Ibrance (Palbociclib)
Comments
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Hi again
Just a few notes to all those concerned about me. Thank you so much for your concern - it really warms my heart. So sorry for not responding before. I was so terrified of the SE I had from the Ibrance/Faslodex - and realized that I had to take a break from focusing on the disease, the meds and their SE. Therefore I haven't been reading threads for the last couple of days and have focused on other things. This has done me good - I think I need to continue this for a while.
Besides I believe a couple of the SE has waved off. My eyes were hurting so much at night I couldn't sleep and my eyelids were swollen + I felt enormous weakness and tiredness after the second Faslodex injection. The pain in the eyes must have been an allergic reaction. I also felt it after the first injection though not so intense. I will talk to the doctor it about next week when I'm having my third injection. I hope it doesn't repeat itself. The weakness is also better after seven days. Very disturbing is the dry cough - it's in list and my doctor warned me about it. I have nausea and not much appetite. Not so big a problem because I need to loose weight after 3 years of Letrozole. My WBC are very low at the moment, but not enough to cause concern I was told.
I'm not stopping the medication right away - I have clear intentions of giving it a chance - is it effective or not? If it's not effective against the liver mets I'll consider what else is available for me.
Love to you all
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Dianarose I am fairly sure my cancer is ductal but would have to check that. Thanks for the info on corn and nuts, seems like I have to avoid all my fave foods but it is worth it to avoid a blockage! Although I am sure I have a blockage now, taking 2 Miralax a day and just coping. I actually have a stent in my colon which worked great until 3 weeks ago, I was on holiday and let myself slip, too much fiber. I am actually booked in to hospital next Tuesday to get a colonoscopy and hopefully unblocked.
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Take a look at this article. Z has been urging us all along to exercise!
July 25, 2017 Physical activity could combat fatigue, cognitive decline in cancer survivors
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I too was diagnosed with mets to ribs and spine. One on the rib and two on the spine. Started Ibrance/femara and zometa in january of 2016. The fatigue never really leaves for me. My oncologist gave me a script for Ritalin which does help me get through the afternoon without napping. It also seems to help with the anxiety. I'm able to focus better and I have a little more energy. I have lost 50 pounds over the last year and a half. I don't know if its the meds or the anxiety. I am always wondering "how much time I have left". I have Xanax for the anxiety but try not to take it unless its really bad. I did loose a lot of my hair while on this combo. I recently switched shampoo and conditioner to biolage restorative. It seems to be helping. For those struggling with constipation Colace and miralax twice a day is the ticket. I learned the hard way. Next scans are not until November and I am already worrying myself sick. Dumb, I know. I wish you all well.
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Blume- the reason I asked is most of us, not all, with belly mets have lobular
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Lissa...You sound like me. I spend too much time worrying about "what if"....knowing darn well it won't change the outcome. I was told I might lose some hair, but some people don't. I have Ativan for anxiety, but only take it if I need to. This is only my first round of these meds, so I guess every day/month etc. will be a surprise.
Hope
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I had mouth sores at the end of my cycles for a few months but it seems to have gone away. I'm sorry you have this problem . Have you tried swishing with warm salt water when you feel it coming in. Mine never went into an infectio
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I never think of what if , I think of what is .......stay positive as hard as it is..........
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No the infection was because of the deep cleaning I had months ago. It turned into abcess and i quit the ibrance and took antibiotic. Guess it didnt heal all the way before i started ibrance again. I did have bad mouth sores last time but they arent bad this time. Just the stupid infection.
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Doc told me to start taking some slow magnesium. Does anyone take this and if so is there a better time of day to take it and should it be with or without food
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Dianarose, I take reg.magnesium 250mg, after dinner and it helps to keep me regular and if I'm having a problem, I might even take two. I've also found that taking probiotics morning and night helps. I have always had a tendency to constipation so I'm trying to be extra careful. We need to get those poisons out of our bodies. Also, for those of you who have a hard time drinking water. You really need to drink it, it helps with elimination and I find the side effects are less also. As well, you really should eat a meal with protein, fat and some carbs. My NP told me we need 60grams of protein a day when we have cancer, and that's hard to do if you're not eating it 3 times a day. Try protein shakes or bars or something but get it in and drink your water.
