Ibrance (Palbociclib)
Comments
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Deanna - So glad to hear your GREAT news! Wow, that was the fastest scan result I've ever seen. Glad you didn't have to wait any longer and so glad to hear such good results!
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wonderful, Deanna. Yes, encouraging for us all
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Deanna, very happy to hear your good news!
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Deanna-great news!!!! Happy dance time!!!
Babs0 -
Deanna,
You always provide such good information.
Do you get PET scans, CT scans and bone scans regularly? What do the bone scans provider that the other scans do not? Is it an MRI or a special machine?
Thanks! And congrats on your results again
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Kaption, my insurance will not authorize a PET for follow up monitoring, so I get CT scans, which evidently show enough to tell where the mbc is, and then an occasional bone scan which, as I understand it, shows something different - specifically the uptake of a nuclear injection that indicates the degree of activity in those mbc areas. So if I am doing well -- no increased pain and TMs not rising -- my ULCA onc is onboard w/doing the CT every 6 mos. or so. We did it this time b'cuz it has been 6 mos. since I started Faslodex+Ibrance and time to see what was going on.
I know many women get them on a 3 month routine, but I do not want that much radiation, and I am happy that my onc lets me go 6 mos. if there's no reason to suspect progression.
I should add that when I had severe pain early on in my mbc dx, I also had a base MRI, which probably yielded helpful info at the time. But the other two modalities give us the info' we need now.
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Thanks, Deanna. I know my onc would prefer fewer PET scans too, but I haven't been stable enough yet. Maybe if this month's TM and next month's scans are stable and I don't get any new pain...I can wait 6 months. Hoping!
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Congrats Deanna on your great news!! I hope everyone is well! Welcome to all of our new Ibrance friends!'
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My Onc seems a bit conservative with the PET's too and I am seeing the sense in her timing. My spacing will be 4 months this time since I changed meds. I hope if these next ones come back good we can wait for 5 or 6 months too. I will be curious to find out if she orders other types such as CT in the interim...
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Congrats on the great news Diana, and everyone else that has received some recently. I was dx in 07/15, had ovary removal, started Ibrance, then had a 3 month scan that was good, now waiting 4 months this time, and if stable will move to 6 months, it all depends on symptoms and tm testing. I took my last pill on cycle 6 last night, yeah! I see the onc next tuesday, hopefully things keep rolling along!
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Congratulations Deanna, wonderful news
Marilyn
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Deanna--Congrats on the good results! My MO sounds a bit like yours. He doesn't like to radiate much. I think he is looking at the possible long term effects of radiation. Looking at things lone term sounds good. He told me that when one patient came to him, she had already had 40 PET scans. I will get my 2nd CT scan in March (1st one in June at dx) and another spine MRI. I've never had a bone scan.
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My MO kind of lets me decide when I want a PET/CT. When I first was diagnosed and tumor markers weren't stable, he recommended them every 3 months. Now that I've been on Faslodex and Ibrance for 6 months with tumor markers steadily falling and improvement in symptoms, he agrees, let's not do it until we feel something isn't going right. I am very comfortable with that.
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Hey Ladies, well after 2 months on Letrozole/Ibrance...I will be moving to faslodex/Ibrance combo. I failed arimidex after 9 months and my old oncologist put me on the letrozole/Ibrance combo. My new onco said that she wanted me on faslodex with Ibrance. Her reasoning is that letrozole is the sister to arimidex, and if the arimidex didn't work then the letrozole wouldn't either. I seem to be burning through the pill therapy fast. I was so praying I would be able to last on arimidex or letrozole for years. Now after 24 hours of non stop crying...I am depressed and have a feeling I am going to have a cancer that doesn't respond well to anything. My onco said you want to ride out the pill form as long as you can, because the chemo therapy doesn't last long before reoccurance.
Has anyone failed arimidex and then gone on to do well with letrozole?
Depressed and losing hope.
