Ibrance (Palbociclib)
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My wife is considering at some point in time a switch from xeloda to palbociclib. Any idea of the response rate to palbo? This would be her first anti hormonal since tamoxifen ended a year ago with liver mets discovery. Her biopsy shows fully Er/Pr positive.
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Cure-ious - There is a health practitioner (nurse?) on Inspire named Elizabeth (EV11) who has ERPR+MBC and has been on Ibrance for over a year. She is working with the research doctors who developed Ibrance and the Ibrance protocol so I follow her posts carefully. She had this to say to someone on Inspire who wanted to take Neulasta to increase white blood cell counts. I am quoting the whole thing because she has good insight into both low counts and dosing.
Neulasta is not really a good approach for long-term management of Ibrance-induced neutropenia...Not being a 'real' chemo drug (it interrupts the cell reproduction cycle, it doesn't actively kill cells) Ibrance halts the maturation of immature blood cells--neutrophils especially, but all blood cells to some degree. So when you take your time off Ibrance the immature blood cells can emerge from their suppressed state and mature into functional cells (the mature cells are the ones that are measured in a CBC.)
Neulasta stimulates the production of new WBCs --but if Ibrance is in your body those cells won't mature, and you won't see any real benefit from it since those new cells will remain immature. However, if your WBCs are low because a chemo drug has killed them (collateral damage of killing the cancer cells) then stimulating new WBCs in the absence of a maturation-inhibitor is a good approach to raising your WBC count.
Also, Neulasta (and the other blood cell stimulating meds) are not benign--they can have serious side effects-including cause kidney strain/damage/even failure in rare cases, and also in rare cases can stimulate the growth of malignant cells.
It is far better to manage the neutropenia/leukocytopenia/anemia by lowering you dose of Ibrance, or extending your time off it or reducing the length of time you are taking it before your days off. A research pharmacist who works with one of the other CDK4/6 inhibitors recommended to me that I reduce my dose rather than extend my time off it. He also said if I couldn't manage the 75 mg dose without severe neutropenia, then to consider that any dosing regimen where the time on Ibrance was greater than the time off Ibrance was a good regimen....it is not set in stone that you take it for 21 days on/7 days off--any combo of on/off is better than no use of Ibrance.
Hope these suggestions help those of you who are struggling with neutropenia and the other side effects. I will take my last dose of 75mg (of cycle 18!) tomorrow....Elizabeth
My take is that if Ibrance is putting your neutrophils in suspended animation then the dose is sufficient to do the same to the cancer. The neutrophils are a surrogate for your cancer cells. For that reason, it seems fine to lower your dose to something that knocks the ANC to ~1000. We all metabolize this drug differently so you have to find the dose that gets the right response, for you.
I am also taking an extra week off because my ANC was below 1000 (900) for the first time in December. I'll check my ANC again in January at the end of my third week on Ibrance. If it is below 1000 again, we'll drop to 100mg.
This doesn't directly answer your question on how to drive up your neutrophils now but I hope it helps you understand (1) that unless your neutrophils have been killed by something else (not Ibrance) there are probably plenty of them. You are really trying to get colonies of immature neutrophils to hatch from suspended animation and leave the nest, as it were and (2) the solution if this persists is probably to lower your Ibrance dose.
Elizabeth is VERY responsive to PM's on Inspire if you want to contact her directly.
>Z<
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Thanks, Z! I will try exercise and garlic, and hope they come up, because I'd prefer to stay on the 125mg dose, but I agree, neutrophils are down is a sign that I could do with lower Ibrance..
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Thanks Z for the information re Palbociclib and a drop in neutrophils. Do you conclude from this that everyone taking this drug will have lower neuts or does this only happen if the drug is "working"? Ditto one's red count which also seems to drop? Chico x
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Chico -
Many people have been told by their doctors that their neutrophils are low "because Ibrance is working." It is definitely the Theory of Ibrance as explained to me by doctors and others I respect. However in my case the tumors initially shrank ALOT without a meaningful drop in neutrophil count. In the trials 75%-85% experience neutropenia and in a little more than 50% of the cases it was severe, but I don't believe they found a correlation between neutopenia or the severity of neutropenia and outcomes.
