Faslodex + Pablociclib(Ibrance) treatment combination -
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DeeDee - My TM's have crept up the whole time I have been on Ibrance/Letrozol even while my tumors have receded and disappeared in scans. I've been on this protocol for 11 months, so I don't agree with your doctor when he says that the TMs should have dropped by now. Furthermore, TM's means something for some women sometimes. They mean absolutely nothing at all for other women.
Many doctors no longer use TM because they just aren't actionable. I am glad your doctor is concerned and conservative, but be careful about switching treatments too early and never, ever make a decision to switch treatments based on TM's. You need a scan to prove progressions, and even scans have more variability (error) then radiologists like to admit. Unless we are dealing with a really fast growing cancer, the best doctors require two scans, at least a couple months apart, to confirm progression.
Hang in there. And fill out your diagnostic and treatment history in the meantime. It helps us understand your situation and respond more directly to your issues.
>Z<
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Thank you zarovka. I feel better about the situation. I have filled out my diagnostic and treatment history, I'll check to see if I need to do something to share it with the community. Thank you again.
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Hi Cat! Forgive me for not welcoming you before. It sounds like you are doing very well with your tx and adjusting to your stage IV dx. Wonderful! One question for you, how did you get your DH to cook? Ha ha! Mine offers at times, but pretends he only knows how to cook 1 thing. Hope you and your support group have a lovely party next week.
Deedee, Welcome to you too! My tumor markers have always been normal, but judging from others experience on this combo I think you need to disregard your TMs and count on your scans to indicate what is going on. Rising TMs on Ibrance seem to be common, even when it is working well. It's a new enough drug, your mo may not have much experience with it yet. So try not to worry (easier said then done!) about those TMs and see what the next scans show. Wishing you all the best!
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DeeDee- I see your profile. You are on the very best treatments for hormone receptor positive treatments and you are just getting started. It's pretty unlikely you won't see a response, but it may not be fast. Ibrance can take 6-9 months to knock back mets.
Regular chemo works faster than Ibrance. I am little worried that your MO is applying his/her experience with chemo to Ibrance. It's a very different drug with totally different mechanisms, side effects and timelines. If you get a sense that your doctor doesn't know Ibrance, it's best to find one that does. I had to change oncs early on. It became clear that the first (lovely, intelligent) onc I had was out of her element overseeing an Ibrance protocol.
At a minimum hang out here so you can double check the advice of your current onc against the experience in this group. Second opinions are ALWAYS a good idea.
>Z<
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Thanks zarovka, my scans are scheduled for tomorrow and I see my onc on Monday for the results. If he wants to change me to chemo, I am going to make an appointment at Vanderbilt in Nashville, Tn, for a second opinion.
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Thanks! I tried it for a day and just ended up catatonic. My doctor said it happens to a lot of patients, and he'd understand if I didn't want to take it. So I'm not. Yay me.
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I met with my onc yesterday, bone scan was clear but CT scan showed progression in my liver. I'm having a hard time accepting that because just a month ago the PET scan showed a reduction in size. Anyway, he wants to stop ibrance/faslodex and move on to Doxil. Also wants to enter me into the MATCH clinical trial. Do any of you have experience with Doxil? I really had hoped ibrance and faslodex would work for me.
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Deedee how long were you on Ibrance and Faslodex
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Hi everyone and greetings of the season! I pray everyone is feeling well enough to enjoy it ! I just started my third round of Ibrance yesterday and am tolerating it and the Faslodex quite well, yes counts have been pretty low but not low enough to reduce my dose. Last week, my "off" week I didn't feel well at all, mainly a stomach ache that just wouldn't quit! I find that today, after just one dose of Ibrance, my stomach is feeling much better. Coincidence or could being without the pills have anything to do with it?
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DeeDee, I'm so sorry about your progression. I have no experience with Doxil, and it doesn't look like there's a thread here specifically for it, so I'm thinking you might want to start one within the Stage IV forum. And please stop back and let us know how you're doing.
Amy-Louise, your observation is an interesting one. Reaction to our week off does seem to vary. Some women feel great (like me most of the time); and others hate how they feel. I had something a bit like your situation happen this month. I had stopped Ibrance a few days early because of an upcoming trip and wanting to give my counts a chance to rebound. Then I stayed off it for a full two weeks, as I normally need 10 days to 2 weeks off for my counts to rebound. Anyway, by the end of that two weeks, I was feeling awful, including stomach issues that conjured up thoughts of progression. Now that I've been back on Ibrance a few days, I feel MUCH better! Maybe our bodies just get used to it and are happier without the sudden switches???
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Say DeeDee I've read that Ibrance + faslodex (CDK 4/6) does well against bone mets. And Ribociclib + Letrozole (CDK 4/6) does well with everything NOT bone mets and dose well against liver mets.
