Faslodex Girls Thread
Comments
-
PB, yes, thinking the same..like Faslodex + Afinitor or triaI with a trio of antihormonal + Afinitor + antiFGFR1 inhibitor. I will post what my MO says when treating real world patients with this mutation.
0 -
Hello,
I did enter a Zeno trial in combination with Ibrance and is doing well. I also take Xgeva. My bone Mets have both reduced and some no longer show activity on the PET. My doctor wanted to save the Falsodex for possibly later. I still get some hip pain but only if I overdo. I’m in the 4th month of the trial drug. My doctor is pleased with the results. I get a PET scan every 2 months. I’m due for one on June 12th so I will let you all know how I’m doing.
Glenna
0 -
Has anyone had a similar experience? Two days after my Faslodex injections I had a little visual disturbance that in the past was associated for me with a migraine headache. Three days after I felt tired and depressed. Four days after I woke up with the following, which taken together seem like migraine: Dizziness, visual disturbance/aura of jagged lines and missing spots of print, slight queasiness that caused distaste for food despite my being hungry. Has anyone had these issues and believe them to be associated with Faslodex? I took an ibuprofen and it seemed to help, which is what I used to do when I felt a migraine coming on. The reason I suspect Faslodex is that my migraine headaches of the past were associated with my menstrual cycle, so there was a hormonal connection. Ditto for low mood. I used to get the aura then a pounding headache, while now I had the aura, dizziness, and queasiness. My temperature, oxygen level, heart rate and rhythm, and blood pressure all checked out ok. I would have liked to know my blood sugar and potassium levels. Faslodex is nothing like the aromatase inhibitors in terms of estrogen-deprivation symptoms, but still...
0 -
Shetland, very very interesting. I began having ocular migraines regularly (every few days) a month ago. They are as you describe, to a T. I've been on Faslodex for about 15 months. I can't explain why it's just now starting.
There *can* be a serotonin component to migraine, and serotonin tends to rise and fall with estrogen. I have a low serotonin problem that is tied up with my MTHFR mutation somehow and of course it's only exacerbated by anti-hormonals like big bad Fas. I have wondered if a low-dose antidepressant might help but I don't want to take more meds than I must, especially with my past liver issues which you know about.
Anyway, I'm sorry you're suffering with these headaches, too. I have several natural strategies for making them slow their roll. If you need help in that area, PM me.
0 -
Hi Shetland,
I do have weird spacey moments these days and have been experiencing frequent headaches but I’m chocking it up to my neck and extra gardening. At least I hope so. I have had problems with numbness in my right side of my face which could be from my skull base mets but could also be from some stenosis in my neck. It was discovered last year along with the mets. It seems to flare with inflammation which would jive with the fact ibuprofen helps. It also causes some visual issues, dizziness and feeling of being a bit unwell. Never easy to unravel what is causing what symptom it seems!
I don’t believe what you describe is from Faslodex although I suppose anything is possible. I’ve been on it for 2 1/2 years with no trouble so would recommend you keep a record to track this symptoms and call your MO if it persists. I am sure it’s darn concerning. The facial numbness had me seriously freaked out.
0 -
hello everyone- I’ve been gone for awhile, but doing ok and grateful for Faslodex, but I’ve been on it for 2 years now, let’s do math: 24 shots in each buttock. I’ve had good and bad shots....but I think my butt is saying no more! I’m starting to hurt on both sides.
is there any news regarding oral SERDs coming?Take care
0 -
Hello Fanny Pack! I just had my first Faslodex injections yesterday. I was DREADING it, but the injections turned out to be not so bad! #Relieved
I had been on Ibrance for almost a year, but my last scan showed new spots on both lungs so we decided to switch attacks.
Anyone else notice strange (foul) smelling urine the day after getting their Faxlodex injections? Other than a slight headache, that's the only symptom that's noticeable to me.
I'm still waiting to find out if we'll be adding Piqray to my regimen, but should know next week.