The main take away from the Theory of Ibrance is not to freakout if your neutrophils are low (as it is common) AND not to freakout if you have to lower the dose because your neutrophils are low. It doesn't appear to follow that Ibrance is not working if your neutrophils are not slammed. There are too many variables.
But it is an interesting thing to follow ... went back to look at my RBC levels. They are a little low ...
>Z<
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Happy New Year everyone.
I've had a virus for two weeks and counting. Fever gone after 7 days. Got an extra 10 days off Ibrance. Hoping I feel strong enough to start back.
I wish there was a magic tonic to give me umph. I'd be interested in the Fitbit group. I wasn't in the best shape and this virus is putting me two steps back.
At my cc, they encourage you to do art with your mask if you're so inclined. You are very brave.
https://ukhealthcare.uky.edu/about/arts-in-healthcare/visual/mask-workshop/
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Looks like I will be joining you all on Ibrance soon. I have ILC mets in almost every bone of my body. All have been dormant and dark on scans for three years, but suddenly it's awake and on the move again after three years of NEAD on Xeloda. Some old mets have reactivated and are growing, and I have scattered new metastases as well.
I will be taking Aromasin with the Ibrance. I already took Aromasin with Afinitor for about 17 months, so I'm kind of surprised that my onc is putting me back on it again. But Faslodex failed me quickly, and I've also already taken Femara for 13 months, so I guess Aromasin it is.
I took my last dose of Xeloda this morning and now I need to get started on my Ibrance homework. Suggestions for where to start?
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Welcome.
The main side effect is an obsession with neutrophil counts. Ibrance puts BOTH the cancer AND these important little buggers to sleep. The neutrophils wake up and leave the nest into your blood stream on your week off. You get to mostly normal levels. Or that's the idea.
Most people have no side effects from low neutrophil counts, (ie increased infection), but the doctor will lower your dose if the neutrophil counts are persistently below 1000. 1800 is the bottom end of normal, supposedly, but something like 85% of the people in the Ibrance trial had low neutrophil counts (below 1800) and 50% had to lower their dose or stop treatment because they dropped below 1000.
I try to measure my neutrophils on the last day of the third week in order to catch the neutrophil level when it is probably the worst. It's good to review your neutrophil counts in old blood test so you know what your "normal" is coming in. Did it vary? What were the highs and lows pre-ibrance?
Drugs can't fix the neutrophil issue because it's really a "feature" of Ibrance, but Cure-ious and others have mentioned that garlic and exercise help. If they don't then many have dropped the dose until their neutrophils got back above 1000 without any real impact on efficacy.
Fatigue, hair loss, prickly feelings in weird places are all possible but many people have no side effects or the side effects disappear with time. All that is survivable stuff. The aromatase inhibitors have their own side effects and it is important not to confuse those with Ibrance, but you've done those so you know.
Cycling back to hormone suppression after chemo is an effective strategy even without Ibrance. It seems that the cancer can regain hormone sensitivity after a little vacation from hormone therapy. Three years is quite enough time for the cancer to become sensitive to estrogen suppression again. If Aromasin worked so well last time you could do well this time. And with the Ibrance added, I expect you will be with us for quite a while.
Happy New Year.
>Z<
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I have to admit I haven't been paying attention to neutophils but apparently they are not going very low because my onc jokingly asked if I was even taking the meds. Between that and the markers going up every time I was concerned it wasn't working. He said that it didn't correlate to that and you don't need toxicity for it to work. I did have a good scan about 12 days ago. It said "continued significant treatment response". I've been on ibrance for 8 months and marker is up to around 325. It was about 100 when I started.
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HLB - I decided to check my neutrophils after reading your thread and I see mine are below 1000. Will be interesting to see what MD does. So glad you had a good scan. my MD told me he doesn't worry about the markers, yet I do every month. He pulls the CA 27/29 only. I always wait for those 3 days it takes to run with worry.
Lulubee, welcome from the Xeloda Thread. I am sorry to hear about your progression on Madam X. You had a lot of time NED, I only had 10 months before progression. I am finishing my 3rd round of Ibrance 125/Letrozole 2.5 mg. I have to say that I am pleasantly surprised with the side effects compared to the Xeloda 400 mg. that I was on for almost a year before I "blossomed" (5 active to over 60 new lesions) with an additional lung lesion. I have had some mouth sores, sores on my tongue (gone away) and change of taste with some fatigue, but my hands and feet are finally healed from Madame X. My CA 27/29 went from 224 to 192 with my first lab draw. Next lab draw on the 9th. I saw a radiologist about 4 bony lesions that are painful, but have decided to wait until my Feb scans to decide as my pain in those areas have lessened with the new combo. Hoping for success! Lots of great advice on this thread with wonderful women.
