Faslodex + Pablociclib(Ibrance) treatment combination -
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Knitlady, so great to hear your response to this combo! Thanks for sharing. Re sleeping: I have found medical cannabis is giving me better sleep than I've had in years. Wish I had known that long ago! If you live in a state where it's legal (or you can obtain it another way), it might be worth atry.
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seagan,
Thanks for the idea on medical cannabis. It is legal in my state but the doctors at my hospital are not ready to prescribe it yet. With your recommendation on how it works, I think I may need to have another discussion with my doc and possibly get another doc for this prescription
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Hi all!
My mom is on this combo and we are waiting for scan results (been two weeks) to see how it's working. I would hope they would call if there was significant concern.
She was on femara for about 2.5 years for bone mets only, then progressed to liver mets. She tried the afinitor combo with no luck (6 months) and not on this combo.
Has anyone had luck with this as a secondary or third line of treatment?
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knitlady, are you getting any exercise? I've found that even walking greatly helps with both fatigue and sleeping.
guidinglight, Faslodex+Ibrance is my second line tx. I was on Anastrazole for 18 mos., by which time it had totally failed me. I've been on Faslodex+Ibrance now since August 2015 with great results. I can't imagine waiting two weeks for scan results. Is your Mom in the US? Hopefully, you're right about good results not getting the immediate attention concerning ones do, but still, two weeks is way too long to have to wait. Has anyone called to see why the delay?
I just got some interesting blood work results worth sharing. The past 3 mos. (approx. a year into this combo) my TMs had been climbing at a concerning rate, one month taking a 90 pt. jump. But my scans were really good, so my onc had said we'd just watch the TMs a bit longer. And wonder of wonders, last Friday's CA27-29 had an almost 50 pt. drop! Just sharing this to hopefully encourage anyone else in the same situation. I'm not sure why my TMs had gone up so much over a 3 month period, but these meds truly can cause some weird TM results. Oh, and the stranger thing is, we were away the previous week, in Texas and I ate horribly -- way off my usual fruit & veggie diet, coffee instead of matcha green tea, and even an occasional sangria or glass of wine. The only other thing that might have factored in is that I walked sometimes as much as 6 hrs. a day. Not sure if any of that made a difference, but I definitely plan to make more of an effort to walk a lot now that our So. Cal. temps have come down.
Editing to add... My WBCs, RBCs and Gran# were all the lowest they've ever been, so this combo appears to be taking a cumulative toll on those.
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Deanna I have to concur with the exercise after I've been to the gym my tumour is almost gone. I can definitely feel a difference. So we need this in our lives.
I would also concur since starting with the medical MJ I sleep like a five year old, I haven't slept so well in a very long time. I tell myself sleep is important we heal when we sleep and we all need a lot of that 😊
Wendy
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Dlb, that's very interesting about your TMs lowering the month you walked a lot. I have a theory that exercise or stress may be influencing my TMs. I am planning to make a TM graph for the past year, then look back over my calendar to see if there are any correlations. Wendy, you can feel a difference?!
Hawksfansarah, thanks for telling us about the Caris Lifesciences tumor report. I looked at their web site, and was intrigued to see that along with the list of "therapies with potential benefit" they give a list of "therapies with potential lack of benefit". The test I had, Foundation One, doesn't have that part. One of these appointments I will ask my onc her opinion of the two tests.
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Fired my old oncologist today..met the new one today, can't believe how great the new one is..
My tumor markers have continued to climb as is my LDH...we are scanning in 2 weeks have only been doing CTD will do bone scan and Ctt.
He isn't in a hurry to drop this treatment as CTS gave been good..
On a good note my pain I gave had forever is pretty much non existent..so maybe the numbers were cancer dying..
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Hey Amie, Glad to hear you've got a new doc you like so well. So happy you pain level has dropped and CTs have been good. I'm not a big believer in TMs. Hope this next scan proves those TMs are bogus.
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Question for you ladies on Faslodex/Ibrance combo. How long does it take for your tumor markers to make a decline? I started the Ibrance in August. Tumor markers were 1333, September up to 1480, This month another jump to 1700. First month of taking the Ibrance I felt like that was the biggest mistake ever. Nausea, fatigue, tons of pain, just felt horrible. Now I feel really good with hardly any discomfort but those pesky tumor markers have me nervous. Am I being overly concerned and paranoid and just need to give it more time? I see my onc next week and want a game plan in my head before I go. Seems like since last June my markers have been on the rise. Took a bad fall and tore up my knee meniscus pretty bad and ended up with surgery. Thought all the pain involved with that impacted the TM but the onc said no. Was on the Faslodex/Zometa combo until this past July. Developed osteonecrosis in the jaw so again I'm thinking this has something to do with the TM but he says no. Just need some advice. Thanks in advance.
