Ibrance (Palbociclib)
Comments
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Holly, your baseball analogy made me smile. I'm a HUGE baseball fan and it's had such a positive effect while dealing with cancer the past 4 1/2 years. To be brief, my favorite team, the Giants, made it to the playoffs in Oct 2010. I was in the midst of my initial diagnosis that month. With each bit of bad news about cancer, I'd come home and watch the Giants keep winning. They won the World Series that year and I know it's the only thing that kept me sane during that very difficult time. They one it all 2 more times and this past October I took my youngest to game 7 of the NLCS and it was something the two of us will always remember. They got their ticket to the World Series that night and my son ( he was 10) got to live it up on The Embarcadaro with all the fans that night. Such a great memory
My lower back and hips are really hurting today. Hard to be up and about, still hurts laying down. Oxy not doing much. Contemplating dilaudid right now but don't want to be wiped out. Yes, I suppose it could be the Femara, but I've been on these AIs before and the pain seemed more like joint pain and stiffness. This is a throbbing, radiating pain. If it is the Femara, I'm in no hurry to chuck it because maybe it doing its job. I don't have many other choice besides IV chemo and I'm not in a hurry to sign up for that. Still waiting for response from my MO. I guess I'm hoping it's a temporary flare and will go away as suddenly as it started.
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Holly, your baseball analogy made me smile. I'm a HUGE baseball fan and it's had such a positive effect while dealing with cancer the past 4 1/2 years. To be brief, my favorite team, the Giants, made it to the playoffs in Oct 2010. I was in the midst of my initial diagnosis that month. With each bit of bad news about cancer, I'd come home and watch the Giants keep winning. They won the World Series that year and I know it's the only thing that kept me sane during that very difficult time. They won itall 2 more times and this past October I took my youngest to game 7 of the NLCS and it was something the two of us will always remember. They got their ticket to the World Series that night and my son ( he was 10) got to live it up on The Embarcadaro with all the fans. Such a great memory.
My lower back and hips are really hurting today. Hard to be up and about, still hurts laying down. Oxy not doing much. Contemplating dilaudid right now but don't want to be wiped out. Yes, I suppose it could be the Femara, but I've been on these AIs before and the pain seemed more like joint pain and stiffness. This is a throbbing, radiating pain. If it is the Femara, I'm in no hurry to chuck it because maybe it doing its job. I don't have many other choice besides IV chemo and I'm not in a hurry to sign up for that. Still waiting for response from my MO. I guess I'm hoping it's a temporary flare and will go away as suddenly as it started.
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Hi everyone, I was catching up, reading through the posts and know what it's like to experience these painful flares. When I was first diagnosed last fall, I had to undergo a spinal decompression and fusion as my back was in such bad shape (had been treating for back pain and compressiom fracture for 8 months before lesions finally showed up all over my spine after 2nd MRI!). Anyway, I had 14 rad treatments after, which significantly helped the back pain. I go to PT and after a session, I have a lot of pain, not just muscular. I think any type of overexertion, be it bending, walking too far, doing too much, just exacerbate are aches and pains. Romansma, the fact that you were on that vacation just little over a week ago, could definitely still be catching up with you. It's hard to accept that things I was able to do previous to this diagnosis without a thought and I took for granted are such deliberate, thoughtful, planned out tasks now. This diagnosis is not about a journey for me, it's a mutha-effin living nightmare. JMO
A thought about food shopping - I shop online with my local grocery store and then just pick it up when it's ready. It costs an extra $10 a week but they always have coupons and incentives, so I rarely end up paying that. It is the best and relieves a lot of stress for me.
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You are so lucky you can shop on line. Some people even have home delivery. We have nothing. You would think here in florida we would have something with all the old people down her, but no.
