
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Hello gailmary..... I'm not actually on this thread since not on faslodex.....yet. But I've been reading silently because my Onc has previously suggested faslodex/femara as a combo. I wondered from your profile if you were on both? But your recent post suggests you went from one to the other. Congratulations on the success on faslodex! I am trying to figure out what to choose of the options he is offering me (faslodex and femara or femara and Verzenio) since my 3 cycles of Ibrance have caused lower neutrophil than he's comfortable with. Thanks for any thoughts you can offer.
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Prairie sea,
The first year my doctor had me on faslodex, femara, ibrance and xgeva. That was after one met found in humerus in 2017. In 2009 I started femara for 4 yrs. Then nothing for 4 years.
It was very easy but then I had gall bladder out. The plan all along was for ibrance 1 yr. Then after a couple years major insomnia retuned like the first time on femara. So he said w grade 1, faslodex was enough for now. He could always add ibrance back if tumor markers rose.
Hope this helps.
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I am new to faslodex. I got my second loading shot 5 days ago. Question....my lymph nodes on my left side of my neck were swollen prior to getting any faslodex. Woke up yesterday and the swelling is considerably more to the point it goes under my chin. Is this the faslodex?
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I doubt it. It could be due to the cancer or perhaps a cold, allergy or infection. Check with your oncologist.
Tina
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Hello, fellow Faslodex friends. I'm about two weeks beyond stick #4 and so far, nothing horrible except I feel like a pin cushion with Faslodex, Zoladex, blood draws from my port, and quarterly Zometa. I got 27 months out of Ibrance and Arimidex, but it ran its course, unfortunately. Pelvic and chest CTs talked about "numerous" and "throughout" my thoracic spine and ribs, enlarged lymph nodes all over the place, and "lymphangitic carcinomatosis can't be ruled out", which took the wind out of my sails, as you all know. I've read that Faslodex can take up to three months to see the effects, so I'm looking forward to that. At shot #4, CA 15-3 was still climbing at the same trajectory, but I'm convinced (haha) that I've reached the peak and will see the decline of this stupid disease.
Jeez! Tons of negatives up there, so on a positive note, my CBC was almost perfect. After 27 months of moderate to severe neutropenia and multiple breaks in treatment, it's really nice to see!
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Hi everyone - just got first faslodex shots havent started anything else yet. Just wondering if anyone else got cold toes or feet from it. Mine seem to feel super cold this is highly unusual for me so thinking it may be from shot - just wondering if anyone experienced this and did it go away or stay - thanks
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This is where I receive the shots, probably for the past 5 months. I have no pain from the shots at all anymore. I've been on Faslodex for about seven months?
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Hello, I have been taking Ibrance and Faslodex for two years now. They want to add Prolia injections now. I get some back pain already from the Faslodex and wondering if the Prolia will make it worse. Does anyone have experience with this?
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Kglee,
I've been getting Prolia injections twice a year for about three years and have noticed no new pain, just my usual arthritis which I think is worsened by Faslodex, but at this point--eleven years on Faslodex--who knows?
Tina
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Hello! New to this thread. Had progression after 30 months on Ibrance/Letrozole. Faslodex is second line for me. What do you take with Faslodex and how long has it worked for you? Hoping to strectch this one as long as possible, but the literature makes it sound short lived!!
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KelQ
I've been six months on Ibrance-Faslodex following progression on firstline (Ibrance-Femara), much prefer Faslodex, hope its working...
From the Paloma-3 trial:
Patients who had received at least one previous systemic therapy for MBC saw a PFS of 9.9 months for Faslodex-Ibrance compared to 4.2 months for Faslodex alone; HR 0.43 [95% CI 0.33–0.57]; P < 0.0001. However, these would be people who had progressed on an AI alone.
Here is a review of published stats on this topic from 2019, so a bit dated at this point:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC64077...
They conclude that almost anything combined with Faslodex will be better than Faslodex alone.
Also, remember to make sure the cancer has not developed an ESR1 mutation, in which case it would be better to move to a clinical trial with a SERD or Lasofoxifene. Foundation One blood test can check for this.
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Thank you so much cure-ious! You always have the best info. I'm a retired ICU RN so I enjoy reading the studies as well. I was searching for some data analysis like this, but reading through all the studies gets exhausting! I'm currently on letrozole alone due to ibrance toxicity (that dreaded lung inflammation they talk about in the commercials). I have a new spot on my anterior chest wall that's being biopsied next week. Assuming I'm still ER+ planning for Faslodex + something beyond that. This gives me a good basis to ask questions. Glad to hear you are 6 months on I/F and doing well - gives me something to be optimistic about!
