Faslodex Girls Thread
Comments
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Lindalou, while I wouldn't say never, a pill form of Faslodex would be a major reformulation so a major surprise. I'd expect the FDA to require some kind of clinical trial to prove bioavailability, which would give us warning. I'd love it if someone could prove me wrong.
That said, there are some "cousins" of Faslodex in clinical trials now. I tried to get into one but the timing wasn't right. The one I was looking at was a pill. I'm not sure how far away from market those are.
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Linda,
I have a lot of scar tissue, so much so that my nurse occasionally comments on how difficult it is to administer the shots. She sometimes even replaces the needles pre-attached to the syringes for others. The areas in which the injections can be administered are limited, as you know. I have a lot of pain in my lower back, particularly on one side, that I believe is caused by the Faslodex exacerbating arthritis. The nurse does not think the injections have affected my sciatic nerve, but I sometimes wonder.
I have not heard or read anything about a Faslodex pill. That might pose a cost issue for many of us on Medicare in that it would no longer be considered a treatment but a prescription.
Will you be able to resume getting two injections next month?
Tina
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Lindalou, hadn't heard that but that would be awesome although pam and Tina have a good point.
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Tina's point answers a question I have had about why I don't pay for the shots. Not even for the nurses visit. Pills would be easier on the bum but not the pocketbook. I'm seriously considering retiring or going on disability this year and am anxious about the financial aspect.
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Thanks all for your feedback. As it stands now, I will only get one shot for now on. Currently my insurance pays for my shots. Cost is 1,700 for one shot! I have a copay of course, but wow that's expensive. I have a few more years for Medicare and then I know it will all change.
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Lindalou-sorry about the scar tissue. I am at about 4 years-will have to check.
Would LOVE a pill form....anything but the butt shots! IV would be nice too.
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Bucking the tide here (so to speak), I'd rather have shots than an i.v. That would either mean a port, or a bunch of needle sticks in the hand, not to mention the extra 90 minutes in lab services and infusion.
At 3 years I haven't noticed issues with my butt, but I admit there's quite a bit of padding. . . those of you who are nice and thin must have a harder time.
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I'd rather go with the infusion. Butt shots feel numb and itchy afterwards. (which I find odd)
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Pam, I hope I fall into your camp and do not develop problems with the butt, as I agree with all of your points on IV. I have lost a lot of padding there lately but hope some comes back....
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The Devil-You-Know Dept.: I've got plenty of padding, and now plenty of scar tissue which is probably increasing the padding! Still, I'd rather have a couple of relatively quick injections into fat and muscle monthly than a time-consuming infusion into my increasingly unreliable veins or a port. My doctor's chemo room is depressing and gives me the willies. I may wind up in a chair there at some point, but I am hoping it won't be soon.
Tina
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Sigh, my tumor markers are up from 77 to 90. I was diagnosed with a small met on my pelvic/hip area. I have had a lot of muscle discomfort and saw my radiologist yesterday. Friday I have an MRI. Today I see my oncologist. I have had 5 or six falsodex treatments. I guess it is not working. All of my other blood work was perfect. So depressed.
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Lisajo, Don't let a small rise in TMs get you down. I don't think that necessarily means Faslodex is not working for you. I hope your mo visit today and mri on Friday will ease your mind, or at least give you some good answers. Being dx'd with "only" 1 small met is good. I believe there are several women on the boards that have had rads with curative intent for a single met and have been NED for long periods.
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Anyone know if faslodex causes uptick in liver numbers? I saw my PCP today and she said my "liver numbers" were up slightly and she wanted me to have a US of my liver but because I already have a ct scheduled in a couple of weeks and then an onc appointment guess we'll wait and see - so hoping I can stay on faslodex because the next step is probably chemo - good thing the weather up here (in eastern Canada) has finally turned into winter - I can just lose myself in a book or two or three.....
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yes Lisajo, jobur is right. Don't stress too much until you get all the info. One small met is very minor in the big picture. I know every single thing just seems like the flood gates are open. But if you read enough here some women have ridden a huge up and down roller coater for years! 208, is that the only med you are on? I ask because I was on the Ibrance/Faslodex combo and Ibrance seems to reek havoc on my enzymes. We will know more in two weeks when I get another lab after stopping the Ibrance.
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lisajo, as jobur mentioned I had radiation to my one rib met (and to the chest wall recurrence) and while it hasn't been that long ago (spring of 2015) my last scan read no evidence of active disease. I would talk to your onc if radiating the met is indicated.
Wishing you a good visit with your onc and that it brings some relief!
Lisa
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Lisajo, I hope the visit with the oncologist went well. Don't worry so much about the tumor markers rising. Mine have been rising for a year now but the last scan says the spots look better.