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Hmmm. Mine started down about a month after starting. I'd been taking Faslodex only and the markers were rising. We added Ibrance and they headed down within a couple of months. Others have said it took 3-4 months for their markers to head in the correct direction.
I wonder if Faslodex is just no longer working for you? Ibrance is really a booster. My onc says it has anti-cancer properties on it's own but it seems to work much better with a hormonal. (Has to do with the biological pathway)
Do tumor markers work for you? In other words, do they really match with your tumor burden? What do your scans look like? That's the real question. You shouldn't make any decisions about treatment without a scan.
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Hi Donutswife2 - ibrance+ fas took about 5 mos to kick in for me. My TM in August was only 38, but mine are not as high as some other ladies, and we know TM's are not that predictive. How was your PET and how do you feel? Yikes on your jaw - what happened? I'm on round #11 of this combo and still working full time.
Claire
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Hello - I am starting my journey today with Ibrance/Faslodex. Took last anastrozole last night, it was only effective a year, though I was suppose to take it 10 years. Mets to liver, spine and lung... original cancer breast IIIb. Yeah science... yeah, new option. Have a good day everyone!
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Roosarider, Welcome to the club no one wants to join. I see your stage 4 dx is VERY recent, so I suspect your head is spinning with the news. This is a great forum, and Ibrance + Fas is a good tx, se's not too bad for most. Feel free to post on whatever, someone here usually has been there, done that, and there are lots of wise, good people here.
What's a roosa?
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Hey Jobur, Roosa is the name of my great grandmother (Finnish). I am glad that we do have options even at this level. What a blessing. I wish everyone special grace and healing and a day doing what you like the best.
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Roosarider, Too funny, I thought maybe it was a motorcycle brand I had not heard of! There are lots of Finlanders where I live, good folks. Wishing you a day of grace and healing as well.
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Hello - been on Ibrance/faslodex for a week now. All's well. Ahoy! Can't really tell anything different yet. Starting radiation therapy to my spine this week in attempt to shrink a tumor. That's all folks. Have a wonderful radiology/oncologist in Sedona AZ. I don't mind driving 1 hr for treatment. The only one we have in Prescott has his wife sitting in the front desk and she asks for money before you even owe it. Plus their equipment seemed out of date. And they gave the patients old sheets to drape themselves with during the treatment. Sad. Won't go there again.
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Welcome Roosarider! You want radiation in a place they know what they are doing, and have the latest equipment, computers and thinking.
All, I have a bit of a dilemma coming up. I am supposed to get my shots (#48?) and start my 10th cycle of Ibrance the first week of December. I'm out of town all that week. I can see three options.
(1) try to get the shots early -- insurance won't pay so that's a non-starter.
(2) get an extra week off for both drugs. I've had extra weeks off for Fas before -- about 1x/year.
(3) get a week off for Fas but start the Ibrance 3 days late in November and 4 days late in December.
Has anyone tried any of these approaches? Did your doctor like one or the other? Mine is going to say "whatever you want".
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Pam, I had to delay my Faslodex 2 days due to a trip in September, and this month and next I will be delaying it a full week due to Thanksgiving and Christmas. Prior to starting Faslodex, I was reassured by my local onc that occasionally getting my shots a few days past Day 28 would not make any difference, so I've actually been happy to string it out a bit.
As far as Ibrance goes, I consistently need 10 to 14 days off between cycles, so I have been "off-schedule" with my Faslodex routine since month #2. I was also recently told when I asked my UCLA onc about the advisability of doing a cruise while on Ibrance, "Why don't you just stop it a week early that month, so that your counts will have a chance to rebound?" She said It really won't make any difference. So just do whatever works best for you and don't stress over it. If keeping them on the same monthly schedule, as I think your option #3 does, do that. If you feel better not missing that extra week off Ibrance, go with #2. There's no need to keep them on the same 28 day schedule, unless you are more comfortable doing that. What do you lean towards doing?
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Pajim, If it were me I would go with option 2. I don't believe delaying treatment by 1 week would make a bit of difference. Simple is good.
Business or pleasure? Hope it's the latter.
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This one is pleasure. I've been on buckets of business trips this year (NOLA last week!) so I'm happy to go on a grandchildren/golf trip.
