Ibrance (Palbociclib)
Comments
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Is it okay to take probiotics while you are on Ibrance? This fat tummy of mine just won't go away no matter what I do. My sisters starting taking probiotics and they are losing so I want to try it too.
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arbojenn, probiotics shouldn't be a problem. In fact, they are generally good for us. I would just be careful to read the label to be sure there are no grapefruit derivatives (not a common ingredient for probiotics, but still a good idea because of the problem with Ibrance and grapefruit). I would also maybe look for a liquid probiotic, as opposed to a capsule, which normally is made with cellulose, which I personally feel contributes to the gas and bloating -- at least if you take multiple supplements and get a lot of it.
By the way, you can always call Pfizer (their customer service phone # is on their web page) to be sure. JMO.
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Jazzy, i too recently had an ANC of 800, my lowest yet. On 125. I was not taken off Ibrance... Nor have they lowered my dose. I think they are looking to see if it'll go up next time, but there was no urgency in taking me off. Unless you have other extenuating circumstances, which you may, that led to that decision
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dlb823 - Thanks for your response. I see my MO later today and will discuss staying on the Ibrance with the lowered ANC. I have lymphedema in my my right arm (my mastectomy side). Will discuss this as well. Lasix was prescribed for the swelling.
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Jazzy, I would also check the Faslodex thread, as yesterday there was just two women on this combo that were talking about huge leg swelling issues. One was instructed to take a diuretic which she said helped. The other hadn't been to see her Onc yet....
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Jazzy, I was taken off of Ibrance at day 11 for low neut .860 and by end of that week they went even down to .600 they retested me a few days later to make the new decision based on that blood work, and I I had to take an extra week off- I have been on Ibrance for 10 months now and it took awhile for me to get to this point of 75mg 2 on and 2 off. I am scheduled again to start this cycle next Tuesday and will have blood work on Monday first. I am hoping this round I will have better rebound numbers. I will be honest in saying, I feel better on Ibrance then off of it. Must be my numbers really tank when I am off and I need two weeks to rebound back.
Hugs, Carol
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Carol, I felt the same, better on Ibrance than off (you know, in my long experience with it! LOL!) I asked my trial nurse about 75mg 2 weeks on, 2 weeks off, she says it may get to that if the 100mg doesn't work for me. Do you find anything helps your numbers bounce back? Nurse says there's nothing to be done, but I am ever hopeful for some tips from people who are actually on the drug.
arbojenn, I am on a trial & so they are very particular about what you can & cannot be on & one of the things they said is ok is probiotics.
jazzy, I have no advice, but hope you get some relief soon,
just want to thank everyone for their input on this thread, this is all so new to me & I love being able to read about how everyone is getting through it all. cheers, dee
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Dee- I asked the same question and there is nothing that you can eat or supplements you can take that help your bone marrow recover faster. I am Vegan and added fish back in thinking that was the reason. Your MO is correct. I had an absolute horrible first week off. It didn't hit until day 2-3 after I finished my last pill. Today is day 9 off and I can feel the improvement. I willl get a CBC the day before I start (next Monday) and will share with you where I was before I finished and where I am on Monday.
Hugs, Carol0 -
My 6 month scans came back this morning. I had to hand carry my scan records from January and April to the reviewing radiologist yesterday morning in order to get the report done in time for my trip to Seattle (I hear you Shetland Pony!). But the news is good. To summarize: the tumors in my breast and lymph nodes continue to shrink. I don't have any evidence of metastatic disease. The only remaining met is a lesion in my sternum which is probably healing.
For those of you just tuning in, I was diagnosed de novo with ERPR+ breast cancer in January. I have not had any surgery or radiation. I have been receiving systemic treatment only (Ibrance/Letrozol) for six months. I follow an aggressive complementary regime which includes Alpha lipoic Acid IV's, metformin, diet and exercise, supplementation and quite a bit of chocolate.
The primary tumor in my breast was 4.2cm by 2.3cm in January. It is now 2.8cm x 0.6cm. That is one long thin tumor. I need to look at the scan. I had multiple satellite tumors in the breast in January but they do not mention any other lesions in the breast in this scan.
The January report found multiple enlarged left axillary lymph nodes in January. The largest was 1.8 cm tx 1.1 cm. The largest is now .5cm x .6cm.
The january report found mediastinal lymph nodes measuring 1.7cm. This report found no enlarged or suspicious mediastinal lymph nodes.
