Ibrance (Palbociclib)
Comments
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eelder - i don't think there is any right way to feel, but any attitude that allows you to keep fully living and fighting and generally showing up for life seems like the something to cultivate. that weird terrified/ hopeful place is a rational place to be. that is where i am. denial is also great option as long as you still have an eye on the ball with respect to treatment decisions and protocols. i have had periods when i was incapacitated by terror. i also get depressed and somewhat disfunctional when my health take sa bad turn. the goal is to enjoy the life i have. achieving some combination of positive and realistic is my plan. given what is going on for us, sometimes it takes some imagination...
Carol - thanks for the information on the half lives of these drugs in our systems. i am on my second week off ibrance now. feel much better. tooth not healing super fast. may be the ibrance, but i have some history of wounds not healing.
>Z<
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eelder, you describe perfectly what I think most of us are feeling. Terrified, optimistic, sad, happy there are treatments, some PTSD and for me, I think I've been through all the stages of grief. You're right about friends just not understanding what this feels like, they need to "walk a mile in my shoes" to really know. Unless you've been here, you can't really know. I have a very dear friend who has maybe a few more months to live, and I believe we have been given this gift of walking this journey together because it helps both of us to be able to share the gritty details. Our friends love and support us but they really don't want to know it all.
Z I hope your tooth is on the mend. I go back to the dentist to have the permanent filling put in my root canal on Thursday. It means more shots to numb it and another hour with my mouth propped open but it sounds a lot better than your experience.
Carol, praying for good news from your MRI. please keep us posted.
Dee, Ibrance kicked my butt with fatigue even as my counts were ok in the first several rounds. It seems to get a little easier the longer we are on it. I'm in the last week of rd #8 and some days, I feel almost normal,with aches and pains I choose to think are caused by my age. "Nothing gets better when you get old".
Have a peaceful, pain free night everyone.
Faith (in the future
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Hi All-I just posted in bone mets thread, but will share here as well with a bit more info. I had a great meeting with MO this afternoon. MRI confirmed liver mets and my next line of treatment is faslodex.
I asked MO about my chances of it working. He used fishing as an analogy. You can catch a big fish at 5am with a worm, the next time you go to the same spot with same worm and catch nothing, so you try a different spot with a new bait. Then you wait. I was surprised that adding back in Ibrance with faslodex wouldn't be an option. He said he didn't think Ibrance was my friend so he didn't want me to hang out with it. Not enough research supports that keeping this in the mix would help me. Drug has not given results that this would be any better then just faslodex alone.
As far as clinical trials, he felt this was the obvious go to. The M13k mutation is the only way I would really benefit from the phase 3 trial and that testing would take 4 months to confirm, we started the ground work for that. He also said he's not a fan of the SE from the trial drug and you can't qualify for it unless you have the mutation. So that was the information I got from him. He also gave me the green light to take any supplements I want that are over the counter. So I can't wait to start! He also said immune system findings with breast cancer is around the corner. He is one of the MO at Dana Farber that uses Twitter. If you're on Twitter and want to follow him with updates on what he tweets in box me.
I had my loading dose of faslodex today. Felt absolutely nothing in regards to pain. Easy like Sunday morning. I will be leaving this group but I am sure we will cross paths at bone, liver or faslodex!! And radical remission.
Roar and then Hugs,
Carol
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Carol - your relief and comfort with this change in treatment come through in your posts. this is an important sign you are on the right track. I am very interested in what you are doing. Are you testing for the PI3K mutation? Never heard of the M13K mutation. If you test positive then you can join the trial in four months?
Looking forward to hearing all about this ...
>Z<
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Z, it was a typo. Lol. Yes I'm being tested now for all the mutations. It takes 4 months for results. I dread thinking about this-- I talked with the research MO and he says lots of options before chemo. This MO had a different tune, but faslodex was both MO suggestion. I think after that unless a mutation is found it is Xeloda. My counts are up some 2.0 for white cells and 1000 for neut but it's been 10 days off of Ibrance now and I'm still beat up. I don't have the MRI report of liver but the biggest met was 1 cm. I wonder why they don't biopsy it? And CT scan said there were several.
