Faslodex Girls Thread
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Hi ladies! I just started Faslodex last Thursday and it wasn't as bad as I thought! I was more tired than usual for the next 2 days. I had progression, 4 new tumors on my bones but know it could be much worse. I am happy to have this thread and website to turn to for experience, strength and hope! Thank you all!
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Welcome to the Fanny Pack, chefmiche! I hope Faslodex treats you well for many, many years.
Tina
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Well didnt think I would be back on bco after 5yrs but since cancers sneaky Im back. Just had my 2nd treatment of faslodex today. Todays burnt like you know what going in. Only SE ive had so far is mediciney smelling urine. Brought back memories of adriamycin/cytoxan. My cancer is in the lymph nodes of the chest. Evidently its been hiding there. No chemo since it didnt kill it last time. Also have stage 3 non small lung cancer but thats nothing to do with the breast cancer. Nice to meet all of you!
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welcome to our group. I am having good results so far, the pain certainly worth the gain! I hope the same for you!
Wilsie
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Welcome, msdebic2. You'll find good information and warm support here.
Bottoms up!
Tina
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Holy Mother of God. Forget what I said about no side effects. Last nite my rear end killed me. Had charley horses all night and today from my waist down feels like a mack truck hit me. Thank God for Norco. Any tips that help prevent this ladies?
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I have noticed that sometimes it's worse than others. It can be more than a week, and my butt feels like I sat on an ice pick. Usually goes away after an hour or so.
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great. Its rough when anything affects my lower back/butt. I have spinal.stenosis. oh well at least after the next one it will only be once a month.
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Hi! I have MUCH less of an appetite on Faslodex. Lost 15 lbs. I smell mushrooms for a couple of weeks after the faslodex shot which does not help with appetite! My tumor markers fell 500 points in the last three months on femara/faslodex so there isn't much that I wouldn't put up with!
My nurse is a master at administering the shot.....warmed up, slow and higher on the hip and she gives me disposble heating packs for the way home. LOVE her.
Good luck ladies. One day, one moment at a time!
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Had my 4th Faslodex treatment on Monday (4 weeks after the last) and what a difference! Very few side effects other than the pain in my butt from the shots and the standard pain in my spine.
Saw onco today, and he's concerned about the headaches, so I'm being sent for an MRI and he put in a request for the PET scan again. Hopefully my insurance company will approve it this time. Last time they denied it as experimental, we think because we didn't have the biopsy yet.
On my next Faslo treatment on Sept 15th they will start me on Xgeva (bone strengtheners). Anyone else on a Faslo/Xgeva cocktail that can give me a heads up on side effects?
Also got a script for a pneumonia vaccine and a shingles shot?
I did get the all clear to go to Disney though, so we can plan the trip. Will have treatment the day after we get back though, lol!
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It looks like I'm leaving you all. Progression, including now in the liver, means a switch. I'll be starting Xeloda soon.
Best of luck to the whole Fanny Pack.
Leah
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Leah, I'm so sorry to hear of your progression :-( I hope the Xeloda works perfectly for you, and stops those mets in their tracks! Best of luck to you! Birdlady
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Leah,
I hate to see you go. May Xeloda treat your kindly, with great results.
*susan*
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Leah, I'm so sorry. I hope Xeloda kicks cancer's butt and not yours.
terri-c, I've been taking Zometa along with Faslodex for more than a year. I had the bone aches for 24 hours after the first infusion, but otherwise no additional side-effects that I'm aware of. I'm going to the every three months dose pretty soon which might shed some light.
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I had my first "loading shot" today. So far, so good! And thanks to you ladies, I was very educated going in and asked the nurse to be sure to warm that syringe:) I am proud to be a new member of the Fanny Pack!
Rose.
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I had my 2nd loading injection on tuesday. Since they didnt explain it why do they call it loading?
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I didn't get loading doses. That said, i believe that the loading doses are used to "jump start" the drug; flooding your system to combat the cancer. Then you are on a maintenance-monthly dose. Back when I started, we only received 250mg, or one syringe of the stuff alternating cheek to cheek. I hope that the Faslodex works for you as well as it has worked for me.
