Ibrance (Palbociclib)
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I found the chart on here, Thanks Redroan
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Shetland pony, I had numbness in my toes and years of bad leg and foot cramping after the chemo, but so far none with the Ibrance.
I try to stay hydrated by drinking a lot of soda water (can't seem to drink as much plain water) - always have it beside me at night and sometimes need to drink it during the night). I try not to get dehydrated since I remember the leg and foot cramping (and occasionally finger cramping) was worse when I forgot to hydrate.
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ShetlandPony I had very bad neuropathy from over a year on Halaven. A great drug otherwise, but very difficult to deal with the nueropathy. In addition, mine was made worse by a previous right foot injury which made the neuropathy much worse in my right foot. I had difficulty walking up one flight of stairs in the subway in NYC. I was sometimes afraid to get up from my desk at work. Really extreme neuropathy. And I'm a former marathon runner.
I have been off of the Halavan for about two months and I am so happy to say that my neuropathy is getting better. Still not what I want it to be or what it was previous to my foot injury, but so much better. I can now walk up three flights of stairs and am not terrified to step off of the curb. I spoke with my onc about my fears regarding the neuropathy and he said although it is listed as a possible side effect with Ibrance, its not nearly as likely as with Taxol or Halaven. Not sure how long the Taxol or Halaven stays in your body once you stop the drug, but I'm thinking the effects can last for several months. This is only my thinking based on other drugs with bad side effects that took over two months to get significantly better.
So good luck to you and I hope that the neuropathy improves with the Ibrance.
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To the Palbo club members:
Have finished two months of the Ibrance/ Femara routine...I feel well, and have lots of energy.
HOWEVER, the platelet count is dangerously low, the WBC is low and a few other declines including tumor markers. I have an appointment Wednesday with the oncologist for a full talk about this..I am afraid of picking up an infection of course but it is hard to think of giving up this magical combo when I feel well. so hard to figure it all out. Am feeling for all of you who are exhausted. That may be a coming S/E that hasn't gotten to me yet. Carolyn from Music City
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Hi Carolyn,
I hope when you say a few declines including tumor markers, you're saying that they have decreased. It's discouraging when the counts are so low, but the tumor markers aren't going in the right direction.
Please let us know what your doctor suggests. Good luck to you!
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Thank you for your responses to my neuropathy question, Redroan, 3Holly, and pearlady. You have helped me feel a little less afraid. That's great that your neuropathy is getting better, pearlady!
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Good morning! I've been too tired to post much lately. Wiped out! I think my pain is coming back in line. I have ongoing pain but it just seemed to spike last week. I feel fairly sure it was a flare now. I'm hoping that is a good sign that this treatment duo is working for me. I'm sooooooooo tired! I'm am fairly sure that's due to the low blood counts.
Wondering, anyone here getting neulasta or neupegen for low WBC? I had followed the trial thread that Babyswim had started, but decided to go back and re read it. Seems that any ANC below 1000 was treated with delayed trial drugs and if it was at the start of a cycle, they received neupegen. Why is neupegen not being offered now? What changed?
I have 3 sick kids in my house right now and I suspect my ANC is below 800 since that reading was the day before I started this new cycle. I don't have a planned blood draw until I finish this cycle. I do wish there was something that could be done to get these blood counts back up. I'm so fatigued, I can't do much and I'm afraid to be in the same room with my kids! On the other hand, I don't want to take a break or lower my dose. I want every opportunity to have this beat this cancer back a bit. So, I think I will just hang in and try to get through it. I'm watching for any symptoms or fever and will jump into action if that happens.
Have a good day all.
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Hi Romansma, Sorry to hear the kids are sick, hope you are able to avoid it. Both of my sons were sick, one very sick last week, took him to doc thinking it was strep he was so wiped out, but luckily not Strep, just a bad sore throat virus and cough. I tried to open the windows a lot to air out the house even though it was freezing around here, and kept hand washing, and luckily have not caught anything. I will ask the doc whether there have been changes regarding the Neulasta or Neupogen at the next appointment beginning of May - am rather tired also, not sure what the counts will be. Hope everyone is feeling better soon!
