I came here first because I thought Ibrance + Fulvestrant, which have worked miraculously on my stage 4 MBC, had suddenly stopped working after 18 months. After a week-end of panic due to results of PET scan, received a call from oncologist saying she thought the radiologist was wrong; it was nothing. The other thing I was looking up is that, after 18 months on Faslodex, for the first time I got big egg shaped lumps at the injection sites, hard and painful and haven't gone away. Did a lot of searching on line; maybe nurse messed up the administration?
I just recommended to someone who is newly diagnosed and finding Letrozole makes her fatigued and then depressed because fatigue prevents her from working. I am on Wellbutrin, which has been found to counteract fatigue from cancer meds. Works pretty well for me.
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TammyCross
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Welcome to the group although, as we always say, sorry you need to be here...
What a relief re: the scan! I've experienced similar where the radiologist was wrong and my onc picked it up, thank god! In my case the issue was that the radiologist had "seen" some new mets but my onc phoned them and asked them to take another, closer look and, lo and behold, they had been seen on prior scans, too! Always good to push back/question things...
Re: the Faslo injections, yes, early on, I would also get those lumps (walnuts, not eggs, though ). For some reason I don't anymore? I think they've changed the injection site to higher up and on the side...almost the muscle over my hip bone? I remember reading at one point that there are two different acceptable places to inject...Maybe ask about this?
I've heard that applying heat after the injection can help, even the heat in your car seat, if you have that...
Re: the fatigue on LET, I had that, too, my doc prescribed Adderall or similar, which was amazing in its ability to help me focus and be productive, too! But I didn't take them for long, just upped my caffeine intake and nap time...
Again, welcome..It sounds like you're doing well on your treatment *and* you've got a great doc, who's really looking out for you!
I usually have walnuts that go away in a few days. This is quite different.
My oncologist is usually unpleasant and unhelpful. I was about to leave her - then she did this! She was human and humane for the first time. She might have heard I was planning to switch, or maybe she felt for me this time.
I get angry with my onco sometimes but then I have to check myself and realize all day they are doing this and having to give some women bad news and they are only human also. I sent her a raving and rambling email the other day I was so angry about something with her and completely I forgot until she responded and apologized. I felt stupid afterwards. I was feeling pain so I took it out on her since I live alone.
I sometimes wonder if I get angry at her because she constantly reminds me,, with a smirk, that it is incurable, life expectancy is limited, and I just don't like the news. But I looked up her ratings and those of her two colleagues, and people note how kind they are and give them hope and comfort. She had three 1 ratings, on a scale of 1 to 5.
So -- I think you shouldn't feel guilty. I think the ones who aren't good at this need a little reminder now and then that there is a human on the other end of their communications, and what they do has a major impact on how their patients are coping with their disease. I wish you would give mine a kick -- but she never reads posts on the patient portals. Her nurse practitioners used to, and when I ranted sometimes one of them would print and take it to her, so she would have a better idea of who I am. Now the NP doesn't open messages either.
Yes, they are often giving bad news and it is hard, but it is a major part of their job and they should find the best way to do it.
For your suggestions on how to battle fatigue. I will discuss with my new oncologist that will be treating me on this clinical trial, if it would be possible to take either one.
That was smart of you to only take them for a short time and stop. Ritalin and Adderall in US are the two main drugs that many law students take so that they can stay up late, study and focus. A friend of mine went to CA to go to law school and within a month, she got a prescription for adderall. She said another class member told her to get it and what doctor. She then found that half the class were on that or ritalin. I watched a documentary about it in the US and I read that once one is on it for a while, it stops working and can have very bad withdrawals but at this point I am now on 4 10 mg. of percocets a day that thankfully still work and I have been on them for months but I know that I would be in for a wicked withdrawal if I was suddenly off them.
Yes, the heat does help. Use the car seats and then a heating pad. Some say don't massage the area, some say do massage. Try it and see if it helps. I've found heat the best.
I somehow haven't gotten around to trying that. Don't have heated seats. I have a car, unusual enough in Manhattan. - Sorry, I answered dosage to you when it was someone else who asked.
I did some research, nursing journals. Turned out the nurse last time did it in the wrong place, and did it incorrectly. I still have egg sized lumps after a month. It should actually be higher, like behind the hip, and they have to empty the syringe all the way before pulling it out. Had the injections today, good nurse who knew how to do it, and I have no problem -- no lumps, no pain and just a dot of blood on the band aid. (Last time was very bloody.) I also learned from someone here to put the syringe between my thighs while the nurse was getting ready and warmed it up. The nurse said it was much easier to give the injection because it was more liquid. -- I did use heating pad on the old lumps. Did no good. Today I don't need it.
I have been getting the injections from the day I was diagnosed as stage iv. I find them easiest part of it all but I have a big butt (even the nurse the first time said to me "finally, something I can work with"). It made me laugh bc I was nervous. Unlike some others, I do not need heating pads, or can't sit down. As soon as I get the shots, I am out of there and can sit down immediately and feel no pain.
My butt is a bit itchy for a day or two and for the first time I notice a lump in one of my butts that I massage but within three days it is gone. It is a thick medication and I guess after three years, it makes a lump but it does not stay around. She puts bandages on it (small) and I massage the lump a bit when home (look funny walking around in Brooklyn rubbing my butt and I feel the lump but by like day four, it is gone. I am not a doctor but I would just think after a while that getting injections in the same area monthly would cause some effect so I know I get them now also if that makes you feel any better. I know others that have the same lump that goes away also. I do not have the same person every time I get my injections. It usually is somebody different each time. If she does the right, I lean to my left side and vice versa. I just lean against the door and boom, it is done.
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