Faslodex Girls Thread
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Hi Melanie
So sorry to hear you got ONJ! That is the pits, hope it was caught quickly and the course of antibiotics will be over soon and put an end to it.
In answer to your question regarding how many are on Fas alone. I started Fas about 6 months before Ibrance came out and remember there were many people who had good results (years of NED) on Fas alone. After Ibrance and the other CDK inhibitors came out, most seem to be taking one of those in addition to Fas. It will be interesting to see how many are still on Fas alone.
I suggest you ask your MO if they plan to switch you to a Zometa infusion to replace the Xgeva. Both are bone strengtheners and with bone mets I think that is an important part of tx.
It may be that both Ibrance and a switch to Zometa will be on the menu once the ONJ is taken care of.
Congrats on stable and hope MDAnderson proves to be a good change for you.
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Melmcbee-I have been on Faslodex only since November. Scan in March to determine if it's working.
Jobur-I receive my injections in the hips with no problems.
Best, MJH
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Melanie,
I have been on Fasodex alone since the summer of 2011, with no concurrent cancer-related treatment except the fairly recent addition of Prolia twice annually. My lung metastases were knocked into submission after about two years, gradually and steadily diminishing in size and activity. What shows on annual scans are the remnants of lung nodules and shadowy areas, but nothing that is metabollically active. I have no symptoms of mets elsewhere. My doctor wants me to stay on Faslodex until otherwise indicated, and of course I will.
Make no mistake, I appreciate my great good luck and my oncologist's foresight and intelligence in putting me on Faslodex as a first-line treatment when I was diagnosed with mets. It is such an easy treatment compared to others.
Jobur,
I have a ton of scar tissue "back there," as you might imagine. My longtime nurse has encountered it and ended up changing needles several times over the years. She has complained that giving the injection hurts her hand. (!) However, she persistently works her way around, feeling for new sites within the dorsogluteal area. Recently she and another nurse with lots of experience in IM injections have been administering the shots further up and to the left, closer to my hip. This has resulted in less pain for me and perhaps for them.
Hope this input helps. Bottoms up!
Tina
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MJH- Thanks for responding to my question. I'm still anxious about trying the ventrogluteal area, but it helps to know you have had no problems with that site. On another note, I remember having increased pain in the months after starting Fas. I was sure it must not be working, but my next PET showed decreased activity, and 6 months later showed NED. I hope you find this encouraging and your March scans show improvement.
Tina- I was hoping you would chime in on this, thank you! My nurse has commented about the injections being painful for her hands too. I have bad arthritis in my thumb joints, so I can relate. Wow, 7 years on Fas! I'll bet your behind is a study in scar tissue!! I'll pass this info on to my nurse next week and see if she can find a different spot for the shot. BTW, I saw you mention your age on another thread and I was quite surprised. I pictured you being 50ish.
Best wishes to all!
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Jobur,
I'm very young for my age!
Tina
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I haven't experienced the pain on the groin area. When I had my first two rounds of Faslodex a year ago (with a good nurse who warmed the shots and administered them very slowly, both of which are critical), I had a sore fanny for two days. Then someone on the site recommended taking Claritin (or the generic loratadin) 2 days before, day of shots, and 2 days after. Pain was dramatically reduced for me. Lots of us have gone that route with success. I did call the specialty pharmacy to confirm that it was okay to take Claritin with Ibrance, and it was. Now I try to walk it off (rapid walk for a few minutes as soon as I leave the dr's office), and I typically have almost no pain from the shots.
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Jobur-I do feel encouraged by the news that you had a similar experience with pain at the beginning of Falsodex. Thanks for sharing that! Still waiting to find out efficacy..... like watching paint dry.
Love to each. MJH
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I've been on faslodex for I think almost three years now and it has kept me stable for the whole time - I do have groin pain on occasion but have come to realize it is really tendon pain and at various times it can travel all over my body. Three weeks ago when I went for my shots my nurse had trouble getting one them in - strange - never happened before. I am seeing onc in a couple of weeks will check and see if anyone else having the same problem.