Welcome to all the new people here, I'm sorry not to address you individually but sometimes I like to take a break too. I'm on my 20 th round and am probably one of the oldest here but I'm still hanging in there and you can too. These are a great group of very smart women and you will learn a lot.
God bless us all and let's pray for each other and a cure for this beast.
Edited to add I actually take chelated magnesium, it's easier to adsorb , not so harsh, and may be similar to slow magnesium.
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Thanks Faith. Protein is definitely the hardest thing for me. Eating period is a struggle
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Dianarose, I'm so sorry you're having such a tough time. I had a friend with a different cancer and she also had a real problem eating and drinking water. But she would at least try to drink Boost for the protein and vitamins. Have you tried anything like that? Just a thought.
You are in my prayers.
Faith ( in the future).
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Faith- boost is pretty nasty. I try to eat little amounts often. Wanted a fresh peach. Ours aren't ready yet. Hubby went to our stupid local grocery store and they didn't have any. The youngest son works in an orchard and said he'd get me some tomorrow. Guess I will just have to wait
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Dianarose, I agree with you about the Boost, but my friend could drink that when she couldn't eat anything else. We are all different, I guess. Your idea of eating small amounts all day long is good. We've been getting fairly good peaches here but sometimes I have to wait several days for them to ripen on the counter. The worse though, is when you cut into it and the middle is rotten which has happened a few times lately. Ugh
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I'm supposedly stage IV w/ lung nodules that They argue back and forth is/isn't Mets, so I am taking Letrozole and Just started Pablociclid in May. (No way to really know w/out biopsy and that's not recommended, as you'd need a lobectomy and that's ridiculous.)
I'm a nurse and have found some great things that work. Drink tons of Pelligrino or Italian sparkling water, Bioten mouthwash + toothpaste work great for sore mouths. Fresh O.J. (Or not OJ from concentrate) helps activate your white blood cells (works, too!) I feel better w/ no gluten, organic food has totally helped. No processed, onlyclean food = a world of difference, and organic yogurt. Aveda Invati Hair system is all natural and grows hair follicles. (Used this for the last few years for the Letrizole.)
I'm a workaholic, single, with a lil dog. I'm not letting this villain get me yet. I do what I can do and get by. I rest more than I ever have in my life
My originally diagnosis was in 2009.
My cousin had this same cancer, didn't do adjuvant therapy and just died in April, 2017. It was SO sad.
I'm trying to have a positive attitude and soldier on, like you all.
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I thought I only thought that about "Julie"! I swear I cannot believe how many times that commercial has been on! Like we need reminded - lol!!
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Every time Julie comes on TV, me and my husband look at each other and say "there's Julie" and laugh. She never looks a bit tired and can even run!
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Good morning...
Having Carnation Instant Breakfast drink...trying hard to get in my protein. Those peaches sound luscious. Have any of you been told not to eat "raw" fruits/vegs while WBC is low? I have a wonderful cookbook "Eating Well Through Cancer" and there's a section indicating foods to avoid during this time. I highly recommend the cookbook - it has some wonderful recipes with nutrient values etc., plus, easy.
What kind of protein/meal replacement bars to you recommend?
Faith...I'm probably the "oldie" on this board....74...what say you?
Hope
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And I'm 71.
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Don't forget that sugar totally feeds cancer growth. I know it's hard not to eat it - but read your labels - processed food and even those instant breakfast drinks are all sugar. I know it's hard to eat at all - nothing sounds good or tastes good. However, as a nurse, I can honestly say that changing your diet id the best thing you can do - you feel SO much better AND have more energy! I literally just forced myself..
