Ibrance: I’ve been on Ibrance 125 since... - SHARE Metastatic ...

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kkrouse profile image
23 Replies

I’ve been on Ibrance 125 since December. The results are fantastic. My 6 year old, 1 inch tumor, my biggest, is barely detectable. However the fatigue is really affecting my quality of life. If my next scan is still good, we may drop to 100. I get mine with flovastant ( sp?). I was on Letrozole for 5 years until neuropathy became unbearable and it was no longer effective.

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kkrouse
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23 Replies
Hihif profile image
Hihif

Congratulations! That is AWESOME! Fatigue is my biggest issue also. I’m going to try an iron pill and eating/juicing/ninja blending more greens. This is based on recommendations by others taking Ibrance/Palbociclib. I’m also going to try to exercise more. (Another recommendation I received.) I’m taking 125mg and also Letrozole. I find that I have four hours a day that I can get something done with resting in between and after. Since it is my second month, I’m curious how much others can get done every day. Do you know anyone working full time on the medication? How many hours can you cook, exercise, do laundry, etc a day? I’d like to go down to 100 mg. But my doctor wants to keep me at 125 mg.

I’d love to hear any tips you have to survive the fatigue and keep your spirits high.

Clair19 profile image
Clair19 in reply toHihif

Hey I’m like you usually my energy level is better in afternoon. It takes me forever to wake up and moving. I’m only taking Faslodex right now and still no energy. I’m wondering if it’s the cancer to the lung? But I had it last year and index was 817, now 425. So I think it’s the Faslodex because that’s a side effect. For now I just do what I can and worry about can I make it through Atlanta airport in a month. I only took Ibrance 21 days but had energy. I guess people have different results and body makeup. I do drink those small energy shots that have iron they work for me.

JBirdnut profile image
JBirdnut in reply toClair19

Why did you only do the Ibrance for one cycle?

Clair19 profile image
Clair19 in reply toJBirdnut

Hey, because my Neutrophils went from normal to 500 in one week. Then same with wbc, went from normal to 1.6. My oncologist pulled me right off because they still where low after 3 weeks. So now I’m on Faslodex. I will decide after my vacation what to do. I had 6 months of IV Chemo and 3 weeks of Ibrance that just ended. So I feel I will be okay for 10 days not on anything. I want my blood, body, and mind to get a break from all the stress of chemo.

kkrouse profile image
kkrouse in reply toClair19

I hear you. It’s always something. I’m just so tired. And mental fog is depressing. Good luck with your break.

Snowcone16 profile image
Snowcone16 in reply toHihif

I am working full time...plus a part time taxi driver to my teen. And I have air travel 4 times per month. I know each cycle can be different...so far, so good. Although I’m okay just sitting on the couch watching the ID network or Forensic Files all day on weekends too!

I’m up by 5 am and usually laying back in bed by 7pm. Time adjustments can be a challenge w east coast and west coast. Melatonin helps me adjust.

blms profile image
blms in reply toSnowcone16

Yes, my cherry flavor melatonin is the best. Chemo and radiation kill the melatonin in your brain and then there is this age thing!! I only take a 2.5mg. and that is enough for me to get a good nite sleep and wake up feeling good. Now, of course, after a few hours, I begin to slow down--that just ticks me off. But of well!

Gmaoftriplets profile image
Gmaoftriplets in reply toHihif

Fatigue is my issue also , I am taking Ibranace 125mg and letrolzole. I have been on this treatment now for one year. I still work full time. I am usually sleeping by 9pm, mornings are my best time of day..my last scan in March showed NED, I have not had any surgery, I was stage 4 from initial diagnosis..

kkrouse profile image
kkrouse in reply toHihif

I’m really struggling with the fatigue, but if I can push myself to do time on the treadmill, I seem to get more energy for a bit longer. About 4 good hours is right. On the worst days I can barely move and I fall asleep frequently during the day, and sleep all night. On the off week I’m still tired, but fidgety, and can’t sleep at night. Ugh. Do you get brain fog? Mine clears just before I restart the pills, just for a day or two.

blms profile image
blms in reply tokkrouse

melatonin sublingual cherry flavor is great. Start taking 2.5 mgs under tongue about 30 minutes before you want to sleep. If that doesn't do the trick go up to 5 m gs. It does normally take about three days to get into a sleeping pattern but who knows.

kkrouse profile image
kkrouse in reply toblms

Thank you, I’ll try that.

Snowcone16 profile image
Snowcone16

Congratulations! Great to hear. Please ask your dr about iron levels. I was exhausted for 2 months thinking it was the new norm. My next labs, dr said my iron was low. I was 25 and norm is like 50-125. I started 325mg of iron and overnight felt like myself again.

kkrouse profile image
kkrouse in reply toSnowcone16

I will ask when I get my shots in two weeks.

Hihif profile image
Hihif in reply toSnowcone16

I’m trying to figure out if I’ll be able to work full time while taking Palcociclib and Letrozole. Are you working full time?

blms profile image
blms in reply toSnowcone16

I'll keep the iron supplement in mind.

lashinator profile image
lashinator

I found the first month was the worst for fatigue. I am just starting my 3rd month and have seen major improvement. I am on 125 and the week that I'm off is my tired week. Trying to keep track so I can prepare. I exercise 5 days a week and I know that is what gets me through.

Didn't have my first scan yet, so I don't know how things are working. Congrats to you on your excellent diagnosis!!!

Hihif profile image
Hihif in reply tolashinator

Trying to figure out if I can work full time. Are you working full time or knowing anyone on Palbociclib that is working full time?

lashinator profile image
lashinator in reply toHihif

Yes- I work full time, and my evenings are pretty booked with exercising. I find around 4-5 I get tired. That's my break time. Then I'm up and running. I'm also taking a class 7-9 for the next 4 weeks that I have to study for, one day. On vacation next week, so maybe I can study then. Soooo looking forward to vacation, only looking for a yoga next week. Otherwise IM ON VACATION.

PS- Im at work now :(

Hihif profile image
Hihif in reply tolashinator

That’s great that you are managing everything so well. Do you have nutrapenia or low white blood cell count?

kkrouse profile image
kkrouse in reply toHihif

I’m retired. I know I could not work full time on this combo. I’m so tired and my stomach is often upset or painful. I don’t know anyone else on this med other than those on this site.

kkrouse profile image
kkrouse

My fatigue hits on day 10 or thereabouts. On that day, maybe two, I can’t move. Then again after pill 21 for a few days I fall asleep anywhere. I’ll ask about the iron.

lashinator profile image
lashinator

My wbc has been a little low, but not under the numbers. My first scan is in 2 weeks. I dont want to jinx anything yet by being overly optimistic. I honestly cant say I'm doing that well yet, until the scans come back. Just excited to have a cancer free week (in my mind) this week. When I get back from vaca, I'll have 3 appointments, then maybe results towards the end of that week.

kkrouse profile image
kkrouse in reply tolashinator

Sending positive energy. It’s working really well for me. It’s just the side effects are annoying, to say the least.

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