Ibrance (Palbociclib)
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Welcome! I have only a few mouth sores and tiredness after two weeks. Getting my blood counts checked today, will let you know. On faslodex and 100 mg Ibrance. Most common side effect is the low blood count.
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For the first two cycles, blood work was every two weeks. I have now "graduated" to once a month.
*susan*
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Hi Jobur,
I get my blood work done every week and my WBC is always low but my MO keeps me on ibrance. I have big bump on my left arm ( not the lumpectomy side) that hurts and is swallow, like a hive rush and it comes and goes too.
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Lenn13ka thank you for that information. I was NED on femara previously for almost five years. My onc did tell me that with the Ibrance, since the femara worked so well previously, the hope was that it would work again. So far, so good. He also told me that when it stops working, he would switch to Faslodex/Ibrance. That sounds pretty much in line with what your onc has said.
Also I noted earlier that you were mentioning hair loss after nine cycles. Is the hair loss continuing or has it leveled off? Just wondering. I've been on Ibrance/Femara since the end of February, so I've lost count of the cycles.
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Pearl Lady - the hair loss has leveled off. I just had blood work done and despite having a wild ride in the beginning with WBC, RBC and # Neutrophils .. My counts now are All in the normal range. # neutrophils that hung around 1.0 is now almost 3.0. They consider me stable on the drug now ( as far as tolerating it well) It took about 6-7 cycles and one dose reduction to get to this point. For all of you just starting, it may take a few cycles to get everything worked out.
Each month I do have one funky side effect. This month was mouth sores. I haven't had the bumps yet..but have had nose sores, hair loss, etc... But they all seem to level off in time.
I asked yesterday why the 2 years in this trial. My MO thought they would have made it more but they didn't think they would get people to sign up. She is going to ask the Doc who is running the trial and get back to me.
Welcome to all the newcomers to Ibranceland....
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Len and Ziz, Are you both "early" (not 4) stage gals? Are you on Ibrance alone or in combo with an AI? Interesting if it is being prescribed to stop recurrence as well. Hope it works for us all regardless.
I tried a little generic 1% hydrocortisone cream on my various bumps before bed last night. Kept me from itching & scratcing anyway.
Best wishes for a good night to all in Ibranceland.
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Jobur - Yes I am stage 2 . I am in a phase 2 clinical trial out of Dana Farber with just 160 people enrolled so, it is not really being prescribed per se. But, that is where they are heading for sure. It is only approved for stage 4 right now. I am on tamoxifen but will be switching to Anastrozole in November. This trial is just addressing dosage issues and if people will take and stay on this drug a long time. I have been enrolled since January 2015.
I was glad when Hope started this thread as I didn't have any reference as to what to expect . There was just a few of us in the early days. Now there are so many here! I am so glad iIbrance is working for many of you stage 4 gals.
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Hi everyone... jumping over to this thread by recommendation. I am newly diagnosed with stage IV MBC this past June. I just started my second month of Ibrance... also doing hormone therapy and Zometa. So far, my worst complaint is extreme fatigue and I tend to experience a lot of bone/muscle pain from the zometa when first administered. Takes me several days to bounce back. Still waiting for my first 3 month scan which will be mid-October to see if this treatment plan is working. I am curious about long term side effects from the Ibrance. I only just started so I really have no idea what to expect. So far I seem to be tolerating it with minimal side effects. Looking forward to stalking all of you for information.
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Hi Chattykat, Like you, I am in my second month of Ibrance. For me, this is so much easier than other treatments I went through. Glad to hear you also are having minimal side effects. I hope we all have a very long success with this treatment.
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Jobur;
I was diagnosed with MBC last June and I'm on my 3 circle of ibrance/ letrozole. I have had 2 shots of xgeva.
Side effects are minimal. I can still everything I used to do before the cancer in 2013.
Cheers
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Well, Here I go on the Ibrance/Femera combo tonight. I was Dx Stage IV immediately. My emotions are finally calming down a bit (except those certain little blips that set me off). I have high hopes that this is good to me and everyone else out there who have been soooooo tremendously generous and helpful here. I plan to take advantage of all the supportive programs my facility offers i.e. acupuncture, massage, groups to help me along. I will be follwing this thread to cheer you all on as well as gain education and tips. You ladies are a lifeline...
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Good luck, artistatheart, I think you will find that this is a very tolerable drug. I am on 125 dose for 6 cycles and tolerating it well. If you are an artistatheart, art can be very therapeutic if you can find the time.