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Well ladies, I will be 77 in August? Anyone beat that number? However, right now, I feel like 97. Everything hurts, my feet especially as well as my sinuses.. Just having a bad few days lately, probably unrelated to cancer but maybe side effects of the meds? I'm on rd.# 20 and I think my body needs a break from this stuff, although it seems to be keeping the cancer at bay, and that's a very good thing
Hope you all feel better than I do right now. I know I shouldn't complain because there are so many of you here with much worse problems and I'm praying for all of us.
Faith (in the future).
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I have read that sugar "feeds" the cancer. But, at this point I'm just trying to get some nourishment in my body. I really never thought I would see the day where I would "wish" to have an appetite.
Faith...I have those days already! And, I'm just on round one.
Question: When you start each round, do you start on the exact same day as the month before? In other words, I began on a Friday. I will see the onco next Thursday. I presume this will determine whether my dosage might be changed...and doubt I would have the meds the next day. They come FedX - but took a couple of days initially.
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Hi Nona,
Ibrance is not like typical chemotherapies where you need to worry about matching the cell cycle. It is really a supplement to the endocrine therapy you are on so it really doesn't matter that much if the start date is delayed by a few days. My second round was delayed by about a week as my counts were too low. Now, my fourth round will be delayed a bit as my MO and I were deciding what our next steps were (some indication of progression in the bones but it's unclear when that happened.)
You'll notice from the posts that folks also often take breaks from the Ibrance so that they feel well for vacations.
Hope this helps. Pat
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I have been off for three weeks now due to other illness. Of course tumor marker went up 17 points so I am praying she lets me back on it
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Nona, my specialty pharmacy calls me the week before I am due to start a new round. They do not wait for my MO to approve. I took an extra week off for my son's wedding and a whole month off for a UTI. Right now, I have about 2.5 months sitting here. My MO told me the pharmacy doesn't need to know when you take time off. His exact words were, "the less they know, the better." One of the times he said something really smart. I also like having extra around in case I have trouble getting funding when my current copay grant runs out.
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All of your answers lessened my anxiety! Oh, I am so happy I found this site. Today is my last dose of this first round. I'm praying I will regain some energy on this next week off, as my granddaughter is getting married on Aug.5. I just want to feel "well" during this important time.
Hope
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Faith, I am sorry that you aren't feeling well. Don't worry about complaining here. We are not having a contest to see who feels the worst or is having the most difficult time. I like to read about all news, good and bad, big or small. We all deserve comfort and support when we feel rotten or get terrible news, and we should all expect joy and celebration when we get good news or have a great day. We are all in this together.
Nonahope, Your granddaughter is getting married in just over a week? Well a big WOOHOO for that. You must be so excited. Will it be a big wedding? Have you seen her gown? What will you wear? I hope you feel really good that day (and many others) and that you have a wonderful time. Are you a crier? I must confess that I tend to shed tears of joy at events like that.
Hugs and prayers, Lynne
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Hello, My name is Crystal. I am a 40 YO with Stage 4 IDC. I am fairly new here...mostly a reader. I finished chemo on June 28, had my 3rd Pet Scan, and I found out a couple days ago that I am in remission. I will begin Arimidex with Ibrance in the next couple days. I was fortunate enough to not have any major side effects from IV Chemo. Mainly, I had extreme fatigue with the AC and joint and muscle aches with Taxol. Although I am a month out from IV chemo, I feel like my body is still recouping as I have alot of stiffness, soreness and pain. Although, it is controllable. Ive been able to work 95% of the time. I've been very fortuante. I do contribute it to alot of water, general healthy eating. I do need to start walking though. I am hoping since I didn't have too much trouble with IV chemo that maybe that will be the same for the oral meds. I really appreaciate being able to read your stories and know that I am not alone.
I also am currently doing Zometa to rebuild my bones (Left Illium, Right Sacrum, 3rd Rib) and PET scan says it's doing it's job!
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Second cycle and my wife is starting to feel the side effects. First day on, at reduced dosage of 100mg, she felt sick to her stomach, and hasn't felt quite normal since. As well, her energy level and stamina really dropped off. We went for a bike ride the other night, and she was really struggling. She seems ok with walking though. She says her legs feel really heavy.
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