Ibrance (Palbociclib)
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Grannax2
where do you get the infections? Or is it only sinuses?
In any case, I hope the ENT can get things sorted out!
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amica- when I first started this course of treatment I felt like I always had a sinus headache but with the last two treatments (knock on wood) I haven't. So hopefully yours will go away too. It seems that SE come and go and there is no rhyme or reason.
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Tanya, we’re having a blast! We’re in Ontario right now. Lots of wind yesterday, so we took a “weather day” in Killarney at the marina. Hoping to head out today, down Georgian Bay. Pat, those shorts haven’t caught up with us yet!! Must be the mail......! Ran into a sidewalk sale in Charlevoix, Michigan (and,wow, is Michigan on the water amazing!!) and bought a bathing suit....one size too small, because it was all they had left. Hmmmmmm.....eating on the boat, no exercise, and a too small bathing suit is a formula for some sort of social disaster.
Taking my Ibrance dutifully and racing the clock to be back for Faslodex shots in VA on Sept 11th. Has anyone ever scheduled Faslodex shots somewhere away from your home onc? I wonder if that is even possible. Mine are paid for by Medicare.
Hugs to all, and good luck on scans. JoT, thinking about your situation. Talk to your onc some more
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Thanks for the thoughts ladies - I've changed countries and oncos (so was coming here (to Spain) with a note from my last onco and his recommendation) - they're studying the PET scans before making a decision - i'll mention the word 'possibility of a flare' and see what they say. Thanks for your inputs. I've had treatment indifferent 2 different countries but had to make an appointment with an onco prior in order to get the meds/treatment (ibrance/faslodex/xgeva and warfarin) - it is possible it's just a bit of a pain to set up (history, fill in questionnaires etc)... I'm talking from a private medical standpoint and paid and claimed from Bupa, no questions were asked.
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Elizabeth (mica1) Thank you. After 2 weeks off from my first Ibrance cycle, my ANC is still just ,7. After my 21 days it went to .3 and my WBC was 1.6. So waiting one more week until blood work again. Does anyone know what happens if I have my 125mg capsules and doc lowers dose....will insurance cover? Doctor did mention possibly starting again with the 125, but do blood work after one week to see where I am at WBC and ANC-wise.
Great news for those of you with good scans. I am hoping I can join you at some point. So for now, I wait.
Thanks to all of you for your input and conversations!
Debbie
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dsodasso- I was started on the 125 and had to wait 4 weeks before my counts came back before I could start my next cycle. I went from the 125 to the 75 and the insurance covered it with no problem. Hope this helps with your questions.
Kathy
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Thank you neogirl (Kathy) for your experience. They sent me 125mg 2 weeks ago which I haven't used yet due to counts.
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I just came back from one night stay in the hospital. My husband passed on some really bad diarrhea to me (just half a day delay between him and me, so no possibility to prevent it by hygiene measures). I was so sick with dehydration and fever, I could barely walk. Since my general practitioner, who also does home visits, is on vacation this week, I had to stay in hospital to get i.v. fluids and pain/fever meds. Now I am feeling much better, just a little weak. Unfortunately, my ANC is only 0.8 now (at d28) due to the infection, therefore I need a second week off Ibrance (should have restarted today).
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Oh, Netta, sorry to hear about your troubles - hoping you get a speedy recovery. An extra week off Ibrance won't make a difference, and you deserve the break.
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Netta So sorry that this happened. Husbands are so generous. Mine has given me two colds in the past year. Fortunately I didn't get a secondary infection either time.
Hobbes
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There is another tread for the Pallas trial...
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good evening ladies
I hope you make it in time Joyner. I always had my shots in the office. I had them once a week later due to a surgery. Hopefully everything will be fine.
The trip sounds exciting and amazing
Tanya
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Netta, ugh, so sorry you had to spend the night in hospital but good that you got treatment. After your ordeal, I'm amazed your ANC held at .8. Rest, hydrate, and heal and you'll be back on the next cycle straightaway.
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This is my first post in any breast cancer forum, although I have read many posts by others. I am a 37-year-old man with metastatic breast cancer. I am married and have a 12-year-old daughter. I started on Ibrance back in March. I am currently on my sixth cycle (100 mg), and the fatigue remains very difficult for me. I have had to leave work. From the message boards, it has not been clear to me how common it is for folks to experience severe fatigue on Ibrance. Any others have that experience? Thanks very much!
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LXB, we’re so very sorry that you need to be among us, but you’ll find this to be a warm, supportive, and most importantly, knowledgeable group. We’re happy to welcome you!
