Ibrance (Palbociclib)
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Good morning...
Thanks for all the feedback on haircoloring. You all have convinced me to get back to it! I can go for a long period of time between coloring, as my white roots blend in with my light blonde. I think it's time to take the plunge. I notice my hair looks decent immediately after I shampoo and style, but after that it looks and feels like cotton candy!! I am going to check in to taking Biotin...it sounds like it works for some of you. Someone mentioned "non-permanent" color....what is that? Perhaps, a color rinse?
JFV....You are in my thoughts and prayers. I can't even imagine what you will be going through.
I have my oncology visit tomorrow. I will be seeing the nurse practitioner this time. I really like her and need to jot down some questions before I go. I feel like I live at that facility!
Wishing all a pain-free, happy day!
Hope
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Hi everyone..hope your week is going well!
I wanted to respond to JFV regarding the eye lesion. When I was initially diagnosed with MBC in Sept. 2016, they found a lesion on my lower left eye socket. Because of the proximity to the optic nerve, they immediately stopped all chemo and put me on steroids (to reduce inflammation) and started radiation to the eye area. I believe I had a total of 10 radiation treatments. They thought I might have chronic dry eye as a result of the treatment but that hasn't been an issue.
They have done several scans of my head since the radiation, chemo and now Ibrance. The lesion size was reduced by the radiation but has remained stable ever since. My radiology oncologist has released me as he felt that any further progression of the disease will most likely occur elsewhere.
Bottom line...don't be discouraged because Ibrance has not resolved the eye lesion as it may require a different type of treatment. I am ending cycle 8 of Ibrance (I have ILC also) and all of my scans have been great...so keep the faith!
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Like Z I am sensitive about my hair. The first time I had cancer it was waist length. It's never gotten that long again, although I only trim it once a year. I have to have my cocker spaniel groomed every couple of months so that's where "hair" money goes. Color is also natural, mostly dishwater brown with grey highlights and at 68 that isn't too bad.
JFV, it took 7 cycles of Ibrance and faslodex for me to show improvement in my scans and get my tumor markers moving down, so I suggest you hold the course for now. I don't notice that it's affected my hair, but then I never did have thick hair.
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Thank you MarshG ! Your situation sounds almost exactly like mine. I also got the dry eye waning. It's great to know that may not happen. So glad to find someone with a similar tumor. Thank you for your reassurance!
Cive, nonahope, leapfrog and Z. Thanks for the prayers and good thoughts and reminder that I need patience.
Yesterday I was completely engulfed in misery. You ladies really helped.
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Thank you for the clarification.
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To JFV,
I had a couple of lit areas on my liver on a Pet Scan 2 months after starting Ibrance. Then next scan in May showed them gone. I think 2 more Cat Scans don't show them. Not sure when I'll have another Pet Scan. I have now been on Ibrance since January and Anastrozole since July, 2016. I didn't tolerate Letrozole.
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was supposed to get my last Faslodex loading shots today and start my second round of ibrance but my number s were too low around 900. I am waiting a week to see how I rebound. A few questions: anything I can do/eat/take to help get my ANC back? I do not want to go down on dose. Only 42 so not sure why my body is being such a baby. And if i cant tolerate, what is the next typical treatment? Standard chemo?
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Thank you topaz1212. I guess I need to learn patience and optimism. Glad to hear you are doing well
Txgata I have friend who is taking 75mg Ibrance one week on, one week off after having a terrible time on 100 mg. She has responded really well at the current dose. I'm sure other ladies will log in with better info. But, I just wanted to share.
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Txgatata- I get my faslodex regardless of lab. The Palbociblib 125mg made my ANC 590 after 2 weeks-it was a holiday weekend and the on call doctor stopped it for a week-after a week off it was 690, after 2 weeks off it was 800, after 3 weeks off it was 1600. My MO restarted the next cycle at 100 mg and I did the 3 weeks-after one week off ANC was 600, a second week off it was 1000 so started cycle 2 at 100mg. Have no idea how that will go, I have heard that peoples numbers jump all over. I may be a person who is 3 weeks on and 2 weeks off and stay at the 100mg-we will see. I have bone marrow mets which may be why it takes longer for me to rebound-was also told my chemo from 5 years ago permanently affected my marrow.
My MO requires a minimum of ANC 1000 to start a new cycle. She said she has people on all 3 doses who are responding well.
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zarovka-I'm curious about what you said regarding Ibrance not working if hormone suppression is not working. My first oncologist's treatment plan was Letrozole then adding Ibrance when letrozole started to lag or fail. My new MO asked "Why add Ibrance to an already failing drug?" On letrozole now without Ibrance. MO said I can use it now with Letrozole or wait and use with Faslodex as second line.
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thanks, ladies. jfv, good to know people respond on the lower doses. Was worried about going down. Nkb, I would have had the fas shot but they forgot to order from pharmacy lol. They gave me a Starbucks gift card for the good which I though was nice! Going tomorrow to get the shots.
Any tips to help get tougher blood?