Hope, good point about just being on vaca and all that walking at the concert. Perhaps something got moved out of whack? Myra
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Hi Ladies I have been out of touch for a while. On a well needed vacation in the Carribean, but now that I'm back to work, I'm paying the price. Late nights Monday and today and a Continuing Ed class yesterday. Did go to my onc on Monday for my Glutathione and Vitamin D. Am very nervous since I had my markers taken and am very anxious to see the results. I am praying that this continues to work since it is so much better than what I was on previously. And for the first time in 20 months I have hair. It was so great wearing my own hair on the beach rather than the wigs I wore previously. Will know on Friday when I get my Vitamin C and D if my markers are down or hoping at the very least, stable.
About the Femara, I also have severe stiffness, but no pain. When I get up in the morning I can barely get to the bathroom without stretching first. When I've been sitting for a while at work and get up I can barely walk. But I still have issues with neuropathy from the Halaven I was on previously, so the stiffness is only an added difficulty. But I'm not complaining. I will continue to deal with this rather than some of the treatments I've been on previously. Again just praying that it works.
I love the in home food delivery. We have a delivery in the NYC area called Fresh Direct. When I was in St. Thomas I was able to compelte my order and have it delivered the morning after I came home. It's only $6.99 for delivery. I put on my Facebook page a while back that the 3 best things to happen to me in the past year are Fresh Direct, Uber and finding a good cleaning person. It's amazing what these things can do to make life easier.
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You guys are making me smile today! JJ, yes! I'd never refer to this as a journey, I like your term much better! We have grocery delivery here, I just like my routine of Costco and Trader Joes. I need to get over myself and start using the delivery service. I'm too tired to cook most nights, so I don't don't know why I worry about picking out just the right produce, etc. anyway, I've thought it could be everything I tried to do, but why didn't I feel it immediately after whatever it was that caused it. I was tired after the concert, but didn't feel the specific pain I have until 3 days later. Oh well, I've decided to give this another 5-6 days to see if it relents. If not, I will get in to see if MO can figure it out. Just hate the whole dog and pony show that happens when you report escalating pain. More appointments, scans, etc. not in the mood for it all!
So, I was still in bed at almost noon and starting to feel depressed. I got up, threw some jeans on and went down the street to get a manicure. Thought it would make me feel better. Not! I couldn't get comfortable sitting. Finally got done and had to sit to let them dry. I was really hurting in the really cool looking lucite chair and decided they were dry enough. Not! I messed them up trying to pay which was the last straw. Couldn't stop the tears at that point. The lady must have thought I lost my marbles. Had her take the polish off quickly and got myself back home. Felt like a frustrated 2 year old.
Anyway, MO just emailed me to let me know my ANC was ok to start the new cycle. It's only .8 which is after 7 days off Ibrance. Not far to go once I start again. Anyone do ok starting this low? Anyone know if the pain could be my marrow trying to produce wbcs? I know this happens with Neupegen and neulasta. Could it have been so low that it's having to work hard to catch up? Grasping at straws here, but really want to think this is temporary and not something bad.
Good vibes coming your way, Pearl. Hoping tumor markers are down, or at least stable. Get some rest soon!
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Romansma- Is it possible that you have a fracture? I hope not, but that kind of unrelenting pain reminds me of when I had fractured vertebrae. Nothing helped. Except radiation, finally.
I hope you get some relief soon.
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Yes, that has occurred to me, Sandilee. My last scan said most of my vertabraes were "fully infiltrated". Disturbing, but it wouldn't be a big surprise. I hope not, but if it's still the same or worse next week, I'll go find out.
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My MO took me off at .8. Made it to 18 days this time. He said protocol was not under 1.0. I don't know how you are starting so low. He was not concerned that we are starting and stopping. My body was getting used to it. RN said if its doing this to the WBC hopefully it is doing worse to the cancer cells. Me too! Hope, give yourself some slack. We are like pressure cookers.
Welcome back pearlady. I don't know if you read but the vit c and ashwagha worked fabulously on my platelets. Never went low this time. Stayed in the normal range totally.
