Faslodex Girls Thread
Comments
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Hi Kathy,
Nope, I get mine only in "mono"! That's so funny that they are both named Wendy; it adds a bit of whimsy to the whole deal! Very efficient!
The satellite campus where I get my shots is very small and temps outside have been triple digits or close enough, so no walks, but on days that my bum knee is cooperating, I should look for someplace nearby - and indoors - for a stroll afterwards. Does the walking help minimize pain? Luckily, so far I haven't had trouble with that.
As far as your CT, it'll be interesting to see what your MO says. After chemo earlier this summer, my PET showed some slight improvement in my liver - the real area of concern - but growth in two other random nodules, so my MO switched me to Faslodex. My liver tumors are heterogeneous, so it's a shot in the dark (ha, ha) to see if these have a stronger effect on the liver. We'll see in October when I have my next PET.
Keeping fingers crossed for you.
Smiling,
Katty
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I had my third Faslodex injection two weeks ago, but had a burning and some pain on each side of my hind end where I get those shots just last night. Has anyone else experienced this weeks after the injection or do you think it might be my hip mets causing the pain. I don't usually get much discomfort from the shots, but it felt like I had a rough injection yesterday when I had not had one. I am puzzled. I have taken loratidine daily since my neulasta days years ago. I am not willing to go without it in case it is helping with the discomfort. My nurse gives the Faslodex over about 75 seconds which is good for me. Very little discomfort.
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Hi everyone,
I am sure this has been addressed in earlier comments on this thread... but with 96 pages of comments, I'm just too tired to sift through them all!
I started Faslodex on 8/16, and I had my second injection this past week on 8/30. My third injection will be on 9/13, and after that I will be monthly. My first injection was painful -- it felt like I had been stung by bees, and the muscle was quite sore for a few days, with bruising afterwards. My second injection went very smoothly -- not painful at all! But I have developed a rash at the injection site -- on both sides! Its not a large rash, maybe 3" wide x 2" tall, with raised red bumps. It's not very itchy. I have e-mailed my MO to let her know, and I will be seeing her on 9/10, so I am planning to discuss it. But in the meantime....
Have others experienced this? I see many of you take benadryl or claritin in advance of the injections -- is because you were having rashes? Or is this to address other side effects?
Thanks!
TwinkleCat
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Twinkle,
I think this skin reaction is fairly common, particularly in the beginning of treatment, but have no idea why. Mine was hives and quite itchy. In the grand scheme of things, it doesn't seem like a big deal, just annoying. I slathered anti-itch lotion on it and it calmed down after a few days. It hasn't happened to me for quite a while.
Tina
P.S. I take loratadine every morning for allergies, so maybe that's helping!
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Thanks, Tina! That is a relief to hear! I didn't see any mention of localized rashes in the Faslodex side effects information, so I wasn't sure... I am glad to hear this is pretty common.
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I've been lurking here for months and finally joined. I'm struggling with brain fog from the faslodex like crazy. It's so frustrating. It's like depression. Anyone find things that help? I also have a crazy itchy arm, but that's okay. I have had 4 or 5 injections over the last 2.5 months.
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An itchy arm, not an itchy butt? Hmmm. I have no answer to that.
Tell us more about the brain fog. It might well be depression, which is totally understandable. If you put your diagnosis info and history of previous treatments into a signature, we might be able to help more.
Tina
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thanks Tina2. I am only taking faslodex at the moment. I finished taxotere in May and had a BMX end of June. I'm doing great, except I feel forgetful, foggy headed, and just sort of blah. But the blah can lift, while the fogginess does not. I know exercise is supposed to help, so I do yoga, yard work, and walking.
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Hi all,
I am here for a bit of advice.my mom had extensive disease when she was diagnosed denovo in Oct 2016.extensive bone mets,adrenal glands ,all lymph nodes of the axilla and the mediastinum,lungs and plueral effusion too.she is 100% ER positive and her2 negative.did 4 rounds of EC and 4 rounds of docetaxel which led her to having just residual disease.was put on anastrozole since may 2017.had a ultrasound check last month with led to detection of 2 axillary nodes being enlarged mildly 6 mm and 7 mm.did a pet scan which showed almost negligeable uptake in lungs but mild increase in skeletal mets and axillary nodes.doc told to wait until 3 months further on anastrozole and told us that axillary nodes were enlarged coz there is still primary in the breast .the uptake has remained the same over the last 18 months as 0.95.no change metabolically and morphologically.doc advised further to be on fulvestrant.we took the first dose 2 days back and now the doc advised to come for the next dose after 28 days.why so?I asked her and she said its once in 28 days!what abt loading doses?anyways is there any relation between leaving the primary in there?she was multicentric and multifocal.I assume that since the lesion in her breast remained unchanged it could be scar tissue which is taking uptake.doc blames us saying we refused mastectomy hence she got recurrence in axilla!
