Ibrance (Palbociclib)
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Hi Nicole,
How are things going in New York?
Interesting that you and I both talked about a sensitivity to drugs a few months back and now you’re talking about gluten sensitivity. I have been gluten free for a decade! If you’re sensitive to things in general, it wouldn’t surprise me if you had a gluten issue. A lot of people are sensitive to it since wheat is made entirely different now than our bodies are used to from a genetic standpoint.
Not all gluten tests are accurate. I always tell people if you stop gluten for at least a week and you feel better or your symptoms clear, that’s your test right there!
Take Care,
Margot
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Margot...thank you for your post it's so good to hear from you.
Things are good here in NY hard...but overall good. Cant remember if I told you..but we are staying in our sons and his fiancee's 1 bedroom apartment on his couch so it's been very hard all 4 of us in this tiny apartment not just because of space but because we are 4 adults with different personalities etc.
Good to know about the Gluten tests not always being accurate.
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XGEVA.... so last night I basically had hives!!! I actually had to call the doctor service I am waiting today to hear what they think. I took the Claritan D about an hour after the shot (not knowing I even needed it for the shot) and then last night I had some Hydroxyzine on hand but very low dose 10mg I took 1 and felt relief but it was short lived so an hour later another one. Then at 3am I needed 2. I have been ok now since 3am but ..wow
Did anyone ever have this type of reaction??? Also how long does it take for that to go away (the itching)?
Nicole
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Nicolerod many of us have had a rash/hives. I attributed mine to ibrance bc that’s a SE but I also get faslodex and zometa. I’ve had them during two months of treatment on my legs and feet. I’m sure many will pipe in on the itchy hives thing.
Pat MGc I understand about the break. I’ve been doing whatever I can with this fatigue, aches etc. I’ve thought about what it would be like to be drug free for a few weeks. A month would be heaven but I’m afraid of progression. Keep us all informed I’m sure you’ll enjoy the energy and feeling of your body bouncing back.
JayleA it was good hearing from you even though I know your treatment changed.
Take care all
Tanya
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Cure-ious----- I need that knowledge of yours !!!! Your thoughts on this:
My PCP ordered a statin after the TIA. My numbers are not horrid, but could be better (LDL and HDL). When I went to the pharmacy to pick up the med, they asked if I was still on Ibrance. I get the Ibrance from a specialty pharmacy so they weren't sure. They had a printed paper stating possible drug interaction with Ibrance and Lipitor. Quote " Palbociclib is a weak CYP3A4 inhibitor and lovastatin is a sensitive CYP3A4 substrates. Concurrent use may result in increased levels of lovastatin which may result in hepatic injury, myopathy, or rhabdomyolysis." And " consider the risks versus benefits of continuing antilipidemic therapy". The paper went on to discuss a case study of 26 women in which one died after 8 days of hospitalization.
Woah, I am not really wanting to start a statin. So Cure-ious, thoughts on this. What is this CYP3A4 inhibitor?? Help me understand.
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candy, I don't know the science behind it, but I've been on Lipitor for years, and the only difference after starting the Ibrance was that it worked better, LOL. Basically, the Ibrance increases the level of Lipitor in the blood, so my doc lowered my Lipitor dose (10 mg now instead of 20). My cholesterol was always above 200, and now hovers around 150. It's been steady for over a year. If it starts to creep lower, my primary doc will reduce the Lipitor again. Oh, I'm on 100mg Ibrance, by the way. Always have been, since Day 1.
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Well, just saw my MO today after Monday's scan and what I've feared has come to pass. My tumor markers crept from 13 six months ago, to 15.4 last time, to 18.1 now. Still within normal range, but showing a steady rise. My last report said "no evidence of metastatic disease" but now the lymph node that was just slightly enlarged has increased enough so they want to biopsy it. One of my lungs also has a small plueral effusion in the bottom. Not enough to drain but enough enough to tell me to not reorder Ibrance. I'm only into the first week of this bottle so she said to take it until I get results of biopsy back and further lab work. She'll look for the mutation to see if I can take Alpelisib and faslodex. Sure wasn't good news to see progression. I was on Ibrance two years. I had just hoped for a longer run.
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Oh my goodness- a couple of days away and you've all gone bonkers! Brilliant that this thread is SO active.
Jaylea, delighted to hear from you and hope the new regime is manageable.
Candy, re retirement and benefits I have also been rejected for PIP - personal independence payment ( went to a tribunal with a judge and everything). Pretty stressful and designed to put you off. Try getting another agency to fill out the paperwork for you... we have Maggies centres and MacMillan in the UK
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Ciaci- Also I have a concern with the connection with Lipitor use and autoimmune myopathy. Way above my head, but I have 2 autoimmune disorders already. Seems too close for comfort that I have an autoimmune problem AND on Ibrance and even considering Lipitor use. I think risks may out way benefits of using the drug. My lipid levels are only slightly off.