I think that you’ll find that many suffer from fatigue as a side effect of Ibrance, some to greater and some to lesser degrees. I hope that your body will adjust and that things will get better in that regard. Ibrance is an amazing drug and has kept many of us without evidence of disease for many, many months. It can take a while for results to become apparent (many have reported 6-8 or more months), The very best of luck to you and to your precious family
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Welcome LXB.
Sorry you find yourself in this place, but glad you found us and are willing to share your experience. This site is a great help to me, both emotional and educational.
I have been on the 75mg dose of Ibrance since January. Some days the fatigue is not too bad, others I find myself dozing off if I sit down to read or watch TV. I have a desk job and one day not too long ago I found myself getting that fatigue feeling come over me about 2pm. I got up and walked around the office praying to myself so I could get through the rest of the work day. But as I said, some days are not too bad. I definitely do not have the stamina I used to have before this crazy diagnosis.
You said you are on 100mg dose. You may mention your severe fatigue ( having to leave your job ) to your doc and see if you can change to the lower 75mg dose. As some have posted here, there may be evidence that the lower dose is as effective as the higher doses.
Also, check your other labs, CBC for anemia. This can make the fatigue worse.
Post your questions and concerns anytime. We are here to help you and your family.
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Fatigue is very common on Ibrance. Many people have been able to get SS Disability with their MBC Diagnosis.
It must have been a shock to you and your family to receive this DX. Where are your mets? I am 20 months on Ibrance/letrozole and it's still working. My mets were/are lung, chest and liver. The SE are different for everyone and different intensity. We call it the Ibrance dance because you just never know what to expect. I think, in general it does get easier.
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Welcome LXB, and sorry you have to be here. Thank you for sharing and reaching out. Fatigue hits us all differently and I will pray you find the dosage and solutions so you can continue to work. I am older so I retired, and most days I feel pretty good as long as I don't do anything--not your solution I know. Feel free to share and join with us all in your Ibrance dance. You will find we care.
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Hi LXB; I am very fatigued on this treatment. My MD called to tell me that I have anemia but tumour markers were fabulous. So I'm happy with that. I am like IntoLight, retired and great provided I don't do anything. I am seeing my onc on September 6th and will ask if there's anything I can do for the anemia and if there is I will post here. All my best to you. You are young with young family demands. Perhaps when you are NEAD you could go on a lower dose for maintenance.
Cathy
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Adding my voice to the chorus of welcomes, LXB. So sorry circumstances brought you here, but hope you find it helpful. I was actually more tired prior to diagnosis, when docs were treating me for asthma and COPD. Once my body adjusted to treatment, which took about 3 months, I started to get more energy. Even so, similar to Candy, sometimes as soon as I get anywhere near horizontal, I fall into a catnap. Hoping your path gets easier as you settle in. Please keep us posted on how you're doing.
Joyner, back out on the water?
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LXB
I feel fatigue. I started on 125 and reduced to 100 after about 9 months. I’m ready to reduce again to 75 by the last week of taking the pill I’m weary. 14 months altogether. Hope this is helpful. Also my blood counts are always borderline and I’m usually always anemic.
I also am 60 so I retired in May 2017.
Hope this is helpful
Take care
Tanya
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Thanks very much, everyone, for your kind welcome and helpful responses. It is nice to be able to bounce thoughts and questions off folks having similar experiences. Grannax2, my mets are in my spine. I am grateful they have not progressed further. As far as work goes, I am an attorney at a large law firm. It is a demanding job. For the first four months on Ibrance, I tried to keep working, but it became clear that I simply could not keep up. So I have stopped for now. My firm has a good long-term disability insurance policy, and I am working on applying for benefits. In any event, I appreciate your insights about fatigue and Ibrance. Hopefully it will get better with time. Thanks again.
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LXB, my MO has told me that my fatigue is not likely from the Ibrance. I told him I have a bunch of fellow patients on a support group who beg to differ.
Honestly, I don’t know if it’s the Femara or the Ibrance but the fatigue is real and is brain fog. I’ve been on this for 2 years at 125mg and have been fortunate to be able to work from home some. But, I’m finding that it’s too debilitating to keep on with f/t so am moving toward partial disability where I’ll work 60% time
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Yes, my MO also seems to downplay Ibrance's role in the fatigue. But it sure feelslike the cause to me. Like you, I am also on Femara. I suppose that could be contributing, but I started the Femara before the Ibrance, and the fatigue didn't really set in until the Ibrance. I have been anemic and my ANC gets pretty low on the Ibrance, so I'm sure that's a big part of it. Good luck to you as you make work changes.
