Faslodex Girls Thread
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Thank you, lulubee. You know, this time my walk and warm packs were delayed about an hour because I went straight to another appointment after my shots. Also, my glutes had a workout from gardening and yoga in the two or three days before. I wonder. But this is so extreme. Moving the wrong way, and there are a lot of wrong ways, makes me yelp. Ibuprofen has helped somewhat.
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I went to MO yesterday for my regular four week check and my third Faslodex shots. My MO's office is on two floors. You go to the first floor waiting room first and get sent upstairs for blood work. Then you come back downstairs and wait (again) to see MO and get results of the blood word and talk to the doctor. Then I go back upstairs for the shots. Yes, it is a marathon. Yes, it is anxiety producing. I was sitting in the exam room waiting (more waiting) for the doctor and thought what if I could get the shots while I was upstairs earlier. I am sitting around all this time waiting, working up my anxiety about the shots. I can feel the knot in my stomach getting tighter and tighter. So when MO finally shows up, I ask can I get the shots when I am upstairs earlier getting blood drawn. He says oh, sure, no problem. After I finish with him, I go back upstairs. Takes me two minutes. My nurse says, "the doctor was frustrated with you for wanting to change the rules." (She has been my nurse for many years and she was kidding around as usual." But he really did say that. Why not tell me what he really thought? If he didn't want me to do the different order, why not just say so? This is my big pet peeve with doctors right now. I just want them to tell me the truth. I was talking to the pharmacist later and she said, "did you ever tell him that that is what you want?" You have to tell a doctor that you want to be told the truth? Their natural inclination is to not? In this case, he is putting his convenience before my mental peace of mind. I'm pretty sure that he doesn't need the blood work results to order the Faslodex shots. At some point down the road, maybe. But do your MO's want to see blood work before the shots? Now I have to decide if next time I will do my order or his order. More anxiety. And my palliative care NP came up with talking to me about "anticipatory side effects." If you want to get really angry, look it up.
BTW, the shots have been no problem so far. I feel the slight sting of the needle going in but then nothing. I turn on the seat heaters in the car on the drive home (someone else mentioned that). I get this zinging running down my legs for a while. I get the shots laying on my side(s) due to my mobility disability. I can't stand that long on two legs, never mind one.
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jaycee...When I first started getting the injections I did have to see the doctor first. They wanted to check the blood work first to make sure my levels weren't too low. Since I've been getting the injections awhile now, it doesn't seem to matter when I get them anymore.
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Hi Jaycee,
I've never heard of anyone needing bloodwork before the Faslodex shots. Here in Canada, because it's not covered by our provincial healthcare plan, I have to go to my GP to get the shots. I order them through my pharmacist and then bring them with me. It works out well as it gives me time to warm the vials prior to my injections. I only have blood work before my appointments with my MO (every 3-4 months) with the exception of a draw to check creatinine prior to them booking my CT scan.
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Jack5ie and Sadie, thank you for responding. It seems a little petty to me now, given all you go through in Canada. It is just a matter of him being willing to change his routine to accommodate my anxiety. Worth it for me, not worth it for him. Although he did agree but not without complaining.
I learned that my clinic doesn't keep the shots refrigerated any more. No warming. Just point and shoot.
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I do need to get bloods at my GP’s done a couple of days before the shots. Precautionary I think but they do insist. Arnica definitely helps the bruising, and it’s reassuring to hear that not all months are the same. My whopper of a bruise is now a large knot, so I’ll be having a chat about that.
Totally get the anxiety thing as do my team, my BP goes mental when in the hospital but fine at home, so my nurse now takes my word on doing my own readings.
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If I have bloodwork on Faslodex days, it's for something else. My center will do the shots while waiting on labs.
My 3rd set was done by a different nurse and she seemed to shoot a bit quicker than the nurse who gave my two previous jabs. Right side felt fine, but left side was a bit sore, then a little knot developed, then some itching. Seemed to me the nurse did the left side even a bit more quickly than the right. Nothing significant, but I noticed a difference with a different nurse.
Jaycee, I'm with you on the truth/honesty thing. If I ask for or about something, I want to hear the truth. If it can't be done tell me why. That's silly your MO agreed to your request, but then complained about it to others.
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Thanks, Bliss. I've been thinking about the doctor/nurse thing. I think the doctor assumed that the nurse would not tell me what he told her about his "frustration." I'm starting to think my change in order request is a problem for the nurse. I'll ask both of them next time. I am always honest with them. They may not appreciate that but I am. One issue I've noticed is that some health care providers are worried about being dragged to overrun hospitals to back up the depleted staff. My MO told me that that has already happened in Albuquerque. Many medical practices are owned by hospitals and can order them to do whatever. I talked to my palliative care NP last week and she was really distracted. She has spent many hours at the hospital with Covid patients. The social worker on my palliative care team is also spending many hours with Covid patients and their families. The only one where I could really get her attention was the PharmD. She is on my palliative care team and also works at my cancer center. OK, now I'm just showing off. But she talked me down and kept me from going home upset.
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Jaycee,
I just thought of another reason why your center might have been doing stuff the other way. At my center, the MO or the NP enters the orders for the visits/fas shots and they show up on my patient portal. They have a "shot clinic" going now where you can go to this little area on the first floor of the cancer building, get your shots that you need, and if needed, get blood work. One month recently I noticed that the blood work request hadn't been entered and I was due to go in in less than a week. I shot my MO a note and she said something about certain lab work being tied to a visit and certain blood work not. So it may be some sort of a reimbursement issue for the center. Just a thought.