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sorry you guys around sick kids! So hard not to comfort them. My MO said no to neulasta, said it was contraindicated. If I am not mistaken, I believe Pearlady takes it.
New bloodwork on Friday to start my third cycle. Hopefully I make it all the way thru. Have not been exceptionally tired, except when I overdo like Saturday nite.
Hope, so glad your pain has calmed down.
Take care all. Myra.
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Romansma - very sorry your feeling so fatigued. Just wanted to let you know that when I began Palbobciclib (Ibrance) I started feeling exhausted to the point where I had to go home and take a nap. It got worse with each cycle until my onco. did a test for anemia. Turns out I was anemic - not sure if it had anything to do with the Palbo but I did start taking extra iron and gradually as my blood test results started going up I also started feeling better! Today I am still in the study (Palbo and Faslodex) and blood work shows that I am still a little low but that exhaustion has gone away. You might consider asking your onc to include it in the next blood work if he has not done so. I have not forgotten how tired I was all the time-its was very difficult. Can't imagine how you are handling it, especially with children to look after! Feel better soon!
SusanAnn
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I'm sorry to hear you're so wiped out, Romansma. No advice, but I hope you feel better soon. Impossible to stay away from your kids, though. What lousy timing. Hugs to you
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Romansma - sorry to hear of your extreme fatigue. I am going in Friday for blood work, EKG and physical. I will try and get some answers from the trial nurse about Neulesta or any other treatment for low counts and see what they say. This is my week off and it is nice to have some energy. I too was borderline anemic during the second cycle. Got my RBC up and definitely feel better.
I have moved my trial from Dana Farber to my local MGH, so I am interested to see what their take is on the whole thing with the low counts.
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Thanks guys. I will check with MO on anemia. I just thought she would have alerted me to it if it was low since I have CBC done all the time. I will also try to get a copy of my last labs. Any ideas on what to take if it is low? Constipation is already an epic issue because I take Oxy around the clock, so I don't want to make that worse.
The nurse at school called a bit ago to come get my youngest. Yikes! Feels like I'm playing Russian Roulette with all the viruses around me and blood counts in the toilet. Hard too because I want to take care of them, but I really can't. Got him home and in bed, then washed my hands and went to lay back down. Wiped!
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Romansma checking for anemia is not part of the regular CBC where I go. Apparently it needs to be requested if they suspect its an issue. I used a slow release iron and always had it with my largest meal of the day. Slo-FE is a good one or any slow-release type. It does take a while to build it up. If it is an issue, ask your Oncologist - not sure but I think there is also an injection which might work faster and help you feel better.
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Ok, so, I haven't had iron levels checked specifically, but my RBC, hemoglobin, and hemocrit are all low which points to anemia. However because my MCV is normal, it does not point to iron deficiency, just an anemia caused by red blood cell destruction. This is in line with taking this treatment combo, so for now, there really isn't a lot to be done about it and taking iron won't help much.
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Hope , glad to hear from you. Sorry about the blood issues, i have had the same with carbo also not due to iron definciency. So i took neupogen and had a blood transfusion which allowed me to resume my treatment fast. Also i ate a lot of liver it helped also red wine help a lot in raisin rbc levels lolll not getting drunk just a small glass with meals. I hope you soon get well and that palbociclib is working how are the SEs? I hope the combo is treating you gently. Hugs.
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So glad to hear from you! Don't think I can handle the liver, but I'll give a try on the red wine! Even a little glass buzzes me these days, so I'll take it slow. Good luck with your treatment!
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I started to get tired also these days because of weekly taxol, but i am close to finishing 12 may will be my last dose of taxol and also time for my PET. If all is still clear God's willing taxol will be stopped and will continue on herceptin/ perjeta every 21 days plus one shot xgeva for the bones , it is doing wonders . Also an anti hormonal will be added. We are still discussing which one. We will see the results of scan first. I am keeping my finger crossed and praying a lot for all of us .
