Ibrance (Palbociclib)
Comments
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MBC bonuses (take 'em where you can get 'em):
My husband says I "play the femur card" when I don't want to get up for something. I highly recommend this for you folks with bone mets!
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OMG Pat. That's hysterical. Thanks for the laugh.
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Hello my friends. I've been holding off on posting this but my anxiety is getting the best of me and I figured it wouldn't hurt to find out if anyone has had a similar experience to this. So I've been dealing with some abdominal distress for almost 2 weeks now. I have a constant feeling of fullness in my upper abdomen and my belly is swollen and distended. There also is some burning in my tummy. The feeling is consistent. Nothing seems to give me any relief. I have no fever, relatively regular bowel movements, I have an appetite in that I still want to eat but I can't eat much because I feel full all the time. I have no radiating pain to the back. I'm not jaundiced. Haven't lost or gained a significant amount of weight (gained about 4 pounds). I'm not in pain - just uncomfortable. It can't be a gall bladder issue because I had that removed last year. I have had kidney stones in the past and this feels nothing like that. I've lived with irritable bowel syndrome for most of my life but it never felt like this. I have been to my primary care doctor and she sent me to a gastroenterologist and I also saw my oncologist. My oncologist did a blood test and my blood work is pristine. Liver enzymes are great. We have been monitoring my liver the last few scans because of a tiny spot that showed up. None of the doctors believe this abdominal distention is ascites. Gastroenterologist pretty much scratched his head and couldn't come up with anything but he does want me to have a ct scan and an mri - he deals with a lot of liver conditions and want to look at that. Since I was due for my 4 month surveillance scans in May we moved them up and I'm having them done tomorrow night. Something tells me they won't find anything - and that would be good. But then again it sucks feeling this way not knowing what is causing it. So there it is. I'll have the tests and then meet with the doctors next Wednesday to discuss. Sigh... Could be worse - I know.
On a side note I found out this week that my mother's cousin's daughter (I'm not sure what relation that is to me) who is 38 (so young!) has just been diagnosed with triple positive breast cancer. I don't know much about the HER2-Neu positive part of it other than it is a bit more aggressive and more likely to recur. At least that's what I have read. My mother's cousin has contacted me via texting but hasn't shared many important details so it's hard for me to help her without knowing exactly what the diagnosis is. I recommended that she check out this discussion board. I hope she and her daughter do that. It's been a great support and source of information for me. Her daughter is going to Sloan Kettering next week for more discussions on treatment options so at least they will be in good hands.
I just know too many people with cancer. It is so upsetting.
My dad - esophageal cancer survivor and prostate cancer survivor
My uncle (father's brother) - died from lung cancer
Same uncle's wife - breast cancer - died in an accident
My cousin (same uncle and aunt's son) - diagnosed with prostate cancer at age 40 - still here 16 years later
Another cousin - lymphoma
Another cousin - breast cancer survivor (she was only 36 at diagnosis)
My Aunt (father's sister) - died from pancreatic cancer
My Niece's aunt on her mother's side - in hospice with breast cancer
My ex boyfriend - died from brain cancer
My close friend's husband - has brain cancer
A good friend has metastatic melanoma
A close friend's husband - died from esophageal cancer
A close friend's mother died from melanoma
My mother's aunt - breast cancer survivor
My mother's aunt's daughter - newly diagnosed breast cancerOk I'm truly depressed because the list goes on... I'm sure this is not unique to me but man it just feels like I can't escape it.
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Animalcrackers~my first thought would be reflux. The burning and semi discomfort. The bloating, the distended abdomen and upper discomfort area. Anything doesn't associate without severe pain. Try some tums,don't use Prilosec because I have been told by my onc that it interferes with ibrance absorption! Gaviscon. Things of that nature even the thick white liquid you drink to soothe your stomach. If that doesn't help, then you have eliminated a big culprit. I have noticed since my treatments, I can no longer tolerate anything carbonated. It just lays in my upper abdomen like a small balloon and nothing penetrates it. If you drink carbonated drinks. Stop them for a few days and take some of the other Meds and see if you get any relief. Once I eliminated the carbonated drinks and anything spicy whatsoever, no orange juice or acidic substances at all , It went away. I will continue to think about what it might be and ask my nurse best friend. I hope that we can figure it out. I am sending prayers your way! ~M~ I also recently have been hearing more and more of issues and people developing cancer, honestly it's everywhere I turn. Makes me think it's the food and environment, those toxins cars emit have to go somewhere ! all those chemicals and chemical plants that are used daily. It had to go somewhere. Into the air we breathe is where it goes. It's really out of our control and that makes it so maddenning.
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Animalcrackers: Have you ruled out lactose intolerance? I developed that in my 50's. See if symptoms improve by eliminating dairy. I take lactaid.
You are probably tired of one more thing to deal with. Hope answers are found soon for you.