Robin
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Robin, I went through the same scenario a few months ago when Anastrazole (my first line of tx after re-dx) failed me, and my UCLA onc wanted me to go to Faslodex+Ibrance. After a day of feeling -- ohmygosh, I can't believe I just skipped over two of my options! -- I emailed my onc and was relieved to be told I could possibly go back and try those again in the future, but it truly was best when a drug fails you to go to one that works with an entirely different mechanism. And I have to tell you, I love Faslodex! It's so easy -- two shots a month -- and you're done for the month, except to take your Ibrance. I know it's hard to wrap your head around, but we're looking for long term stability or NED, and if another A/I probably won't that for you right now, it's best to not blow thru them for now and go back to them later. (((Hugs))) and hang in there! It sounds like your new onc is absolutely on top of things, especially since Faslodex+Ibrance was just approved! Oh, and Faslodex is not a chemo. I'm actually not sure exactly what it is, but it also blocks estrogen, just a bit differently than the A/I's do. Deanna
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Thanks Deanna,
I appreciate the response! Can you tell me how long you have been on the faslodex + Ibrance? Also what is your tumor status? Mine initially was ER+, PR+, HER-....but has changed to ER+, PR-. HER- and Iv'e been told that PR- means you are a luminal B type and this type doesn't respond well to treatment. My onco is going to run a circulating tumor test to give a definite on the luminal B, but a lot of PR negatives are classified luminal B. This scares the crap out of me.
Also I just wanted to say that I follow these posts more than I post myself, but from all the reading I've done.....I can definitely tell you are very knowledgeable on everything.
Thanks for all you do on this site.
Robin
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Deanna, Congrats on your recent scan and TM results! Very happy for you.
Robin, I understand how you are feeling, but don't lose hope. My 1st line tx was Arimidex and it only kept me stable for 9 months. Last April I changed to Faslodex due to slight progression and have had much better results! We added Ibrance in August and my last 2 scans have shown nothing but regression. Faslodex works by blocking the hormone receptors rather than blocking the hormones themselves, so it is different from the other AIs as Diana said. I don't know anything about PR- or luminal B, but I can tell you that you can have a much better response to a different drug or combo after a not so great response to 1st line tx. Letrozole and Arimidex are so alike, I don't look at them as being 2 options, more like an either or. Hang tight Robin, and keep learning, it makes things a little less scary.
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Hello ladies. I just failed afinitor/Aromasin. Now I'm moving on to faslodex/ibrance. I have been on faslodex before just by it self and it failed me. We are still waiting for insurance to approve ibrance. Anyone else have difficulty getting insurance to cover it? Also when I did my faslodex the last time I would get muscle pain near the injection site. It would hurt but it would be bearable. I just got my first shot this time around yesterday and the pain is way lower...closer to the middle of my butt and radiating down my legs and into my hips. Did she do it wrong? I am in so much pain that I can hardly walk.
Also I would like to know how you all are doing on the faslodex/ibrance combo? It looks like I will be starting this right before I leave for a cruise. Just scared I'm going to feel like total crap on the cruise.
Any advice would be greatly appreciated. Thank you.
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Robin,
I was on ameridex/aromasin for 19 months before it failed me. I am presently taking letrozole and ibrance since August and all bone tumors have shrunk or disappeared. This therapy has not been difficult except for feeling tired. Don't get discouraged. Marilyn
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Deanna! Love reading this news! *susan*
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Thank you Jobur and Marilyn!
Marilyn, I see you are PR- , are you lumal b type? You got a good long run on arimidex! I wonder if taking the Aromasin with the arimidex extended the time before it failed. Wishing you a long run with the letrozole combo.
Robin
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Deanna - I go to 200 building too, tomorrow I'm at Ronald Reagan for a thoracentisis since my left lung has fluid again. ugh Onc wants to add Xgeva - how are you tolerating it? I read some scary things about Xgeva on another thread - any of you ladies on this? My fas shots are ok, no pain yet (as I have some cushion). I will start round 3 of Ibrance next week. My onc wants to do PET at 6 mos to limit rads. Agree with his thinking as I had 28 rounds of supraclav a few years ago. Hang in there Sonyarizzo -I am taking Arimidex along with Ibrance/fas. My main SE is fatigue with nose bleeds.
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lalady, I've been on xgeva for almost two years without any problems. Just be sure they bring it to room temp and inject slowly. I have it put in my arm. Best wishes
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I haven't posted in a long time, but love reading the encouraging words you all share! Tuesday was my 1 year anniversary on Ibrance/Letrozole. I get scans for liver and bones every 6 months. My tumor markers have started to rise again the past 4 months. So, I'm freaked thinking it's rearing its ugly head again. I have mild pain at the most. I just wanted to say thank you all for being so positive! I feel much better! Have a great weekend everyone!