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HI bct9876 -- that sounds off to me. I started Faslodex in August, and I had the first 3 doses 2 weeks apart (3rd was yesterday). Will now be monthly. From what I have read, that is the standard approach. And for what it's worth, I was also diagnosed with stage IV de novo, and from what I understand, they don't typically even consider surgery until the mets are under control.
Has your mom been seeing this same doctor all along? Or is this a new doctor? If it were me, I would not feel comfortable with a doctor who 1) prescribes something in a manner that is inconsistent with the product labeling, unless they have explained to you why they are deviating from the labeling in a way that makes sense; and who 2) in any way makes a patient feel like he/she is to blame for their situation.
Good luck!
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yes twinkecat she has been seeing the same doc for the last 2 yrs.I did consult few other oncologists and all refused surgery .I honestly felt that after a bit of progression on anastrozole she would prescribe some other AI pills but was taken aback when she prescribed fulvestrant which is way expensive here in India and something that a middle class family finds difficult to manage costs of the drug .she suggested IV chemo too gemzar and carboplatin but I didnt want to go that route till exhausting hormonal therapy.
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BTW her ca15-3 jumped from 288 on 20th June to 489 on 30th august.I took her ca15-3 again before starting fulvestrant and it was 492 on 12th sept.
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Hello ladies!
I'd like to know your opinion about my mother's situation. She started Faslodex on 29 of June, so she had 5 injections, or 4 moths on it. She has now a regular check up to see if it's working. She has bone mets, which are in active state, or "were", I hope, in March. Her onco doc then didn't do anything about it, except swithching her from Zometa to Xgeva. We changed the doc and he put her on Faslodex. My mistake was that we didn't do a tumour markers test before she started. So now we don't have a base to compare. In March her CA-15-3 was 183, she started Faslodex 3 moths later, so I presume the number was much higher, because there was nothing to stop it from rising. Now it is 199. I see this as good result, considering, but not sure. In the beginning of November she's having bone scan, but until then we have only tumor markers to rely on. Base on your experience , do you think Faslodex works? She's seeing the doc next week and we'll see what he will tell her. Also there is something else. Before Faslodex her haemoglobin was dropping 3 months in a row. After the first month on that medicine it stoped dropping and stays the same for 4 moans. I consieder this a good sighn too, but who knows.
Sorry for the long post, but here is the only place I found with so much info about Faslodex in particular.
Rainbow
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Hi all,
Did anyone have elevated bilirubin levels while on faslodex?.my mom just had one dose and is due for her next in after 30 days.all her levels are normal except bilirubin which is 1.4 whereas normal is upto 1
Worried !!
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Kattysmith- I just started Faslodex on 9/28. Had PET scan that day as well. Radiologist stated my liver was heterogeneous not homogeneous as it should be. Nothing lit up on the PET scan but oncologist thinks it in my liver based on-enlarged spleen, previously elevated AST, ALT, ALK, elevated 15-3 (highest was 876) and heterogeneous liver. Did not have liver biopsy. A/C chemo brought Liver Function Tests to normal, 15-3 down to 182. Spleen still enlarged. Since I started Faslodex my LFT’s have been creeping up. Oncologist said Faslodex can raise them. Anyone else have this issue? Starting Ibrance on 10/26. Also, Kattysmith why did you say it’s a shot in the dark because your liver mets are heterogeneous? I thought heterogeneous described the shape of the liver (high and low spots) not the mets. He used the term diffuse to describe my possible mets. Since Letrozole failed me I’ve been on a roller coaster of treatments. So much anxiety!!-Jill
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Grrifff - I was using heterogeneous to mean that my cancer cells within each tumor aren't all one type, so it's more difficult to find a treatment that will successfully quash progression. When they do a biopsy, they base the next treatment on what those cells reveal, but the tumor may, in fact, have a higher percentage of a different kind of cell. Thus, a crap shoot! Based on my liver biopsy in April, I started on Carboplatin / Etoposide. My MO thought I'd get dramatic results from this combo, but nope. The effect was minor, and after not being able to afford Afintor, even with some financial aid, I started on Faslodex. I have a PET soon, so we shall see what we shall see.
