Hormonal Treatment for Stage IV
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3 rings,
wanted to answer your question, too. I am afraid, there are not many people around getting an AI and Faslodex at the same time, so you can´t really expect to be able to compare side effects. The irritation at the injection site will definitely be due to Faslodex but the rest can just be due to the fact that now with receptors beeing blocked by Faslodex even less estrogen reaches the places in your body where it is needed. Hopefully, your body will find a new balance and you will feel better. And of course, hopefully it will keep the tumor cells at bay!
Love Susaloh
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Susa,
Thank you for such a wonderful explanation. [Gosh I love this site.] No vacation for me this year, so I will enjoy knowing that you are on a boat, sailing, living, enjoying the outdoor air for the next month. When you return, please check in and tell us a bit about your adventures.
Enjoy!
*susan*
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Wow, susaloh, a 4-week vacation!!! That will be so good for you. Enjoy it!!
Thanks for explaining about the estrogen levels. Maybe I'll ask my endocrinologist to check it if my onc can't be bothered. I suppose oncs think it's usually cancer that becomes resistant and not the body that starts producing more estrogen all of a sudden.
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Susaloh,
Have a wonderful 4-week vacation.
Terri
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Hi Sandilee
I found out I have bone mets and am now Stage IV, too. They gave me morphine for the bone pain. It is helping.
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Hi Heidihill,
I am indeed going to get a Zometa infusion next week. I went off of the ibandronate because with the bone mets, I could not continue to take the clinical research drug per my doctor.
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Anyone have trouble with being switched to generic brand of femara? I started the generic brand 6 days ago and I have several hot flashes a day now. I had been on femara for a year and did not suffer this much.
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Anne,
My onc mentioned last appointment that when my prescription is due to renew, he'll switch me to the generic. I'm sorry to hear you are having hot flashes now. I've heard that sometimes the generics have different effects and depending on where they're produced, and the fillers they use, they can cause reactions - on many different generic drugs. I'd ask my onc about it. I hope this is only temporary for you. I'm sure it is very frustrating. I wondered the same thing when my onc said he would switch me. Looks like we were diagnosed, and joined the board about the same time! I've been on Femara for 2-1/2 years now.
Let us know what happens. And, good luck!
Lane
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Wow Lane thats a good run on femara. I could still get femara if I wanted to pay the difference. Its about $400.00 for 1 month. I spoke to insurance co and filled an appeal but they say it will take a month to process. I was not happy but what can I do? They are little bright pink pills. It makes me sick just looking at them. I noticed with the femara I would get hot flashes at 7pm every night. Now I am getting them all the time. So bad my face turns bright red and then the sweat comes so bad I have to change my shirt. Fingers crossed that it means its working extra hard right? Lane I am glad you posted. good luck to you too!
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Anne,
I hope you can switch back if this continues. I'll try to remember to ask my doctor if any of his patients have complained about this after switching. I see him in about 10 days.
Lane
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Anne,
Oh yuck! I will be starting the generic aromasin in about 2 weeks when my current supply runs out. Gosh I hope it doesn't introduce new and exciting side effects! If your insurance company denies the request, I wonder if the RX company would consider giving you the drug through a compassionate program? Hot pink pills for breast cancer should be against the law!
*susan*
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Today was Faslodex No 15. Though I was the first patient to complain about receiving Faslodex [bare cheeks exposed] in the public infusion room with just a flimsy curtain protecting my privacy, evidently, I was not the last. The private room that I have been allowed to use for the past 14 months has been reconfigured specifically for butt injections. The bed is gone, and now there are two infusion chairs and a bench.
So for the first time since Faslodex The First, I took them standing up as recommended by the manufacturer. Now that I know and trust Nurse Linda, it was okay and didn't give me any flashbacks to my assault. Still waiting for the blood tests to come back, and will be interested in where those blood markers chose to be today.
*susan*
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Good luck, Susan!
Lane
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Susan....how did your markers read today? I don't get the faslodex but I do get the lupron in the butt. I feel your pain for the shot. I ask for a hot pack that they crack and it heats up and I place it on the shot area and it is great for the car ride home. Its awesome.
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So the double dose is pushing those markers even lower! Down 15% this month from last, my first double dose month.
The butt pain I have is, strangely, not at the injection site at all, but where the Faslodex "settles." These days I have plenty of "settling" space. :-)
*susan*
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Terrific news, Susan. The "pain in the butt" works!!!
Lane
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Susan, you are my current role model! Please see my note of thanks to you and the others who responded to my plea for advice in my first post on this site a few days ago. Re: your "flimsy curtain" tale, I noticed that my next Faslodex treatment is scheduled to be in the "chemo room," which I think is a large room filled with recliners. My first treatment yesterday was in my oncologist's private office down the hall. I remember from my initial surgeries that one is forced to surrenders one's modesty immediately, but I am not ready to moon an entire roomful of strangers!