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Hi ladies. Ibrance and letrozol failed so I've moved faslodex by itself. First shot was on Friday. Butt still hurts. The injection was definitely not slow, so I will ask to slow it down next time. Reading and catching up.
>Z<
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Welcome to the Fanny Pack, Zarovka. Your butt will hurt and perhaps itch at the injection site. Your joints may ache. You may get weird flushes and hot flashes. That said, Faslodex is an easy treatment compared to many.
Get your nurse to make sure the syringe is at room temp and to slow down the injection. Ask her to use a numbing spray on your skin. (They have it around for infusions.) Relax each leg as the shot is administered. I have found leaning over with my forearms on a counter is preferable to leaning over an exam table.
I hope Faslodex does the trick for you. Bottoms up!
Tina
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Very slowly injected and well-warmed first. Take the weight off of the side being injected, and turn the foot in/cross the foot of the injected side behind the heel of the foot supporting your weigh. Switch and repeat!! Find a good nurse and demand her for your shots every month. Suck up to her shamelessly. I have a great relationship with my injection nurse, and she comes in smiling broadly, telling me how nice and warm the shots are!!
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208Sandy - Glad to see you are still here too, 3 years of stable is great!! My nurse had problems getting my shots in last time too, as I described in too great of detail above. Long time Fas gals are telling me this is likely due to scar tissue and I probably need to change injection sites. I'll be talking to my mo and nurse when I go for next set on Tuesday.
Z - Welcome! Hope this is a good tx for you. IMO, it's a good thing if you feel like the muscle is sore for a few days, shows the shot was administered correctly. Injections should take a minute or more. Try to take at least a short walk afterward. It makes a difference. I'm a wuss and I can honestly say shots have gotten easier with time.
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Hi All,
My wife just started with Faslodex + Verzenio. She got her first Faslodex shot on the 18th of this month and started Verzenio a couple of days ago. She was on Ibrance + Letrozole a year back but progressed on it before moving on to chemo. After she progressed on chemo too, this is the latest treatment she is on.
From today morning she has started getting infrequent vaginal spotting. The weekend on-duty Oncologist said to keep an eye on it for now but also mentioned this can happen from Faslodex.
Has anyone here experienced something similar? My wife (42yo) had early menopause about a couple of years back and we are little shaken to see vaginal spotting / bleeding after all these years.
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I hope that all will be well, Letmywife. I have not experienced that SE.
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Encouraging to see the long runs people are experiencing with Falsodex.
Z, welcome. I hope you get years with this.
Best, MJH
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Thanks for the welcome all.
LMWL - I am reviewing the Drug Notes sheet I received. "This medicine may increase your risk of bleeding, including vaginal bleeding." I never know what to do with that information. OK, so I am bleeding what do I DO? It does note that unusual bleeding should be discussed with your doctor, so maybe that is the answer. However, it doesn't sound to me like it is serious enough to stop a treatment that may work for your wife and I don't believe it's worthing taking yet another drug to stop it ... I am guessing you will find that it just another gift from the gift that keeps giving.
>Z<
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Z -
Well I like the way you put it - "it is just another gift from the gift that keeps giving". We are planning to follow up with her regular MO on Monday. The on-duty doctor did not seem too concerned right now unless we see heavy bleeding or clots. Let's see what we find out tomorrow.
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Letmywife My oncology nurse told me vaginal bleeding was possible when starting Fasldoex, and I did have some very minimal spotting when I started. Good to check with your Dr., but I don't think you need worry too much as long as it is minor.
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Thanks Jobur for sharing
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Dear Sadiesservant,
I have never had pain in the groin area from Faslodex. I have had hip pain, but that's no surprise since I have mets in both hip bones. I would maybe call your onc (or the nurse navigator) and talk through it with them. I've called my team many times for things that turned out to be unrelated to my dx, but that’s what they are there for. I hope it is unrelated and you get to the bottom of it.
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Melmcbee,
Yes, I am currently on only Faslodex. I’m waiting to find out whether my onc thinks we should add Verzenio. Will know more next week at my upcoming appt.