Elenas-- So sorry to hear of the progression. Hope you can change to a friendly next treatment.
Karen- I must pay to have an agency help me apply for SSD. I cannot afford that. I need all the payment to live on. I am going to try applying as others have--maybe online.
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Candy, Ciachi makes an excellent point- my blood pressure has always been on the high side, and now they read it all the time in the doctors office and I noticed its been working unusually well, and also my cholesterol numbers so low since I started the Ibrance-Femara, wondered why- but of course you're right its probably the digestion, higher levels in the blood
Candi- Cyp3A4 is a cytochrome 450 enzyme in your liver and gut that digests probably half of the drugs you take- some drugs can make it more or less active, and as a result you might get higher or lower levels of the drug.
We end up taking a lot of drugs, and BTW supplements affect this too, and our livers have to do a lot of work. Its no reason not to take statin, and statins have a separate thing they do to fight the cancer also, so they are good- but you should talk with your doctor about that and whether you can reduce any drugs, for example, once they monitor how well its working.
For statins in particular, if you have problems with levels you may notice some muscle pains, sorta all-over, like if you grab your arm it might feel like a bruise but there is none there. This you do not want to have, and they say to take CoQ with statins to protect from that.If you should take CoQ is another good question for the doc or pharmacist..
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PatG, I will certainly pray for you as you make a decision about stopping treatment for awhile. It's a scary thing but I stopped the Ibrance before our trip to Italy in August 2017, expecting to go back on it when we returned. To my surprise my MO said to stay off for awhile and just use the letrozole. Well the letrozole has kept me stable and my last scan in January showed no evidence of the tumor in my lung. So letrozole works to stop cancer too and shrink the tumor and I imagine that your Arimidex does also since it suppresses your estrogen. If you're not totally comfortable stopping all treatments, how about just taking th AI.? I still have some fatigue and muscle aches and joint pain, but nothing like when I was on the Ibrance. Your side effects won't disappear overnight but they do get better in a week or two.
I will pray that you have wisdom to decide and peace about your decision. Enjoy the time with your granddaughter, it's a very precious thing as they grow and mature so fast and get involved in their own lives, which is as it should be, but I sure do miss the time when they were younger. Most of ours (we have 10)are in college or graduated and working full time. I'm hoping for great grandchildren one of these days but none are even engaged so that may take awhile.😉
Love and prayers for you and everyone else here too. Praying for a cure that may be just around the next bend in the road.
Faith (in the future)
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Thank you so much, Faith. You can't know how much your post means to me. My husband and I have talked about this a good bit and I just told him your story which he also finds so encouraging. The nausea from Ibrance is my most limiting side effect and I long to have some time without it.....that and the indigestion. I remember having fatigue when I was on Femara by itself but it wasn't as limiting as this so I do look forward to more energy.
Again, I thank you for the concern and encouragement. It makes me so happy that you're doing well. I can't imagine the joy of having 10 grandchildren! I just have this one precious 15 year old and I know she's about to slip out of the season of wanting to spend time here with us.
Love from PatGMc
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PatGMc....there’s a very effective digestive aid you might want to check out. It’s called Bio-Gest and it’s made by Thorne, available on Amazon.
It saved my life when my various treatments completely wiped out my digestive system. The assimilation of nutrients, as you know, is very important, and it affects our moods as well as our energy levels.
Praying and wishing you well during this transition. Enjoy every moment!
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Hi All - I have been reading and trying to keep up with you all...just not posting for a while...finishing Ibrance cycle 18 tomorrow.
For the first time ever, my CA 15-3 tumor marker is in the high range. It has bumped around only in the "normal" range ever since initial bilateral stage 3 dx in 2014 and acted the same since MBC dx in DEC 2017.
Some of you will remember my previous MO was very apathetic with me and then was arrested for attempting to strangle his wife. His replacement is my Angel and she listens to my every word and every concern.
Like so many of you have said here, tumor markers can go up and down without meaning much but she (MO) is concerned too. We will be doing a bone scan and CT before the end of the month to rule out any progression...
I am hoping for the best...mentally preparing for the worst...
Very grateful you all are here supporting each other. And for all the new members, I am so sorry you had to join us but so happy you found us at the same time.
Gumdoctor
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Gumdoctor, so good to see you. My MO doesn't do any tumor markers at all but my former one did CA 27-29. He thought that one was more useful for us.
Good luck with the scans. Check back when you have results.
I think you should mentally prepare for the best, too.
So the trick to getting a better MO is to have your current one arrested for attempted murder? I never thought of that.
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Jaycee - HaaaHaaaHaaa!!!!!
Being a person of faith, I prayed for many months on what to do with the apathetic MO...the divine answer I received was to stick it out with him (the MO)...it is going to get better. Boy is it ever better with my new Angel MO
I am mentally preparing for whatever comes.