Happy New Year to all, 💖🍾🎉
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HLB - Yes. There wasn't a correlation between neutropenia (low neutrophils) and outcomes in the clinical trial. A small subset (15%-20%) of people have tough neutrophils that keep growing and dividing in the presence of a CDK 4/6 inhibitor. So there are people like you who respond to Ibrance but don't have low neutrophil counts.
My neutrophil counts didn't drop for months on this protocol even as my tumors shrunk. I blew off blood tests a few rounds in the fall. I thought I didn't have any issue with neutrophils and I hate being poked. Then when I had them measured in December they were slammed (900!) andI had to take an extra week off this round.
Never a dull moment staying on top of this stuff.
>Z<
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Z, thanks for your thoughtful response and welcome. Mediclisa, good to bump into you again!
I am actually optimistic about moving to Ibrance because I could not stay in shape while on Xeloda for three years -- due to the HFS threat I could not take long walks, no swimming (water and friction), no impact on hands so no weights... pair all of that with extensive bone mets which bring many other movement limitations (per onc, no yoga twisting, no biking, etc), and I have just felt doomed to a sedentary spiral. Have gained a good bit of weight in the past three years. I am hoping to be freer to improve my fitness on Ibrance, with the HFS threat removed at least.
Question: I have MTHFR (homozygous for the C677t variant). I know it's an outside chance, but I'm wondering if anyone here knows anything about taking Ibrance with MTHFR. I have found info about Xeloda before but am not finding anything on Ibrance.
One of the risks of MTHFR is blood clotting and DVT. I was not a candidate for Tamoxifen way back when because of this. Now I notice this is also a risk with Ibrance.
Are any of you on blood thinners? Any clotting problems?
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I also recently learned that I have the MTHFR mutation. I brought this to my oncologist attention and she said she was not familiar with this mutation. I was low on b12 so I started taking them and had a "speedy/anxious" type of reaction. I found a ND who specializes in oncology. She was able to address the problem I was having with the b12 and was very familiar with the mthfr mutation. She prescribed a cortisol manager ( ashwandgha and theanine). She stated i most likely have the comt sp which was causing cortisol to rise when taking methyl b12.She knows I am on ibrance and did not say anything of concern. My mutation is the a1286 so it is a little different than yours.I was also on Tamoxifen for 5 years before I got this reoccurrence. I did not have any problems with blood clot. I am very interested in what your doctors have stated about the mutation and ibrance. I am also interested if anyone else is taking the herbs that I am???
I have been on Ibrance for over a year and have done very well.
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Sorry, the mutation I have is the 1298c.
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Lulubee, I am on Xarelto, which is a blood thinner and will be on it for life per my MO. Interestingly, it was because of a DVT in July that put me in the hospital, that they found that my cancer had decided once was not enough for me to have to endure. I was on Lovenox shots for 2-1/2 months and then switched to Xarelto when I told my MO that I simply could/would not continue with the 2X a day lovenox shots. My stomach and thighs are one huge black and blue from the shots still, and I stopped the shots and went to the Xarelto pills on 9-15-16.0
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Thanks, Cheryl. I will look into Xarelto, just in case. That is a new one to me. I have had several clot episodes, starting in my teens. I take fish oil and curcumin daily and have for years; both of those act as blood thinners to some degree. I wonder how effective that combo is compared to a drug like Xarelto. It would be nice to not have to add yet another script to my pill collection.
singlemom1, I also take an ayurvedic herb blend that includes ashwagandha (along with rhodiola and holy basil), for adrenal stress and to help forestall a reoccurrence of PTSD. It makes a lot of difference in my ability to cope and to keep joy within reach.
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Two more newbie questions--
1. Are any of you taking Ibrance with Aromasin? Ever heard of anyone taking this combo? I haven't found anyone else so far. I hope I'm not going to be in a tribe of one!