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Thanks 3Holly, I am a jewelry and glass artist but haven't felt very inspired since Dx.....Now that I am starting my Tx maybe I will ease my way back into my therapy! I wish you years on this reg!
I was wondering how many of you have an Onc who completely Poo-Poo's any sort of supplements for getting those blood counts up? Or anything else for that matter?
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artistatheart, when asked, my UCLA onc said she does not recommend supplements aimed at increasing my counts. She said that low counts are an expected SE of Ibrance... that they usually rebound quickly... and she wants to see how I do without them. By the way, one reason I initially chose UCLA back in 2008 is that they are big on integrative medicine, so I knew they wouldn't poo-poo my natural tendencies and strong belief in the need for supplements. And that's always how it's been there, including consults with an integrative specialist and recommendations for supplements. UCLA even has a supplement shop in their main medical center. So this was not a case of a clueless doc saying you don't need supplements, which is why I am following her advice.
I realize this is contrary to what some here are doing with much success, and it may just be a matter of wanting an accurate picture of how I react to Ibrance (finishing my first cycle tomorrow -- yay!) without supplements, and she may okay them later. And I'm still taking the basics I've always taken -- C, E, a calcium complex, D3, curcumin, and a few more. I just didn't add anything specifically aimed at helping my counts, which have already taken quite a hit. Deanna
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Lenn13, Thanks for the interesting info on your clinical trial.
Ziz, Sorry to hear you are stage IV too. Glad to hear your se's are minimal and you are feeling good and living life. Hope this combo works for you for a good long while.
Welcome Chattykat and Artist, but sorry you need to be here.
Chatty, were you told to be well hydrated before and after Zometa? I found it made a big difference.
Artist, this stage IV stuff takes some adjustment to say the least! Go for any and all support you find helpful.
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Hi jobur... No, they didn't tell me initially about being properly hydrated, the nurse just told me that I would experience flu like symptoms. What I got on my first treatment of zometa was a night of excruciating muscle/bone pain. I was blind sided... but, went into the second treatment more prepared and things went much better the second time around. June was such a whirlwind of activity and I was so overwhelmed... the road to diagnosis and treatment is brutal. I'm only just now able to clear away some of the fog so I can try to fully understand my treatment, the medications, side effects etc... Glad I've found this support group though... it's been very helpful so far.
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I was also told to hydrate well before ANY treatment and it certainly does help . I had my faslodex shots and zometa and Cycle 1 day 13 ibrance yesterday. So far so good. Low counts, but onc keeping me on, said she wants to give the drug a chance to be effective, being checked again in 2 weeks, which surprised me .. I thought she would check in 1 week! (For newbies I was on 125 mg for 1 week a month earlier but too ill so onc stopped and started me again on 100mg). Thank you pear lady .. You said don't be afraid it's a walk in the park, and so far you are right! "Hope is the thing with feathers...
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PS Onc did say call if fever over 100.4
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my onc did, she said no supplements other than multi vitamin
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LOVE LOVE LOVE hearing this ! Thank you for inspiration!!!!
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My onc has me take calcium with vitamin d twice a day, and tells me to take it 4 times a day on the day I get my Xgeva shot. She also does not want me to take any other supplements. I am to call her if my temp goes over 100, so far it has not at all
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I'm going to ask my onc about taking extra calcium the day before... that makes sense to me. I already take the calcium/vitamin D twice a day. I'm also wondering about this extreme fatigue. Is it the Ibrance? Or, is it the hormone therapy? Or, is it everything coming into my body all at once?? Hard to say... but, I have days when just a short trip to the grocery store knocks me out for the day. Very frustrating. My onc also said to take nothing additional outside the treatment plan without her ok. And I was also told to report any fever over 100.5.
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My onc sent me to an Integrative MD to get my supplements straight and took me off calcium with the Xgeva and D only. Funny how they are all different. I was also told to call if my temp goes over 100, which after 5 rounds luckily it has not
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ChattyKat,
I felt like you do now a year ago. You sure put your finger on it, the road to dx and tx IS brutal! Your mind is struggling with the dx and all the new info while your body is still trying to fight the cancer and get used to the new drugs that are going into it! Try to get as much rest as you need. I used to take an afternoon nap a lot of days. I would tell myself I was just going to lay down for a few minutes and zonk right out for an hour. Fatigue is a big se of both Ibrance and Faslodex, but I think you will find you feel better in a few more months. Hang in there!
