Ibrance (Palbociclib)
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I'm on a trial of Ibrance and Letrozole in Australia and my oncologist has told me that Pfizer's advice is that trial participants should not have flu shots. I've chosen to follow protocol because it's a trial and I don't want to be taken off it or I won't be able to get hold of Ibrance. It's only just been approved for sale in Australia and is very expensive. I'm not giving advice about whether or not we should; just that this is the instruction I've been given.
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Ceci4555 I'll put my hand up as one who has had bouts of gastritis/ulcer type pain in the past. I don't find that Ibrance/Letrozole treatment gives me any trouble in that respect.
As for fatigue....for me it's just a really really tired feeling, not the sort of tired you get when you've done a lot of work, it's a kind of fatigue that makes you feel lethargic and heavy. I guess I do feel sleepy too but I don't sleep any more than I used to. I just seem to need to rest a lot in between doing anything. I have extensive bone mets and that contributes to needing to rest because I take a lot of narcotics for severe bone pain, caused by stress fractures from the many tumours. Sometimes it's hard to differentiate between what's causing symptoms because some of us take so many different medications but that's the best description I can give of what the Ibrance fatigue feels like....lethargic, heavy, sleepy and tired.
I find I'm better about five days into a new cycle and I get about ten days when I have some, repeat some! energy. It starts to dwindle about the last three tablets of the cycle.
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Thanks for posting that Maire. I take exception to every part of it, especially ....."another key element is being pain free". For our families, I would say without exception that to see us being pain free is not "another" key element but THE key element. For my family, when I was first diagnosed and not on any treatment, my pain was their pain and my pain was SEVERE. I had stress fractures right down my spine and at least two in every rib. I couldn't move. To be clinical in assessing studies is fine but to be so completely lacking in compassion is, I believe, a failure in Lillie D Shockney's assessment. I also take exception to the way she links bone mets with eventual but certain death and the way she describes a "good death". Yes, I know we are all metastatic if we have bone mets but I, for one, refuse to accept that it means there will be progression without exception. Am I in denial? I don't honestly think so. I'm aware that, yes, I do have a heavy load of cancer but there have been many, many cases of regression or, at least, cancer being stable for a long, long time. Plenty of time for me to live as much as my limitations allow me and, perhaps, die nice and peacefully in my sleep from old age one day. And NO ONE is going to tell me to think otherwise.
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I'll bet that Lillie B. Shockley, RN, etc is young and knows all, with her string of credentials behind her name. Her response is clinical and without human understanding or compassion/empathy of any kind. She probably is at an age where death is theoretical rather than actual and doesn't involve real people or anyone about whom she cares. I hope that this is age and ego-related, because it is truly an abomination. I could not, by the way, find her by Googling. This supports my own thoughts that she must be young and foolish.
I don't care in the least what Lillie B. has to say. I'm moving on.
Hugs to all of us who "get it"....
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Here's another interesting article which may ultimately affect us: the discovery by Harvard Medical School that ammonia, a cell metabolism waste product, is used by cancer cells as fuel for energy and growth. Another opportunity for finding a way to slow cancer growth. It is truly astonishing what is going on in research right now!
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And this may be the article on which Ms. Shockley's diatribe was based. You may have to create a log-in to access the actual text of the article. It was easy to do so.
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Her name is Lillie D Shockney and she is based at Johns Hopkins. She is in her mid 60's. She is one of the first people I had ever known to publicly address metastatic cancer. She wrote a book about Metastatic and Advanced Breast Cancer in 2012. Which is outdated now. She does not have metastatic cancer but has had breast cancer. I don't pretend to understand her intent in that article but she has done an incredible amount of good work for breast cancer patients and survivors.
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AHA...I was looking for the wrong name! That is so interesting and really surprising to me. I had her pegged entirely incorrectly. Oh, well....I don't want to meet her.
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I get my Xgeva shots every two or three months as they suggest for zoledronic acid. My MO tends to the less is more when it comes to that. Which is more expensive is different for different people especially the difference in whether you have a port already. If not then you'd have to add the cost of the port into the overall calculations. Also for infusions you have to have an RN present to access the port, while with Xgeva you just need a phlebotomist. In my case, my MO provided cost justification. You'd probably need to go in every month to get the port flushed, otherwise they can get clotted.
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Thanks for your input Jaylea. I will be started on zoledronic acid before ibrance since my onc wants me to be finished with radiotherapy before starting that.
I was wondering, do any of you on ibrance and combos live alone? Have you needed help at home? My bedroom is upstairs and I need to go up and down the stairs to go out, cook etc. Will I be able to?
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Leapfrog thank you so much for that explanation. Have you had any digestion or nausea related problems?
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Good morning...
Chris...Safe travels today! Have a wonderful time with your family!!