There is a shot you can take for RBC but my MO doesn't like , he told me some side effects are really harsh so he preffered one transfusion and it went well . I was like you very fatigued. But like i told i ate stuff at home which helps , artichaukes, lots of green leaves but he absolutely forbid me any iron, he said it effects the efficiency of chemo. Keep me posted on you how you are. Kisses.
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So happy to hear things are still going so well for you. I really hope you get a break from the Taxol! I'm not low enough to need a transfusion, so I need to eat more greens, etc. I broke my juicer, so I think I'll order a replacement part and get back on that. I still drink green smoothies daily, bit I think I need more! Might even have to have some red meat! Something I don't usually eat. Need to get some energy back before summer gets here!
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Romansma sorry to hear about the fatigue. I know how frustrating and discouraging that can be. Thankfully my RBCs have been very good lately. I was advised by my holistic pharmacist to take Maitake drops twice a day, Astragalus twice daily, Squalene (shark liver oil) twice a day and something called coreoxygen also twice a day with a full glass of water. The combo seems to have helped and it didn't take that long to kick in. I tried to confirm with Pfizer and they seemed to think this was all okay. I'm into my third cycle now and the only issue seems to be the low white count.
Hoping that things get better for you.
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Does any one have slight bloody mucus when they occasionally blow their nose? Has happened a few times in the last couple of months, but I wouldn't call it a bleed. Only happens after blowing my nose. Thx, Myra.
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Not me (yet...), Myra. I wonder if it's the Ibrance or the Femara.
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Myra, on the list of "Adverse Reactions ... in Study 1" it shows that epistaxis occurred in 11% of the people on Ibrance + letrozole, and in 1% of those on letrozole alone. Now we know a cool new word for bloody nose.
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Hi Myra,
No "expistaxis" for me either (yet) - but my onc did warn me that a bloody nose was a possible side effect.
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Hi ladies,
I am excited to find this thread, and can't imagine that it is coincidental. I have been on Faslodex for almost a year now, and this month my TM started to go up. After a pet scan revealed some new bone lesions, my MO suggested that we change treatment to Abraxane in May. He mentioned that there was a new drug on the market that he would consider, but that he didn't think my insurance company would approve it since it is considered first-line. I am thinking it is probably Ibrance, and it seems to me that there are several of you ladies who are 2nd, 3rd line and whose insurance companies have approved it's use. I have so far avoided any drugs that cause hair loss since my stage IV diagnosis. I know it sounds ridiculous, but when I tell people that I am stage IV they are always surprised. Even though I have pain, just having hair makes me feel like things are somewhat normal. Of course I would rather be bald and have my cancer gone, but if there is another treatment out there with fewer side effects than IV chemo, I'll gladly take it! (Faslodex was so great as far as side-effects go). So, I am definitely going to talk to my doctor about the possibility of trying Ibrance if my insurance company will pay for it. How many of you ladies are in a trial and how many are taking Palbo with insurance approval? How expensive is it anyway?? Some of these drugs are so crazy expensive!! Hugs, Linda (Romansma, I grew up in Oxnard, Port Hueneme, El Rio)
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Myra1211
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Myra1211: I have bloody mucus too :-/
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Myra
I think it has happened to me twice so far. (Just finished third cycle.) Upon waking I felt the need to blow my nose and bright red blood came out. And that was it. Not a continuous bleed but scary at first. I read that it was a possible SE. So little that I even forgot to mention it to my doctor.
Since I finished my third cycle, my scans are scheduled this morning at 7:15 a.m. Little anxious. I guess that is why I am still awake at 3:30 a.m.
Next hurdle will be waiting the week for the results at my appointment next Thursday. At least beautiful weather has found its way to Pennsylvania!!
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Good luck with your scans today PPAP. I'll be thinking of you!
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Thank you ladies, you put my mind to rest. I am so very grateful for this thread and you all. You answer so quickly, knowledgeably and with love. Thank you
PPAP, good luck with your scans today! Fingers crossed for great outcomes.
Linda, most of us here are second, third etc. line and we all got approved with a Pfizer drug card. I am now paying $10.00/month down from $9000.00....LOL. AND HAIR IS EVERYTHING!
Have a wonderful, pain free glorious day all...Myra.
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