*susan*
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As I recall, the loading dose was still 2 shots, but given every two weeks instead of every month- so 1000 mgs for the first month. I think I did that just the first month, and then went on the regular 500 mg dose per month after that. It's been over three years now, thankfully, so I may not be remembering perfectly. I guess they call it that because they're "loading us up" with the stuff.
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The short answer is that it takes a while for the blood levels to rise and stay up. They give an extra set of shots to get the blood levels of the drug up to effective levels as quickly as possible (within the first month).
The half-life is 40 days, so in the steady state they give it every 28 to keep the binding going at certain rate.
(all this is paraphrased from the fulvestrant "label" -- which BTW also says 1-2 minutes for each shot)
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"...which BTW also says 1-2 minutes for each shot)." Hah!
It is to laugh, at least in my case. It took years to get my nurse to slow down to about 30-35 seconds. And for this concession I am very grateful. She used to complain that giving the shots hurt her hand (!).
Has anyone here been able to convince their injection administrators to slow down to an entire minute or more?
Tina
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Mine take between 64-72 seconds. I count as a way of dealing with the discomfort. A trick I learned during "get ready to have a baby" classes.
*susan*
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Hi Suzy,My name is Sherry and I have been on Faslodex now for 44 months and my numbers are still holding strong. Side effects are manageable. I work out 5 days and week most of the time and believe that has also helped. Some days it is just walking on the treadmill for a few minutes but I do it. Keep believing, stay positive and let's kick some cancers butt.
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Hi Sherry! Welcome! So glad to hear you've been at this a long time -- gives the rest of us mucho hope that we can take this drug a long time.
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Hi Terri-c,
I'm a newbie for Faslodex. Will get my third shot this Wednesday. Previously, I was on Femara and Xgeva. Xgeva is given into either the arm or the abdomen. I get the Xgeva in the arm. The shot is nothing, a little pinch and it's over. In addition to Xgeva, I was told take a calcium supplement with D3 (600mg) twice a day. I have not had any side effects and hope you don't experience any side effects.
Have fun in Disneyland. It's always good to take a trip.
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Leah, sorry to see you leaving fanny pack. I first started Faslodex on the same date with you. I was pulled off after 3 shots and went for a second opinion to confirm to be stage IV, then restarted again in June. I had been on Xeloda twice before, during my TC infusion and radiation as additional oral chemo. The SE is very dose sensitive. I had severe reaction after first dose, could not even stand up straight. After Onc adjusted the dosage, I had no more problem. Hope Xoleda is effective for you.
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Joining the Fanny Pack gals.
I had my second 'loading' dose last Tues. and haven't been able to taste anything since Thurs. I get waves of nausea. I called my ono this morning and they are sending out anti-nausea meds to pharmacy. Has anyone else experienced this taste loss?
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Joysley
Sorry to hear about your loss of taste, I didn't have that, but I
Did have that taste in my mouth immediately following the shot.
I discovered this little trick that I can do now to prevent that .
Two life savers (mint) while I drive to the center, and one more on my way home.
It helps with the nausea as well.
I started faslodex 5/14 and I feel good.
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Tina2--The nurses at my clinic like to pair up to give the shots--one nurse per cheek. They do go slow(ish), but I guess the liquid is hard to push through the syringe. It doesn't make a difference to me at this point if they go any faster, or do one cheek at a time... I have the same 3-4 days of aches and pains anyway.
I also get Xgeva, and by the time the pharmacy has prepared that dose the Faslodex has been out of the fridge and warmed up.
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allyannea, I find the time taken for the injection makes a real difference.
Tina
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allyannea,
Welcome. I know that there are several folks on this thread who get the double-up injection, and I am so glad that I am not one of them! Feels aggressive and invasive to me, but, I am so glad that it works for you. Slow push is indeed helpful. I do regret that injecting this drug is so hard on the nurses. Last month I had a substitute nurse who must have been over 6 feet tall, and it was much easier for her than my normal nurse who is shorter like I am. Nurse Judy, my regular nurse, and I joke that she needs a step stool to get to the correct angle without hurting HER back.
Forty months is a lot of months. Love hearing these success stories!
*susan*
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