Faslodex + Pablociclib(Ibrance) treatment combination -
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I see many of you are taking claritan what does it help with? My allergies are awful so going to start taking it Wondering what else it helps with on this protocol.
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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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Keetmom - I've taken loratadine daily for allergy symptoms for a long time. I have found that it reduces fatigue from Ibrance. I am pretty sure that it is addressing the Ibrance SE not allergies. it reduces fatigue in the absence of allergens or other allergy symptoms.
Clinical trial of one over here. However, I got the idea from a few ladies on Inspired who also use loratadine (Claratin) to manage Ibrance related fatigue.
It's not magic. I am still tired and spacey, but MUCH improved. It's worth a try.
>Z<
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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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Hi, Aurora. I think you're doing the right thing asking to stay on your current regimen. Ibrance is a really strange drug, and if you go back and read some of the original trials results, you'll see that results frequently don't show up until at least month 5 or 6. Also many of us have had excellent scans, as it sounds like you have, yet still have increased TMs -- especially in the first few months. And scan results always trump TMs if there's no identifiable progression.
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Hi Aurora,
I would also trust the good scan you had a month ago more than rising TMs. How are you feeling? As long as you are not having any new symptoms, I would ignore the rising TM's (easier said than done I'm sure) and rescan in another 3 months. It does seem that there have been many ladies on the Ibrance thread with good results who had TMs rise at first. Good to "see" you again & best of luck to you!
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Aurora, I third the suggestion. It feels like your onc is jumping the gun. Scans are way more important than tumor markers.
When I went from NED to two spots, we waited to switch treatment. Scan again in a 4 months. We waited almost a year! The scans were getting slowly worse, but not enough to switch. You feel OK?
Wait three months, scan again.
If then the scans are not good, the next in line is [usually] either A/A (Aromasin and affinitor) or Xeloda.
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I too would insist on another scan before ditching the ibrance/faslo combo. TM's aren't always reliable.
Next up, from what I have read would be a chemo. Possibly Xeloda? I will be interested to see what your oncologist comes up with!
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Just had my second faslodex shots (loading dose - first shots were two weeks ago) and had blood work done (two weeks down with Ibrance so far). My WBC was 2.4, which the nurse said was what they would expect it to be, and when I asked about being out around a lot of people, in crowded places, she didn't seem too concerned - just said to wash my hands a lot. I was just wondering if others had fairly similar blood counts, and do you avoid large groups of people when your numbers are low?
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Hi Amy - My UCLA onc suggested avoiding raw fish and salad bars (too much bacteria). Meanwhile I have taken a cruise and flown to Europe. I am on round #9, now at @100 which I take at dinner. Aurora - I agree with Pajim and others - get a second opinion. My TM's went up before they went down, as ibrance + fas often kicks in at round 5 or 6. Pam - I got spooked by my PET last week when a node showed up in my "good" right lung, but now taking your advice. My TMs are down and I feel ok, so hoping this round knocks the s*** out of that node. Sternum was fine/sclerotic, as was L1-3, pleura ok too. So this combo has been busy. (())
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AmyJM, WBC of 2.4 sounds fine, especially on 1st cycle. I did avoid germy situations during week 3 and 4 when I was first on Ibrance, but I don't worry about it any more. (Edited - I should add that I have been fortunate in not suffering from low counts and have been at 125mg since day 1) I do make sure I wash my hands at every opportunity when I am around a lot of people, come home from shopping or the clinic, etc.
Lalady, A mixed scan like that is tough, mostly good news and a little bad. Is it possible the node that lit in right lung could be infection or inflammation and not cancer? Sounds like you have had a great summer! Keep on!
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I was diagnosed with neutropenia this past Monday after being on Faslodex + Ibrance for two weeks. I was told to not eat any raw vegetables/fruits I could not peel, stay away from anyone that was ill and to practice good hand washing hygiene. No other instructions/information. I know to call my onc if I spike a fever, but what else do I need to know? How long will it take for my immune system to rebound? Should my counts be checked before my next appt which is two weeks from now? Should I attend my grandchilds birthday party tomorrow? Should I go to church, shopping, etc? Thanks for any and all advice.
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Thanks Jobur - I will learn more about the lung node when I see my IR doc to drain left lung in 2 weeks. Hoping for the best. DeeDee - I had neutropenia in early rounds too, wash hands like crazy, carry baby wipes for door knobs, and go to the birthday party!