Roars and Hugs Carol!!0 -
Carol - Glad you are on a path forward. Thanks for the information you've shared. It helps all of us as we think ahead to the next treatment. So you would be able to get into the trial later after you have already started Fas if you possess the mutation?
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Wishing you the best Carol! You sound upbeat and positive - WONDERFUL.
I'm wondering.... should we all be asking our oncologists to test us for these mutations so we know? That way when we need to move to the next treatment we're "ready" with knowledge in hand?
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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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Carol, you have such a great attitude and I believe that's so important in fighting this cancer or any cancer. I will be praying that faslodex kicks this thing into NED for you. I have to say, I was so sorry to hear your news because while it gives me hope for other treatments, it also scares me, because like you it was a long time (25 yrs) before mine came back. I will be following you on the bone mets thread.
Hugs, Faith (in the future
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eelder - there are at least two commercial tests that can search for actionable information in the dna of your cancer. we can take the test any time if we are willing to pay for it ourselves. insurance needs an argument that the test will inform a treatment decision. if you don't have progression, there is no impending treatment decision, so no support for doing the test.
one could argue that with metastatic cancer, odds are there will be a treatment decision down the road. however, the tests and treatments are in such dynamic flux, i am thinking i'll wait until i really need it to ensure i get the latest and best test. both tests have evolved a lot in just two years.
that said, i think you make a good point. while a lot of genetic tests are in development, there is a core set of tests that is most likely going to give you actionable information.
Here are some current screening tests. They are overlapping but the not same test. Even choosing which test is hard. I believe there is some assistance available but they cost $5K+.
Many major cancer centers are developing their own.
I wouldn't be surprised if Carol got none of these, but rather a subset of specific genetic tests of interest to the clinical trials.
And finally, the error rate in these tests is currently very high.
>Z<
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You're the best Z! So informative, thank you!
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Cross posting
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 auroaya,
If my onc wanted to switch tx one month after a stable PET scan, I might seek a second opinion, based on what he has been saying to me about tumor markers this whole time. He says you can't rely on them, and you shouldn't base your decisions on them. They may be useful in some patients to indicate a trend.
I believe somewhere in this long thread there was a discussion about when to change treatments. It seems like someone said that treatments don't just suddenly stop working altogether, but they become less effective and it is better to ride that arc of effectiveness a little bit longer after it starts to descend, in order to get the most time out of each treatment.
And there is often a jump in TM's on Ibrance, even when it's working.
I wish you well. Do you have the TM numbers? Could we know what they were before and what they are now?
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My oncologist says you can't always rely on TM's. Some people's TM's don't tell much and others seem to be so informative they can eventually take the place of scans after a while. I am someone whose TM's were never high. At diagnosis my TM's were in the 40s. That's it. Now they're in the 20's (normal range). They have since stayed there. I am responding to ibrance. The fact that my TM's went down mimics what the scan showed in July, however, they were never high to begin with. So, my doc says she'll still do the TM tests monthly, but will rely more on scans to determine response.
I would seek a second opinion. And I'd probably ask for a scan first before terminating this treatment. Sounds like your last scan showed it was working. While I understand not wanting to get scanned any more than needed, this would warrant another scan.
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auroaya - frankly, your oncologist scares me. at a minimum, get a second opinion from someone with a lot of patients on ibrance. but i am generally not impressed and would consider switching in your shoes.
ibrance takes months to work. on average 4 cycles but it can can take 12.
my tumor markers have continually gone up as my tumors have fairly quickly disappeared on this protocol. this is a well understood effect of ... letrozol. a drug that has been around for twenty years. there are 10's of papers on this topic. tumor markers are often random or counter-indicative of what is going on.
I am hopeful that your second opinion doc feels you don't need a scan. unless there is more going on than you reported in a short post (highly likely) just wait 3-4 months until you would normally get scanned and see what you have going on. you don't want too many scans.
hang in there.
>Z<
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Z, so interesting TM's can go up as a result of letrozole. I had no idea. My oncologist says TM's are definitely worth looking at, but by no means should be the "one thing" we base decisions on. I think if you have a sudden sizeable increase in TM's it would warrant looking at your case through other angles, but Z is right - ibrance can take a while to work and you haven't been on it for THAT long.
