Faslodex + Pablociclib(Ibrance) treatment combination -
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GREAT news on your scans, Wendy!!! When we say backside or rear end, I think it varies a bit from office to office, and maybe even woman to woman based on build. I get mine very high on the sides -- right in that hip muscle. But others have reported getting them more towards the back, and some, like Lindalou, have reported sciatic nerve issues, especially after many months of shots.
If you haven't read it, there's an excellent link somewhere at the start of the Faslodex thread, describing exactly how the shots should be given. It wouldn't hurt to check that out and be sure whomever administers your shot follows that intramuscular injection procedure. I've had to stop some lab techs in my local onc's office from pinching, or not warming the vials enough, etc. Let me know if you need help finding that post.
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HLB- when I had my bone biopsy in March, it came back Her2 ++. Primary bc was def negative. My first bone scan showed mets to T3, T8, L4 and proximal femur. I had rads for the femur because my MO feared I'd fracture it. It was the only lytic lesion. The other 3 were sclerotic. Three months after starting letrozole, Ibrance and Xgeva, I got scanned again and showed further progression in the existing lesions and added several more. Up to 14 bones now! MO wanted to "shake things up" and changed me to Faslodex with Ibrance, and added the Herceptin, thinking the no longer definitive negative Her2 might be the culprit. I'll find out in September if it's working. I'm having some minor aches in my lower back and sacrum, but just hope it's unhappy cancer cells getting ready to die!
As for injection locations, all Faslodex intramuscular injections should be in the Gluteus Medius muscle (upper outer quadrant of your buttocks). A Z-track method should be used for thick meds that might leak out or irritate the surrounding tissue, so the "cheek muscle" should be pulled slightly to the side for administration. If you are thin, grasping or pinching to pull the muscle upward is not uncommon or incorrect. Either way, the sciatic nerve is not in that area. More central/lower cheek area.👍🏻
I taught medical assisting for almost 23 years and my students hated giving and receiving injections. I reminded them it was good to know how the patient might feel and it would provide a different perspective.
Hope that helps!
Debie
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My last shots that I got 2 days ago were down lower than the others, like right in the center of the butt cheek. I had two dime sized blood spots on my underwear. I'm not minding it all. The only one I didn't like was when they did it out to the sides and I could feel the medicine rushing halfway down the outer thighs. The thighs were sore for more than a month. I will stop them if they try it again because it was really irritating. The kind of soreness that feels like someone rubbed it over and over for an hour. That girl pinched and twisted, and when the shot was done she let go of the twist. She said it made the medicine stay in better. She was the only who did that so far. I will have to remember to wear darker pants from now on due to the blood. I wear white pants a lot in the summer. I think the ones that were lower didn't seem to hurt as much.
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HLB, don't they put little round bandaids where they did the shots?
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Debie, Hope Fas will do for you what letrezole did not. Thanks for the technical perspective on shot administration. Always nice to hear it from someone who knows the correct procedure. However, when I asked about Z track at my clinic I was told that isn't done much anymore. Are you aware of any other technique that might be used? Also, I wonder if there are might be other nerves in the upper outer quadrant that can be affected.
HLB, My nurse always tells me she tucks little pieces of gauze under my pants in case the shots bleed. Maybe you could suggest this to your nurse next time and keep wearing your white pants.
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Deanna, yes, they put regular band aids on but it bled enough to come through onto the underwear but luckily not the pants. At least I went home after that anyway. I was going to work half a day after my appt but with him running so late I didn't even have 4 hrs left to work.
Jobur I will def ask for the gauze next time. How embarrasing would that be, walking around with two little round blood spots on my bum! Haha. Well I recently wore two diff colored shoes due to the poor lighting in my house. I have 4 pairs of the same shoe in different colors and I wore a gray one and a blue one. My coworker said "oh is it crazy mixed up day?!" lol
I am feeling profounfly exhausted for some reason! I slept 12 hrs fri-sat. Went to dinner for dad and sisters bday Saturday, came home and slept hours again. I was feeling so good on this combo, now I'm not sure. I had totally forgotten until now, but the xgeva was given a lot faster than normal this time so it might be that. Sometimes that shot makes me this way and sometimes not at all. Maybe the heat too but I can't seem to get enough rest. Everything I do is reluctant.
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well my ca 27-29 is up higher than ever! no wonder i was tired. I am on my third bottle of ibrance. could I be finished with this tx already?? I am feeling sick to my stomach.