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Hi everyone I received the results of the bone scan I had a week ago and it's still stable. We also received another surprise. My tumour marker had jumped up from from 600, after wobbling around in the 500s for a few months, to 710 so my oncologist was starting to plan my next treatment. However, the blood test I had last Tuesday showed that it dropped from 710 to 500 in the last cycle! That's the lowest it's been for months. We're all very surprised and can't think why it has dropped because it's been on an upward trend for ten months now. I'd like to be excited but I'm not. I just feel flat and confused.
My marriage is at an all time low. Every time I think my husband is getting his act together he goes back to thinking the world revolves around him and that I should be the same as I was when I was young and well. He promises to help but doesn't follow through. I'm living on my own again and if it weren't for my son I'd give up.
Sorry, but there's nowhere else I can say this.
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Netta, so sorry about your wretched experience and your having to go to the hospital! Hope you're well on the mend.
Leapfrog, good and bad news for you, but I'm happy about the scans and the TM going down. I'm sure that the results are confusing, though. Thank goodness for your precious son.
Jaylea, thanks for checking! We're back on the boat and still in Canada, which has been delightful! We've had several weather days, which have delayed expected progress. The Canadian waterfront and geography are spectacular and the people warm and lovely. I don't want to leave. We're planning to fly home from Syracuse, which is close to the Erie Canal, for my Faslodex shots in VA on the 11th and then return to the boat to complete the trip. Grannax, I'll let you know when we'll be near Kent Island. Wouldn't it be fun if we overlapped? I'm sure that your friend must have seen where that charter fishing boat ran up on TOP of a sailboat near Kent Island! Thank goodness, no serious injuries.
LXB, maybe ultimately your onc will move you to a lower dose of Ibrance. My brother, niece and nephew are all lawyers, so I can imagine your workload at a large firm.
Hugs to all-
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My PET is today. I hate PET prep, I WANT COFFEE.
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Grannax, I hope your PET results are spectacular and that you don't have to wait to long to see them.. As soon as you are finished with your PET, run to the nearest coffee shop. You have earned a nice cup of coffee.
Hugs and prayers from, Lynne
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Lynn- Your trip sounds amazing. Love hearing about the adventures.
Jen- I’ve been on the 75 mg for 2 years and don’t notice the fatigue any more. Is that an option for you?
Leapfrog- Depression related to relationships is real. I’ve been there and spent too many years trying to make someone selfish become considerate. It was always about him. 29 years later it still is, but I’m free from it.
I remember when you first moved out and were enjoying life even though it was tough physically.
Being stable is such great news! Is your pain any better? How about the blog? You seemed to enjoy it
. What would YOU love ...like doing things for DS who has been wonderful? It will be spring soon for you...any garden plans for your patio? And drugs like Ativan can help.
Complain away! We all get it and we think you are amazing!
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Greetings from the amazingly gorgeous northern Maine region!!!!!
Just doing a quick check-in here but trying not to get on-line too much and remain "off the grid!" I am definitely addicted to my phone LOL!
LXB - so sorry you are here with us - but like everyone has said - this is such an amazing, supportive community. I am incredibly grateful to have found it. As far as the fatigue - it is real. I went from working 6 days a week (I am an acupuncturist with a private practice) to working 3 days a week. My family is helping to support me through this process so that I can heal and live comfortably with cancer. For me, there is a level of it always being a work-in-progress trying to figure out what will be best for me and my self-care...it is hard for me to let go of things like work because I want to be independent and self-sufficient and take care of others...thankfully, my family sees the need for me to be really good to myself and can help me live a healthier lifestyle with less work and more time for me. I think the number one thing that has helped me survive the fatigue is EXERCISE. I thought I was exercising before but I wasn't to the degree I really need to be. So now, I work out about 5 days a week both at home with weights or at the gym. I hike, dance, lift weights and started a boxing class. I know it sounds like a lot, but my body feels SO MUCH BETTER when I workout. And never longer than one hour or else I am completely drained. Figuring out what works the best in terms of lengths of workouts and types of workouts has been an interesting journey. I started working out by using a free online program called Fitness Blender doing 30 minute cardio workouts. I hated it at first but love it now (And sort of hate it).
Grannax - good luck with the PETscan. Get that coffee afterwards!!! hugs!
Leapfrog - huge hugs!!!!!!!!!!!!
Joyner: love hearing about your sailing journey! please share pics!
hugs and love to you all. Sending healing thoughts and good napping vibes!!!
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