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Hey everyone, I'm about to start Ibrance and Letrozole (as well as Lupron shots). I'm nervous about the SEs I've been reading about. Any tips beyond exercise and drinking water (both of which I have covered)? I thought I was going to start Tamoxifen and was surprised with this tx plan from my Onc earlier this week. He said he wanted to use a bigger gun lol. I've just finished chemo, surgery, rads to breast and bone mets. I'm having a bone scan soon to see how all of that did and a brain MRI as I've had a couple of weird falls and a little dizziness (truly hoping that just from my clumsiness and lack of sensible shoe choices - I live in Los Angeles, therefore I wear FitFlops basically all the time)
Is there anyone who feels the Ibrance protocol is a breeze?
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Welcome, jen.
I spent 3 weeks reading through this entire thread last month. I don't recall anyone who thought this protocol was a breeze. Everyone had some unwanted effects from either the Ibrance or the AI they were on, or both. (It's definitely harder than Tamoxifen, which I took for 18 months.) But most felt that it was easier than chemo, so there's that.
I read that some had nausea with Ibrance, especially after eating dairy. I haven't had any nausea yet, but I'm eating a plant-based diet. I also gave up alcohol, and noticed I had fewer hot flashes. Oh, and there is some anecdotal support for taking Claritin to help combat the most notorious Ibrance effect: fatigue.
I've been on it for two weeks, and I've noticed it is hard to get out of bed lately, even though I've always been a morning person. Once I'm up, it's better. Had to give up breakfast so I could get more sleep in the morning.
But if my next scan is good, then it will be worth it.
ETA: Fitflops are da bomb. Nothing wrong with that.
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Hi Jen, next to chemo, I think Ibrance is a breeze! It all depends on what you are comparing it to. Tamoxifen was easier, but I had a lot of progression on it
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Couple more (very minor) tips: I set an alarm on my phone to remind me to take my pill. Otherwise, I'm terrible at that. And I smoosh the pill into some marshmallow fluff, before I swallow it, so it doesn't irritate my throat (sort of a scratchy feeling after taking the pill, which some have remarked on.)
And I'm always willing to put in a plug for acupuncture - It is amazing at taking care of side effects. I go once a week.
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Hi Jen,
I am about to finish my 5th cycle of ibrance/letrozole (Lupron shots every 4 months). I might be in the minority, but I've had a good experience on this treatment. Aside from occasional fatigue (I'm a mom to an 8 year old boy and 6 year old boy so let's be honest.... I get tired from THAT), I haven't had many unpleasant side effects. I've been feeling well, living an active life. People remark constantly that I look, act, and seem as if nothing is wrong with me. I have had rather significant hair thinning, but others claim (and I believe them) they don't notice. I notice, but I'm getting over it. My oncologist tells me no one loses all their hair on this, but thinning isn't uncommon at all. I've been told it will stop at some point. I do get hot flashes, but they're okay. I dress cooler and that helps.
I have often wondered if perhaps the Lupron isn't the biggest culprit in that fatigue/hot flashes (when it happens). Both times I had the Lupron shot I felt tired and "out of it" for a few days, but then that went away. The FIRST time I had the Lupron shot I had achy joints for 2 weeks. Daily turmeric in my green smoothie (1 tsp daily) has removed any aches I had. My doctor told me the Lupron can cause that so be prepared, but maybe you're lucky and don't experience that. Turmeric though helps! A lot!
This treatment was my first line - sort of. When I was diagnosed they put me on tamoxifen for 3 weeks while we waited for my HER2 status to come through. My results kept coming back as equivocal which caused the delay. Naturally I was anxious and desperate to start treatment so my doc put me on tamoxifen until we knew for sure what route we were going to take. After 3 weeks I began the Lupron/Letrozole/Ibrance plan.
After 3 months I had a PET scan which showed the cancer to be regressing. At diagnosis I started with a 2 cm breast mass, an affected node, and 3 liver lesions. After 3 months the scan showed the node no longer contained cancer, one liver lesion had disappeared, the other two had shrunk by 40%, and my breast mass had also shrunk quite a bit. I was thrilled. This treatment has worked for me. I get scanned again this fall - 3 months, maybe 4 months. My doc feels comfortable waiting 4 months if I want to. Hopefully we'll see with that scan that the cancer continues to regress! I'm hopeful.
