Faslodex Girls Thread
Comments
-
I had shots last, and hardly felt anything. It's been6 month since I started, and usually I would say pain like an 8of 10. Almost made me wonder if I got the right thing...not complaining, mind you!
Wilsie
0 -
Brandall
Taking a dose of Benadryl might help your "hive" like it did mine. Now I don't seem to need it anymore, but it really helped for the first couple of years. (This month I passed my 3-year mark!). My onc recommended it.
0 -
Sandilee,
When do you take the Benedryl? Before shots or after? I have my shots on Monday next week, and would like to try it.
Thanks!
0 -
Hi Ladies,
I was just wondering if anyone here has tried femara, had progression, and is now doing faslodex and doing better? My cancer progressed while on femara so I am now back to chemo. If I show major regression in a few months I will go on the faslodex.
Thank you!
Brenda
0 -
Adnerb,
I was not on femera, but was taking aromasin when it failed me after 4 years, 11 months. That was the progression that landed me right here. The faslodex has worked! The AI's and faslodex work differently so many people have success with one after another has failed.
Hope this helps,
*susan*
0 -
my last 2 injections were given in my thighs, very slowly. I was amazed how little discomfort I was in after.
0 -
Tina2, Your new words for our battered and bruised bodies are really funny. Someone said metastatic breast cancer treatment is not for sissies. So true!
Brenda, I was on Femara for several years before the mets showed up in my abdomen.
So, to update. The little bumps across my diaphragm turns out to be ILC of the skin. I'm getting 25 radiation treatments. When I was on Afinitor/Aromasin, the little bumps really shrank, the tumor markers went down, and the mets in my abdomen progressed, but not by much. I think the 5 months on it slowed the mets down, but I'm so happy to be off of Afinitor because the SE were really bad.
I started Faslodex 2 weeks ago, Halaven this week and remain on Aromasin. Fatigue is my major side effect.
I had a lot of joint and muscle pain when I first started AI's. I could hardly walk into the bathroom in the am. My MO changed AI's and my internist put me on Celebrex and a couple months later started Cymbalta. That combo has really worked for me. Now if the meds and radiation can just control the mets, I would be very happy.
0 -
Thanks, Susan and Danishgirl. Hope whatever combo or cocktail you are on will help you cope better with your BC.
Brenda
0 -
Can anyone tell me if when they were put on faslodex they had aching all over and a general feeling of having a severe flu virus. I felt the same on femura and xelado. Worried about progression.
Thanks for any advice only had one round of injections so far.
0 -
Smiley, I had that with the Zometa the first few times I had it but not with the Faslodex.
I started this drug in Feb and the last few days I've had achiness in my pelvis and sometimes radiating down my legs. It's not overwhelming pain but I can't ignore it. I'm also more stiff than I was before. Has this happened to anyone else?
Leah
0 -
Smiley and Leah,
I take both Zometa infusion and Faslodex shots on the same day, so I can't tell which is causing the SE. I have been on them monthly since November 2013. The first few treatments were awful...pain, stiffness, nausea, fatique. Each treatment now seems to have less SE, but I still feel bad for a few days. I have my treatment tomorrow, and I'm hoping it won't be as bad as last month. Someone here mentioned taking Benedryl, but I never got an answer as to whether you take it before or after the treatment.
My numbers have been better while taking this combo, so for me, I will endure the discomfort. I will probably be having scans very soon, so I will report back.
In the meantime, I wish comfort and healing to all of my Fanny Pack sisters. This disease sucks...
0 -
I have bone and muscle pain from Faslodex, or at least I think it's the Faslodex! I started the Xgeva a month before the Faslodex and started the Lupron during the second (2 week) loading dose of Faslodex, and didn't have it on the third, but still had the aches and pains, so I'm pretty sure it's the Faslodex for me.
The Faslodex side effects generally seem to be more and more mild as I continue to get it, but I still feel muscle and bone pain, especially in my back and pelvis.
Hope that gives a little emotional relief, even if it doesn't help the pain any.
0 -
Also, my hospital give out 1 page sheets with new medications that list the handful of top side effects and bone and muscle pain are in the common ones for Faslodex (which I must have known at one time and then forgot about, but I just went back and checked the list), so sounds like it's likely the Faslodex and not progression that you're dealing with. I hope that's all there is to it for you!
0 -
Does it feel like an ache that one gets with the flu. I also two days ago did a lot of housework and driving and now on one spot alone I have pain on a spinal disc. I know I have mets to the spine but I have never had a direct spot with this much pain, not unbearable but different to aching. Could it be I have triggered the pain in my spine but it is not progression(wishful thinking) or is it more likely to be progression,mi have been of chemo for a month now?
Thanks ladies for all your advice, I always find this site more helpful than the medical community sometimes.
0 -
I guess I'm the newest member of the Fanny Pack. I start Faslodex tomorrow and am concerned about the side effects. I do not do well with most medications. Was only able to take Tamoxifen for 3 months until the side effects were so bad they had to stop the medication.
They shot me with Lupron a month ago to chemically castrate me, but luckily the side effects were minimal.