The January report found 5-7 lesions in my liver. The largest were 1.5cm x 1.1 and 1.4cm X 1.2cm. The current scan found no lesions in my liver. They called my liver "unremarkable" which is a kind of insulting way of saying it is normal, IMO.
This report found barely detectable sclerotic lesions in the mid-sternum, possibly cancer, possibly healing bone from treated cancer. The January scan found nothing. That is the only thing that got worse in this scan. I've heard that very minimal bone metastasis may become visible only as they heal. I plan to check in with the ladies on this bone mets thread about this.
So, a fantastic scan overall. I must be tired and emotionally fried because I don't feel much. I am on the plane to Seattle to go the Fred Hutchinson Center as I write. I guess the question is what to do with the primary tumor if I remain free of detectable metastasis for a couple more scans. My hope is to get rid of the remaining tumors in my armpit and my the primary tumor with systemic therapy. I will certainly keep going with this treatment protocol until the next scan in November/December to see if we can bring them down some more.
Dee - I feel shaky, cruddy and exhausted on Ibrance and I don't have a reduction in neutrophils or WBC. Felt terrible days 1-3 of this cycle when I forgot to take loratadine. I am back on claritin/loratadine as of Monday. I have maybe an 80% reduction in fatigue since I got back on loratadine. what a weird thing that an allergy medication should reduce a chemo side effect. i am sure no one knows why yet. Claritin may or may not be allowed in a clinical trial, but it is something to consider.
Shetland Pony - planning some TLC for week three is a really good idea. i'd have to cook enough to get through my week off as well which has been hard.
lala - pet scan machines give me the willies and the contrast gives me the flu and the whole medical thing gives me a panic attack. i wasn't aware of how much it was effecting me until it was over. all very subconscious fear. my thoughts are with you on the 18th. hate to do Xanax but I need to consider it. I also want to move towards fewer scans and a less standard medical approach. But I need a few more good scans before I try that.
Ainlowa - Welcome to Tribe Ibrance. I've never had any issues with my stomach from Ibrance, but I could barely eat for the first 3 months. One thing to always consider is PTSD. I think that all women experience PTSD when they are diagnosed stage IV. There are any number of things that could trigger PTSD after the initial diagnosis. Gastric issue are a common symptom of stress. This speaks to Shetland Pony's advice on strategic TLC.
I just recently went through a CT Scan and even though I got good results (above), I am aware of symptoms of shock/panic/trauma from the procedure and getting the report and analyzing the report.
Artist - thank you for the kind thoughts.
Faith - have a great trip
Jazzy - I have felt increasingly bloated on this therapy despite no significant weight gain and regular exercise. I have had some measured evidence of it in my arm. I suspect the hormone therapy. Living without estrogen is going to have all kinds of weird effects.
Hang in there everyone.
>Z<
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I have been trying to read all of the posts in this topic. So much information. I will be starting Ibrance in 2 weeks...75 mg/2 weeks on, 1 week off. I am currently on Aromasin, Kadcyla and Xgeva. Is anyone else on the same combination? Would anyone be willing to give me some tips...when you take your dose, with or without food, do you take allergy meds....basically anything that might help me as I get started. I know we all react differently, however I am concerned about whether I will be able to continue working full time. Thanks in advance!!
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Z! I have chills. I am SO THRILLED FOR YOU. You are an example of someone who is truly succeeding on this treatment. You give us all such hope. Sending you a virtual hug!!!! Sounds like the metastatic aspect of your case is resolved (obviously for now, but heck.... let's say FOR GOOD shall we?). What's left in your breast I suspect will continue to shrink. If my case follows yours in progress my next step will be a lumpectomy. Already spoke to the surgeon and oncologist and both agree that is the next step followed by radiation. I'm super curious to hear if your doctors recommend the same thing, so please keep me/us posted! This is obviously the part where minds tend to vary in approaches....
I know of a few people who have lived for YEARS as Stage IV... mets to the liver and they either went away (and stayed away) or stopped growing and haven't progressed. And by years I mean 15.... 18.... ++. I hope we all look at this and realize the possibilities. It's way too easy to get down and upset and depressed. But there IS hope. Thank you for sharing your results Z. I have no doubt the treatment is contributing in a big way, BUT everything that you are doing is SURELY making the big difference. Keep it up and PLEASE continue with that chocolate
Tonight though add a glass of red wine with it.... you've earned it!!!! CHEERS! It's okay for us to be HAPPY too.0 -
Hi all, new here! Also on my 2nd cycle of Ibrance and Faslodex. I experience no hot flashes or GERD that most of you do. I do experience a sore throat (almost constantly and dizziness). I feel kind of alone here, but I feel so off balance that I am affraid to go out shopping. Anyone else??