After that scan we will discuss the date for my lumpectomy. I've been told there's NO reason for me to have a mastectomy - it's possible my mass will be tiny by then. I will recover for one month and then have radiation. Throughout this time I will remain on treatment and will continue on this same treatment after it's all over. Hopefully I stay on this treatment for years and years - there are people who do. My blood counts have remained steady for the past 5 months. Because of this I have been able to remain on 125mg, though I know many here who have dropped their dosage and they've been FINE. It seems if it's going to work it will work regardless of dosage amount. I used to get weekly blood draws and then they moved me to every other week. Now I'm getting monthly blood draws because my counts have been so steady. All in all, given the response I've had I have no complaints about this treatment. If anything, I have total gratitude that I can be treated in such a way that allows me to live comfortably and freely while still getting my cancer under control.
As far as other things I'm doing.... I started walking a TON the day I was diagnosed (5 miles per day). I drank tons of water (always did so no change there), moved to a largely plant-based diet with organic chicken and wild fish, cut WAY back on sugar (almost none), cut WAY back on wine (very little), and am taking hoards of supplements (my dining room table looks like a pharmacy... frightening). I also take detox baths during my off-week from ibrance and I've started meditating sometimes and focusing on deep breathing. I stopped teaching to focus on me and my health. My life has changed. I almost don't remember the old me.
A few questions for you, Jen, as we're ALL learning here....
1. Why did they do surgery/radiation first for you? I know there's debate about doing surgery/radiation at all when you're stage 4. I'm planning to have both so I definitely don't question the decision for either. I'm curious about the decision to do it FIRST before treatment.
2. Why didn't they start you on ibrance since it's considered "first line" as opposed to the other chemo first? Had they discussed ibrance with you at all?
Lastly, I love flip flops too. I used to live in LA for years and I'm sure that's where I picked up the habit. I developed plantar fasciitis though with all my walking and had to stop walking for a month and get that under control. Was told flip flops and barefeet are bad
Huge disappointment. Definitely not telling you what to do, but if you're doing more exercise suddenly AND wearing flip flops you MIGHT end up like me.... hobbling around Certainly not serious like cancer, but can put a wrench in your exercise plan so be aware.I hope this helps. Overall, I've been someone who has tolerated this treatment very well. If I continue to respond and feel the way I'm feeling I will be overjoyed to remain on this for years and years....
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LovesMaltese-
Fantastic information from your Dana Farber MO! But like some of the others I'm still a bit confused. If the PI3K pathway gets upregulated as part of the process by which the cancer became resistant to AIs, such that now the cell growth is driven more by the PI3K pathway than by estrogen- doesn't that mean there is no reason to test the cancer for the PI3K mutation earlier?, rather, one would want the information on the AI-resistant cancer cells. So doesn't it require a new biopsy? And presumably for that they would choose to test the liver mets?
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Hi ladies - got my PET results after 8 round of ibrance+fas. Good news is sclerotic healing of sternum and L1-3. Yeah! spot on T-10 gone! Not so good news is there is one nodule in right lung upper lobe, which also has some scarring. FYI I get thorocentisis every month to drain left lung, which was how stage 4 was diagnosed last Xmas. Out out damn spot, says Lady Macbeth. I will be going to IR Dr who drains my lung in 2 weeks. Any thoughts? I feel protocal is really working, but having a node leapfrog from one lung to the other leaves me crestfallen. I am on round #9 @100, fatigue is a little better, hair loss is the same (meaning I use a hair halo everyday at work), eyes still water unless I take Claritan. Jen- for me ibrance is tolerable, but I was the lucky 25% who had major hair loss. Z - so sorry about your tooth. Do you feel better now? My experience is that ibrance slows healing. One cut on my wrist (from my hobby gardening) took a long time to heal and became infected. Auroaya - ibrance can take 6 cycles to kick in, please get second opinion. Next protocal may be more harsh. Lovesmaltese - please keep us posted on how you handle Xeloda (Madame X ).