Don't make any decisions based on markers alone.
I second the idea of radiating the met if it's the only one you have.
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Ladies,
Thank you for responding. I did have 16 rounds of radiation and then started Falsodex in October. I had my sixth injections yesterday. My onc does not like my tumor markers at 90 and thinks I have another met. I have a pet scan tomorrow. Terrified. I am so scared it is in an organ. My Metabolic blood panel was normal and so was my CBC. But I read you can have mets all over and no symptoms. I feel fine. Any thoughts? Any good thoughts?:)))
Lisa S.
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Artist - I am only on Faslodex but last night did a little research and found the original handout from the drug company re se's and right there in black and white under "common se's" was rise in liver enzymes - my PCP isn't familiar with the drug apparently but I'll scan next week and am pretty sure things aren't percolating (or who knows???).
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208, You found that in Ibrance literature? I'll have to dig deeper.....I know the Faslodex says that but we haven't found it in the Letrozole or Ibrance stuff yet.
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No, Artist I found it in the faslodex literature - I am not on Ibrance (it isn't available in Canada yet).
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lisajo6,
I wish I had something helpful to share. My tumor markers haven't been indicative of what's going on and my onc stopped checking them after my mets dx until just recently when he ordered them. They were always fine and yet I developed mets. Hoping for good results from your scan and sending you a cyber hug (( ))
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208, We did see that in Faslodex and I'm worried of course......I'll have to update next week and the week after to see if those enzymes come down. Hope they don't rise with everything or what I am to do???
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Lisajo, We all fear the worst when there is uncertainty. I hope the PET scan tomorrow will bring you some peace of mind once you know if you have more active mets or not. Just please remember, treatment can make a big difference even if there is more than one. I started out with bone mets throughout much of my spine and pelvis, but per my last PET, there was very little activity after 6 months of Faslodex. So hang in there and try to think positive. It's great that you feel good, that is important to your quality of life and a good indicator.
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Hello ladies. I am new to this thread. Bmx in June and staged 2. Complained a lot of lower back pain which led to a lot of scans which brought me to a hysterectomy last week. Pathology clear from hysterectomy. Those same scan showed an abnormality on t2 spine. Biopsy brought me to stage 4. Was probably stage 4 out of the gate. I have been on femara and aromasin. Both Lasted 7 weeks. Off dur to UNBELIEVABLE pain. And I have a very high tolerance to pain. Could not walk. Starting falsodex next week so will be following ya'll closely.
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Welcome Mab60! So sorry about your recent stage IV dx, but happy you found your way to this forum. Lots of knowledge and support here. Hope your 1st round of Faslodex shots go well. Be sure to read the tips above (thank you again Pam!) and feel free to ask any questions. How is your pain level since stopping Aromasin? Hope you are feeling better.
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Thanks for the welcome jobur. oncologist states pain was my reaction to the ai's. Not the met. Just finished rads to the t2 spine a couple of weeks ago. I am overweight and have read that sometimes the pain can be exacerbated with weight. Mentioned that to her today. She felt that theory was debatable but recognizes the reaction to the ai's. Mainly my left side but getting better. Left leg very swollen initially preventing mobility. Sounds like falsodex is different from the ai as it does not shut down estrogen levels but prevents the attachment to the cancer cell. Was hard to jump off aromasin at stage 4. Hoping falsodex is more tolerable. Willing to deal with some side effects!! Will be following this thread closely. Thanks everyone
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Welcome Mab60, I just had my 2nd injection of Faslodex and so far don't have much of any SE's at all. Suddenly a little achiness in elbows and knees and maybe a touch of constipation. but am hydrating like crazy and keeping up my fiber intake so we'll see....Hope it is a breeze for you too and we all do well for a very long time!
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Welcome Mab60! I had my sixth injection Thursday. My side effects are I feel bit flu-like for one day.
Ladies, I had my pet scan today and my onc called me tonight. My bone met is completely healed, but there is some inflammation. Two lymph nodes it up. One by my trachea and one under my armpit. I have lymph nodes lighting up all the time They always end up being hyperplasia. So I don't know what the next steps will be.
Lisa S.
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Lisajo, other reasons can cause increased metabolic activity on pet other than cancer. Fingers crossed.
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Welcome Mab60, I hope Faslodex treats you better than Aromasin. Yes, different mechanism.
Lisajo, those lymph nodes could light up because you're fighting some infection off. Or they are reacting to something. They always tell me my gluteus lights up on the scan. That would be due to the fact that you're shooting castor oil into it once a month??
Congratulations on the healing of the bone met!
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