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AnimalCrackers, I'm so sorry to hear you're going through such discomfort. Like Micmel, reflux immediately came to my mind. When I was on Femara by itself, I had terrible reflux and weird gut problems for the first time in my life. I eventually stopped the Femara which caused the symptoms to diminish. To get rid of the problems altogether, I went mostly gluten-free, started dosing daily with "Bragg's Apple Cider Vinegar with The Mother", eating natural yogurt and avoiding soft drinks. I dropped most added white sugar too. (I would add that Prilosec only made me worse!) When I started Ibrance I decided to take Arimidex instead of Femara with good results. I have known others who had big problems with Femara but not with Arimidex or Aromasin.
I'm sorry to see such a list of loved ones and I know it must hurt. God bless all of you.
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SandiBeach, like you, I developed lactose intolerance in my 50s as did my sisters. I don't know why but the changes I listed above also solved that problem. I'm telling you guys, I'm going to get so well I'll one day crawl in bed and die from nothing!! Join me?
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Animal Crackers - I have no clue. I am just proud of you for following up with all those doctors and getting the scans, and just rolling up your sleeves and dealing. Personally, I have had quite enough medical interactions for a lifetime.
Pat - I'll join you! That's my plan too! We'll be 104 and come back home after a long hike with the great grandkids and lie down for a short nap and not get up. Everyone will be, like, hey why'd she die?
>Z<
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Yes, Z! Let's buy some lovely silk underthings for that day! I love, "Hey, why'd she die?" Perfect.
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And, Z, somebody's going to have to hang around to start the "Hey, why'd she die?" thread on BCO!
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PatgMc and Z: You guys crack me up.
I am going to post that quote on my fridge: "Hey, why'd she die?"
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Pat~ I am also on anastrazole and I do have some muscle pains and aches but over all I can't complain. The heat flashes would put out a camp fire, with all of the perspiration I emit into the environment. My daughter is lactose tolerant and she does get bloating, but over all her symptoms are accompanied with terrible gas like pains and it is not comfortable by any means. I also cut out all soft drinks and fuzzy things like seltzer water everything. The problem went away. I never knew you could develop it in your 50s. Wow I was always told you usually grew out of it. But I do know it's also semi chronic, because she was doing really well , then she got it back again! Rest well ladies. ~M~
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Platelets back up to 198 and tumor marker down 20 more points. I did one cycle of Ibrance less three days due to low platelets and my tumor marker has gone down 44 points. MO is so pleased and so am I. Started cycle # 2 last night
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Diana - nice results. this is a slow acting drug so the best is yet to come ... it can take 6-9 months to really kick in for some women. welcome to cycle #2.
Pat - the silk undies are a nice touch. you've got it all covered.
>Z<
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Micmel, PatgMc, Sandiebeach, Z - Thank you for your responses. Regarding the possibility of lactose intolerance: Well, I don't eat much dairy. I don't drink milk, eat ice cream or use any dairy products in my tea. Although I love cheese I eat very little of it because I always associate cheese with fat. So occasionally I'll have a piece of cheese or have some cheese scrapings in a salad. One "no-no" I indulge in is chocolate and eat Hershey's Kisses (because of course unlike cheese chocolate has no fat:)). I'd hate to think a few pieces of chocolate could wreak such havoc but who knows. With regard to reflux - I don't have any reflux. My mother has GERD and Barrett's esophagus and my dad had esophageal cancer so I know what reflux is about. I didn't even have reflux or even belching when I had my gall bladder episodes before it was removed. I don't drink carbonated beverages. I've spent a lifetime testing elimination of foods from my diet to figure out what was causing my irritable bowel episodes. Strangely enough my IBS has been under control since I had a colonoscopy over a year ago. It has been quite the little joke with my doctors. Who knew you could cure decades of IBS with a simple colonoscopy! Knock on wood!
I've been on Ibrance and letrozole for 16 cycles so it seems unlikely that my body is suddenly reacting in this way due to this protocol - BUT as we all know nothing is out of the question with SEs that can crop up out of nowhere. My gut (pardon the pun) tells me this is not a SE of the protocol.
I go for my ct scans and mri tonight. I'll keep you posted.
Thanks again for taking the time to offer suggestions. The ladies and men on this board are always so helpful and supportive.
Cathy
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Cathy, so relieved to know you got the scans. Glad your Docs are being completely thorough while investigating these stupid and so uncomfortable feelings you are having. I empathize with you on the feeling sometimes that cancer is invading us. I have several family members and friends that it has affected. One factor is that we are living longer. We now know, of course, that cervical cancer is caused by the HP virus. I often wonder what others might be caused by viruses? All of our minds go to the possible environmental causes, too. It is such a mystery and a lousy part of evolution/nature. Hate it with all my soul.
I'm totally with you all on the beautiful silk underthings, and, "Huh, I wonder what she died of?" Can I mention, too,that my bed will have the lovely percale sheet set that I just got from LL Bean!
Dianarose- so thrilled that my Maine MBC sister is doing so great! Loving the platelet count and lower tumor markers.
To my other sisters; Z, Micmel, Sandi, Patg, Lita, Lulubee, Shetland....all of you...Love you and sending the combined positive energy of the universe to each. MJH
P.S. I am stable right now. Regular appoint with MO Tues. not expecting any surprises.
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MJH~right back at you!! Hope everyone has a strong day! Big hugs. ~M~
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Here's another research project that has the potential to help us:
https://www.bcm.edu/news/cancer-breast/new-breast-...