I read a lot of injection site pain and bruising....am happy to see there isn't much gastro side effects being reported here.
Oh, I'm Terri by the way. Been sorta spying on you guys since April when I got my Stage IV diagnosis.
0 -
So that one hive turned into like 3 or 4 hives around each injection site (about 6-8 total) and boy do they itch! I have another issue going on that I'm wondering if I can attribute to the faslodex. Immediately after my second (day 15) injections, I went to the bathroom (still at the doctor's office) and had a lot of vaginal bleeding. Now, a week later, I am still having a lot of vaginal bleeding with ever bowel movement. I had a hysterectomy over a year ago. I was originally thinking something had gone wrong with the hysterectomy (although strange it would be a year and 3 months later!) but then I looked up side effects of faslodex and unusual vaginal bleeding was on there...although in less than 1% of cases. Anyone here had this problem. Obviously I need to contact the doctor, I'm just unsure if I should be going to my oncologist first, my gynecology oncologist (hysterectomy doc), my regular oncologist, or my PCP....this is the problem with having too many doctors
0 -
After reading the last six messages or so, I am feeling very thankful that my side effects from Faslodex have been so minimal. Usually, I am the person who gets all the weird, less than 1%, side effects of any drug!
Brandall, my inclination is to start with your oncologist, and move onto to other specialists if needed. The one time I had unexpected bleeding, the doctors did note that they wish I had brought in a sample of the stained clothing so they could test it. Not sure if that is the case for you as well.
*susan*
0 -
Terri-c, welcome! If Lupron doesn't bother you too much, you might be fine with Faslodex. Each person's side-effects are their own. Faslodex has a different mechanism of action than tamoxifen.
brandall, the hives are definitely an allergic reaction. Get some hypdocortisone cream from the pharmacy (OTC). Should help. I had something like that the first few months. It faded away after a while. As for the vaginal bleeding, if 1/100 women get it, I guess someone is the one?
As for which doctor, at one point I had four doctors I was seeing regularly. Eventually I threw up my hands and asked which one of them is in charge. Onc said he is, so I go to him first and ask who to talk with. In your case I'd opt for the hysterectomy doc unless he or she is simply a surgeon. Vaginal bleeding seems to be in that wheel-house (I had a really good pun but don't want to offend).
0 -
Brandall, yes, the hives are an allergic reaction. I had them after each injection for a year or so, but now I don't. My solution was to slather on Caladryl Clear, which did the trick for me, but many people here take Benedryl.
If I had vaginal bleeding and suspected Faslodex, I'd go straight to the oncologist who prescribed it. I have found that other physicians (PCPs, surgeons) know zip about anti-hormonals.
Tina
0 -
good morning, I haven't commented in awhile, but I've been reading all of your comments. I'm with Susan, I feel blessed that I've had no side effects from faslodex and I've been getting these shots for 18 months. The only long term side effects I've had is weight gain and constipation. The constipation drives me nuts, so does the weight gain........but, I'll take it.
I've a subject I've wanted to discuss with the group for awhile so here goes:
I've been with my new clinic here in NH since Nov. I go in every month, blood is drawn and sent to the lab which is on the premises. I then meet with a nurse who takes all my vitals and weighs me. I then wait for either the Dr or his assistant. He asks me lots and lots of questions of which I answer no to everyone of them. We never talk about my markers, and when I asked about cat scans they said their philosophy, especially with my type of cancer,(estrogen driven) they don't think its necessary as long as the patient presents well. Which I always do. They feel that the accumulated radiation, or whatever, causes more damage than its worth. Now, I'm happy with all this. I know they check my markers, but we don't talk about it. And, I have to admit I feel really good. For me, no stress over marker numbers and no stress waiting for results of cat scans. What do you people think of this type of treatment? Also, this clinic is affiliated with Dana Farber so I don't consider them a slouchy, country type clinic. But their philosophy is almost the opposite of what I had in Cambridge, MA. Should I be concerned? Would you be concerned?
Thanks, Teresa
0 -
Tree,
Fascinating how different each place is, isn't it? I view my markers online, and as long as they hold steady, I don't ask about them. My routine is even simpler than yours. I arrive, they pull the standing blood order, take the blood, and when Nurse Judy is ready, send me back to the infusion room. There a tech takes my vital signs, which no longer includes weight, and then Nurse Judy gives me my shots. I stop by the fridge for my well-earned ginger ale, sitting in the waiting room to drink it and let my wave of nausea pass, and then I go home.
Every few months I have a doctor visit. Then the routine is vitals, PA, doctor, blood, injections, ginger ale in that order. My doctor and I have agreed that scans once a year is sufficient for now. Was at every 6 months, but now they are more concerned with the radiation since I haven't keeled over. We have a slight disagreement about how long to go between doctor visits. She would like every 3-4 months, and I like stretching it out to 4-5. She only lets this happen because I have promised to call her if I "feel" anything is off.