Try to keep smiling all. We are in this together and here for each other. Myra. 😍
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Thanks everyone for the travel advice. I know it may not do much but I found an "ionizer" that you wear around your neck that people swear by...It was $59 on internet so I am going to try it...I am not worried about a cold, I am worried about being sick 6000 miles away from home.
Also I would like to say that I have had no side effects from Ibrance/ Femara since I have started taking it at lunch...If I have a sandwich, I take one half the sandwich and eat. Then I take my meds and eat the other half of the sandwich...I don't know if this makes sense but it is dissolved in food for sure. Anyway, I am doing great except for low white counts. and I appreciate the feedback that other MD's are not too worried about that...Also my tumor markers have dropped to 8/ So I am pleased and hope I can help when possible. Carolyn from Music City
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Romansma, I enjoyed hearing about your Giants - I remember when I first got cancer, my son did a book report on a book about Giants pitcher Dave Dravecki - what an inspirational story about his comeback and battle with pain and cancer! I hope you get an answer to your pain soon, but I know what you mean about the dog and pony show - ugh! Bring some reading and try to keep your mind off it.
I have been trying to go grocery shopping during the week and avoid it on the weekend since it's always mobbed - I try to go early in the day when it's less crowded. I like Trader Joes - good produce, and it's small so I can be in and out of there quickly. Also love their flowers which are very reasonably priced and might help lift your spirits. My 2 pink magnolia trees out front just went into full bloom - that too always gives me a boost, it is always the first sign that spring is finally here!
Carolyn, sounds like you are all set for your trip, have a wonderful time!
Myra, glad pear lady's ashwagha (whatever it is?) and vit c worked for your platelets, that's great to hear.
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FYI to all those thinking that Femara may be causing painful SEs:
In 2011 when I was first put on Tamoxifen I couldn't move after three days of taking it. After during some research I learned about E464 (Hypromellose). It is an inactive ingredient. I had to switch manufacturers.
When I was just put on the Ibrance/Femara, I found that it is used as an inactive ingredient in Femara also. So I had to do my investigating and found that the Teva brand of Letrozole (Femara) does not contain the E464. Every time I reorder with my pharmacy I have to specifically ask for the Teva brand. No automatic reordering.
Just wanted to share this information in case this small change could make a difference for someone else
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Ah, so much sharing of information. I love it! Holly, I AlWays buy cut flowers at Trader Joes! They are so inexpensive and it brightens my day.
I'm surprised at the differences in how MOs are treating low counts. I read something that Pfizer put out on how to handle the counts. I will have to find it and put a link here. I think I am questioning starting a whe new cycle at .8. A bit worried about where this goes.
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Romansma- Have you been able to have a real conversation with your doctor after your blood work? It sounds like you got info that it was ok to resume, but you didn't have any input. Would it make sense to give him a call and ask if you might hold off for another few days and see if your counts could come up? I think if you're worried (rightfully so, imo) your concerns should be considered.
My doc didn't seem to think that waiting another week until counts come up again decreases the benefit of the therapy. I don't know what his threshold is yet, as I'm too new, but I do know that he said if my counts aren't high enough, we just wait another week until they are. He seemed to think that would be no problem.
I assume the Letrozole is continued, regardless, as that isn't the thing lowering the counts, so you still have that.
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Chiming in on the lower back pain... I'm on my off week after round one of Ibrance and the lbp is kicking in. I had the pain, which included sharp pain in my thighs, then it eased once I started the Ibrance. Still no sharp pains but that familiar dull ache is back. Carol1 maybe it is the Femara. I started it with the Ibrance.
I consulted my RO when I was having the sharp pains and it was determined that the spots on my spine were relatively small - so the side effects/downside of the rads may outweigh the benefits. Sure would be nice to have some days without that nagging ache though.
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Sandilee, my MO seems to be of the same opinion as yours. Waiting a few more days til the counts come back seem to be of no consequence, and yes you do continue with the femara.