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After taking Faslodex injections every other week for six weeks, I need it sooner!!! I am not due for 4 weeks now and can't breathe. I was wondering if instead of two shots alt a time, every 4 weeks, if they could give one, every 2 weeks. I have lung mets and feel this drug has helped more dramatically than Ibrance. Now my MO is on vacation and I will see a nurse practioner, which is ok.
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Z, I am so happy for your good scan results. It gives us all hope of similar good news. I hope you are able to enjoy your vacation trip to Seattle and come back with some interesting new things you learn at the cancer center. Wonder if you continued to take the Claritin on your week off if you would feel better. I agree we all go through PTSD when we get this news but I also think I went through all the stages of grief too.
Lunalin and Ohmydarling, welcome but sorry you have to.be here. Hopefully you will get lots of good info from all the smart women here.
Eelder, I love hear you say you know women who have been stage 4 for many years. It gives us all hope.
Well girls, I have so much more I'd like to say to everyone but it's been a long day getting ready for this vacation and will probably be one again tomorrow before I finally feel ready. Everything takes me so much longer to do these days. I feel like I'm in slow motion and I just can't concentrate on anything. I think it's the letrozole making me crazy.
Have a good night all,
Faith (in the future
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eelder - I so don't want to go through surgery or radiation. Partly it is my medical phobia and partly because I've known people who have done it. it is very hard on the body and i really question whether it is the right thing given that we're trying to hold ourselves together for the long haul. I hope the systemic therapies take care of the primary tumor and the question never comes up. I hate the systemic therapies but I have to be on them anyway.
I am still puzzling over shape of the primary tumor. it is now 2.6cm by .6 cm. It's the shape of a small tootsie roll. Well lots of surface area for my immune system to attack ... ?
faith - thank you for your kind thoughts. i definitely went through every stage of grief a few times. those first few months when you are evaluating treatment options and dealing with the diagnosis "process" are just terrible. glad that you are heading off on vacation. i made it to seattle. exhausted, but starting to relax after the scan, the packing and the travel.
Lunalin - the ladies on faslodex and ibrance hang out on this thread. the ladies on just faslodex hang out on this thread. i am very anxious that you should figure out what is going on with your breathing. I can't imagine anything more stressful or detrimental to QOL. Please ask questions until you figure it out.
Ohmydarlin - I do take allergy meds (Claratin) as it seems to somehow reduce the fatigue side effect of Ibrance for me. This is not something recommended by doctors or Pfizer. It's just something I heard on a board and tried and it seems to work, for me. Ibrance is somewhat more consistently absorbed when you take it with food, according to some pharmacological studies.
Welcome.
>Z<
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Saw MO today. ANC was 1.2 after 2 weeks off. MO agreed to let me stay on the Ibrance if my ANC goes below 1.0 as long as I don't spike a fever. She is willing to let it get to .7-.8, but no lower. Will have more bloodwork in 2 weeks.
As a couple of you have said, it is not while on the Ibrance that I feel the worst fatigue, it is during the off days.
In regards to the swelling, MO told me to consult my PCP to continue following that.
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Z-absolutely wonderful scan news. I've been where you are in not being able to process your feelings on good news. It is a PTSD type reaction. You will let it sink in. Get your new information, then take time to breathe and relax a bit!
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Z, Congrats on the best scan results and ultimate results from Ibrance that anyone could dream for!
So....a few months back my bone scan said increased uptake in the thoracic spine. CT scan said, lytic lesions have sclerotic rims and is responsible for the increased uptake in the bone scan. That means lytic lesions are starting to heal!! They always note to watch carefully this area!!!
I am so happy for you!
With all this being said, I am able to get the two weeks off because of how I metabolize this drug now. The Ibrance wipes me out to the point that I think it's the cancer that is causing all this burning pain and low energy. and not the drug. What, I have learned 2 cycles in a row now, is this.. by day 10 off, every single symptom is gone- So that gives me 4 days of normalcy that I feel 99% normal. I will take the 8 days a month and smile. Ibrance could be this miracle drug we have been waiting for.
