Faslodex Girls Thread
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Shetland I am so sorry. Sending prayers and hugs. I know you are in shock. Praying xeleda treats you right.
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So need some insight. I have been on a roller coaster since this whole thing started. I switched MO's because I felt the first one let my tx wait too long. Long Story. New MO.....I have been on Arimirdex since Feb. Started Radiation 6 days ago, RO said stop Horomone Therapy. I went to MO office today to see if he wants to see me since I am on break from Hormone, he said I should be taking it..**Shaking head*** and he wants to give Faslodex injection tomorrow....I am lucking and thanking stars, god, universe, thru this who ordeal no SE and I feel GREAT.
What can I expect tomorrow for this injection?
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Thank you, melmcbee.
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Shetland pony- you are always in my
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Hi Goingcrazy8. Im sorry for all of your stress. I just stand on one leg and purposely try to relax the gluteus. I hold as still as i can because that stuff is hard to push. It takes a minute to finish injecting. Then i rub the area like massaging it in. I also go grocery shopping so im walking. I drink a ton of water. I think it helps. Good luck
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Thank you, Dianarose. Ditto.
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so sorry SP. I know it takes time to wrap your head around this new direction. Take time to hide under the covers, eat chocolate and just be. We will be here when you are recharged.
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So first Faslodex today, not too bad. Feel the glass at wine at lunch will help
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Wine always helps!
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Shetland pony I am a little in disbelief myself when I read your disappointing news. I m so sorry to hear it. It made me realize even when we re doing well on Fas, an increase in TM could happen to any one of us, at any time and throw our treatment lives into emotional chaos all over again.
Take care and yes take all the time you need and perhaps get a second opinion. . It s not just the cancer we have to deal with . It s the damn side effects from the cancer drugs.
Hugs to you my friend!
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Yes, Zills, you describe just how it is. It helps me to hear it. I have been a slug this week, and have indeed had recourse to chocolate. I decided that was ok for a few days. Today, I'm back to getting stuff accomplished. I realize I have been spending a lot of time online, researching my new drug in an effort to have some sense of control.
Thanks, MCK. I know, right? In my thinking, Faslodex and Afinitor were supposed to work for me for at least a couple years. My onc thinks the cancer is not functionally hormone-receptor positive anymore. Having to move to chemo so soon is scary, and I dread hfs. But I do have the comfort of a really good onc at a really good cancer center, and I agree with her plan. (By the way, it is not standard to give so much weight to TMs, but in my case it makes sense, as I explained in more detail on the liver mets thread.) You are right, a change like this can happen, and it does bring on that emotional chaos for a while. But say to yourself, "That day may come, but it's not today."
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Hugs to you Shetland Pony ...
Tell yourself It s okay to do little or nothing for a few days. Give yourself time ... pls keep us Fas gals updated on how things go ..
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I got my shots yesterday and then had to wait for a scan (congested lungs but all clean!) and it really showed me how important it is to move around after the shots. I sat for a good hour after the injection and today I am so sore! It's never been this bad before. Oh, Fanny Pack, painful behinds are no joke!!
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Hugs Shetland Pony, you are in my prayers and it's ok to want some sense of control, that is me also! We all love you! MCK54: I ended up in hospital 5 nights so very weak with acute viral syndrome possible pneumonia, I don't think they were quite sure, got IV antibiotics and still on oral antibiotics! Quite depressed, they are going to start me on Wellbutrin! I will bounce back, I know but I'm not a very patient person ,anybody have experience with Wellbutrin? Love you all!
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Update on my painful glumps this week--I had my acupuncturist work on them and they felt so much better! They are still tender to the touch, but then I just won't touch them!