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I'm on Round 3 of Ibrance 125/Letrozole. Other than a low ANC what other problems did some of you have on this dose? Just curious.
Hope
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Just fatigue, a funky rash and some rectal bleeding. They think the bleeding is normal but seeing a G.I. on Friday and I got Cleocin for the rash. The fatigue I think we all know not much we can do for that. Just disappointed because I thought I would do better than this. Want to push through as I've heard after a few months your body starts getting used to the medicine.
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Nonahope, you should probably read through some of the past notes here because everyone reacts differently to this dosage. But I have just had fatigue, occasional diarrhea although that has stopped, and slight nausea on my week off. After a year I had a little blurred vision occasionally, but it is not constant. Stay hydrated and take magnesium or you will have foot/leg or rib muscle cramps. It also depends on your past treatments. Just ask if you sense something and want to know.
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grrifff - that is a really tricky question that we don't know the answer.
We do know that when Ibrance was originally tested as a singlet therap, and it did not work. It has been shown to be effective ONLY in combination with hormone suppression therapies like faslodex and letrozol. But when the combination fails, why does it fail?
Ibrance is certainly extending the time women spend on hormone therapy, but it doesn't seem possible that Ibrance would work if the underlying hormone suppression entirely failed, given the reported results from the trial of ibrance as a singlet therapy. So does it really work by preventing the hormone therapy from failing?
But then what if letrozol & Ibrance fails. Many doctors speculate that Ibrance might extend your time on faslodex, for example, even after you have been on letrozol and ibrance. Somehow the COMBINATION works longer.
I think what I really meant when I said that Ibrance won't work if the underlying hormone treatment failed is that Ibrance won't work if the cancer is entirely hormone therapy resistant ...
Your new onc seems pretty smart. I would be interested in his response if you walked him through this line of reasoning. I am even less sure of what is going on after trying to explain what I meant. Thanks for the question. It's a good question.
>Z<
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Txgatata I have the same situation as you. Got my Faslodex shot today but counts too low (500) to start round 2. I finished first round last Thursday. They asked me to come in next Wednesday for blood test/possible restart but we're going to be away, so I'll go Monday July 18. Also MO dropping dose to 100. The nurse said that I could come in and test blood Friday to see if counts are going up if I want, but she thought it would take another week for them rebound. It doesn't seem worth it to me to go get stuck another time in my one arm they can use if it's unlikely to show much. Counts were OK two weeks ago so I was kind of surprised especially since I've been finished for five days.
Sounds like many of you have been through this. I'm glad to know that lower doses work. It doesn't sound like there's much I can do to impact my blood counts but if anyone has suggestions let me know.0 -
Thanks for the input on side effects. Basically, I have the same as everyone -- no bleeding or rash though. Mostly, fatigue and the nuisance of pain .
Off for my oncology appointment later this morning.
Wishing all a good day!
Hope
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Sorry so many of you have been having such low blood counts on Ibrance. I guess no one knows why some are affected and some (like me) are not. Not once, in my nine months, have my blood counts been too low to stay on 125mg. Okay, here's my theory. Ladies,like me, who are many pounds overweight and don't exercise much have higher blood counts. What do you think? I'm not recommending this plan to anyone, Z would not like that. LOL. But, seriously maybe fat has more red blood cells? Ha
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griifff, I was on letrozole alone for 18 months before I had progression. Then my MO switched me to faslodex and Ibrance where I've just started my 8th cycle after reducing the dose to 100 mg. So between letrozole, faslodex, and Ibrance that's 2 years of fairly good quality survival. I'm hoping that I'll get at least 18 months from faslodex and Ibrance.
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Txgata, I started on 100mg Ibrance, but after 5 months of terrible side effects and really low counts, I went down to 75mg. I am at 2 years on Ibrance and letrozole and had a great pet scan end of July! I rarely get extra time off, only when I had radiation to left hip and colitis afterwards. Otherwise, no time off. You might want to discuss that with your mo.
Hugs and prayers
Claudia
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Grannax 2. Unfortunately I am overweight and under exercised and still get low counts. I guess this means with both need to put down the fork😂
When diagnosed stage 4 my Onc immediately took me off aromasin and put me on faslodex shots and Ibrance at 125 mg. After 10 days or so on that combo I was in the hospital with flu like symptoms. My RBC dropped to 7 so I got 2 doses of red blood cells and felt well enough to be discharged.
After that my Onc offered a 3 month break from Ibrance and only faslodex each of those 3 months. That made me very nervous so I asked to go to 100mgs. But, I had to wait weeks (perhaps a month) for ANC high enough to return to Ibrance.
Thanks to an immune system problem I get sick a lot. I have had 2 UTIs and a sinus infection and one other cold virus in the last two months. I continue to be anemic. But haven't gone down low enough for a transfusion. My daughter is a pharmacy student and tells me standard medical practice says no infusion until RBC is at 7.
Because I've had so much trouble my Onc wants blood work every week or two. She basically orders the new draw after she looks at the most recent results
Having said all that I must say by some miracle my energy is improving. I get woozy climbing stairs but I am sleeping less and just getting out and about a lot more.