This quote is from the article below, sans graphic.
Until recently, the cells within a tumor were thought to be similar to one another at any given stage of the cancer, [like the white gumballs in the machine on the left]. But scientists are finding that a person's tumor cells can be highly diverse. This could mean that a biopsy may capture only a fraction of tumor cells that are not representative of the whole tumor, [like a ball ejected at random from the machine on the right.]
https://www.mskcc.org/blog/what-tumor-heterogeneit...
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Faslodex gave me extreme muscle pain and ligaments felt weakened.
Back pain almost like back labor.
Hang in there.
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Has anyone experienced any type of eye issues with Faslodex?
Thx
Suzy
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Hi
Stillivin. My eyes deteriorated a great deal.
I'm on Ibrance too so I do not know which caused it.
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Thanks for your reply! Funthing42, can you expound on what type of deterioration you have experienced? I’ve mentioned it to my MO but he doesn’t agree it’s either med.
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I have had really dry eyes for the last 2 weeks, but not sure whether it's the Faslodex, the Ibrance, or the Zometa.... (or just because I'm lucky.) But I have an appt with my MO today, and I was planning to talk to her about it!
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Hi sorry late response. Blurred vision inconsistency. Ocular migraines.
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Hi Ladies! So glad I found you - my lobular has been on my chest wall for the last three years and now - after xrays for bronchitis they discovered it has moved to several lymph nodes, various areas of bones and I am getting ready to start on Faslodex. Concerned about potential side effects lasting for a long time.
This is my first post and I hope I got my history right and that it shows up! I've had some form of breast cancer for the past 30 years! Lucky my!
Appreciate any info about Faslodex.
Thanks,
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AGM77.
Welcome to the Fanny Pack! The length of this thread may appear intimidating, but you'll benefit from reading it. If it's too much, just read the beginning tips; they are invaluable. Hang in with us!
Tina
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Well my mom had to skip Faslodex dose only after 2 doses.she had monthly doses and not the regular loading doses.her bilirubin was 1.4 after first dose and then 1.9 after second dose with ALT and AST also increasing after the second dose.doc decided to skip the third dose due high bilirubin and wanted it to normalize before resuming again after 4 weeks .she has fatty liver toofeeling down 😞
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Welcome, AZGMA77!
I've been on Faslodex since August -- 5 injections so far -- the first 3 injections were all 2 weeks apart, and now they are monthly, since September. After my second injection, I had a rash at the injection site -- but after reading up (including the forums here) and talking with my MO, I started taking claritin 5 days before and 5 days after injection, and I haven't had any rashes since. (Except for a nasty heat rash that I thought was from the faslodex, but my MO and my dermatologist both confirmed was not!)
The main things that I have noticed with the Faslodex are fairly tolerable -- I'm hot most of the time, I have more GI issues, I fatigue easily, I pee a lot...
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Just joined the Faslodex crew after 11 cycles of Ibrance and 14 months Letrozole for MBC (previously on it before for early stage) I’m moving on to cycle 12 of Ibrance and hoping the Faslodex will stop my lung mets from growing. (They’ve been increasing a few millimeters every month since April 2018)
This thread was super helpful with what to expect with the injection. I took all the suggestions and had the first shots today. Whewwww my butt hurts!
I’m wondering how long the soreness lasts for most? Do you do yoga or exercise during this time or do you try to lower activity? I’m thinking squats would not be a good idea. 😆
For those who experience nausea is it intermittent? More the day of the shot or just off and on?
Thanks in advance
Ash
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Ash- I’m relatively new to Faslodex so I don’t have a lot of experience but my soreness usually goes away after a day or two. I haven’t had any nausea. My lower back does hurt though for 4-5 days after injection. I did read that this can be a side effect of Faslodex.
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Ashlyn, I haven’t been here in awhile but have been on faslodex for over a year now. I get nauseous a lot! It’s the worst right after the shots and maybe off and on for a couple of weeks. I take gravol when needed and that helps. Also, I finally figured out that I have to watch what I eat, nothing greasy, spicy,salty,easy on the dairy, and sweets and wine. 🤬And for sure I don’t over eat. Hope that helps a bit. I also get that back pain that feels like back labour. That’s off and on but I manage, when my knees buckle, I head for a lay down or a hot bath
Be kind to yourselves,
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thanks for your replies GRRIFF and TSU! I will keep the food tips in mind... I am hopeful that things subside after a few days. It is nice to read that you’ve been on the drug for over a year TSU. It must be doing something right!
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