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Ooh, Eelder, your comments remind me of something I've wondered about the different Ibrance doseages- I've been on 125 for a year, with no problems other than hair thinning, my white counts dipped the first 2-3 months, and then my body adjusted and that all went away. However, for people who have problems with white counts and have to go on lower dosages- can't that just mean that they are better at metabolizing the drug, since the white cell levels are direct target of the drug? And If so, of course the lower dosages are working, its a sign that they have lots of Ibrance in their system- do you know what I mean?
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HI cureious.... I don't really understand how it all works. It appears that some have their dosages lowered and they're FINE - no progression and healing. Others, like me, stay on 125 and we're fine. It's a mystery to me. Not sure the cause?!
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Oye, MBC is so complicated! A recent report in Nature finds that most ER-positive HER2-negative metastatic individuals actually have a mixture of HER2-positive and HER2-negative circulating tumor cells in their system, and that these cells can spontaneously inter-convert, and such patients could potentially benefit from additional combination drug therapies.. Well, maybe this is progress?!
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Cure-ious - Thank you for your thoughtful questions and your references. When I am not having a panic attack, I find this disease very interesting.
Jen - I would try the first cycle without a lot of tweaking and even go a few cycles if the side effects you do experience are not too bad. My side effects changed over the first few cycles and they were not indicative of what I experience now. Many people don't have any side effects. You are very healthy and exercising and eating well. These are the key factors that influence your experience on this drug. This drug is a marathon not a sprint. You have time to test and experiment till you get into a groove. With any luck you will be tweaking this protocol for years.
If you do have problems, then you can experiment with different tricks. Claritin has helped me with the fatigue. It is easy to find out if it works for you. Just try it one cycle and see if it works. But I would go into this expecting everything will be fine.
The kind of full court press that eelder described where you address all aspects of your health is critical. This is a protocol that does allow you to maintain your overall wellbeing and I think that is one of the reasons it works. You clearly have a handle on this aspect. Keep it up.
I am curious why you got chemo and surgery first as well.
All - thank you for the thoughtful discussion. I am on my second week off Ibrance as I recover from a tooth extraction. Mostly off pain killers. Second attempt to remove stitches tomorrow. I feel pretty awful today even though I am not on Ibrance. Stomach pain, fatigue, lots of hot flashes. These past few weeks I've added pain killers and antibiotics to my already considerable pill protocol so it could be anything.
The protocol is quite tolerable, but when you have some problem on top of it, it can get tough. Something to keep in mind ...
>Z<
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Jen, sorry you have to be here but welcome to the group with a whole lot of smart, helpful and very nice ladies. Certainly, give yourself some time to get used to any side effects. The first few cycles really knocked me out with fatigue, some mouth sores and digestion issues, but it is all getting better or am I just used to them as a part of life now. It is so much better than chemo was way back 25 yrs. ago. I'm in the third week of rd.8 now and it is still different everyday. Tuesday I was exhausted, Wednesday was good. Today, ok and I had the last half of a.root canal so day ended up bad.
Z, good luck with dentist tomorrow, tooth pain is the worst.
A few posts back, Stephanie LTS posted a link about unusual treatments when AI's stop working or ER status changes. If you haven't read it, I found it a very interesting post about ways of treating BC. She is such a font of knowledge and a great warrior in this fight we are all in.
I have a question for all of you, how strict are you on the timing of your Ibrance? I know we should take it about the same time each day but that is not always very convenient. I usually take it after breakfast but some days, I'd like to take it after lunch. Does anyone do that and has your onc. ok'd it?
Have a peaceful, pain free night everyone,
Faith (in the future
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If you google and peruse the pharmokinetics of Ibrance, you will find that there is some benefit to taking it with food. A small percentage of women who take it on an empty stomach get a very low dose.
Some folks in israel found that cancer in mice grew at night, which set off a flurry of articles about how you might want to maximize the blood plasma level of drugs that inhibit cancer growth in the night. Ibrance takes 6-10 hours something like that to peak in blood plasma. There may be an argument for taking it after three pm.
Other than that I haven't seen any guidance on when to take it.
I try to take it with an afternoon snack or early dinner, but mostly I just try to remember to take it. The main thing about having a consistent time is that it helps you remember ...
>Z<
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