Laurie
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Thank Laurie. I feel better
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ok...I am confused. I got my first Faslodex two months ago. Somebody screwed up and didn’t schedule the two week loading dose, so after my second round ( A month after my first one ) my doctors office scheduled to loading dose is two weeks after my second shot. So this Friday has been two weeks since that shot and they’ve scheduled me for two more. How many loading doses am I supposed to get exactly? And should they have waited two more weeks after this third dose
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Hi Gracie,
I’m a bit confused by that as well so you are not alone. You should have received, I think, two loading doses. I had shots on day 0, then day 14 and again on day 28. At that point I go to every 28 days.
I had an issue with my pharmacy screwing up my order for the second set of shots (day 14) and the pharmacist indicated that it was okay to delay by 2-3 days. Thankfully I was aware of the need for loading and said, uh no, we can’t delay as my serum levels are not at optimal levels yet. I made them move heaven and earth to get me that drug on time! I don’t think it will happen again.....
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Gracie - You are supposed to get a 500mg does on days 1, 15 and 29 and then every 30 days after that. Honestly I would call Astra Zenica and ask them what to do in case of a screw up. (follow link in previous sentence.) Not sure what your Dr.'s office is doing makes sense.
>Z<
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ok I got one at day 0, then day 28 then day 42 and this Friday will make day 56. So day zero, 28 days later then 14 days later and this will be another 14 days. So they are acting as if the first one never happened
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Hi All,
So.... anybody else suffering from irritability? I note that this is a known side effect but wonder if it will improve or if it is worse due to the fact that I am still in the dose loading stage.
I noticed that I have been very cranky lately but tonight something stupid made me fly off the handle. At that point the penny dropped for me. This is a repeat of what it was like on Femara with my original diagnosis. I felt like I had permanent PMS with a dark cloud continuously hanging over my head. I was better on Anastrozole but, interestingly I failed on that as Stage IV.
I have to admit this is making me panic. I’m on my fourth treatment in a year since diagnosis. Nothing has worked so I’m holding out a lot of hope for this drug. But if it makes my a raging idiot? How do I fix this? I already eat well, get lots of exercise, and can only manage so much sleep while working full time. Quite frankly, I don’t think yoga is going to do the trick
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It makes me ANGRY that we can't count on the oncs to order proper loading doses! Mine forgot, too, and then tried to say that I could "do it or not...." and that it "really didn't matter". BULL!! We really have to read and be our own advocates! I changed oncs, by the way, and the first one was supposed to be a star. I think that she was just too busy to pay attention to me. She also neglected to check my blood levels during my first month on Ibrance, which is a scary thing. I was lucky that my levels were okay. Sadie, I'm sounding a little irritable, too!!
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Frankly, if I did not know the loading dose and schedule the appointments myself, it wouldn't be happening. In fact they wont schedule the third dose until after I get my second dose on Friday and it's totally up to me to make the third dose happen. Never forget that no one cares about you like you. And never stopping caring about yourself.
Sadie - there may be chill pills of some kind or anti-depressants that work for you. But do consider that you have rogue cells that are trying to take over your vital organs. That sufficient to make anyone irritable. Add to that the fact that our doctors leave it to us to manage our care even though we have no training and we have to figure it out ourselves and, in your case, you have a job that takes your time. That's pretty irritating. Wow, I am getting pretty irritated myself.
My point is that maybe some TLC is in order ... massage, time off ... some deliberate action to take exceptional care of yourself. The drugs are likely a piece of it, but the stress of our situation has to be recognized and deliberately managed.
>Z<
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Thanks Z. Today I actually felt like myself so, hopefully, the worst of the mood swings will be in the first few days after the injection. I think that will be manageable.
The irony is, I just had a conversation with my GP about sleep aids and he was recommending one that also acts to elevate the mood. He says they commonly prescribe it for patients like myself facing a terminal illness as depression can be a problem. I emphatically stated that I am NOT depressed. Now I can go back to him and say... about those mood enhancers... not depressed, just really angry! 😡 LOL.
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