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My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
Progression with two spots on spine as of this October 2016. Oncologist wants to wait a few months to let it grow big enough for a biopsy. Complex case as she has had 3 different types of BC: ER+ 100% estrogen grade 1, ER+ 30% estrogen grade 3 and triple negative Metaplastic BC.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign.
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Hang in there Dee Dee. The MATCH trial is an awesome option. Very interested in the details.
>Z<
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Wendy3, I had just finished my 4th round when I had the scans. Mike, I am so sorry you're wife had been through so much. Everyone thank you for your words of encouragement. I have a call in to my onc, realized today that at the rate the tumor is growing, I don't have time to wait for permission from a clinical trial to start Doxil in the mean time. It went from less than 2 cm to 4 cm in a month's time and the radiologist classified it as "perhaps enlarged somewhat from previous." WTH, it doubled in size and he says perhaps enlarged, yeah I'm going to ask for a new radiologist to have a look at it too.
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Deanna, thanks for letting me know that you had a similar issue with your stomach. I have to admit that I was getting a little scared! Feeling much better now. Just waiting now to see what I will experience as side effects this go round. Previous issues include bleeding gums and nose, a few mouth sores (very short lived), peeling hands and feet, fatigue and swollen ankles. The good news is that none of those hurt!
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I got mouth sores in the third week of my first cycle. A friend of mine told me about homeopathic Borax. You know, one of those blue vials of homeopathic treatments you can get at Whole Foods, Pharmacia, or health food stores. It worked like a charm! The sores I had went away and I didn't get any new ones. Also much easier to do than mouthwashes or rinses since you can easily carry around the little vial and you don't even have to take them with water. You just put 5 of the tiny pills under your tongue and let them dissolve. They taste slightly sweet, like candy.
Hugs, Susan
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Hello everyone! I haven't been here for awhile and I am 5 pages behind. I haven't read them yet but I wanted to tell you all the latest because I have seen some others post similar situations and are concerned.
I've been on this combo for 8 months now and although before this TX my ca27-29 was always a very good indicator of cancer growing or progression, they # has gone up ever since I started this combo. It's over 300 now! I have had 2 PET/CTs since I started and the first one showed mostly the same with a few areas of minor improvment. The last one was a week ago and it was significant continued treatment response with reduced avidity! I don't know what the heck is up with the markers but it mst be something about this treatment. Plus I feel fine without any symptoms of progression (not. That I ever have any). What a wonderful Christmas gift, along with the fact that my very healthy active dad recently had a stress test due to minor symptoms and turned out he needed a quad bypass!! So so scary but he is recovering very nicely thank you lord! Apparently he was a massive and deadly heart attack waiting to happen and lucky that it was caught. So between my dad being alive and good scan it was the best Christmas ever!
So I just wanted to say if you are having high markers try not to worry and don't stop this treatment too soon! I was told the same thing by Deanna but it was hard not to think something was going on. I was amazed with the good scan!
Happy Holidays to you all!!!
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HLB, Glad your Dad is OK.
Interesting about the tumor markers. Mine went down, down, down for 8 months, plateaued and have now started to rise. Scans for me in February (last ones were a year ago). I'd be thrilled if they showed ix-nay. Or at least no change.
I've been out of town and haven't responded to everyone else, but in my 11 month experience on this drug, side-effects come and go. Some months I have them, some I don't. Except that every two months like clockwork I get a cold.
Happy New Year to you all! May 2017 be better than 2016.
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My wife has a similar situation as yours. Her tumor markers kept going down for many months (from 905 to 151 over 6 months) but not it has started creeping back up again to 200 over a span of 3 months. Not sure what's causing it and she has no symptoms of any kind. Scans are due this Thursday and lets see whats going on.
She is taking Ibrance + Letrozol though and not Faslodex.
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Hi Letmywifelive, I take them all. Started with letrozole and Faslodex before Ibrance came on the market. Fun times!
My onc basically said "well I guess the tumor burden is rising". I don't have symptoms either -- at least not from the cancer.
I hope her scans turn out to show nothing!
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Thanks pajama. Her scans are scheduled for today. We will know soon. Please pray for her.
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Hi Letmywifelive,
I started Ibrance and Faslodex in September when I was diagnoses with bone mets. My MO insisted I go to Dana Farber in Boston for a second opinion and also to have another MO looking over me. My tumor markers were 222 when I first had blood work before any treatment. The next time they went up over 335 and remain about the same when they test the tumor markers. My MO from Dana Farber explained that we should not be surprised if the tumor markers spike up for a while. I believe it has to do with Ibrance. I asked my local MO and he said the same thing. I have not yet had another scan yet, but I'm sure it is in the making. I am almost done completing my 4th cycle of Ibrance. My liver enzymes go up and down too. Not sure why, but they think it is due to Faslodex. I'm not sure, but I worry about that as well.