Hope, Sandilee has a good idea about having a good conversation with your MO.? Does he/she know how fatigued you are? Having concerns about starting up again, (IMO), is warranted.
Since many of us are having some pains, maybe it is the medicine working. Yesterday though, literally felt like my old self, went to the mall, bought something's and ate lunch out, all by myself! Something I have been afraid to do since dx. Shoot, (could use stronger expletives, LOL), we truly are guinea pigs.
Have a sunny and pain free day all...Myra
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PPAP thank you for the information about the Femara. I've been down the road before with some generics having less side effects than others. And from experience Teva is known to have some of the best generics. My only concern is that since I get it from CVS Caremark along with the Ibrance, rather than my pharmacist, that it will be difficult to request but I am definitely going to try.
Myra I'm so glad that the Ashwaghanda and the Vitamin C are working. My platelets have been good also. Also I've been taking Floradix (liquid iron) every other day for the low red counts as well as Maitake drops twice a day and my hemoglobin has been much better. Only issue is the white counts, but they didn't seem to go as low this past cycle and my onc was not really concerned.
Romansma I hope that you get the pain under control and are feeling better soon.
Hope everyone has a pain free day.
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Table 2. Dose Modification and Managementa – Hematologic Toxicities
CTCAE Grade
Dose Modifications
Grade 1 or 2
No dose adjustment is required.
Grade 3b
No dose adjustment is required.
Consider repeating complete blood count monitoring one week later. Withhold initiation of next cycle until recovery to Grade ≤2.Grade 3 ANC 3 (<1000 to 500/mm ) + Fever ≥38.5oC and/or infection
Withhold IBRANCE and initiation of next cycle until recovery to Grade ≤2 (≥1000/mm3).
Resume at next lower dose.Grade 4b
Withhold IBRANCE and initiation of next cycle until recovery to Grade ≤2.
Resume at next lower dose.Grading according to CTCAE Version 4.0.
ANC=absolute neutrophil count; CTCAE=Common Terminology Criteria for Adverse Events.Monitor complete blood count prior to the start of IBRANCE therapy and at the beginning of each cycle, as Except lymphopenia (unless associated with clinical events, e.g., opportunistic infections).
- Grade 1: < 2.0 x 109/L (< 2000/mm3) and > 1.1 x 109/L (> 1500/mm3)
- Grade 2: < 1.5 x 109/L (< 1500/mm3) and > 1.0 x 109/L (> 1000/mm3)
- Grade 3: < 1.0 x 109/L (< 1000/mm3) and > 0.5 x 109/L (> 500/mm3)
- Grade 4: < 0.5 x 109/L (< 500/mm3)
So, here's what I get from this info. If ANC drops below 1.0 during cycle, no dose reduction or withhold needed unless there is a fever. If ANC is below 1.0 prior to starting new cycle, you can consider waiting till it recovers over 1.0. Basically, grade 3 Neutrapenia PLUS fever/infection is the main indicator here.
My MO gave me the option of delaying the start of the cycle if I thought I had a virus or something going on, but that she wanted to see me if that was the case. I don't think I have anything going on, as far as infection, fever, etc. So, I swallowed that jagged lil pill!
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Romansma, thank you so much for that info! I've been super concerned because my ANC is below 1.0. But so far I'm not feverish so that's good. My onc didn't request a pause or lower dosage so I'm just going to go with that and hope I get all the benefits of the Ibrance Now to just make through that cross-country plane ride next month. Cotton gloves here I come.
Pearlady, looks like I'm taking the same liquid iron supplement as you are. I'm also taking 2,000 mg of vit c. Would you mind telling me how much Ashwagandha you take per day?
Thanks much
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Good information, Romansma. Your take on it seems sound to me. I just hope you get your pain figured out, which probably has nothing to do with the medication. How are you feeling today?
I'm on day 3 of the Ibrance/Letrozole combo and so far the only SE I have is headaches, and I'm pretty sure it's the Letrozole. I woke up with a doosey, twice, and it took a couple of hours to go away. I can deal, I think, if that's the only SE.