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HLB, it's very common for TMs to go up initially on Ibrance -- even for several months. If you are not having increased pain or other issues, try not to panic. Of course only your onc can advise you -- and hopefully he/she has experience with Ibrance. But if you read the original trial notes, you will see that some patients didn't get a response on Ibrance until cycles 5, 6, and beyond, at which point some had dramatic drops in TMs and other signs of regression and healing. Ibrance is in a class by itself and does not yield the same fast response other meds do. It can take awhile to kick in. An experienced onc will weigh all factors before deciding what's going on.
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Thanks deanna, I am hoping that's what it is. My mom is worried now of course, and I have giving them that news.
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Oh, I know, HLB. My hubby is getting better at riding this up and down stuff, but it's still difficult not to be affected by the concerned look he gets when my TMs are up, as they were last month! If it's any consolation (and again, I'm not an onc and not saying this is reflective of your experience), but here are a couple of quotes just today from an Ibrance group I'm in on FB. I thought of you when I saw these just after your earlier post above.
"Ok Ibrance it's almost been a year with you.. first pill of 12 mths cycle. And it seems that it took 11 mths for it to start really working!! My Oncologist told me to be patient, but thats not something i do very well at all, especially with this...Let's Do This"
"Took 13 cycles but I am NED now"
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wow, thanks for that Deanna! that is a long time!
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HLB, living from month to month on the "numbers" must be exhausting! Not to mention feeling like you are being graded for something that is not in your control.
If you feel fine, why not skip the numbers for a few months? Of course if that would cause you even more anxiety I wouldn't do it, but if you could forget about it for a while maybe everyone would calm down?
I always get gauze after the shots. If I wore tight pants I'd have lumpy cheeks. :-) I bleed a lot.
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pajim I think you're right. The thing is those numbers have always been very dependable for me, allowing me to have less scans. However, I always got the test every three months. Now that I'm on this treatment it has gone to every month and I can see its going to be a problem mentally if they do not go down every time.
Based on what deanna posted I wonder if I should just forget about it until the next one. I heard from the nurse coordinator and she said onc is going to order a scan before next appt. I can't imagine going 12 months on a treatment that seemed not to be working. I wonder if she was stable during that time or rising numbers for 12 months? That would be scary. Maybe it's getting to where the test is no longer reliable for me. Who knows. I do feel the same as usualw no new pains but I have never had pain even with progression. Will just have to chill and wait.
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Scans today were stable!!Emma scanned this week too and her scans were stable..at almost 1 year post diagnosis, 10 months on this protocol although Tumor markers have continued to go up we will take stable..
Interesting note I have a genetic disorder that cause tumors and I have many through out my body. Nothing typically works on these, and mine are shrinking.. thus is really exciting news....
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Congratulations! Whatever the genetic disorder is, it must express CD4/6. :-)
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After 3 cycles of this protocol I had my first PET scan in 2 years and in all my bones it is stable without ant new mets anywhere, there's only something in both my lungs which could be residue from pneumonia or bronchitis or even allergies. My last blood work show my hemoglobin on the rise and my white cells and platelets stable. Nurse said:keep doing whatever you're doing" . I'm happy as can be
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it's Neurofibramotosis, typically they have looked at the RAAS pathway,but thinking get we are on to something....
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keetmom, So happy to hear that both you and Emma are stable! And congrats on shrinkage to other tumors too, very exciting indeed!
Aurora, Yea!! for stable bone mets and nothing new to find. Your blood work sounds good too, hope you are celebrating!
I also have good news to report. Waited 5 months before scanning this time so was a bit nervous, but preliminary news is no cancer seen on PET, all findings benign. Between the 3 of us with 2 stables and 1 stable boy, I think it's time we got some horses, ha ha!
Best to everyone!
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My marker was 171 in January 2016. A recheck of the marker was 194. I had CT, MRI, and PET scans. PET showed metastases in peritoneum. I have just begun the Ibrance and Faslodex regimen. I just received my third regular dose of Faslodex yesterday (19July 2016) after the series of loading doses. I begin third round of Ibrance today. Haven't noticed any side effects that point to one or the other of these drugs. I'm checking for hair loss or thinning, but I never got all my hair back after chemo last year.
One problem I have been dealing with is ascites. Since April I have had three paracentesis procedures, removing 11 1/2 liters of ascites fluids.
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Hi jbrown,
Welcome to bco! It's good to meet you at your first post and I look forward to hearing more from you.
jbrown, I too have trouble with ascites from liver mets and tumors in my peritoneum.
This started in January 2015 and in August 2015, I had an indwelling drain line installed into my belly.
This way I can drain at home and don't need repeated punctures with risk of infection, never mind risk of infection.
BUT! I have much more ascites than you do - have drained on average 1 liter daily. I figure this is about 750# from my 100# body (was 122# a year ago, this takes a toll.)