I guess my only thoughts for you are, you should decide what it is that you want from them, and then simply tell them directly what those things are. I mean if the doctor can ask you a ton of questions, you are entitled to ask a few right back at him.
not sure if this is helpful.... *susan*
0 -
it was verrry helpful, Susan. Happy to know I'm not the only one not getting cat scans every 3 to 4 months. Also, I'm sure, if I ask, that I could have my markers posted for me. Mostly they post blood analysis ie. white, red etc. I, also, have had to promise to call with any changes. I really didn't have to make that promise. I WILL call.
Thanks again,
Teresa
0 -
Tree, I have blood drawn, vitals taken, injections given and see my onc for five-ten minutes every month. Last year he stretched the time between scans from every three months to every six months. However, because of my hip surgery, it will be a year come August since I've had my usual PET-CT. If I didn't know that some women here do not have scans unless they are symptomatic, I would be more nervous than I am about this.
My doctor never talks about my markers. Apparently they have not been useful, at least so far. I like to think this is a good thing.
Tina
0 -
when I first moved here to the country part of NH I used say to my son,"well, I'm going to the clinic tomorrow to see how I'm doing." And his response always was, " I can tell you how you are doing . You are doing fine!" And, as always, he was right. He saw me two years ago, near death and has watched the progression from thereto here. Some people say its a miracle. I say it's the meds and a miracle I suppose. I don't know but here I am. Very healthy!
Thanks, Tina for your input. Loved your song by the way!
Love you!
Teresa
0 -
Thanks, Tree.
As the great Oscar Hammerstein once wrote for "Flower Drum Song," a 60s musical, "A hundred million miracles are happening every day. And those who say they don't agree, are those who do not hear or see."
Tina
0 -
beautiful quote, Tina, and so very true! Thanks for sharing it!
0 -
Tree, my onc is most concerned about my spine, specifically where I have/had the fracture, so he's usually wanting an MRI every six months. No radiation there, so no problem. The CT is a little less regular and more spaced out. I had one today (fun, fun) but it will be compared to the one I had last October- so eight months. I think if I weren't getting any scans until I had some kind of symptom, I'd be worried, as I know that some women have liver mets and never feel any different. I'd like to know so that I can get on a different treatment if it hops from my bones.
The frequency isn't as important to me as knowing that there is some kind of follow-up other than my own observations. I ran around with bone mets for at least two years without any symptoms to speak of, so I guess I don't completely trust my body to let me know what's going on. I think we all find what we're comfortable with, at this point.
0 -
birdlady222 - sorry I didn't see your question earlier. I hope your shots went better today.
My onc advised me to take the first dose of the Benedryl before the shots, and then every few hours, as needed through the day. I would usually take one pill when I arrived at the office and then another when I got home. They do make me sleepy so I didn't want to take too much until I was home and could take a nap.
Where I found them very helpful was at night to stop the itching. For some reason, I don't need to take it anymore. It's been three years, so I guess my body has adjusted. No more rash and very litte itch. But that was not the case for the first year. I really needed the Benedryl, and it was helpful.
0 -
Teresa, Your contact with the onc sounds pretty common. I find it really lacking in seeing each patient as an individual. The oncs would do a much better job of personalizing care (yuck there is that phrase again) if prior to seeing the doctor the patients were really evaluated by the oncology nurse and some some REAL concerns and questions could be talked about. I am fortunate to have access to my patient portal which provides up to date results on labs, tests etc. Any questions that I have can be sent directly to my oncologist and if sent to his email are usually answered the same day. That is really nice because any other issue around my care can be covered during the routine tx day.. My first onc, 8 years ago was very rushed and the whole appointment made me feel like a 9 number pt account number. When I moved tx to another oncologist the first thing that she said was."So Peg how are you doing with the hair issue. She saw me as a PERSON ......how great is that? Hang in there and make them see you and care about the real issues. We deserve it! Good luck Peg
0 -
Tree, it is always weird to see different schedules and wonder what's going on. I would guess it has to do with the different grades, total number of mets, how you're doing on the meds, etc.
For me, I see my onc monthly; I get blood drawn and vitals first, get the Faslodex, Lupron, and Xgeva after. She checks out my heat, lungs, etc, etc, and asks questions and talks about concerns. I just had my 3 month scans and so far every 3-4 months is the plan. But, I'm only 3 mo into Faslodex so there are questions about whether it's going to work and how well. And, in the year and a half prior to stage iv dx, I went from a clean PET to large mets in multiple unconnected spots (developed during the same year and a half I had chemo, radiation, and a year of tamoxifen that I was still on when I got my dx with mets--thankfully my first post-Faslodex scans were stable (whoo hoo!)). So, right now, with my history and the newness of Faslodex for me, seeing my onc monthly and frequent scans makes some sense. But we all have different backgrounds and different things our cancers have been doing, and that's hard to see in quick posts or subject lines.
So to answer your question, especially with the Dana Farbar connection, I wouldn't necessarily be concerned about your schedule or compare it too closely with others' schedules as long as it makes sense for how things have been going for you.
Terri-c, welcome! I hope Faslodex went well for you.
Brandall, how are you doing? Hope the doctor (whichever!) was able to help or at least reassure.
0
