Faslodex Girls Thread
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Hi Girls-
I recently had a relapse with 4 new bone mets. Dr. is changing me from Femara to Faslodex and had my first shot yesterday. The pain in my rear is awful and wondering how long it will last? Starting to feel some of the other sides effects and wondering how long after the shot did side effects start and how long they lasted?
Also, Dr. only wants to change medicine and wait 3 months to see if it helped...no chemo or radiation? Has anyone in the group gone through that? Getting a 2nd opinion for sure!
Thanks,
Heather
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Heather, welcome! So sorry you have to be here.
It's correct that once the cancer has spread they don't start with chemo if you have ER+ cancer. The idea is to use the least side-effect causing medicine to keep the cancer from growing. You want the best quality of life for as long as you can get it. Because your cancer uses estrogen to grow (that's what ER+ cancer means) anti-estrogen therapy will actually help you far more than the traditional chemotherapy they give earlier Stage women. Sometimes they give radiation if you have only one met, or if something is causing a lot of pain.
NCCN Guidelines say that for ER+ bone mets you give an aromatase inhibitor (maybe plus Ibrance) as a first line. When that fails, Faslodex (maybe with Ibrance, maybe not). You should also be getting either Zometa or Xgeva to strengthen the bones. A second opinion is always a good idea.
As for Faslodex, three things cause butt pain. One -- they didn't warm up the syringes. Two -- they gave the shots too fast. This accounts for 85% of the problem. 15% is bad luck. Sometimes they hit the wrong spot. The only time I had a pain in the rear it went away in a day or so. Someone with more experience will be along. . .
Please do read the tips at the top of the thread and follow them. They'll help a lot. I always always grab the syringes before they give the shots, and if they are not room temperature I warm them myself. The nurses don't mind.
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Welcome Heather! I agree with most everything Pajim said! I may just be a baby, but my shots hurt every time going in, in spite of making sure the syringes are room temp and given slowly. Butt (attempt at humor) you get used to it. One other tip is to go for a walk right after the shots if you are able. It helps a lot. The sore butt muscle feeling should go away in a few days. It's been a really effective tx for my bone mets, went from lots of activity in spine and pelvis to no active mets in about 6 months. Hope the same for you!
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Oh, Heather, P.S. Some of the side-effects hang around forever. Those are the "extreme menopausal symptoms" ones. Some go away in a couple of days -- smelly urine, metallic taste in your mouth. Everyone is different.
Jobur, you are not a baby. You just have sensitive skin! Did you try the cold spray they can put on to numb the skin before they inject? I'm just a tough broad with lots of padding. Also luckier than most.
Bottom's up!
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Heather, I found that the first 3 - 4 rounds were the most painful. I guess we just get more used to them over time. Some nurses have better technique than others. One of my favorite nurses who is so sweet, gives the most painful shots. But I like her so I don't complain. I started using the heat patches they offered after about 5 rounds and have found them very helpful. I also find that massaging the area helps a lot. So, while I am waiting in the pharmacy after my shots, I massage my butt. Probably looks nutty, but most people in an onco clinic don't bat an eye because they are going through something similar. I used to have lingering pain and soreness for about a week but now it is only for about three days. Gets better over time. Best wishes and I hope you find it very effective.
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Having my highest scanxiety I believe I've ever had in my nearly 3 years since mbc dx. Maybe writing it down will make it ease a bit.
Quick recap, I ended 1 year on xgeva with Ibrance and Letrozole on June 1. I started Faslodex and xgeva a few days later. I've had rising TMs for quite a while, continuing to an all time high last month. My back pain has also increased the last month. Before this past month I rarely took any pain meds except for my few crisis points- the last one last November, involving my left femur, which received rads. I took 3 hydrocodones Monday-every 4 hours. I've been a bit better since then.
Anyway, latest pain is in thoracic area, which has know mets, that have never bothered me before. And very bottom of my spine.
So, increased TMs and pain for upcoming scan=nervous. I have a feeling MO will leave me on Faslodex even if the scan is not great, since I just started it and she commented about "going through treatments quickly" last month. Maybe due for rads on Thoracic area.
Okay, we'll see if I feel calmer now. Scan is next Tuesday, appointment is the following day. Breathe!