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Yesterday morning I received my second dose of faslodex (2 weeks ago I received the first dose). Several hours (9 hours later) I started getting frequent warm flushes (not sweating but uncomfortably warm). Then towards evening I started feeling extremely tired. Went to bed, didn’t sleep well, and I felt hung over and slightly I’ll-feeling. Full disclosure, we went on a trip, friends picked us up at the airport, had a very late dinner of a very small salad ( there wasn’t much on the menu that I could eat based on the diet I’m following), water and bread. Stayed up super late talking even though I was ready for bed several hours ago. So I don’t know if my bleah feeling is from faslodex or poor diet and not enough good sleep. I hope it isn’t the faslodex.
Any tips?
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You can blame the flushes and tiredness on Faslodex. However, give it another shot (ha!) before you attribute your subsequent bleah symptoms to anything other than diet, travel and lack of sleep!
Old Fanny Pack Vet,
Tina
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Thank you, Tina! My friend I’m visiting had just bought some ginger ale so that along with some chips and a sandwich and I feel better.
I think next time, I will try to stay home a few days after my next shot.
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GoKale,
Good decision.I have learned to take it easy a day or two after my shots. Unfortunately, I have had to learn this over and over again!
Stubborn Old Fanny Pack Vet
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Hi Gokale
It took me a few months to adjust to the shots
I even has a skin rash so has to get anti hist cream and vitamin e cream when skin peeled.
Up and down with flushes after 12 months
Not so good with raw salads.. still make me burp. Carbohydrates are my friend
You soon know whats good for body
Relax and and feetup
Never skip breakfast drink plenty of water
all the best
Bright in hope
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Bright 55 - thank you for this information. I sometimes have indigestion, but I am not sure when it started because it seems like I have had it a while. Still, it isn't too bad. I just want to be able to carry on with this med and not feel too funky on it. Fortunately, I am doing okay at this time.
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hi everyone. Just wondering if anyone here has had mouth sores from faslodex. Just saw it on the list and I've recently developed soreness. Not sure what is going on. Jaw pain. Back by ear. Started with cracked tooth and a new crown. First I'm thinking TMJ then ONJ. Pain about 2 months now but mouth sores are new.
Endodontist sees no sign of onj ( from xgeva) but has never seen it. Thought I might need a root canal but I'm scared it might make things worse. MO gave referral to oral surgeon but they are booked till early January. Not sure what to do. Bounce it back to MO. Not due for scans for another month. Oral surgeon wants CT scan of jaw . Maybe get that with usual CT for insurance to cover it.
Is this early ONJ? What's a girl to do? Worried
Hugs to all. Good night
Gailmary
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hi Gailmary
grinding teeth is an ongoing issue for me gives me jaw ear ache.... I have a mouth guard made up by dentist
Its not a problem at present
Also I have gastric issues caused by faslodex/ribiciclib combo so take mylanta tab and a script for Somac Ec to reduce acid refux
Rinse mouth with bicarb soda a few times a day was recommended when I first srarted but I do not have mouth ulcer prob.
All the best
Bright
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Gailmary,
I've been on Faslodex for more than a decade and the only mouth sores I've ever had were and are due to to an unfortunate encounter with herpes simplex in my youth,
Tina
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thanks Bright and Tina, I think often the Dr's don't know what causes what. They can't always diagnose right just like they don't always treat things right. So frustrating.
MO referred me to another oral surgeon that could get me in this next week. CT scan from oral surgeon best. Should be able to tell if it's infected or arthritis or?? Don't know if it could show TMJ . Whatever it is. I hope it passes quickly. MO still thinks I could go 10 plus yrs on faslodex. Meanwhile I'm still getting older and we all know what that means.
So, I pretend I'm fine, it helps! Yes, this is different than being in denial. That's where I wouldn't do anything about it.
Gailmary, the great pretender
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I have question I'm hoping someone might be able to answer. On my second round with BC. Was a local recurrence. Have regular MRI's and Mammos. Just had an MRI and the breast were fine but they saw something at the base of the right lung they want checked out. Right after my first surgery in 2008 I had a couple of small lung nodules but they hadn't changed in years. Also just had my 2nd pneumonia vaccine. Could the vaccine have caused this? Having CT scan tomorrow. Also was wondering what drug they use for lung mets?
Thanks
Deb
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Deb,
Yes, vaccines, colds and allergies can cause reactions that could be mistaken for lung mets. It's very common. Be sure to tell your CT tech about getting the vaccine.
I know it's hard, but try not to jump ahead.
TIna
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Thank you, Tina. That helps a lot.
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