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On the subject of maintaining blood counts sufficient to resume treatment, we are experimenting with various mushroom extracts. Maitake D extract has a lot of research showing it boosts counts, as does AHCC. Neither seems to have prevented my wife from needing a reduction in dosage of Ibrance, or needing extra time off. She's currently trying a combination of lower dose of maitake, 6 mushroom extract, and chaga tea. We got good results from that when she was on xeloda. It really improved her ANC counts. But, the previous trials we did with AHCC (3 grams daily) and high dose maitake (6 mg/kg body weight) didn't seem to produce enough results. In any event, they all have some suggested anti cancer properties, but nothing proven by clinical trials.
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The issue of blood counts fascinates me. I had low neutrophils after round 1 which led to a delay. MO dropped me to 100 mg. After that, my neutrophils were fine but my RBCs were not. My red cells and hemoglobin steadily declined with each dose. I had a month between round 3 and 4 and yet my RBCs and hemoglobin did not recover. Had to stop Ibrance partway in round 4 as my hemoglobin was getting to transfusion territory. (They seem to be less keen on transfusions in Canada.)
I'm now off Ibrance, at least for now but still on Anastrozole. Waiting for the radiologist's report on my bone scan but MO thought it looked good. That being the case I think he may just keep me on the AI for now. He hasn't made a definitive choice yet as we are currently hunting down the cause of some abdominal pain I have been experiencing.
I'm not that upset about the pause in Ibrance as I feel we can reconsider it if things go sideways. I'm also hoping that by then there will be other less toxic options. Clearly I have wimpy blood or my marrow is not pulling its weight! It would be nice to know why some tolerate the treatment well while others like myself struggle.
Pat2
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Hopefully abemaciclib, which has less detrimental effects on blood counts, gets final approval early in the new year, and that the GI issues prove manageable.
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This may be a silly question, but how do I read the red and white blood cell counts on my lab work? I get confused, because someone mentioned 7 was too low for RBC, yet mine was considered "perfect" after my week off Ibrance, at 4.4, and I was told to start Round 2.
This is what my file shows:
After two weeks of Round 1 on Ibrance + Femara, RBC Count was 4.54 M/mcl, WBC Count was 3.1 K/mcl, and Platelets were 146 K/mcl. Both WBC and Platelets were flagged as Low, which Onc said was what we wanted. Nothing else was out of range.
After the full week off of Ibrance (so Day 28), RBC Count was 4.41 M/mcl, WBC Count was 4.4 K/mcl, and Platelets were 142 K/mcl. Only Platelets were flagged as low this time, everything else was in range.
I know I'm just beginning this regimen, and will meet with Onc on Tuesday, so will certainly ask her to go over the numbers, but I'm just so confused...
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Hi Ciaci,
According to my lab reports, 4 - 5.5 RBC is normal. You need to watch comparisons as the unit of measure can change. My lab reports 10*9/L.
Generally my oncologist watches for the neutrophil count, not just WBC but, as I said, there is variation.
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Ciaci- some people are talking about their RBC (red blood cell count) and some are talking about their HGB (hemoglobin) A HGB of 7-8 is a level of anemia that an MO may give someone a blood transfusion. The HGB is the result people are using to talk about anemia.
There is a WBC (white blood count) and that is broken up into a differential or percentage of the 5 different types of white blood cells. People are usually talking about their neutrophils. Multiplying your percentage of neutrophils times your WBC gives you your ANC or absolute neutrophil count. This is sometimes calculated for you and the number is on your results page. Many MOs use the ANC of 1.0 (or 1000) as the minimum number you need to start your next cycle of Ibrance.
Each lab can have some variation in what their normal range is. So for example your WBC was 3.1, if your neutrophils were 35% for example it would be 3.1 times .35 = ANC of 1.085. Hope this helps.
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Nonahope mainly fatigue towards the end of the cycle and sore gums. This cycle, my seventh, I felt really great until three days after stopping Palbo. I usually get fatigue around then but I still have good spells. I have a two week break because my neutrophil count goes really low, like 0.67 after a one week break.
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Well, I have good news! Met with MO to go over scans yesterday, and all good news. Enlarged precarinal node has distinctly shrunk, and bone mets, though still there, appear to be healing generally (sclerotic). So, stable or better, all around. Thank you, Ibrance and Faslodex. This is immediately after round 7. After round 3, I was stable, but no improvement on mets or node, so this is real improvement. And by the way, I have had 6 every month rounds of Xgeva. I expected to be reduced to every 3 months, but MO essentially said, "If it ain't broke, don't fix it". He's keeping me monthly on Xgeva for now. No side effects at all.
Off to VT for our son's engagement party next week (if Irma doesn't blow us away first) and then to Lake Wentworth in NH for 10 days. Bliss!!
HOORAY...and hugs to all others, especially those with scans this week!
Pat McG, are you okay? Haven't heard from you in a while....concerned.
xox
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Thanks, Sadiesservant and Nkb - So much to learn, but you've helped me make sense of it!!
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