Jaylea...I have a port. In fact, this is the second one I've had. I had the first one in for 5 years! I didn't need to keep it in that long, but it was much nicer than having the nurses finding veins!! Unfortunately, I had to have it removed due to a blood clot. When I was diagnosed with MBC, my onco ordered another port. So far, so good. Of note, a very good friend of mine has had her original port for over 10 years!!!
Ceci...I live alone. My house is a bi-level and I do have steps coming in from outside and going down to the basement/garage level. I don't have any problem. I hope you are pleasantly surprised that the side effects from the Ibrance are minimal.
Enjoy your day!!
Hope
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Nonahope you cannot believe how relieved I am by your comment on living alone at a bi-level house. It's reassuring to find people in my same or similar situations that are doing well. Just curious, what other treatments are you on simultaneously?
Thanks to all of you for being here.
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Ceci...The only treatment I'm on at this time is Ibrance 125 mg./Letrozole 2.5 mg. I will be starting my 5th round soon. I had 1 infusion of Zometa the first month, along with the Ibrance/Letrozole. The Zometa increased my creatine level to the point where I had to have fluids on a daily basis for quite some time. So, no more Zometa. I asked about having it every 3 months, rather than every month - which is what my onco preferred - but, he said NO...he wouldn't take a chance. So, he was going to see if my insurance would cover Xgeva, as it's quite expensive. So, time will tell if I start that. I see him again on Nov.2, but I will be getting a bone marrow biopsy, so doubt I will get the Xgeva that day, but I'm not sure. Like you, I am a very anxious person..."Nervous Nellie" is my middle name!! When I have a day filled with anxiety, I rely on Ativan 0.5 mg. Mostly, when I am waiting for results or seeing the doctor. I don't have to take in on a daily basis. Hang in there!!
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Ceci, I fear that you might be focusing on the possible SEs of your proposed treatment without realizing that the benefits outshine those possible SEs I know that things seem overwhelming and frightening with the diagnosis of MBC, and the thoughts of treatments can be daunting. Truly, honestly, the combo of leterozole, Ibrance, and zolendronic acid is not anything like chemo. Most of us have manageable SEs and in some cases no SEs worth mentioning. Most of us who are on either Leterozole or Fasodex along with Ibrance and zolendronic acid continue to lead relatively normal lives. Leterozole does often cause achy joints, but not enough to limit activity in a substantial way. In fact, activity, such as walking, can help to relieve some of that pain. Some fatigue is often experienced with Ibrance, but it does not cause people to spend all day in bed or anything like that. While I was on this treatment, I was my husband's caregiver last winter and spring when he was ill, had major surgery, and returned home to recover. Granted, I am taking faslodex rather than leterozole, but still, I continue to be self-sufficient with the trio I take. (And I am an OLD WOMAN!!!) As far as zolendronic acid is concerned, if you do have SEs, they will only last a few days. I know that the lists of SEs for these drugs are long and scary, but many of the SEs listed are very rare.
Hugs from, Lynne
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I have a quick question. I was on Ibrance and stopped because I had major progression. Has anyone gone on to Verzenio ( Abemaciclib) ? I can't move on to Kiquali because I have an irregular heart beat, and I realize they are sister drugs. I just had one tx of Carbo and Gemzar and became very ill. At a crossroad......
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Hi all. I didn't mean to gang up on Ms Shockey. I understand that studies lcomparing results of different meds are very important. I am just pointing out that some are taking the results of research and extrapolating some decisions about treatment based on finances and "their" experience. I still believe that these decisions are best made by the doctor. I trust my onc to make the best decisions for me and my particular medical circumstances. She has she known me for 12 years am deathly case in point I started Ibrance at 75 mg because of my specific circumstances. I know not everyone has this long term relationship. However if I ever felt her decision was based on finances I would look for another onc.
My take away message from this is that as "consumers" we need to constantly be aware of studies like this which may be affecting our treatment and quality of life. This crosses all types of diseases. I hope this is not a precursor of things to come for MS, diabetes, mental illness , RA, CP and numerous other lifelong chronic conditions all of which have affected my family and friends. Ok I'm off my soapbox. Just trying to make a difference .
My labs are a mess at the end of this cycle. But side effects other than a little nausea at times and achy ...it's doable.
The Fatigue remind me of the first trimester of pregnancy. I remember coming home from work, picking up the mail and falling asleep on the couch. During My last trimester a bunch of men on the train would make it their job to make sure I was awake before my stop so I could fall asleep. A funny but good memory.
Glad Babs enjoyed your visit with you son.