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My understanding is that they haven't found a relationship between neutropenia and an increased rate of infection.
When you are dealing with cancer and the drugs, it's best not to get sick on top of it. I've been doing fine on Ibrance except when I had to deal with some other infirmity in addition to the side effects.
Definitely wash hands. I find that wounds take longer to heal and infections longer to beat. But keep in mind I have never had neutropenia.
I am starting cycle 8. I don't let any of this keep me away from people or kids. But I wash my hands, get a good nights sleep, etc.
>Z<
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DeeDee, protocol is to draw blood every two weeks for the first two cycles, then monthly after that. The nurses tell me that so long as my neutrophils are 1000+ I should start the next cycle. FYI that's pretty low. I've been living in the 1200 range for months now. That's technically Grade 2 neutropenia.
I carry Purell but otherwise I don't worry about it. My ID consult agrees with zarovka. When it comes to viral infections they worry much more about leukocytes. That said, I've caught two colds in six months. It felt to me like they lingered longer and were worse than I usually get.
My advice is to live your life. You can't go through life missing things like a grandchild's birthday party! That's more important than worrying about catching something. Keep your hands away from your face.
Lalady, I hope the lung node turns out to be nothing. I've had a small one the entire time. They finally decided it wasn't a met, though it gets mentioned every scan.
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Pajim - happy to report the node in right lung is ok - turns out it was on an earlier scan, but not a met. whew! Still have activity in left pleura, but that's it for now. Sternum and L 1-3 are healed/sclerotic. Had left lung drained yesterday and start round #10 next Thursday. My eyes are still drippy and have hair loss (wearing hair halo), but this protocol is working. Plus I am still working and now planning a 1 week Xmas cruise to Nuremberg - Vienna.
Z - how are you feeling? Jobur - how many rounds are you on now? Do we have any ladies here over 20 months?0 -
Lalady - Wonderful news. Scan results are crazy inaccurate and variable. It makes me worry when people are changing treatments based on minor changes in their scans, since it is so likely to be a mis-read or an error. I am glad you got to the bottom of this change so you can focus on that cruise to Nuremberg.
>Z<
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Wooooo! Glad to hear it.
I agree that switching treatments due to minor changes is iffy.
Says me who has had the month from Wacky Wednesday. (burning feet, chills, fever, rash, chest pain. . .each one came and went, only the last is still with me) Anyone ever tried to diet whilst on this regimen?
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Lalady, wonderful to hear that you are stable and no progression into other lung!
Another international adventure sounds like a perfect way to round off 2016 - enjoy!
Good healing wishes for you and all, Stephanie
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Hi there! I have been here even longer than you. I won't get into the 12 years. I am also stage IV and just started the Faslodex/Ibrance June. I started the Faslodex injections first and felt immediate relief in my breathing. I was originally on Aromasin, for years. Once Ibrance was approved, it was started at 125 mgs. I was ok, yet my blood counts plummeted. My dose was lowered to 100 mg and I still went a bit too low. I had no extreme side effects from either. I was taken off the Ibrance for 3 weeks and just restarted again. I feel a little fatigued and loss of appetite. Otherwise, I can handle this. I have endured much worse! Wishing you the best!
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Good morning,
Just a quick update, MO and I agreed to continue Ibrance even with slight progression and then willscan again in November. Her comment was, "radiologists are trained to find stuff therefore, they found stuff"
When other treatment options were offered such as Xeloda or Tamoxofen, I felt I was dipping into a finite bag of tricks and was unwilling to start down that road. I asked if there was justification and support for continuing Ibrance and Faslodex and was told definitely yes! So I'm completely comfortable with continuing this course in September, October and possibly November before another scan.
Has anyone had similar decisions and experience? I'd love to know your outcome.
Have a great weekend. Heading over to our Parish Fall Festival where I get to help with the Country Store...selling yummy baked goods, crafts, honey, jams and all sorts of homemade goodies. I think I'll keep my cash at home so I don't end up buying out the entire store!
Amy
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Amy, I haven't been on Ibrance, but I probably continued my initial trial time on faslodex (totaled 6 months) longer than I should, because it was easy to take and I wanted it to work.
I've stayed on many regimens because they slowed progression, not because they helped me achieve remission or even stability.
Goals of treatment vary by patient and practitioner.
My oncologist of 24 years and I are compatible in being willing to live with less than optimal results to achieve the best possible effect with the least possible unwanted side effects.