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girlwithacurl: that is such a very cute remark I love it!!my last shot was ok but the two before that I had huge glimpses and still have remnants of the
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hello all,
This is my first venture on this site. I am 66, and like most of us feel like I was dropped out of the sky, with this recent diagnosis.tis my 3rd bout...in 3yrs. I was on Irimadex for 2 yrs after left lumpectomy, did get a reaccurence in my armpit had ANLD and rads. In JUNE 16...then Aromaso. But it spread within 11 months or i guess it never left. None of my Oncs suggested a repeat Petscan after 6 months.. this was found on a Cat scan bc I got squeezed in between my garden gate..thought I brushed a rib. Ribs fine..
I was [ May 15th] diagnosed with Mets in liver, and focus spots? in lung, femur and in left axcilla again.
. now.on IBRANCE 125 mg and Faslodex shots. Getting by my 3rd set next week.. first 2 sets of shots were ok: 2 nurses 3-2-1...in the upper buttocks.
Can't tell if thick runny nose or nasty cough was result of allergies, or side effects.
But i do know that the 7 days without IBRANCE last week I felt a lot more like myself, nose stopped running...
On my second round of IBRANCE so far no SEs...except runny nose...
Back to faslodex, is anyone else experiencing really strong and different urine odor for a few days after shots?
I remember the orange pee after "red devil" injections..but tons of water cleared it.I do drink 48-64,oz of water a day but still smells awful!
My ONC tells me not to worryh about TM,s but how else do I have any idea if it is working...
HAS anyone gotten thinned hair on IBRANCE + FASLODEX? If so, after how many cycles does it start falling out?
Is anyone else hungry all the time on this stuff? I read that having METS can decrease one's appetite, but I am constantly thinking about food.
I try really really hard to not think about Mets all the time. Sometimes I feel blessed if I forget I have it for a day.
Any ideas please. Thanks
Gardener-20
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Welcome, Gardener-20! We're sorry that you need to be here but happy to have you among us under the circumstances and ready to help.
I have just completed my 5th course of Ibrance + Faslodex. I have not experienced any real side effects, to include a lack of urine odor issues and no increased appetite. No thinning of hair, either, at least so far.
My TMs are of no use, as they remain very low, regardless. They have been 7 and 15, so my onc says that they are useless as a tool.
So glad to hear about your garden gate...I'm a gardener, too! My bone mets (only ones so far) were also found by accident through a CT scan of my chest for something else, which was negative for the original offender. But...there were the unexpected mets, after 26 years from my original diagnosis.
My garden this past April (before the last 2 weeks of extreme heat). Enjoy your garden!
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Gardener-20,
Yes, many of us have noticed a distinct odor for a few days after receiving the injections. I have concluded that this is from the castor oil and other excipients in the solution as they change with bodily processes and are excreted.
I just wash my nether regions and change my underwear several times a day until it goes away!
Tina
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Hi. I just read many of your comments. I had three Faslodex and am now getting it once a month. Xgeva now every 3 months. Not so much trouble with shots per se. But very tired and grumpy for 3 days but can't sleep like when you get prednisone. I did have taste changes, urine smell. Back spasms and spasms in intestines. Lot of trips to the bathroom. Slight nausea and no appetite. Today is two weeks since my last shot. Still achy and arthritis is flaring. I appreciate reading all your comments. It helps to know that these symptoms aren't all in my head. When docs and NPs discount your symptoms it doesn't help. My last bout 11 years ago taught me that busy professionals don't always pay attention. But I remember one nurses aide, Eileen who crushed ice into tiny chips and gave them to me when I couldn't swallow. An IV was going but I was so uncomfortable I couldn't talk. I remember her kindness. She saw me and figured out what I needed. She's retired now but I'll never forget her and how she saw me as a person that day
Thank you all for you insights into this drug. Hope I stay on it for a long time
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Maire, do you know about taking Claritin for 2 days before and after your shots?
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How much Claritin do you take? I take it sometimes for seasonal allergies. Does it help with side effects.