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Ceci, my son has lots of stairs inside his home and outside to get to the car, and I just did a whole week going up and down with no trouble. I can't do more than 1full flight without a quick rest, but it is totally doable. You should do fine for a long while. For most of us, the ses are minimal
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Hello ladies, I posted in another Ibrance thread, but it seems to have disappeared or something. I will be joining you Ibrance voyagers - Ibrance and Faslodex beginning in a week. Right now am off all meds (ended Afinitor and Aromasine) and strangely feeling utterly exhausted ! weird. Okay well, I've not read all 333 pages, of this thread but did look back about ten pages.
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Hi Amarantha, Welcome to the Ibrance/Faslodex club. I have been on that combo for a little more than a year, and I am finding the treatment to be pretty easy to tolerate. My blood counts do drop during every cycle of Ibrance, but they rebound after a week (sometimes two week) break. I have not experienced any SEs from faslodex. My last scans showed improvement in my liver and bone mets, and the tumor in my breast no longer shows up.
I hope that your experience is a good one and that these medications work for you for a long time. I am sure others will join in to welcome you.
Hugs from, Lynne
P.S. I think that you also posted to the Faslode/Ibrance thread. There is not as much activity there as on this thread. I suspect that is due to the fact that more people take leterozole with Ibrance rather tha faslodex with Ibrance.
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Hi 50's girl ! I mean Lynne. Thanks so much for the hugs. I'm really glad to hear that this drug has done good things for you. I am going to keep that in mind and be hopeful !
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Nonahope thanks for your answer, those are the exact meds I will be on except we haven't tried with the zometa yet. Did high creatinine give you any symptoms?
50sgirl you are so right and your message is really comforting. This is just so unexpected and new and painful for me and I'm naturally someone with a lot of questions, but I feel better with each reply, thank you.
I have another question: do you take your medication at night or day time? I used to take arimidex right before going to sleep at night. Never had too much fatigue but I assumed it was because most side effects happened while I was asleep and by body had already metabolized some of it by the time the morning came. It did make me sleepy after taking it.
This time my onc said I will be taking femara and ibrance together in the morning, I found the change weird but maybe there's a reason for that. How do you take your meds and/or how would you prefer to? Can they be taken near meals?
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Welcome Amarantha, I'm new around here too, hope you find as much info and support as I have.
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Ceci I am over 5 years into Mets and I can do steps fine, and work full time. When you get started and then find out the treatment is working you will feel a lot more relaxed! I know I did. None of my treatments so far have given me any se worth mentioning, until now, I am on xeloda and it's messing with my eyes. Seeing onc tomorrow to see if anything can be done. I don't like side effects and I try to live as normal as possible so I get kind of irate when something effects my QOL. I always remind him, look I have to work ft to afford this disease and I can't be calling off all the time! Lol. I'm probably expecting a little too much but too bad. I'm the one who has to go through this and if he starts to seem indifferent because he has too many patients, I feel he needs reminded that people are individuals.
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HLB that gives me a lot of hope, curious as to why they started you on xeloda and hope it gets easier on your eyes! Thanks and wish you the best.
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Lndalou- there is an “ibrance/Abemaciclib” thread you should read- addresses this question. Some people think it would work because it is different although still a CDK4/6 inhibitor- others are not so sure. I’m sorry I don’t know how to link it here. But, an interesting thread ( in MBC )
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Ceci....When my creatinine level was elevated, I remember being very fatigued, lots of nausea, I couldn't eat anything -- the thought of food made me sick to my stomach, and my skin itched terribly.
As for taking the meds....I take the Femara with my lunch, and the Ibrance with dinner. You don't really have to take the Femara with food, but I do. I've never taken them at the same time.Welcome Amarantha! Though none of us want to be here, we continue to trudge on with all the helpful advice from all on board.
Hope
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Ceci,
I initially was taking my Ibrance and Letrozole in the evening about an hour after dinner. (Pfizer advises taking it with a meal, and good fat has been shown to be helpful with it). I found though, that I had a hard time going to sleep. I also take a thyroid medication so it may have been that which was hindering my sleep.
I switched to taking it in the morning, and it's worked great for me. It doesn't really matter when you take it - it's just important to be consistent throughout the cycle so that you are taking it every 24 hours.
I'm with Lynne, I think you'll be surprised how tolerable this treatment is. I hope you get great results with it!
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Ceci, Elevated creatinine often has no symptoms. My DH had 1 1/3 kidneys removed two years ago due to kidney cancer. As a result, he has chronic kidney disease(CKD), and his creatinine is always high. It will never return to normal. He feels just fine, quite normal, no symptoms. He is monitored by his urologistand nephrologist. CKD is often called a silent disease because there are no outward symptoms. It is detected through blood tests. Your oncologist will order blood tests for you before each Zometa infusion. If your creatinine is too high (or your GFR is too low), your infusion will be delayed until your kidney numbers are within acceptable levels. I hope this helps.
Lynne
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Thank you all again for your answers, very helpful.
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