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Bev, I don't think my center is anywhere near as sophisticated as yours. When I check in (downstairs), my MO orders blood work. It goes to my nurse (upstairs) where I get the blood draw. Then I see MO (downstairs) and he orders the shots. That also goes to my same nurse (upstairs) and I go up and get them. Makes you dizzy, right? The place always reminds me of that old PBS show, Upstairs Downstairs. My hospital has a portal where I get lab results. My cancer center (get this) does NOT have a portal. This last appointment, my MO made a derogatory comment about the hospital portal. I had no idea where that came from. It could be involved somehow but, of course, they would never tell me.
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If any consolation I think we’re all in the COVID wake wash right now. The staff are stressed, as are we understandably. I too have to run about getting stuff like bloods done and double checking things like appointments when they should be automatic and also checking that procedures are properly carried out .... like putting these shots in slowly and warming them up. I frankly don’t care if they roll their eyes when I request those procedures.... they only take an extra two minutes. Fairly certain when I show pics of my latest shot after effects that they will pay attention.
Frankly more concerned as to whether they actually knock the thing back.
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Good points Karen. I’m envious of those of you who are still seeing your MO in person. I haven’t seen mine face to face since January due to COVID. My next appointment is February and it is a phone call, yet again.
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Any advice / reassurance here gratefully received. I have a small pleural effusion which I thought had cleared after the first couple of injections. Now having had the first 3 sets of jabs and 2 weeks into waiting for my first monthly injection, the pleural effusion seems to be back and is worse than before. My nurse was surprised when I told her the symptoms had gone a few weeks in and did say this is very early days and the MO had said the effusion might get worse before it improves, so I’m hoping that’s what this is rather than the tumour growing!
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Oh Karen, I'm sorry for this development. I don't have experience, yet, with pleural effusion, but I just had a chest CT and they're having me wait for the report.
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Bliss the waiting is the worst isn’t it? Hopefully the report will be positive for you and you feel comfortable keeping us in the loop as to how it goes.
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Hi Karen. Yes waiting is tough, but it ended up being only 15 min. I'm glad they made me wait to have the radiologist read it because it was good news. My lung and liver lesions appear stable and my mediastinal node is now clear. That's after only a month on Piqray + Faslodex. Fingers crossed this treatment is working and I'll have some shrinkage next. Best wishes to you.
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great news Bliss and fingers crossed for further shrinkage
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Oops, I accidentally posted this on the Femara thread (well, at least my brain can comprehend the letter "F"?)
Because of some stuff, I am having to move my faslodex shots back a week at the end of December/beginning of January. So I will be going 5 weeks without my shots. My MO said it was fine since I've been on the drug "a while." (I've been on it since July 2019.)
Has anyone else had to do this and were there any repercussions? Thanks for any info you can provide.
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Bev, when I first thought I might go on Faslodex, I did some research. (duh) I read that it reaches max level at 7 days and it has a half life of between 40 and 50 days. I even asked the parmd person, doesn't that mean the amount in your system just keeps increasing each set of shots? Yup, it does. I think an extra week would be ok or even good to get rid of some of the excess.
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BevJen,
I was on Faslodex for many years and had no problems when I would delay a treatment occasionally because of travel.
Tina
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Thanks, Jaycee and Tina -- I appreciate your comments. I always second guess these types of things, I guess thinking that there is some "magic" in having the exact dose in my body at any given time. I guess it's a form of denial?
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BevJen, when covid first struck my shot for April (I think) was cancelled. But I looked and saw the half life was like 50 days so I quit worrying. The clinic needed time to sort out how they needed to proceed. They did see urgent cases.
Gailmary
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My question would be, how long can one delay without having to do the loading doses again?
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I had loading doses again.after I was off Faslodex for more than a year, but I can't imagine going off for a week or two would require that.
Tina
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Thanks for your responses about my one week delay in my late December/early January faslodex shots. My MO did state that I'd been on the drug for "long enough" that it shouldn't be a problem doing my shots a week late -- I was really just trying to find out if anyone had heard differently. Plus, with the info about the half life, I think I should be fine.
I appreciate it!
Bev
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I have been taking these shots for about a year now. My hair is starting to thin. I'm also on Kisqali, but I figure it's faslodex. Opinions?
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Hi Nopink.
My hair is thinning on top big time but I’m pretty sure it’s the Verzenio. I’ve been on Faslodex for three years and have only recently begun to experience hair loss. My money is on the CDK inhibitor
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My hair started thinning on Ibrance and is still continuing to do so at the same rate two months later, to the point where I am considering a wig, which depresses me. I am beginning to believe the cause is fulvestrant (now a generic) I take, even though I never had hair problem in the many years I was on the original Faslodex.
Many of the cancer and drug sites on the web cite hair loss/thinning in the possible SEs of Faslodex/fulvestrant. I can't fathom what is going on, but I used to have a head of thick, glossy hair.
Tina
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Tina2 - I noticed you are getting generic Faslodex. Have you seen a reduction in the price of the injections? On the thinning hair issue, have you thought about trying Nioxin? It does have parabens in some of the steps but my oncologist okayed it for me to use after I finished chemo last December. It was given to me by a friend to try to help my hair come in well after chemo and it did. I stopped using it after my hair came back and I emptied the bottles. I did get a full head of hair back and so far (knock on wood), I have not had any problems with thinning hair.
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My hair thinned on Ibrance but grew back when I stopped it after a year. Didn't notice much of a change in price on generic fulvestrant, but then insurance covers it.
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