Enjoy your trip, and I have not walked once this week, I am getting out there today. I had a bad week off-
Hugs Carol
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Hi Ladies,
Have a question on Ibrance for you. I started Ibrance in March - they felt I had a reaction and my oncologist went a bit crazy and sent me to see an allergist. The story got muddled along the way and I didn't have the kind of reaction they wrote in my chart. So after waiting and waiting, talking to Pfizer, we finally got me started again on the Ibrance.
In June, I had my 3 month CT scans and it showed what they felt was pneumonia in my left lower lobe of the lung. I had no symptoms- no cough to speak of, no fever, no chills. My oncologist got concerned that perhaps I had developed "pneumonitis" from the Ibrance and ordered another CT scan in July. The "pneumonia" looked even worse. He sent me to see pulmonary doctor who strongly felt I had "Pneumonitis from the Ibrance" They put me on a pretty high dose of Prednisone for 2 weeks. By the time I saw the pulmonary doctor, I was hurting on the left side, having some shortness of breath and a bit more in the way of a cough. Within 2-3 days of starting the Prednisone, I was feeling better - not hurting, breathing ok, etc.
A week after seeing the pulmonary doctor and a week into being on Prednisone, I saw my oncologist in follow up who did not believe that my problem was coming from the Ibrance. He had talked to the radiologist and they felt it was pneumonia - there was no data to support Ibrance causing pneumonitis.
Yesterday, I saw the pulmonary doctor again in follow up. He feels VERY strongly that I developed "Pneumonitis" from the Ibrance - maybe there isn't documentation but it is still a fairly new drug and I may be only one of 4-5 across the country that has had this happen to them. They are recommending that I never take the Ibrance again - it will set up the pneumonitis again and my system does not like steroids.
I know this is long and I hope not too rambling but was just trying to give background information. My question to those on Ibrance is this? Have you had problems with your lungs? What was thought to be a pneumonia or pneumonitis? I will now have to go back to IV chemo - think he said I would be on Doxil; that is if my oncologist believes what the pulmonary doctor says. However, with it in writing that they feel my lung issue was related to the Ibrance and I should never take it again, don't think he will just dismiss that.
So if you have had problems with your lungs, would love to hear from you. I hate to leave it behind. We had just discovered liver mets, my tumor marker had come down 100 points and don't think we will ever know now how effective it "could" have been. Just it was a pill and I didn't feel as tired as IV chemo makes me.
Hope all of you do well and have a very long run on the Ibrance. Thanks for reading and responding.
Brenda
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Brenda, I haven't been in your situation nor known anyone else with pneumonitis, but if it's any help to you, I just did a quick Google search and came up with this Pfizer paper dated 2015 that does mention pneumonitis as a risk factor. Still not sure how that relates to your specific problem, but it may well be why your pulmonary doctor believes so strongly that Ibrance is the problem.
http://www.accessdata.fda.gov/drugsatfda_docs/nda/...
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Z - I am so thrilled for you! Best results - you are my hero! I am walking everyday, now in Portugal at Mateus Palace. Guess what we sampled? Gulped down Ibrance with a lot of history and a little wine seems fine. How are you Kaption - what is your new protocal? Welcome Lunalin - try taking a friend shopping with you to see how you feel (I prefer to bolt in and out of stores or shop online). Ibrance + fas shots every 4 weeks eliminated the nodule in my left lung. I don't believe fas can be used more than every #4 weeks, but check with onc. For our newbies - I am on round #8 and work full time using hair halo.
(()) Claire
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Beautiful picture, Claire!! So happy for you.
I'm on Faslodex and xgeva only. First scan since change will be August 30.
Keep having a wonderful time!
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Thank you dbl!
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Claire, glad you are enjoying your trip!
Hugs, Carol
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JazzyJuneBug I think it's interesting how our MO's differ in regards to low ANC. The last time I saw him I was due to begin ibrance that day my ANC was .5. He decided I should continue on with treatment. I asked if I could have neupogen shots and he agreed. I have some old friends coming for a visit (7 of them from elementary school, middle school, and/or high school) and I didn't want to have to hole up in my house due to no wbcs. Yesterday I had fulvestrant and Zometa and my wbc was 6.2 so good old neupogen worked. I am going to ask my MO about changing my ibrance routine. I successfully kept my tumor marker down with 2 weeks on and 2 weeks off at 75mgs for months but unfortunately the marker started climbing again and he put me on 100mgs, 14 days on and 1 week off. I get tired at this dose and have low anc counts. We all seem to have different dosing. I'm going to suggest 100mg with 2 weeks off between.