Today I'm celebrating the good news some of you have received and praying that bad stuff will diminish for others.
I've decided to leave my cancer here at BCO for the week-end and pick it up on Monday! I ran into an old friend yesterday and my parting words to her were, "It's a good day not to be dead!" I don't even know where that bubbled up from but I got an email from her later saying she was going to use it in the future. Ha!
Love to all of you! It's a good day to be a happy Ibrance Dancer with you!
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Happy Friday everyone.
I am happy to announce that I took my first dose of Ibrance today. So far.. it's a non event thank goodness! I prefer to take my meds in the morning but was a bit concerned that I might have nausea/vomiting and would then lose my Arimidex as well so spaced the two about an hour apart. (After all, how long can it take for that little tiny Armidex pill to dissolve?) I had more nausea before I took the pill! So far so good.
I did have a bit of a shock when the drugs arrived. The prescription receipt indicated the cost for 21 pills is... wait for it... $7,445 Canadian. Yowsa! And it turns out that my extended health covers $500,000 in my lifetime for all health related expenses including paramedical appointments, vision, drugs, etc. So, let's hope Pfizer convinces the Canadian government to fund this med in the next few years. I plan for this treatment to work for a long time and at $90 K per year, my health insurance is not going to cut it. Perhaps I should start investing in the lottery....
One question... have any of you had issues with drinking wine while on Ibrance? I couldn't see anything specific in the literature and 21 days is such a longggg time...
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Sadie~ I have never drank with any of the medicines. I'm too chicken.!! ~M~
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Hi Everyone
Sadie, I started today too. Just some diarrhea for me. My drug plan told me $18,000 a month here in the US. I have Pfizer co-pay do you? Right now it seems I'll have the $10.00 co-pay and then I got a bill for $70.53. Crazy.
Patg, have a great weekend.
Cathy, keep us posted on your scans.
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Sadie- my MO said a half glass occasionally is ok.
I have come to the conclusion I am not going to die from cancer but I am going to burn to death after I ignite from these hot flashes 😜
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Ha Dianarose! I always joke that, for me, it was one big flash and then it was done. Chemotherapy put me into menopause during my first go around. About halfway through treatment I started waking up in a puddle of perspiration and thought what the heck??? Then the penny dropped and I realized what the problem was. I was lucky. It lasted about a month and then that was that.
Cheers (although apparently not literally...
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Sadie- I have had a glass or two of wine sporadically while on the ibrance. I am starting my 21st cycle and continue to have an excellent response.
Cathy- good luck with the scans. Hopefully whatever this stomach thing is will pass.
Dianarose- great news on your tumor markers coming down!
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Pat - We've got your cancer covered! Have a great weekend. Unfortunately, it will be back on Monday, but we'll be here too.
Sadie - I am enjoying a glass of wine as I write. I expect that the cost of Ibrance will go down, and we'll have other drugs to turn to as well. However, I would still push for Pfizer to pick up the cost.
Dianarose - There are a lot of ways to treat hot flashes. Doctors prescribe anti-depressants like effexor for hot flashes and that works for many people. It's a good option if you are prone to depression. I take horse doses of hesperiden methyl chalcone (4500mg/day, 9! pills) per day for hot flashes. I chose this route because its an extract from citrus that also has anti-cancer properties. Time in the sauna seems to help me as well. You can reduce hot flashes if you put some research and effort into it, although what is going to help you is going to be unique to you.
Right back at you MJH.
>Z<
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Sadie, I've just finished my second round of Ibrance and haven't experienced any side effects at all so far. I take mine in the AM after breakfast. On 7 days off right now but can't tell any difference. So far, so good. Congratulations on getting the Ibrance! The "approved price" for 21 pills per Medicare is $11,456. Gulp.
Pat, I LOVE, "It's a good day not to be dead!" Also, "playing the femur card.....". I will remember both!
I just scheduled my first set of scans for May 15th. Gulp again.
Happy weekend to all...
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Oh, and I forgot. My onc said that drinking was fine on this protocol (Ibrance + Faslodex). I may be making a big mistake, but I have 2 glasses of wine at night, and sometimes I have a martini (not on the same night!). You all may one day say, "We told you so.....". Hope not!! I'm 71 and not ready to give up my wine yet.
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My mo is trying to see what my insurance will cover so I can take ibrance. I started faslodex this past week. Im terrified i wont be able to afford it.
Joynerl what is the femur card that i read about. Im sorry for dumb questio
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Pat Mc should reply to this one. Her husband jokingly refers to her "playing the femur card" when she doesn't want to do something. Pat, please correct me if I have that wrong.
It is my understanding the Pfizer covers most of the cost in some instances? There's something on the Pfizer Ibrance site which addresses this, as I recall. I don't qualify for that minimal payment, as I'm on Medicare.
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joy~ your body would tell you if it wasn' t ok with what you were putting in it. Enjoy your wine! You deserve to take a break. I can't drink because I only breatheon one lung. It dehydrates me to where I can't breathe. So I take a Valium at night to relax. It's my heavenly pill. Have a great day all. ~M~
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