2. Have any of you gained weight on Ibrance? I know the AI's that are paired with it can cause thick middles all on their own (been there, done that), but I'm not finding anything online about how Ibrance impacts weight, other than a passing reference to anorexia risk.
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Lulubee,
Femara was too rough for me so around my 6th cycle I switched to Aromisin... that was even worse on my joints. It was tough for me. I lasted two cycles and have. Been on Anastrozole ever since. Been NEAD since March 2016. Will be on cycle 18 at the end of this week. Been dealing with horrible joint pain the past couple weeks, so I am trying to grin an bear it.
Weight gain... oh is the bane of my existence... not from the Ibrance, more from my monthly Zoladex shot to surpress my ovaries combined with the AI. I have gained 21 lbs since starting and have gone from a size 8 to a 12. Muffin top and back rolls... so not cute, but I have them.
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Lulubee, I too was prone to blood clots, having the first one in my late teens and blamed on birth control pills. In fact they found a calcified blood clot in my heart and I had blood clots all throughout my body when I went to the hospital in July. I have been diagnosed with Leriche syndrome and several of my blood veins are severely compromised. If you are susceptible to blood clots you will most likely be on blood thinners as well. The risk of blood clots for "normal" people on Ibrance is already there and if you are prone to them, it would be crazy to not be on a blood thinner. The idea of a stroke on top of everything else we are dealing with is not a road I want to go down, let alone an anuyerism. Just my two cents worth. After the first month on Xarelto, it is just one pill a day. In the grand scheme of things, what's one more pill. Better than a shot twice a day for warfarin or lovenox.0
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mdillard04 -- I'm so sorry you are having so much joint pain. AI's are rough stuff. I think I've taken all of them except for Anastrozole/Arimidex. I always fared better on them if I took Vitamin D, fish oil, and a good mineral supplement. When I started on Femara in 2010, a research nurse told me to take all of those plus a glucosamine/chondroitin supplement. I definitely did better when I took those things. Maybe something in all of that would help you.
My weight gain odyssey started with my oophorectomy and Femara in 2010. I gained even more over these past three years on Xeloda. I used to wear cute little jeans and pencil skirts. Now, if I had my way, caftans and turbans would make a comeback. LOL
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Hair loss . I've been on Ibrance since May 2015. In the past 3 months I've experienced a lot of hair loss my hair is now very thin. My Dr insists this isn't a side effect but I am experiencing it. Anyone else?
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Totally a side effect. Biotin, certain shampoos and conditioners (PM me), halos and humility are the solution.
>Z<
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Hi Northtexas - usually Ibrance is taken along with hormonal therapy drugs like Femara/letrozole or Faslodex/fulvestrant. If you are taking one of those with Ibrance then it is likely they are contributing to your hair loss. I take Ibrance with letrozole. My hair started thinning about 4 months in to using this protocol (I'm in cycle 12). At one point it seemed to slow down and I thought it would stop but unfortunately it continued and continues to fall out. It's not falling out in patches though just kind of all over. I haven't done anything about it yet other than looking at wigs on line but I'm not quite ready to take that step. Some other lovely ladies on this thread have also experienced hair thinning and hair loss and are using biotin and/or halos (hair pieces - not full wigs). I'm sure you will hear from them.
Cathy
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cherylking2005-- Thanks for sharing your experience with clots. Have you been tested for MTHFR? It sure sounds likely for you. I will definitely raise the issue with my onc. In high school, I was twice in ER with clots which developed after injuries. Later, a first cousin had two mid-term miscarriages in a row where the placenta was full of clots, and that's when family members began to get the blood test-- turns out we all have some variant of MTHFR. My hysterectomy revealed that the entire backside of my uterus had a huge clot attached to it. I had to have a port placed because every needle prick caused phlebitis and a couple weeks of pain in my arm. I have the worst possible variant of MTHFR, so it's no wonder.
singlemom1-- Please do be aware as you go forward that MTHFR factors into your BC treatment options. It alters the experience of side effects with Xeloda to some degree (it actually worked in my favor for once-- low blood serum folate meant I had no HFS to speak of for three years, which is incredible), and it can make certain common chemo drugs super-toxic and even lethal, namely the ones that are platinum-based (we cannot methylate those). I suggest you start gently educating your oncologist now, or find an onc who is familiar with it.