2010 dx Stage IIB ER+ HR-, left mastectomy with reconstruction, chemo
2010-2019 tamoxifen
May 2019 dx Stage IV with malignant pleural effusion, mets to bone
July 2019 Ibrance and Latrozole
June 2020 mets to lungs
July 2020 Faslodex0 -
banana4me,
oh, yeah, that's a classic sign with faslodex. the meds are suspended in castor oil, and that lovely smell will stay with you for a few days. When I started faslodex, I mentioned it to my MO and her NP, and they both looked at me like I was crazy and said they had never heard that. There's no way that's true -- the smell is NOT pleasant.
0 -
Stinky pee here too! I also get strange headaches.
0 -
Lulubee, I'm with you on not wanting to take more meds. I'll PM you. Interesting that several of you mention headaches. My onc does not think that Fas would cause hormone-related side effects because of how it works. (She takes me seriously so this is not a case of general SE denial.) But how about that nasty castor oil? And absolutely, big-time chemical smell for a couple days. I'm going to start keeping a log of possible SEs.
How about foot and hand cramps? I had calf cramps on tamoxifen and foot cramps on Faslodex. Unless it is wonky levels of potassium etc., which has been an issue because of one of my other drugs that causes diarrhea.
Chemokaze, I would love to have an oral SERD, although I doubt the trial gods would allow it for me even when it becomes available. I wonder if Cure-ious knows anything? As a person with very little real estate and plans to be on this treatment protocol long-term, I am worried about developing scar tissue in my derrière, so I am really insistent that someone good at it administer. My usual nurse was gone last time, and I thought I had a good plan B nurse, but ended up with a painful lump and large bruise on one side, and I could not lie on that side for a week. Does a lump mean the injection was not done properly as to depth etc?
0 -
SP,
I get foot cramps with faslodex, but I got loads of cramps with letrozole. These are relatively mild foot cramps, but still uncomfortable.
As to the lump, etc., I have only had that happen one time in a year. Yes, I think it's something to do with the administration. My regular nurse is currently out on maternity leave for 3 months, so last month (her first month out) I was very talkative to the substitute nurse. I explained how I had gotten lumps on both sides the previous month, had pain for the first time, etc. So she slowed down, gave me the shots a bit higher, and it was much better. No lumps. They have to warm the stuff first, and they have to inject slowly -- my regular nurse does it over a minute or more.
Good idea to keep the log.
0 -
This recent nurse gave them very slowly, and they were warm. When she asked me if I wanted to take some hot packs for lumps, and said that she gives them to all her patients, I thought, “Uh oh. Does she routinely give people lumps?" When I would tell her it was aching, she said she would take the needle less deep. My usual nurse just pauses when it aches. So I wonder if lumps are the result of the syrup going into fat rather than muscle? This is reportedly a problem more for women with generous fat, because the needle does not reach the muscle. I may call the drug company to find out more.
0 -
SP-
That would be interesting to know. I have plenty of fat in my derriere, and the lump only happened one time. I think people reported this before, but my nurse gives me cold packs that I use for my ride home.
0 -
Foot cramps yes... thought it was too tight sheets. As to the lumps, mine seem to be permanent. I have a matching set but have been on Faslodex for 30 months. I assumed it was due to the viscosity of the suspension. I think Tina has them as well.
0 -
It's true: I have lumps. However, they are smaller since I went back on Faslodex. I think it may be because the saintly RN who administers them does so carefully and slowly. I certainly haven't lost any fat back there!
Tina
0 -
How the shots are administered makes a big difference. But you can help the soreness. Before you sit in the car and start driving spend 15 minutes walking around one hand on the site of each injection. As you walk move your hands up and down to distribute serum. I've walked around the parking lot like this for the past three injections and have had no pain at the site like I did previously.0
-
No pain, just funny looks from people in the parking lot?
0 -
I’ve got lumps and more lumps. One side is worse than the other. Chemo nurses giving them not bc nurses and they’re not as knowledgable. Had to tell the last nurse where the injection site is!
The stinging is worse on the lumpiest. The chemo chairs are heated so I make sure I wiggle down to get the heat afterwards and before. Just trying to loosen up my gluts. Then I do walk and ruB but ready for cold packs when I get home.
