Faslodex Girls Thread
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I have just started on Faslodex. I've received the first 2 rounds and have had bone and muscle ache, along with some nausea. I'll get another injection in 2 weeks and then just once a month after that. I'm on Taxotere weekly, 3 weeks on and one week off. My tumor marker numbers had been going down steadily, but over the last 3 months have started going up again. I have mets to my bones and liver. I was on xgeva for about a year but went off when I needed some dental work done. Everything went fine, until the third dental procedure. I have osteonecrosis of the jaw, so we're also dealing with that. I feel like a beginner here. I was diagnosed 3 years ago and I have to say that for the most part, things have gone well. I started on Abraxane, then went to Adriamycin and now on Taxotere. Some one on another thread threw out the phrase "cancer whack a mole" and that is certainly how it feels sometimes. One thing works for a while and then something else pops up and we just keep pounding away.
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Hi All,
I have been here for awhile since 2009 and been thru tamoxifen and arimidex with Xgeva. I was told yesterday that there is most likely progression in my abdomen area so its on to new meds, Faslodex and maybe ibrance if its approved by medicare insurance. Is it a hard meds to get thru or somewhat doable. Just wondering so I'm not shocked when I go for my 1st treatment. Thanks all.
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I didn't have any problem. It took a week or 10 days on the Ibrance but then all was fine.
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BJ, you may want to try taking a Claritin (or the generic Loratadin) 2 days before the Faslodex shot, day of, and for 2 days after. Many of us have found it to work wonders in reducing or eliminating associated pain issues.
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I have been on Faslodex since December 2017. I experience a lot of low back pain and joint pain. I have some deterioration of discs in my lower back anyway so that has always been a "sore" spot. I also feel a lot of "pressure" in my lower abdomen and pelvic region. I read on some other post that this feeling is like having to "poop" but not needing to. A good description.
Stuff hurts all over. I just had my latest shot of Fas and asked the onc about the pain in my chest area where the mastectomy was. He "felt me up" LOL and didn't find anything that he could say was mets. My tumor markers have risen on Fas. He seems to think it's not that bad as the rising is in small increments such as 60 points. That is, from 611 to 674 this last check.
I understand that Fas can take five to six months to begin to work so he wants to wait for one more month and check my blood work. If the CA 27 29 still continues to rise we will do a scan.
I guess my question has to do with what kind of pain anyone is experiencing, especially the low pelvic pain and feeling of pressure. Also, sometimes when I eat my stomach hurts. I have read that Fas also causes gastrointestinal issues.
Any input would be greatly appreciated.
Chats
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Chatsworthgirl I am sorry that you are having issues on Faslodex. I have had it for two months now and have been able to tolerate it. It did seem that the week before the shot I did get some aches but other than that I have been fine. Have you tried taking ibuprofen (of course you have to make sure your platelets are ok; but it may help with the aches.
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Poof. Just like that most of the pain is gone. The whole lower pelvic, stomach pain, most of the soreness around double mast sites.
I have scoured the net regarding Fas side effects. Gastrointestinal is one that I apparently get. (Thanks so much Fas).
Also I was a bit freaked out because my AST was slightly higher than normal. The onc said there were five liver enzyme tests and only one was slightly abnormal and he didn't think this was anything. I also found that Fas can affect liver enzymes. So who knows. I was taking aspirin and Aleve for all my aches and pains and I have read that these can affect liver numbers. My Alk Phos was above where it was last time. Still within normal range but makes me nervous since the CA 27 29 had risen.
This is making me crazier. (Was probably always a bit crazy LOL).
I find that days leading up to finding out what the markers are up to put me in a very bad place. Then after the Fas shots I am irritable and also not in the best mind space. I need to get a handle on this because all it does is make me very unhappy. I need to meditate or do yoga more or take drugs LOL!
Oh wait, I am already taking drugs. Just not the fun kind.