Lunalin if you have a sore throat it could be silent acid reflux. It can cause both a sore throat and a cough. I can tell when I cough from reflux as opposed to other coughing but I had a GERD problem long before ibrance. Fulvestrant causes me major hot flashes and facial sweating. I find it ridiculous to be having these symptoms again
as I went through menopause a long time ago. GG27 glad to hear that things are really picking up for you with your treatment. last time I logged on here you had fevers etc. Also glad to hear about probiotics. Thanks for that info. I'm going to start taking some and dlb823 love your idea of liquid probiotics as I always have a gassy prob. What a clever idea.
Happy Weekend to all. Happy August.
Val
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Yes, gorgeous pic Claire! Looks like the weather is glorious.
Brenda, I have never developed pneumonitis. But did have a very bad bout of shortness of breath and pounding heart at one point when i was on the 125mg, even when my WBC was pretty decent. I would definitely look into a reduced dose before giving it up all together as it has worked wonders for some women. i am now on the 75 mg and so far so good. I will find out on the 17th if it is helping my liver mets.
Z, that is FANTASTIC news!!! I understand your delayed reaction to all of this. As you say, the PTSD can create havoc with the emotions. Time for a Seattle Happy Dance though! We will do one for you....
Carol, I have finally started wrenching up my fitness as well. Today I did a 5 mile bike ride with a lot of uphill! Now i am wiped out and on the couch. But I did it and will be pretty proud of myself if i do it again tomorrow. I am trying much harder withmy already decent diet. I want to add some supplements as well but need to do find the time for research again. Still need my chocolate too though. Hahaha
eelder, I really love how you always have something to brighten our day! And Deanna, you are so great about sharing threads and good info. Thanks to you both.
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dlb823 I found it very interesting what you said to HLB," I've always taken a lot of supplements in general, but I was told not to take anything specifically aimed at increasing counts while on Ibrance. The rationale was that low counts are part of the complex way Ibrance works, and doing anything to change that might be counterproductive -- that it's best to ride them out because most of the time they do rebound within a reasonable time, and patients rarely get sick even with low counts." I have had to get neupogen injections on two separate occasions due to very low blood counts. Do you think I shouldn't do this?
Val
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Barb, or anyone worrying about trying to pay for ibrance, the PAN foundation is wonderful. CVS Specialty Pharmacy in Seattle, got me a grant because here in WA ibrance is a prescription not a treatment and medicare won't pay for it. I was turned down by Pfizer and also by the grant assoc. that the financial advisor at my oncology center suggested . However, the pharmacist in oncology hooked me up with CVS and they hooked me up with PAN foundation and it was such an enormous relief!! Having to worry about finances and stage 4 cancer at the same time is simply too stressful.
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hi,
I have been taking ibrance and letrozole since January 2016. I had extensive lymphnode involvement and three bone mets. My last pet scan (july 2016) showed normal lyphnodes and the bone mets had turned to scar tissue. As far as side effects: slow hair loss, decreased appetite (I have lost 30# since January), Increased anxiety probably due to the disease not the medication. Certain foods taste different or have completely become distasteful. My blood counts are low but not enough to reduce the dose of ibrance. I also have trouble remembering things and sometimes i cant find the correct word. The biggest challenge for me has been lethargy. I can sleep all night and sleep for 3 to 4 hours during the day. At first I felt guilty about sleeping so much but I have overcome those feelings. If my body says sleep, I sleep. I had to leave my job as a nurse and that was difficult but I need to focus on myself at this time. I also get an iv of zometa (bone strengthener) every 3 months. I am slowly adjusting to this new life but it is what it is. I leave for a 2 week vacation in September with two of my children (I hope I am awake for most of it). I hope you have good results with the new medication. I wish you the best!
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Lissalou, I also have trouble remembering things and have had a couple of episodes when I could not say the word I was trying to say. I also have terrible dizzy spells when I think I'm going to faint. My oncologist ordered a brain scan and it was all clear. So I think the memory trouble is common on this drug. I use my phone and set several alarms to remind me of things. The Ibrance alarm goes off daily and has actually done the trick!
Z - So happy for your great results!!
I had healing of lung mets in my May scan and praying the results look even better next week for my next scan. My tumor marker went from 50 to 41 in May but they have jumped up to 45, so I am freaking out a little. I'm praying this combo is still working for me....even if my hair is coming out in long strands!!!Lunalin - Don't freak out about the Faslodex going to monthly. Since it is given in the muscle...it stays with you.
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