The soreness lasts a couple days and I’m very tired. Wondering if a massage would help but Covid.... or if being slightly dehydrated makes it sting. Hard to get enough to drink when on antihistamines round the clock due to piqray. Claritin didn’t help with my injections.
0 -
ShetlandPony - Yep, a few funny looks in the parking lot. That is part of the fun.
0 -
Excellent.
0 -
My lobular cancer went to my stomach so I have bile duct obstruction so I lost 15 lbs and my bmi is 18. During my #10 shot the nurse hit a nerve which is causing neuropathy on my left leg. Hemp oil helped with the ache but my foot is still numb so I walk with a limp.It has been 2 months so any s suggestions ?
0 -
Irsreyes, I’m sorry to hear about the neuropathy. Can a neurologist at your hospital give you an opinion? This is an injury, not a side effect, and I think they should help you. I hope you refuse to let that nurse give you any more shots.
Will you be getting a stent for the bile duct? I have had bile duct stents for a year.
My BMI is below 18. I lost a lot of weight during a rough start on my trial drugs. I Gained six pounds recently, but lost them again in the past week because I don’t feel well when it is time for new stents. Yesterday I got new ones, so I will try again.
0 -
I don't have pain with my obstruction because I have been on a liquid/soft diet since my scan showed this problem. My stomach has improved a lot after 5 months of Ibrance/faslodex treatment. I am scheduled for a Pet scan on 8/7 . I am glad that you are NED after 6 years of mets to liver so I hope to be around for awhile since my onco said that I respond well to my treatment and my neutrophil, hemoglobin improved after my dose was lowered to 100 mg. I am more focused on getting a NED results.
My onco in not concerned about my foot problem and I am getting my injections done by 2 experienced nurses who injects them higher on my butt & at the same time.
0 -
I didn’t do a big search here but was wondering if anyone experienced a big bruise after their Faslodex shot. First time to bruise for me.
Each time I get shots is a guess whether I am mostly pain free or spending the next several days hurting. I will try nopink’s idea of walking and rubbing. 😜
Dee
0 -
Nope, no bruising for me. I've now been on it a year. But that walking and rubbing works, and I also ice on the way home.
0 -
Once I had a skin reaction, not exactly bruising. I worried that I wouldn’t be able to continue but it only happened the one time thankfully.
0 -
My knot on my right cheek showed up on my last pet scan🤪
I also get a sandostatin shot for the Neuroendocrine features in the right cheek same day as my Faslodex shot. I don't want to get it in the left because that would be 2 chances of hitting my sciatic nerve which is already slightly pinched.
I will mention the bruising to my MO on Friday when I get my 3 month scan results.
Dee
0 -
Anyone else have significant back/joint pain with Faslodex? I've had my first two injections, and my lower back on the left side is killing me. I've taken different NSAIDs, used OTC Pain patches and roll-ons, and heating pad. Nothing seems to help. I do have bone mets in that area so I'm wondering if this is a side effect or indication of spreading mets?
I see my MO on Thursday (when I'm also scheduled for Zometa infusion and my next Faslodex injections) so I'll mention it to her, but wanted to see if anyone in this group experienced something similar when first starting out with Faslodex.
Thanks!
0 -
Hi Banana4me. Yes, I had a lot of joint pain for a couple of days after the injections when I first started Faslodex but that lessened considerably over time. The bisphosphonate did the same thing.
Question for everyone, I recall some discussion of a generic Faslodex. Are any of you on it? Any difference noted? I just ordered my next injections and received a notification of claim through my extended health provider. My pharmacist claims directly from them and it appears they were stiffed about $200 as the payment was based on generic pricing. I wasn’t aware that the generic was available in Canada yet and no indication it is available in British Columbia. I may need to do some digging...
0 -
Hmmm, When I started using Faslodex again this year, I noticed the packaging now features the name "Fulvestrant," with no mention of "Faslodex" anywhere. I later noticed that I am being billed for "Faslodex," and my bill for the generic is the same as for the brand had been.
Fishy?
Tina
0