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lalady, like you, I was freaked out about starting Xgeva and dragged my heels about it for more than a year due to needed dental work that got strung out and delayed, and left me never really sure I was ready. Dr. Hurvitz finally asked me if I would like to see a doc @ the UCLA School of Dentistry who is not only a DDS, MD & PhD, but has a special interest in ONJ. She did all sorts of stuff, including a jaw CT, and I got cleared for and started Xgeva two months ago, and so far, so good. For me, the fear was far worse than the drug, which seems like nothing. The only SE I've had was an odd metallic taste in my mouth for a few days, but it went away and didn't happen this month. I would strongly urge you to get a referral to Dr. Aghaloo at UCLA Dentistry if your hesitation has anything to do with the fear of ONJ. She's absolutely wonderful.
Robin, in response to your question, I've been on Faslodex+Ibrance since last August, and my stats are ER+PR+Her2-. It sounds like your onc is very on top of things, and I don't always say that. As far as knowledge, my sister, who is a 2x bc survivor and has been in bc RT research her entire career @ an NCI cancer center has been my go-to resource and support. I've also been very fortunate (thanks to my sister) to have ended up getting tx @ one of the best places for bc in the US, after a nightmare experience with local "bc experts." I also firmly believe that women who are well-informed do better, which is why I think BCO is so important.
sonyarizzo, approvals for Ibrance w/Faslodex should be easier now that the combo has officially been approved, but I'm not surprised that insurance companies may not always approve it quickly when they see the staggering cost. Are you aware that the "retail" value on it is in the $11,600 per month range, give or take $500 depending on your insurance carrier? I'm sure whoever has your rquest just wants to be sure that you really need it, and that their supervisor signs off on it, but your oncs office should be handling that for you. Also, be sure whatever pharmacy you get it from or your onc signs you up for the Pfizer One co-pay plan which will bring your co-pay down to $10/month. As far as the painful Faslodex shot, hopefully they didn't hit the socratic nerve. I'm not sure what to do if they did, but hopefully others here will. In the future, be sure they give it to you correctly. Talk to them about it, watch carefully, and speak up if it's not being done per the instructions posted on the Faslodex thread. It needs to be given kind of high towards the side -- away from that big nerve -- and warmed to room temp and injected very, very slowly. You need to have your foot completely unweighted on the injection side, and if you turn your toes in, that also helps. Did you do all of those things this time? More tips spelled out here: https://community.breastcancer.org/forum/8/topics/...
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sonyarizzo: If you have Medicare part D go here for PAN to get coverage for Ibrance. https://www.panfoundation.org/metastatic-breast-cancer. If you have commercial/private pay/EGHP then follow Deanna's suggestion.
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And I restart Ibrance 75 mg today if it came in the mail. SEs are fatigue and heartburn. What would u guys recommend for the heartburn? Tums?
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Some heartburn meds interact with Ibrance, so check with your doctor of pharmacist to get the latest information.
And you know the usual: Avoid spicy, acidic, and carbonated food and drink. Use a wedge for sleeping. Don't lie down right after eating. Wear clothes that are loose around your middle.
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Cristina, I would add coffee and maybe even tea to the list ShetlandPony gave you. Maybe they both fall under the acidic heading, but they both give me heartburn since I started Ibrance, so wanted to mention them specifically. Aside from that, I use a chewable Melaleuca product called Calmicid. I get it from a neighbor, but you might be able to find it on Amazon or eBay. The other excellent product I recently found is called DGL Ultra by Enzymatic Therapy. You can find it on Amazon. It's also a chewable... extra strength and a delicious German Chocolate Flavor. I've never used Tums but always try to stick with natural alternatives over chemical stuff. That DGL product I mentioned is based on licorice root. Not sure if either would appear on the list SP mentioned since they're not drugs, but my recent TMs and scans were good, so I'm assuming they're safe in reasonable quantities.
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does the wedge pillow need to be a certain height?
I'm switching from Pepcid to Prilosec. Hoping that helps. Everything seems to cause acid even sleepy time tea. I feel like a fire breathing dragon.
I like thechews over the tablets for antacids.
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