I'm hesitant to try any of the supplements that some of you women are taking, specifically the Ashwagandha, since it apparently can lower blood pressure. I'm already pretty borderline with that, so I'll wait and see how my white counts do on their own. I asked my onc if there was anything dietary I can take/eat to boost the neutrophills, and he said, no. Not that he knows everything, but since this is a common problem with a lot of chemotherapy that they see over and over, I would think if something works, he'd know about it.
Good luck,everyone. Not sure what I'd do without this site. Go crazier?
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thanks Hope amazing info.
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I just edited my last post. I use an iPad most of the time because it hurts to sit in an office chair at my desktop. This site isn't very friendly with mobile devices and it smashed the table I was trying to post. Anyway, I think it's a little easier to read now.
I'm still in pain today. I'm starting to think something happened. It was too sudden to be a progression. I think maybe I hurt myself even though I can't remember what it could have been. I messaged my MO and told her what's up and will see what she thinks I should do. Until then, I'm trying to take it easy and definitely keeping myself medicated! Gotta quit comparing myself to the me of years past, too depressing!
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Kaydeesmiles I am taking two of the Ashwaghanda daily. Not sure of the dosage, I would have to check from home, but think that its pretty standard. Has really helped to keep my platelets normal.
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PPAP,
thanks for your specifics on rogue ingredients in generics that make us sick...I totally believe this is what happens...I know we cannot all afford the brand names but I wish there was a recognition in the industry that there are ingredients in generics that make us ill. thanks for the info. Carolyn from Music City.
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I just finished my first round of ibrance, My TM's are elevated by almost 100 any body had this. I want this to work so much that this worries me.. I know you are not to go only on TM's but I are usually right on target. This is my first day on just the femera and I still feel good, No real noted side affects except maybe this slightly sore throat yet.
Best to all!
redroan
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Redroan,
One of my tumor markers also increased after the first round (CA27-29 increased from 1138(H) to 1208(H)). Like you, I feel fine so far, just hoping it is working and that the TM's improve.
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Could there be a bit of tumor flare with these meds? Tumor cells in blood as the tumor dies off? Or would this just be wishful thinking.
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"Some women will experience a phenomenon called "flare" with hormonal treatment of metastatic breast cancer. A flare can occur within the first month of therapy and is signified by an exacerbation of the patient's disease. Although it sounds bad, it actually indicates a good prognosis. Typically it occurs with someone who has bone metastasis and is put on tamoxifen. Suddenly the pain is worse than ever. But then it's back to normal soon after. Oncologists think this happens because tamoxifen can actually work initially as a weak estrogen in some women, stimulating their cancer, before it starts to function as an anti-estrogen. A flare can be very scary. A flare can also occur in the tumor markers. This is important to know because your doctor, seeing a rise in the markers, might assume that the treatment is not working, instead of recognizing the flare as a sign that it is working. "
I will look for more information on Letrazole and tumor flare, but we could be on to something here. If this is the case, it could be good!
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Good Morning All, my MO has mentioned flares to me. He said they usually happen w/in the first two months of tx. Let's keep our fingers crossed. My markers went down slightly, like 20 pts, but the lactose dehydranase, which also measures crap in your blood went to normal. So many numbers, between blood counts, TM s etc. being thrown around, so hard to keep them all straight, especially with chemo brain.
Enjoy another blissful, and hopefully pain free day in Ibranceland! Myra.
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Thanks Myra and Romansma for the updated information. I am so nervous to find out my TMs today. Mine are always right on and have been so since day one. My onc did tell me when I started the Ibrance that it sometimes worked very slowly and that we needed to wait a while to see if it was working. I am still within the first two months.
I did check my Femara and I am getting the Novartis brand name through CVS Caremark, so that is good to know. The side effects should be the least on the brand name.
Hope everyone has a pain free and great day.
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