I hope your wife's scans go well today. Keep us posted. This is just an ongoing worry that we are all living with and so stressful at times. Good luck today.
Anita
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Thanks Anita. Will keep everyone posted. Should know latest by Monday. Initially her tumor markers fell drastically when treatment with Ibrance began. That continued for about 6 months before it started rising again. Let's see what's in store for us. Feeling down.
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My wife's prelim results came back. The bone mets are stable but there are some spots in the liver. Final results are still not out. She is totally devastated. Will talk to doctor next week about options. I am feeling very very low today.
Ibrance worked for no more than 6 - 9 months then.
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I'm so sorry. It could be that Ibrance just wasn't the drug for her and the next one will work great.
I'm not just giving you platitudes. Ibrance suppresses CDK4 & 6. If your wife's tumor doesn't express much of that the drug won't work so well.
Progression is really hard news. Please give yourself a hug from me and one for your wife as well.
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LMWL - Your wife's progression is suspicious of a new mutation, to me. Consider a biopsy of the liver mets with genetic testing or, even better, some functional testing. The later test is powerful because the treat your wife's cancer in vitro with various options. Functional testing makes it more likely that the next treatment is known to work on the current mutation in her liver. Also keep in mind that the bone mets appear to be responding to Ibrance and Letrozol.
The emotions that come with progression are what they are. Grief, anger, frustration, whatever you feel has my respect. However, when it comes time to get back in the fight figuring out what is going on and get a new treatment going you will feel better. I am confident you will figure this out. As Pajim says, the bad news is that you have progression, the good news is you can find a treatment that will work.
This is a trial that is on the top of my short list should I progress.
Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer
In fact, I thought I had progressed in December (clerical error!) and I emailed the NIH about this trial. The responded immediately to initiate the process of screening me for this trial and all the NIH trials. I was pretty excited and then I found out I hadn't progressed (!?!).
PM me if you want the short list of treatment options and clinical trials I was considering. But the key is to get a biopsy so you know what you are dealing with.
Hugs to you and your wife.
>Z<
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Thanks Z. Going though the different immunotherapy options now. Will know better after the biopsy is done and we talk to our MO with detailed scan reports in front of us.
Is there anyone on this forum who failed on Ibrance + Letrozole but then continued with Ibrance + Faslodex (fulvestrant) ?
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LMWL - Yes, I had progression on Ibrance and Letrozole. My onc added Faslodex to the mix, so I am currently on all three. The Ibrance plus let was still working in the majority of places, so he kept me on it and just added the Faslodex.
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Thanks Moissy. I suspect there is something similar going on with my wife since her bone mets are stable with her current regimen on Ibrance + Letrozole but she now has spots on her liver. During one short phone conversation we had with her MO (before the in person next week) .she mentioned that Faslodex can be one option for her going forward. I will need to ask the her if that should be in addition to my wife's current treatment plan.
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Wishing you well, Let My. Hope you get some good answers soon.
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LMWL -
When I thought, in December, that letrozol + Ibrance had failed, the frontrunners to replace letrozol/Ibrance were Faslodex alone or Faslodex with Ibrance. We might replace the ibrance with ribociclib in the spring when it is supposed to come out. Faslodex is the go to second line treatment after letrozol. I know you are considering Xeloda, but generally we want to stay on hormonals as long as we can. Bestbird's guide discusses additional hormonal options even after faslodex. I'll be looking at all of them if the time comes.
I'll probably take my first swing at immunotherapy after exhausting the hormonals but BEFORE I go to chemo. My current understanding is that immunotherapy works better with a lower tumor load. Although most trials now are for late stage patients in a last ditch attempt, it looks like it works better early on.
What you do next, however, needs to be informed by the biopsy the biopsy says. The hormonal status of the new tumors is important to know, but keep in mind that even TNBC can be responsive to hormonal treatments. If she is still ER+, consider testing for the ESR1 gene mutation that indicates resistance to hormonal therapies. It will give you a sense of whether the new cancer is getting around the letrozol or the Ibrance.
Genomic testing like foundation one is something to consider because it can guide treatment now and in the future and give you access to clinical trials. That said, I am having genomic testing done to get into clinicial trials and humor my onc, but I am not a huge fan. The studies have not shown that the genomic testing is really predictive of response to treatment. I am more interested in functional testing and particularly the testing done by Rational Therapeutics.
The key is to get enough material from the biopsy to do all the tests you might want to consider down the line. Although the procedure is trivial, you don't want to have to go back for more material later. It's one of those things where you have to think a few steps down the line.
Good luck this week.
>Z<
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