Thanks for "listening."
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Kaption, if it's any help to you, my pain level elevated very significantly and very fast when my first tx (Anastrozole) failed me, and it took a few months, as I recall, for my new regimen (Faslodex + Ibrance) to really get things under control again. I feel terrible knowing how worried you are, but hopefully things are stable, and I'm glad you won't have to wait long to get your results. I hope you can keep busy this weekend to keep the scanxiety at bay.
Heather, since it was your first Faslodex shots, I'm wondering if whoever gave them to you followed the protocol outlined above? Just re-reading them now, I think injecting slower than 30 seconds is even better -- at least a minute, or even more. Not sure 30 seconds is enough because even when warmed the med, which is in a base of castor oil, is very thick, and pushing it too fast will not give it time to move beyond the immediate area. And no "pinching" the flesh. It needs to be pushed or pulled flat to better access the muscle. (That's detailed in instructions for intramuscular shots someone posted way back on this thread.) In addition to unweighting the leg being injected, it helps to turn your toes in on that side to further insure the muscle is totally relaxed. Also, where did they actually give you the shots? High on the side is usually better than elsewhere. I have learned to be a very informed and vocal patient. Speak up if you have any concerns! It's your body, and the awful pain you're describing isn't necessary or par for the injections. And yes, unless you're hormone negative, no chemo and rads only for pain that isn't controlled with tx and pain meds because there is a lifetime limitation for rads per area, and you don't want to use it when it's not absolutely necessary.
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Thanks, Deanna. I was busy early this week, so I need to get some projects going for the next few days.
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Kaption, hang in there! Regardless of the scan results, two months seems a little early to decide that Faslodex has failed.
I'm sorry you're in pain. That has to make all the anxiety much worse.
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Just echoing that Faslodex + Ibrance can take a while, and can cause markers to go up before they come down. Also, Faslodex in particular seems to give me aches that resemble the bone pain I had early on, and especially in my back. Hang in there.
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Thanks to everyone. I'm on Faslodex (without Ibrance-which failed me after 1 year). As of the scan next Tuesday I will have been on Faslodex just a few days short of 3 months. Like I said, I'm feeling pretty sure she will keep me on it a while. Maybe just some rads to deal with the thoracic pain.
Just hoping for good, clear info from the scan.
Thanks for the support and positive words.
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Kaption: Faslodex takes some time to show its effect. My Onc pulled me off first time after 3 months because my TM continued to climb. She sent me to MD Anderson for second opinion with instructions to stop all treatments for two months. After met with MDA Onc, I returned to local Onc and had to restart the loading shots, with specific instruction from MDA to go for at least 4 months before checking on TM. I have been on Faslodex for more than two years from the second start. Give itsome time , and be patient with Faslodex.
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Thanks! That is reassuring!!!
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Kaption just want to add one more reassurance (the more the better, I find), my marker went higher than ever with this TX but scan shows improvement. I think I'm on my fourth month. My markers were always very accurate til now. Now I'm just going to chill about the markers a bit. Scan was a big relief and sometime I feel like I'm just waiting for liver or lung mets.
Is anyone getting big red mosquito-like bumps? Mostly legs now a big one on my shoulder. Not a lot, just occasionally one pops up. They're itchy. Maybe something is biting me. Now that I think about it, I haven't had any kind of bug bite in years. I must be too toxic for the bugs!
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HLB, thanks for the encouragement! Yes, the more the better. So many have done well on Faslodex. Just wish I didn't also have more pain. That could be treatment lag too. Hoping...
No bug bite type welts here. Could actually be a bug. Have you been outside more?
Speaking of that, has anyone heard anything mentioned about cancer patients and Zika? I have not- just wondering. Seems to be many unknowns with it.
HLB, hope you find your red bump cause.
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just posted on the bone mets board:
I just got back from my appointment getting results from yesterday's PET scan. (Reminder-I've been on Faslodex 3 months with rapidly rising TM and increased thoracic pain). Scan results were overall pretty good. Most spots are stable. Three have increased- sternum (very slight), right femur (no pain) and T3. Thinking T3 is the culprit. I'll call RO tomorrow and set up a meeting to talk to him. MO said RO might want an MRI to get a better look. We'll see. But, overall-pretty stable. I'll continue on Faslodex. I haven't seen today's TM, but we are ignoring it for now anyway. So, gentle happy dance.