Chats
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chats my doctor doesn't seem to do the ca 27 29 test. I have mentioned it and according to him the numbers are not always accurate. I asked him how will they know what my cancer is doing and he said by my symptoms and scans. I don't know how to feel about that but I have heard others on this forum say the same thing. I want to revisit this with him when I go back on the 24th.
I have also seen women whose numbers went up for a bit and then became stable. Just try to think positive. Maybe we will be ned sisters soon.
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Chats,
My oncologist seems to depend on my reports of how I feel and annual scans rather than my monthly blood tests. The 25-27 marker has always be been in the normal range. Some other tests like LDH and EGFR are always many points above the top level of the normal range, but he says they would have to be twice the normal range to be of concern. It's difficult me for to go along with this, but I do, mainly because I take NSAIDs for my arthritis and they can affect some blood tests. And I essentially trust my doctor.
I sometimes wonder why he does blood tests at all; it feels sort of pro forma. I'm not sure he even looks at the results. So I'll continue to keep an eye on the results and, if I see something that appears alarming, ask him about it.
In the meantime, I try to put it all aside and live life to my best ability. Socializing with friends, volunteer work, playing with my nieces and nephews, reading, theatre, and enjoying the wealth of museums and cultural activities in DC and Baltimore fill my days. However, cancer is always at the edge of my consciousness, always.
Now I'm going to watch 60 Minutes and get worried about something else!
Tina
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Holmes and Tina, thanks so much. I am my own worst enemy sometimes. I try not to think about it but it rears it's ugly head every three and four weeks. Every three I get the Xgeva with a blood draw for markers. Then I have to wait about five days to get the results. Then seven days after the Xgeva I get the Fas. I sweat it out waiting for the test results and although I am feeling fine and working at my job three days a week and doing all kinds of stuff in the garden, cooking, banking, grocery shopping, you name it, I still get anxiety and then when I get the results and they are not the thrilling downward trend it just knocks the wind out of me and I get a bit depressed. I work my way out again but I hate the cycle.
I did a whole lot of research on the LD marker. Seems like it's in everything so who knows what causes the flux. I do know that I had just done a lot of heavy gardening and was terribly sore in every joint and muscle and had bad low back pain when they took the blood sample. From what I have read wear and tear on the muscles is one reason for a jump.
I have intermittent pain in all kinds of places. Jumps around and I probably forget what I did to bring it on. The onc said that the bone mets don't jump around. They just grow if they don't get murdered by the drugs. I have murder on my mind. LOL.
I am actually feeling really good and most of my joint and muscle pain is gone. But, as I am cra cra, I was out in the garden today. Not doing anything too big though. Trying not to overdo which is my default mode.
Onc says my markers indicate a leveling off. I sure hope so since they have continued to rise in small increments from the start of learning I had bone mets. We are waiting for one more cycle and if they don't show a downward trend he wants to add something else. I am going to insist on a scan. The last one was February 2017. I have read many posts that indicate markers can rise even when the mets or tumors are dying or have disappeared. Cell death appears to be one explanation.
Prayers up for all.
Chats
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Hello, I will be having my first faslodex injection. was wondering if anyone does this on there own? heard some scary things, like needle hitting a vein or nerve and pain for days. any information would be appreciated.
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Hope, many of us have found it very helpful to take Claritin (or the generic loratadine) 2 days before, day of, and 2 days after the Faslodex shots. It seems to work very well toward alleviating any discomfort for me. I was sore for a couple of days after my first shot, but essentially not much at all once I started this Claritin regimen. It has made a remarkable difference for me.
Also, have the nurse inject VERY slowly and have her warm the liquid before the shot. Lean over an examining table or whatever and take your weight off the leg on the shot side buttock. Cross the shot-side foot behind the weight bearing foot and let that foot rest lightly behind the weight-bearing foot. Reverse the process for the other side. Taking the weight off the shot leg helps to relax the muscle.
Good luck! It's really not bad!
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And I do it every time on my own. I do ask for the same nurse, who knows how to do these shots.