Hang in there with the treatment, if you find something effective, the ascites may well clear up on their own.
Here's a special topic for those of us with peritoneal mets
https://community.breastcancer.org/forum/8/topics/...
warm hug and hello, Stephanie
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My experience with ibrance and fulvestron is pretty good. I started out on 125 mg of ibrance, on three weeks, off one. Waited for the white blood cells to stabilize while continuing treatment and they did but I had horrid fatigue due to ibrance and fluid in my pleural cavity. I was having weekly thoracentises. Lowered ibrance to 100 to try to help fatigue. Finally, lowered to 75 and two weeks on and two weeks off. The fluid finally left my lungs as ibrance is supposed to do this and it did. My tumor marker increased a couple of months ago so I am back up to 100 on for 3 weeks with only one week off and I am having fatigue again. I get monthly Zometa infusion and monthly faslodex injections. I have been on ibrance for one year. This makes me a little nervous as it only works for a finite amount of time.
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Valz good morning so I read your comment this morning after I woke up at five, yes I grab my iPad in the morning to check up on stuff guilty. Your last comment has stuck with me and is a little worm in the back of my head. I'm doing really well on this treatment combination and I do realize that cancer tends to find ways around whatever we through at it but I find saying this very depressing . Especially for those woman just starting out and dealing with side effects. Maybe I'm just a sensitive newby to all of this but our words have power for all that read them. My clinical trial nurse said she has a patient that has been using this protocol for fifteen years and is doing great. Maybe that could be us as well? 😉
Wendy
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Valz, Ibrance doubles the time to progression. When paired with Letrozole the median time to progression was bumped from a bit more than a year to over two years. And that's just the median. Half the women on this combo obviously did better than that for it to be the median.
The PFS time when paired with Faslodex has never seemed quite right to me, even though it was also doubled. I think it depends a lot on how much mbc you have when you are put on Faslodex, but as Wendy said, many women have done well on it alone for many years, so if Ibrance increases those stats, I'll take them!
Wendy, you are so right about negative words getting stuck in our head, which is one reason having a positive onc who is up on all the latest txs, which I believe are blowing old stats out of the water, is so important. Here's one I came across last night while researching newer survival rates because I firmly believe the 2 to 5 years stuff is old news thanks to newer drugs, like Ibrance. This is from new research out of USC. "The five-year survival of the bone group is more than 90 percent..." And who knows what new advances in tx will come along for us in those 5 years!
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really, that's wonderful. I don't mean to dampen anyone's outlook, but sometimes I need to talk. Ibrance has only been in use since 2015 without being in a trial.
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ok. I get it and I love it. Do you think this extra time applies to metastases other than bone? My cancer spread to my chest wall and into the pleural lining of the lungs. Bone mets came last and presently I am not worried about them.
Thanks, Valz
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Wendy3, I look at your lovely face and read that your first diagnosis was metastatic. That must have been so terrifying. You look so young for this all. I was thrilled to read what dlb823 posted about time frames. Your youth should be a huge positive factor for you. I'm just a little tired of BC. This is my third go round with it. But I see that I need an attitude adjustment! Thanks for that!
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Valz, don't feel bad about dampening anyone's outlook. This is the best place to share your fears because we all get where you're coming from. We all have those moments and we all at some point probably have made or will make a comment that inadvertently bothers someone else. But we're all here to support each other.
To answer your question, our bodies and our specific disease are each very individual. How we each do depends on how we respond to our meds, which can be different for each of us. What works great for you, might not for me, and vice-versa. But I believe there is also a huge mind-body connection, which is why it's beneficial not to buy into stats that may not even apply to you specifically due to a zillion factors, including pre-existing conditions, lifestyle habits, and, quite frankly, quality of medical care. Having mbc in more places does pose more of a challenge, but there are women on these boards who have been living with mbc in multiple places for far more years than the stats would lead any of us to believe.
As far as Ibrance being in use outside of the trials -- if I'm understanding your comment above -- that's true. But my onc has patients who have been on it for 6+ years (UCLA; they did the trials), and there are women in a FB group I'm in for Ibrance users who have been on it for 24+ months. I've been on it for a year already, as have quite a few women here on BCO.
Hope this helps!
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Valz I hope you don't think I was jumping on you I'm sorry if you did I'm 52 years old the younger one in the pic is my daughter lol. I can't imagine what dealing with this three times is like. I'm just always looking for positive stuff and hoping for a future for all of us. I love every single one of you cancer has changed me in many positive ways and if this is what I'm dealt with then I plan to make the most of my time like all of you. I only have bone mets at this time. Hope to keep it that way for a while😉.
Wendy
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thanks!
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Thanks.
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