Good to hear this may lessen as the cycles continue. I'm still amazed that the side effect profile of this drug is so good. However, the last couple days have taken me out. Can't get out of bed today. Out of breath walking down the hall. Very achey. Weak. 3 more days and I'm off for a week. This will pass, yes! All the kids home this weekend. Timing not great but they are all enjoying each other.
Romansma, week one down and I have had no SEs. Perhaps getting used to the oxy and the last week combo is doing you in. I hope I don't get too weak and tired last week, supposed to go see my son and DIL in Washington D.C. that week. Only time will tell, sure glad I bought travel insurance. Feel better all and let's continue the wonderful vibes of health to all. Hugs, Myra
Five more days on my first cycle. I feel pretty good. My wbc are a little low so my o told me to do Neupogin for 2 days. I really don't feel tired. My appetite is a little less but I am ok with that. Getting my markers tested after completion of the first cycle. Praying this works works well on those of use use who have been been heavily pre-treated. Praying for everyone .
Romansma- the last 3 days were pretty exhausting for me as well but I bounced right back in the week off. I told my MO I would try another month at the 125 dosage but if I got the same type of fatigue the end of this cycle I want to look at a dose reduction. It was like bad mono
That's a good description, Lenn. Just really weak, tired. I shuffle instead of walk. Hopefully it lessens with subsequent cycles
Romansma, thank you for starting this thread. I have 2 pills left of my first bottle. I too have been having funky dreams. So far, a bit of fatigue, but not much else. My bloodwork this last Thursday showed my wbc is low. So, onward through the fog. Prayers for everyone from Texas!
First WBC tomorrow, keeping my fingers crossed. Do get fatigued in PM, don't know if it is the oxy or Ibrance.
Also very hungry in PM, anyone having this? Myra
I actually have less of an appetite than usual. I seem to get full very quickly and then hungry again in a few hours. Get a bit tired at the end of the day, but nothing too much. Taking into account the side effects of some of my other treatments, this one is minimal and I will be very happy if this works and I can continue on this for quite a while.
Just woke from a 2 hour nap. Still very fatigued, but not as weak. Weakness was worst on Fri and Sat. Wonder what changed. I have one more dose for this cycle. All in all I'm happy with the side effects too. Hope it works for a very long time. Oh, and haven't notice being more hungry. I lost my appetite on Afinitor and then gained 10 lbs taking Xeloda because eating helped with the nausea.
Are you on palbociclib? If yes since when? Pm me i want to know everything and most importantly how you are doing. Hugs.
Always get stressed starting a new med - Today will only be my 3rd day on Ibrance/letrozole combo, but after 2 days at least it's good to know there are no immediate side effects, so I feel more relaxed at least. Decided to take them at lunch time every day instead of dinner (I have also needed Prilosec for years since my 1st round of radiation, so I take that at dinner to spread it out), and I had no nightmares last night (the only unpleasant thing last night was a smelly skunk outside - surprised they survived the snowstorms, but apparently it is mating season, hope we don't have a family of them out there!)
I am not taking any painkillers right now (thank God radiation at least temporarily took care of the bone pain I was having this time last year, and I have no big lung pain yet although it has spread to the lungs as well, so I have not yet needed any painkillers since the radiation a year ago) - I wonder if maybe the nightmares or headaches some have are due to their pain med/Ibrance combination rather than due to the Ibrance?
Will have the blood test in 2 weeks to check the WBC count. I have failed both letrozole alone and faslodex alone, so I'm praying the combo works, will let everyone know how it goes. Good luck everyone, and hope it continues to work for as long as possible. Happy St Patrick's Day!
I failed letrazole and fasolodex also. Hoping this combo works. First WBC today and xgeva shot. Maybe it will be green for St Patty's Day! Myr
Im a failure on Letrozole and Faslodex too, so we all are lab rats on this combo hoping for good news! On the nightmares, pretty sure that is a Letrozole side effect. They seem to have calmed, so maybe it's just an initial reaction to the change in hormone levels. Spent another day unable to do much. Got my labs done, at least and will see Mo tomorrow. Looking forward to week off to gain no my at strength back!
Woody, I will message you.
Almost done my first cycle and the only thing I notice is slightly less appetite, but not anything drastic. My energy level is fine at work all day, but sometimes I get a bit tired later in the day and am not motived to do much in the evening. I think if I could sleep better that would be helpful with fatigue. But all in all, not difficult at all. I'm just hoping for the combo to work. Femara worked for me to get me to NED for five years from 2003 to 2008, so I'm concerned with taking again. My onc says it could work again in combo with the Ibrance, so we'll see.