Everyone's tolerance for living in limbo is different. Cultivating the Zen Buddhist "don't know mind" has been a successful survival strategy for me. Others want more bang for their buck, more certainty, more instant results sooner and bigger and better.
I've taken the slow route with cancer and the cancer has taken a similarly slow route with me.
sending warmest healing wishes, Amy, Stephanie
When things get too dark and dire, I turn to the blues and these reggae hits.
This refrain helps me rely on my faith leading me on:
This one to face those many rivers I've needed to cross, though I rely on others to keep me alive and well!
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Hi Amy, glad to hear the scan was 'almost good'!
Sure, my team (DH, onc, me) did the same thing. I'd been NED on Faslodex for two years when a couple of spots appeared. We took a wait an see approach. Scanned four months later, scan maybe the same. Wait some more, scan in four months. We stalled for an entire year!
I added on Ibrance in February. TMs headed south but we haven't scanned since then so I don't actually know if it's working. If it weren't I think I would know it.
The approach was a little nerve-wracking in the beginning, but I find I like it! I came to realize two things: (1) finite bag of tricks. (2) I will never feel as good as I do now (or did then). Each successive treatment will have worse side-effects. Why should I rush to cope with more symptoms?
[Yes I do realize that many women have a worse time on one hormonal then a better time on another but that's not how it's working for me]
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I am on the same "wait and see" approach, at least for this month. I had a PET scan last June and it showed healing in bone mets and no increased new growth. But my TM's in the last two months have been rising so my onc. brought up switching treatments to which I requested more time and she agreed to give it a whirl one more month. I'm only in 4th cycle of Ibrance/Faslodex so when I see at the end of the month I'm going to request even more time and I'm praying for TM's to go down. Coming to this thread makes it easier to deal with this disease. Thank you all.
Aurora
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Stephanie, 24 years, that's amazing...I hope we can all enjoy similar longevity. Thank you ladies for weighing in.
Amy
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Lalady, Yay! For the right lung thing being B9! I have lost count which cycle I am on now. Started last August, so a full year would make it 13 or 14. Except for my week off fatigue and usual aches and pains, I am feeling great. You?
Pajim, Sorry you have had such a weird, rough month. Hope things settle down. This drug seems to be different in that way, one month minimal se's, the next month itchy as hell, mouth sores, etc.
I feel like I am learning (with all of your help!) how to deal with mbc as I go along. First sign of progression, I was ready to jump to the next tx when my mo suggested it. I was in a big rush to add Ibrance, even though I had a good response with Faslodex. Now I see the wisdom of slowing down and living with a little progression if QOL is good on current tx. How much is too much and when is it time for a change? Hoping each of us will know what is right for us when the time comes.
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God bless you darling!
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Just had my third set of shots on Friday. My blood count was just barely too low to start the second cycle of Ibrance though (anc was supposed to be 1.0 or better and it was .9). So, I go back next week to check it again and hopefully, it will be up.
I've had a pretty good go of it so far. Just a little sensitivity at the injection sites and some hot flashes, of course, but not much else really. (Tiredness and occasional irritability may be due to being on an anti-hormonal, or may just be due to stress and too little sleep!). I try to always walk some after the shots, which may help some as far as pain at the injection sites. Immediately afterward, I do feel just a little woozy and can feel it in my bones a little (especially in my spine and jaw) - not painful really, more like mild pressure, similar to what I sometimes get after a Zometa infusion. Something new this time though was that my lips felt a little numb, like when the Novocaine shot from the dentist is wearing off. Has anyone else had that after the shots?
I didn't get the TM results before I left, but I've heard that it may take a few cycles to go down, so I'm not worried about that.
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Amyjm...I got mouth and cheek numbness after zometa and it lasted for hours.
Lita
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AmyQ - I haven't had to deal with ambiguous scans myself yet, but from what I read you have a smart oncologist. Unless you have some super aggressive cancer, it takes a 20% increase in tumor size confirmed in more than one scan take over 3month+ intervals to really confirm progression. This due to the inaccuracy of the scans. There is a lot more intrinsic variability in the scans than the radiologist communicate. IOW, in other words, if you had two scans in the same day, the difference in results could be significant.
If you are on a treatment that can you tolerate, it's best to drag it out for a while. We don't have a whole lot of great options and it does seem like if we can hold out there may be other options coming on line.
And tumor markers can go up on this regime even as it works. TM's can be very misleading, particularly on this regime.
>Z<
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