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chatsworthgirl we are all our own worst enemy. It seems that every pain I get makes me think that the cancer has spread. This will probably be a continuous fear that we all go through.
Joyner I wonder why Benadryl helps. I will definitely try it when I get my shot next Tuesday.
Tina what part of Maryland do you live in? I live in Charlestown WV.
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Holmes, I have no idea why it works. I learned about it on this site right after my first set of Fas shots 15 mo ago, and it has helped me significantly. My onc nurse said that they recommend that patients take it before (I think) Neulasta, but I may have the wrong drug for which they recommend it. In any case, she wasn't aware of its use with Faslodex but was aware for other applications.
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Holmes,
I live near Washington, DC.
Tina
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tina i usually go to dc about three times a year. I work in mclean. If you ever get in the mood to gamble in charlestown let me know and maybe we can meet. It would be nice to talk to someone that i dont have to pretend that the world is great with
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Holmes,
I'd like to meet sometime---maybe next time you're in DC or closer-in Virginia, like Arlington?
Tina
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Hey, everyone,
I'm new here - newly diagnosed with bone mets, and yesterday the onc said he'd be starting me on faslodex and ibrance pending biopsy results. Thanks for the claritin advice - I HATE needles! What does it mean to do it on your own?
thanks!
Kathy0 -
Hi, Peculiargirl! I just saw you on the Ibrance site, too. Believe it or not, you're getting off really easy on cost. For the Ibrance, we pay about $3000 co-pay for the January shot and $570 or so monthly thereafter through the end of the year. No charge to us for the Faslodex so far.
I'm assuming that you've read the information about leaning over the exam table, relaxing the "shot" side, etc?
On your own just means going on your own rather than with someone else to sit with you. It's not a big deal after you get past the first one and realize it's very do-able. BE SURE that the nurse knows what she's doing and warms the shot material and administers VERY SLOWLY.
You'll be fine...piece of cake!
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It sounds like a date:)
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Thanks, JoynerL! Is Ibrance a shot as well? I thought I was getting it in pill form. Duh - on your own means just what it's supposed to mean - going on your own to get the shot. My brain is SO scrambled these days!! I did read and print off the hints about warming up the faslodex, leaning over the table and taking weight off the shot side leg, thanks. AND....my stepmother, who has been metastatic for 9 years, is on the same regimen - faslodex and ibrance. She had to pay thousands of dollars for the first couple of months for ibrance, too - until she reached her out-of-pocket max. So I DO see that I'm getting off easy on the cost.
Kathy
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No, Ibrance is a capsule, taken for 21 days followed by 7 days off. I've had almost no side effects of any kind. I'm a bit tired, but I'm also 72! Good luck with the Faslodex. You'll be fine!
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Hi Kathy. Ibrance is a pill. I had no issues with taking it... just fatigue but had to stop due to anemia. Faslodex has been treating me well. Just tell them to go slow!
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Joyner, I am 69 and I am glad to hear that you too are a bit tired. Would you say that you have some days where it is a bit more than a bit?
Happy weekend to everyone.
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Marianelizabeth, absolutely more tired some days than others. Frankly, I'm enormously grateful for these medications (Ibrance and Faslodex) and will accept this minimal side effect with gratitude.
Sadiesservant, I'm glad to see sweet Sadie's photo!
Peculiargirl, one other thing that helps me: I try to walk very briskly for a bit right after my shots, to exercise the muscle and move the medication around. I drive 75 miles to get them, so I'm typically back in the car soon after getting the shots. The walking seems to help.
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Just got my shots yesterday! Today I feel like I have the flu !!! Ugh!!!
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Me, again. Did you do the Claritin?? 2 days before, day of, and 2 days after?
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Yes, I think it helps a little. Also taking in tons of water
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Thanks Joyner. Thought it was about time I added an Avatar and a friend sent me that photo of Sadie. It’s my current favourite as it is so rare to get her to look at the camera. She invariably focuses on me, turning her butt to the camera! LOL.
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