Jo
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Ok ladies I'm a little frustrated. I started ibrance 100mg with Fomara the middle of July. After 2 weeks my blood work plummeted. My platelets dropped to 27so I had to lay off 10 days. It brought my markers down to the lowest since May 2014. I started back 2 weeks ago on 75mg. I did blood work yesterday and my platelets are doing good but my TM made a big jump up. One went up 55 points but the other went up 160 points. My BC came back not just in the bone but also the bone marrow. I try not to be discouraged but I seem to go from one drug to another in the last 15 months and nothing seem to keep it at bay for very long. My ONC says this is my last oral medicine. The next step is iv chemo. Was praying it would be much later than sooner.
Does anyone else have there BC cancer go to the marrow and not just the bone? I can't seem to find any info about this and what the difference and prognosis is. Can anyone shed any light?
Thanks Suzanna
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It is interesting how different oncs have different takes on the Ibrance and what you should and should not take with it. I have been on Ibrance since late February. I was advised by my onc that I could take supplements to increase the WBC and RBC. I was unsure so even went as far as contacting Pfizer. It took me a while, but I finally was able to speak with someone who was able to assure me that nothing in their research showed that the supplements I mentioned were contra indicated. I still sometimes wonder, but I've been having success with Ibrance for almost six months. So I would like to think its okay. At the end of the 21 day cycle my WBC and RBC are still low, but not dangerously so. I don't usually take any supplements for the WBC and RBC other than Maitake during my week off and my numbers are always back to normal by the start of the next cycle.
Myra I was advised not take take calcium also. I do take D3 and Selenium.
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Suzanne, since the 100 mg. of Ibrance helped your TMs so much, I'm wondering if they can get you back up to that, now that you're doing well on 75 mg. Maybe 100 was just too much at first, but maybe now that your body is adjusting to it, you can go back up to that and hope it will continue to lower your TMs the way it did initially.
As far as mets to the bone marrow, I have that -- or at least it was found when I needed a hip replacement for a fractured femur in 2014. And while I've read here in casual comments (not research per se) that it can be a bit worse of a prognosis, from my experience, I don't think it makes any difference, as long as you're on a tx that's working for you, it will work on everything. But I've also read that if there is extensive damage to the bone marrow (like when some has a true cancer of the bone marrow, like multiple myeloma or aplastic anemia), it can be harder for blood counts to rebound, so if you have a lot of bone marrow damage, that might be why you had a problem initially, and maybe even a situation where blood building supplements might be helpful, although I'm not a doctor -- just thinking out loud about your situation.
As far as drugs not working, you may want to get ahold of Romansma here. She recently had a new test called the Guardant 360. Not sure if she's gotten the results yet, but it sounds very promising for figuring out best individual drug options!
Editing to add... pearlady, we were writing at the same time. Good to know you spoke directly to someone at Pfizer! And what is the thing about not taking calcium? That's concerning to me, especially since I'm not yet on Xgeva.
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Deanna I think since you are not on Xgeva or Zometa the calcium is probably okay, although I don't know for certain. I am on Zometa and I think his recommendation was since I was on Zometa. Again, this is probably something that is up for discussion.
Also if you don't want to take supplements for the RBC my holistic pharmacist recommended blackstrap molasses mixed with water. Not the tastiest thing, but its said to really help. He also recommended bone marrow broth for the RBC, which is something popular in NYC right now. I've not tried it but I know others who have.
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I understand you recently had blood work done for guardant360. Can you tell me a little about this and why you did it? Have you gotten the res
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Thanks Jobur... it is so much to process at once and I will keep hanging and swinging until the dust settles!
This happened in the midst of my daughters high school graduation and getting her off to college so I definitely have not been resting enough. I mean, I'm a mom... there is no such thing right?? But, now that school has started I am taking time to step down from everything, re-focus, educate myself more and just get my head together. The Dr. gave me a prescription for some lidocaine patches that are helping me tremendously with the aching along my spine and rib cage, two of my most affected areas. It's helping me sleep better. A thought about the calcium thing: My onc told me that calcium levels have to be in a certain range before they can give the zometa. So, I'm guessing if someone is already taking in a lot of calcium through other sources maybe the extra calcium isn't needed. Maybe mine were too low so I need it more than someone else. But, I think I will add this to my list of questions for her at our next visit... it's getting longer by the day!
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