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Tina,
Most infusion centers also have private rooms tucked away. Generally, they are reserved for the sickest patients at my center. But, I refused to have additional injections in the general room and insisted on a private room for my injections. I know. I was *that* patient, but this disease has taken so much of my dignity. I am not quite ready to give it all away just yet. [Just thinking how times I have had to describe my bowel movements in the last month, for example. I wouldn't discuss this with my mother for goodness sakes!]
At the very least, your oncology nurse should be willing to discuss the options with you.
*susan*
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Our nurses always meet patients in the infusion room for shots but take them to an exam room to inject.
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I recently had my femara swirched tothe generic and have noticed more hot flashes, or more specifically sweats that come out of no where, changing clothes etc. It was like that when I first started with Lupron and femara... hoping it will get better. I agree that pills for breast cancer should NOT be pink...who thought of that? someone was asleep on the job.
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My onco refuses to switch me to the generic because of subtle difference in the formulation of the generics. Femara is work well for me and I do have hot flashes and night&day sweats that have me changing clothes or at least heading for the coldest spot I can find. I react so much to the slightest change that he says it is not worth the risk of changing to the generic when the original is working so well for me. My markers have come down for almost 6,000 last August to 32 just 2 weeks ago!
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Oooops hit submit too soon. My onco is helping me search for a program that will allow me to stay on the brand name and still afford to pay my living expenses. I will let you all know if we find one so that you can check it out too.
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I started on the generic femara when I was switched about a month ago from aromasin. I had to try a couple of different mfr for the aromasin. The generics made me break out in HUGE almost boil like pimples. My pharmasist was great and order from different co's till we found one that worked. Now on femara and am not sure if its the generic or just the femara. I feel a bit nausious in the first half of the day and get flashes off and on throughout. Good part is I've lost 8lbs in the past month. YEA!!! I find if I stick to smoothies for breakfast and lunch it takes the nausea away and I feel pretty good. I eat vegies for lunch sometimes but then have a regular dinner.
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Susan great news on the tumor markers. You too AmyJo. My marker CA 27/29 has not moved in over a year. Still in the normal range. I will be super pissed if due to the new pill they move in the wrong direction. I get my lupron shot in the chemo room. Its just one cheek so Im not that exposed. I have found too that with the generic (mutant) fermara that my breasts are very tender. Plus stabbing pains where my ovaries are and lots of hot flashes. Gee I can hardly wait for the pimples to come. I guess I have next week to look forward to that, middle school all over again! Good times : ( . Why do they have to make it so hard on us?
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I think all of those extra SE from the generics is why my onco will not let me switch to a generic of Femara. I just have the joint aches in my hands and feet and the hot flashes.
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Amyjo my onc. wrote me a script for the femara but its the insurance co thats the problem. I would have to pay the difference between the cost ot femara vs. generic. That amount is $400.00 per month. Nice huh! Love how one month its $30.00 and the next its $400.00 for the same drug. Its disturbing on so many levels.
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Hi I am new to stage IV cancer, diagnosed last year. I have met in my left lung. I am on femara. Lots of joint pain hot flushes, sweating but everything was going well until my last pet. Pet showed a mass of 5.9 but my blood markers had come down to normal. The original nodule was still not there. Now I have had a bronch but too much scarring to get to the mass. I have to have a needle biop through my back soon because my onc doesn't know what it is. I had pneumonia about 5 to 6 weeks ago so maybe infection except no other signs of it. I am worried about what they will find, it was very difficult getting the original cancer diagnosed too. Anyone ever had anything like this before?
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Hi Rochelles and welcome to BCO and the club that no-one signs up for. I can't help you with your question, but I'm sure someone will be along soon who can. If you don't get enough feed back, start your own thread with your question and to do that you go to the Forum Index at the top of the page and click, scroll down until you get to the Stage IV Forum and click, then at the top right of the page you wil see Start a New Topic just click and type away. Good luck!!!
Love n hugs. Chrissy
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Hi Rochelles. I am sorry for the stage IV dx and the scary new issue in the lung. It is strange that the tumor markers came back to normal and now you have this situation. I have not had this happen but the needle biop should help with the dx. Hugs to you Rochelle and keep up posted.
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Last week I was diagosesd with metastatic BC, that spread to my lymph nodes above my colar bone. I had Estrogen and progestrone postive tumors in my right breast that were removed last year June. I had 27 lymph nodes possitive removed. Now it has spread. I'm taking amimidex to hopefully slow it down. I want to hear from anyone who has has a similar situation.
I scared of course, I still have to raise my daughter ho is 15yrs old. I'm a single mother. I'm not ready to go yet.
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