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Hi All. Jumping back in, so please forgive if I go back a couple pages.
Thank you for the spelling correction and links for gedatolisib, Deanna and Zarovka. Many of you probably saw the report here on BCO that another drug, buparlisib, was found to be too toxic. The mood disorders it caused resulted in some suicide attempts. I am dismayed that these results were from a phase III trial. I thought (apparently naively) that serious safety issues would be discovered during phase I or II of a trial. It makes me feel more cautious about trials. Still, I am interested in following gedatolisib for the reason Z outlines, that if inhibiting the CDK4/6 pathway is not working, inhibiting the mTOR and/or PI3K pathway may be effective. Yes, as Cure-ious suggests, Apg's trial includes "a dose escalation to identify the maximum tolerated dose (MTD) of the combination of gedatolisib plus..." the other drugs. So I guess she and her doctors must be ready to say uncle if the side effects are getting too severe.
Cure-ious, can you elaborate on the reasons to try Co-Q? The oncology nutritionist suggested it to me, but I didn't get a lot of detail.
Thanks for passing along the information about Ibrance and neutrophils, Z. I am glad to know your source concurs with my onc that lowering the dose may be preferable to increasing the time off. I am on 75 mg.
Hello, lulubee. With such a pronounced change -- cancer on the move -- will they do a biopsy to see if the tumor biology has changed, e.g. gone Her2+ or hormone-receptor negative? I have noted that in your case Xeloda worked well for ILC for three years, but at the expense of exercise. I hope I don't have to make that choice any time soon. To answer your question about weight gain and Ibrance, my new normal weight is ten pounds over my normal pre-menopausal weight, and I attribute this to menopause (permanent chemopause) and letrozole. It has held steady. Of course I have the muffin top that mdillard mentions. Since we all have it, let's just call that the latest fashion, shall we? I think it is a shape thing, not a weight thing. I am luckily not one who tends to have trouble with weight and I attribute this to lucky genes, not virtue. I am reasonably but not extremely active. (By the way, the name of that gene mutation, MTHFR, just makes me think of some particular words that I am not allowed to type here. How appropriate.)
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About the hair thinning. Mine has thinned, but for now a good cut is keeping it presentable. I did a little research and found out there is scalp makeup available, kind of like what I use for my eyebrows (which I thought would never be necessary), so if the thinning starts making my scalp show in the thinnest area, I will try that before a wig.
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Happy new year Shetland. My thoughts exactly. Isn't it evident we all have the MTHFR genes? Do we really need to check?
>Z<
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Lol, good point, Z. Actually, I found out I have a germline mutation (a Lynch gene) that increases my risk for several cancers but probably not breast. So now I have to do extra screening and try to make sure another cancer doesn't take me out while I am NEAD for breast cancer. And decide how to follow up with family members.
In spite of it all, Happy New Year, Z and Everyone!
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Happy New Year to all!
I had been awaiting a set of tumor marker results drawn 12/26/16. I am very happy to say that the November rise in my CA15-3 must have been an outlier. The result came down to 208 from 485. My MO and I decided not to do a scan yet based on the fact that the tumor markers are falling, and my right flank pain is pretty mild and slightly less.
I did get a chance to ask him his opinion on any promising treatments in the pipeline. Novartis has a CDK4, 6 inhibitor, Ribociclb, that has been approved for expedited review by the FDA. Seems it may be commercially available in the spring. I think it's the MONALEESA 2 trial that has tested it with letrozole. It is a different molecule than Ibrance. My MO says the Ribociclib may be the better drug. He also informed me that they will be participating in the MONALEESA 3 trial which pairs Ribociclib with Fulvestrant. It may be possible that I will participate in that one, but too soon to tell.
He also feels that the Pi3K inhibitors have credible promise. I know that Buparlisib was ditched due to causing suicidal tendencies. ( yeah, the drug did stop cancer progression, but the patients all jumped off a bridge) Back to the drawing board there. I see that ShetlandPony posted this also and may be participating in a trial for another Pi3K inhibitor, Gedatolisib? If so, I hope it goes great with no serious SEs .
Holding you all in the light and sending big hugs. Everyone give yourself a pat on the back for existing with this wretch of a disease. Love, MJ
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P.S. maybe I should have said MTHFR disease!
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