The problem with getting off cycle is that each drug requires a blood draw. So if I start Ibrance on Day 1 and get Faslodex on day 8, I have to go into the cancer center an extra time. I like to ignore that place for weeks at a time
Unless otherwise indicated I'm inclined to take an extra week off. Then I don't have to worry about taking my pills while I'm gone (even better).
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Hi Pam - when I went on my cruise this summer I took an extra week off both fas and Ibrance - I felt well - flew business class to Europe and walked a lot. So for my thinking option 2 sounds best. This way each time you go for fas shots its the same blood draw day.:) FYI I am working in NM next week and pushing fas and ibrance a couple of days. So instead of round #12 fas shot on next Thursday, I will start the following Monday. I see no harm in that. It's QOL along with our health! Onc agrees and insurance pays.
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Pajim & Lalady, you both have all my admiration working full time on this combo, and traveling for work too! I get tired just thinking about going to the airport these days. More power to you both. Enjoy the golf and grands Pajim, and hope NM is a fun trip for you Claire.
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Hi everyone , I am a new-comer to this site and happy to have an invaluable resource of women (and perhaps a man or two) who truly know what I am going through! As you can see, I have just started on the Ibrance/Faslodex regiment and it's going well for me. Side effects are minimal so far especially compared to traditional chemotherapy , I keep waiting for the shoe to drop! I have a very strong family history of breast cancer as a matter or fact I just found out that the 3rd of my 4 sisters has been diagnosed , yes that's 4 out of 5 plus our mom, her sister and their mother. Apparently this is our cross to bear! It was one of those sisters who brought this forum to my attention and thanks to you all, I already knew so much before I even started these meds. Thank you!
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Dear Amy-Louise, Welcome to the community and thanks to your sister for bringing BCO to your attention. We are sorry for your diagnosis but glad that you reached out here. There is wonderful support and information to be shared. We hope that your treatment continues to go well and that you will keep us posted and stay connected here. The Mods
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Claire, I'm lucky in three ways. First, These meds don't affect my functioning very much. I feel for those of you get the fatigue. Second I love my [flexible desk] job and have a very understanding workplace.
Third, I don't have children. I have to say I have NO idea how those of you with children do this. I'd be tired and freaked out all the time.
Amy-Louise, welcome! The top of the "Faslodex Girls 2014" thread has all the tips you need on how not to get bruised and hurt getting the shots.
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Hi Pam - I don't have kids either - just a 17 year persian cat. I'm a career gal who loves my job and clients very much (well most of the time). I thrive on a sense of purpose and try to keep smiling. I'm on my way this morning to a film market for 2 days in Santa Monica. Booth girl in flats! The weather here is lovely. Looking forward to round #12 of fas+Ibrance next week AFTER I return from ABQ studios. Hope you chose choice #2. For all the newbies - see our earlier posts. Amy-Louise, I still have some fatigue and watery eyes, but claritan helps. I am on no pain meds whatsoever, so that helps too. Jobur - so nice to see you post again - has anyone heard from Stephanie?
(()) Claire
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Anyone on here experience bruising with this protocol? I've been on it for about 8 months and am currently on my 7 days off. I've had bruising pop up in odd places (stomach, arms, legs). No apparent cause. Should I be worried about this?
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That's a new one to me. Something about your coagulation is going haywire. Are you taking aspirin or advil or other NSAIDs for some reason?
I wouldn't worry unless the bruises are big or if they don't go away in the usual time or if this lasts longer than one cycle. But I'm a non-interventionalist. You could always mention it to the doctor or nurse next week when you go for your shots.
One thing I will say. Each month brings something interesting. And every month it's different. Each weird symptom has it's month and never returns.
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Kayrnic, Are your platelets low? Mine went down to 70 during cycle one, and I had nosebleeds and some minor bruising. I think you should call your MO to report the issue so he or she is aware of your bruising and can do testing or take actions, if needed. Your MO is the best person to determine whether or not the bruises are significant. I am now on cycle two, at a lower dose (100 mg), and my platelets are low, but not as bad.
Lynne
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Kayrnic - agree with Pajim and 50sgirl. Check your platelets - do your teeth bleed when you brush them? That SE sent me to my onc who set up a transfusion during second round of Ibrance due to low platelets and low HGB. Get this checked out now. I also switched to 100mg and tolerate it better, but I bruise more easily than others. I'm on round #12 starting Monday. Rooting for you. Pam - so true about monthly fluctuations with this combo, but it is working!
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