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Maire, when I first started this treatment 6 months ago, my first two sets of Faslodex shots were very painful, particularly for a couple of days after the shots. I did not start the Xgeva until after I had learned about and started using the Claritin (I use the generic Loratadin). Someone on the Ibrance/Faslodex site suggested that if you take Claritin (or the generic) 2 days before the shot, on the day of the shot, and for 2 days after, the pain of the shot and the process is greatly diminished. Some simply take it every day now, and I have chosen to do that. It was amazing for me: when I did the Claritin routine, the shots were less painful during injection, and I had barely any pain after the shots. Then I started Xgeva, and I have had NO pain, either with the injection or thereafter. It is surely worth a try!! Several women on that site follow this regimen with success.
I told my MO about it, and she said that she recommended this regimen for Nulasta (sp?) but had not for Faslodex and Xgeva. For me and for many others, it has been a lifesaver. You may want to give it a try. Good luck!
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Thank you Joyner, I'll give it a try. I see you had a long time from your first go around until mets. I was Her+ and was among the first to take that. New drugs and all on this thread are a blessing
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Hi Joyner. Back spasms are much better this time with Claritin . Thanks again
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Wow, no one's posted on this thread since August! I hope that indicates all members of the Fanny Pack are cheerfully saluting the world with bottoms up.
Here's some interesting information on the development of oral SERDS. I copied this squib from a more extensive article in today's Medscape entitled "Emerging Therapeutic Strategies in Breast Cancer." Authored by Kayla Cox, BS; Brandon Alford, BS; Hatem Soliman, MD, South Med J. 2017;110(10):632-637.
Selective ER Downregulators
Selective ER downregulators (SERDs) are useful in the treatment of advanced ER-positive breast cancer that has progressed on selective ER modulators such as tamoxifen. Like selective ER modulators, SERDs competitively bind to the ER, but do so with 100 times greater affinity.[28] In addition, SERDs stimulate ER breakdown and degradation.[29] This strategy may be particularly useful in tumors that have acquired constitutively activating mutations in the ER gene–leading signaling event in the absence of estrogen binding.[30,31] Fulvestrant is an intramuscular SERD approved as monotherapy in 2002 for HR-positive metastatic breast cancer in patients who have progressed on antiestrogen therapy.[32,33] RAD1901 and GDC-0810 are two oral SERDs that are in clinical development.
RAD1901 is a novel oral SERD that may have greater clinical efficacy than fulvestrant. Like fulvestrant, RAD1901 targets ER[alpha] and promotes its degradation. In xenograft models RAD1901 demonstrated a greater antitumor effect and earlier onset than tamoxifen and fulvestrant.[34] RAD1901 is in a phase 1 dose-escalation study for postmenopausal women with advanced ER-positive, HER2-negative breast cancer (NCT02338349).
GDC-0810 selectively binds and degrades ER[alpha] and has shown activity in tamoxifen-sensitive and tamoxifen-resistant tumor models.[35] GDC-0810 is being compared with fulvestrant in postmenopausal patients with metastatic ER-positive/HER2-negative breast cancers that are resistant to aromatase inhibitors (NCT02569801). The oral SERDs are an attractive new developmental target because of their ease of administration and ability to escalate the dose compared with the intramuscular administration of fulvestrant.
Tina
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Hi Tina that’s interesting information. I’ve been away from the thread for a year my old oncologist took me off the Ibrance/Faslodex combo without giving it a fair chance so my new oncologist will put me back on it next week. I will mention these other and see what he thinks.
Aurora
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Aurora,
It appears that all of these new, would-be alternatives to Faslodex are are still in trials.They're not available yet. We'll see if they work out!
Tina
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Thanks so much, Tina. This is great stuff! Headed through MD today on the way to VT to son's wedding!
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Tina, someone on the boards is on the Phase I trial for this. [I tried to get into it but they didn't have an open slot]. She hasn't said much since the summer when she did the whole PK series but so far s I know it's going well.
I recall that the med had to be refrigerated but that was the only annoying thing about it. Same side-effects (except on the rear end).
There's a thread somewhere. . .
Hope all you ladies are doing well. I still have the lumps in my rear from the last few sets of shots. Madam X is treating me well but I wish I was still a member of the fanny pack.
Hugs to all.
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