My situation is a bit different in that my onc wanted me to stay on Halaven at a lower dose until he sees if this combo is working. I'm thinking if the Ibrance does work as well as we hope it will, that things will be even better once I am off the Halaven.
Getting my TMs checked tomorrow so we'll have some idea if this is working. My onc does take them frequently since they have always been very reliable for me.
Watching and crossing my fingers with you! Good luck with your blood results, Romansma and pearlady.
Thank you Sandilee. Praying for all of us on this combo. Not really so concerned with the side effects since I've had much worse. Have also read that whatever side effects you have early on will not get worse. My main concern of course is that the combo works. Have been disappointed before with Kadcyla. Will post after my TM results sometime next week. For me this will tell a lot.
At the MO now waiting for my Xgeva shot. Just finished getting a chest X-ray just to be sure for some shortness of breath and cough that causes a little chest pain. Hadn't heard, but this combo caused pulmonary embolism in about 2% of cases. I'm sure this is nothing, but better to be sure.
My fatigue and weakness was confirmed by low counts. WBC at 1.2 and ANC at .6. Red and Platelets down too, but can't remember numbers right now. I definitely need to stay out of crowds and away from sick people with these numbers.
Officially on a week off and ready for some quick recovery. I will do weekly blood draws for a few weeks to make sure they recover enough to keep going.
Thankful to have this treatment available to me and hoping we all get some encouraging results!
praying for you hope. Hang in here. Week off time. !
Romansma praying for good results from the chest xray and quick recovery from the side effects. Of course hoping that we all get good results from this treatment.
Hello all! Just got back from a loooong day at the Oncology Clinic! So, I got confirmation that my weakness and fatigue is from much lower blood counts. My wbc is at 1.2 with ANC at .6. Rbc just over 3 and Platelets at 90. Looks like the Ibrance gave me my money's worth! But, nothing so low that I need to lower dose, so that's good.
My tumor markers were unchanged from last month. I call that a win since they've been rising for months.
I've had shortness of breath which could be explained by the Ibrance causing low blood counts, fatigue, weakness. But, I also have a little discomfort in my chest on the right side from coughing and sneezing that started a few weeks ago. Didn't think much of it since its spring and allergy season here in California. My MO said that there was a possibility of pleural embolism in the trials (2%) so she wanted to be cautious and had me go for a chestX-ray. Said she would call if they see anything.
My calcium came back up to 9, so I got my Xgeva injection. When I've had it at this level, I've had flu like symptoms for a few days. Guess I'll gear up for a slow weekend! Netflix, take me away!
I will be doing weekly blood draws for a while until we are sure I'm tolerating the Ibrance and not neutropenic. All in all, I'm thankful to have this option for treatment. Things could be way worse, so I think I will quit my complaining and take a nap! Enjoy your afternoon!
hope cxr is clear and u bounce back quickly!
X-ray is clear! Now, for some recovery
Terrific news, Romansma! Hope you get your energy back soon. A friend who read the results of the PA study said that people benefitted from the Ibrance even when the doses had to be lowered due to low WBC counts, so it's good to know it can be effective even in lower doses, and for those who already tried hormone therapies. Also she says the Eli Lilly drug (taken every day, no week off) has been the most effective of the 3 similar drugs (Ibrance, LEE01, and the Eli Liiy drug) that are in trials and does not lower the WBC as much as the other 2, so things are improving all the time (however, I also feel very lucky to have this Ibrance right now and hope everyone can get it since it is the only one FDA approved so far).
IN ONLY 1 WEEK MY NUMBERS ARE DOWN! Blood counts are stable! Prayers for all this is working. We all deserve all the good news we can get! Myr
Good Morning Ladies! I just finished my 1st bottle of Ibrance. I'm taking with Letroxole. My tumor markers went from 185.4 to 166.4. Hallelujah! My white blood count is low at 3.43. Other than that, I got Zometa thursday as well and that knocked me for a loop. Extremely tired, slept what seems like 48 hours straight. The only thing I have noticed is a drop in appetite. Pretty sure the zometa was the culprit of the extreme fatigue. ANYWHO, looks like its working so far, keeping my fingers crossed. So glad to have all of you to converse with. Prayers for all of you!
Love all this positive news!
I'm happy I found this thread. I will be starting tomorrow evening when I get my first shipment. Goodluck to everyone!!
Romansma so happy for the good news. Now prayers for everyone that this combo works.
Hey gals, well, my tumor markers went up a few points after round 1. Since the increase was small, my onc is saying I'm stable and we're going ahead with round 2. Fingers crossed.