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Hello Everyone!! Had my first shots today!
Roars and Hugs, Carol
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Hello Carol!
Kaption, the results sound pretty good. Congratulations!
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My tumor markers too have been rising with a stable scans..glad I'm not only one...
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Great news that your scans were pretty stable, Kaption! That's very hopeful after just 3 mos. And I'm in much the same boat as you and keetmom -- stable or better scans (my bone scan actually said no activity in bones), but my TMs have risen significantly the past two months. I had my shots and labs today, but won't get updated TMs until Friday.
Welcome to Faslodex and the Faslodex thread, Carol! I hope and pray it works great for you for a very long time!
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Kaption, That is great news and so far so good for you! RE: Zika....I have a friend in Florida and her MO said to be cautious and reasonable until more info is known.
Carol, Welcome to Fas Land. I'm 5.5 years out with Faslodex and have progression but it is slow so I'll take it. May the same happen for you or even more years.
Hi Amie! We'll connect soon and meet in person. My MO doesn't do TM's.
HLB, no bumps for me. Could you have hives from something?
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This may interest readers interested in unusual hormonal approaches to MBC:
https://community.breastcancer.org/forum/8/topics/...
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Cross posting
Hello everyone, I'm more of a lurker, but right now I need your collective help if you could please guide me in the right direction. Today my onc advised me that Ibrance/faslodex doesn't seem to be working based on the TMs rising. I had a PET a month ago and the report said lesions were healing and no new growth. I've been on Tamoxifen prior to mets dx, after mets I've been on Arimedex which worked for a year and a half, then Exemastane which only worked for three months then Abraxane which was working when we switched to Ibrance/faslodex. I convinced my doctor to continue same treatment this month and give the combo a chance to work this would be my fourth cycle. The TMs went down after the first cycle but have gone up on the second and third. My doctor is going to research what to put me on next. What do you think? If Ibrance/faslodex is not working what would be next? I appreciate any comments or suggestions.
Aurora
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Aurora,
I agree with the suggestions you have been given on the other board. It is usually scans and pain that count more than TMs in treatment choices. TMs often don't reflect what is happening right now. I'm experiencing that right now, and we are continuing with Faslodex.
My MO and RO both warned- you don't want to go through options too quickly.
Best wishes on the decision.
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Just got yesterday's TMs and other blood work. TMs are crazy high! Ignoring...ignoring...ignoring!
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Kaption, can I ask how high your TMs are, or how much they jumped? PM me if you'd rather not post, but I'm asking because mine have jumped 2 mos. in a row, including almost 100 pts. a month ago. I'm still waiting for yesterday's lab results, but in the meantime I had incredibly improved scans in August, including a bone scan that showed no activity. Prior to Faslodex + Ibrance my TMs were very accurate, so like you, it's not easy to ignore, and not sure my UCLA onc will continue to ignore them if up again, although I have no idea what she'll say.
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we now use the CEA. She changed from the CA after my Florida (vacation) Doctor used CEA. My numbers are always very high, I guess because I have so many "widespread metabolically active" spots. But, nearly all, according to scans, are pretty stable.
Anyway, my lowest, while on Ibrance was 124.6 in February. I stopped Ibrance in June when they reached 196.0 with some progression in scans and pain. Since Faslodex they have been 188.7 (slight hopeful dip) then 209.6, 247.4, and now 366.5!!
I don't know if we need to give up on the CEA or what. I'll be interested to hear what you learn.
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Interesting. I asked them to do a CEA yesterday. UCLA uses both CEA and CA27-29, while my local onc does only the latter. My local onc was on vacation yesterday, and I had to persuade his PA to add the CEA.
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my NP did the CA when she subbed for my MO when I was transitioning to Faslodex. She did it twice. It was also very high and much higher than back when I was first diagnosed and my MO was using it.
So, at least consistent.
I'm pretty sure they didn't do it this time. It has to be sent elsewhere and I don't get results for a few days.
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Kap- I'm confused. Are the numbers you posted CEA or 27-29. ?
Just hugs today no Roar, I'm curled up like a scared kitty
Carol
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