Gumdoctor
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PatgMc - I have 4 grown children and they still want to spend time with their grandparents (always have) and now want their young children to spend time with the great grands as well, so - your 15 year old may well chose to spend time with you! This May we were able to all be together at one time from my parents right down to the 5 great grandkids - a very, very special time indeed! I wanted to let you know how much I appreciate your posts and relate to them too. Ibrance made me nauseous at the beginning, but now seems okay, it is the intermittent, unexpected diarrhea that gets me! Imodium is my 'take it everywhere' remedy! I too am often fatigued and not sure if Ibrance or letrozole or the combo is the culprit!
jaycee - I always appreciate your knowledge and what you share with us all - thank you!
To all of you on this thread, I am grateful for the support, knowledge, prayers and positives that is shared here. Thank you!
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Thank you, Janky, for reminding me that we can always find someone with a worse malady than our current one. I'll take nausea over diarrhea most any day! Bless your heart.
Thinking about all your generations enjoying each other makes me smile and I look forward to spending time with great grandchildren. Thanks so much for your encouragement.
Love from PatGMc
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Gumdoctor--- Good to hear from you, girl!!!!! Post anytime and definitely keep us posted on your results. Will be praying for good results and that the tumor markers are just fluctuating.
All-- keep me in your prayers. You know I have been stressed lately about the disability issue. I have told myself to just calm down. I am using FMLA now and cannot even apply for SSD for a couple of months (using FMLA and short term disability with employer). But I think the stress is getting to me. I just don't feel good. Blasted hot flashes, aches and pains, and fatigue. I just feel plain sick. Like periods of nausea. And my mind won't settle down.
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Gumdoctor good to see you. Please let us know before scans so we can support and encourage.
Candy 678 there are many on here that take things for anxiety. I have anxiety at night. Even after all decisions disability and all of that I still get anxiety usually at bed times when I can no longer ignore the aches and pains. I’m sure someone will share there go to anxiety meds.
Janky and Pat the grandparent part of life is delightful. I haven’t had any great grands but my grands range from 4-24. They are truly a blessing and all the time I spend with them is cherished.
Have a great weekend all.
Tanya
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I don't know if the anxiety is making me feel physically worse or the physical problems are making the anxiety worse or both. I just hate how I feel. I didn't used to feel this way.
I am going to try to enjoy church services today. We have a guest speaker and then a meal after. Good homemade foods by our church folks. Trying to stay in a positive frame of mind. Hope the physical stuff is quiet today.
Have a good day all.
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Happy Pentecost, Candy. I hope that today is filled with joy and peace.
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Candy - I started taking a anti anxiety med 1 year ago and it has helped immensely. Apparently, or so my doctor and pharmacist assured me, it is non addictive (which at this point is moot) so I am staying with it. I also take a sleeping pill every night now, as I have too much awake time if I don't, and that is a choice I made - 1 5 mg zoplidone tablet nightly - if that is my 'addiction' so be it! My body and mind need to rest!
Tanya - Grandkids are a marvelous mood enhancer for sure! My 2 oldest, 9 & 7, live in Sarasota, just down the road from you it looks like...One of mine is coming by after church to have a visit and a bowl of Grammy's soup - he loves my cooking, which is such a positive for me!!
Pat - Stay well and keep your positives and knowledge coming our way!!
Happy Sunday everyone - Janice
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Janky, what dose of Ibrance are you taking? I dropped to 75 mg to get rid of diarrhea.
Candy, I take 0.5 mg of Ativan every night at bedtime. Lets me sleep. I don't know if it does anything else anxiety-wise. I'm mostly ok during the day.
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jaycee - I was on 125 for first 14 months, then dropped to 100 for my last 2 cycles...I go for blood work Wednesday so will see what that tells us. Because of all the comments on the stage 4 threads I am okay with dropping to 100 or 75 mg as many seem to remain stable on the lower doses...how long have you been on 75?
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Janky, thank you for finally getting me to put the starting date in my I/L treatments. I started in April, 2016 at 125 mg. That only lasted one month. I've been on 75 mg since. Did you notice a difference in the diarrhea when you went from 125 mg to 100 mg? The drop totally fixed it for me.
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Janky and Jaycee, it's interesting that you each had diarrhea while taking 125mg of Ibrance. I've only taken 100mg (and some 75mg) since October, 2016 and have not had diarrhea, only constipation which I think is actually from the Zofran and Phenergen. I suppose when enough people have reported their side effects, there will a distinct pattern depending on the dose.
I look forward to hearing the results some day of the 25mg Ibrance dose at MDAnderson. It also included a trial drug to stop the cancer from resisting the Ibrance. Hopefully, one more exciting thing for us!
I am loving that some of my aches have diminished in the month off XGeva, especially the ones along my ribs. Obviously that was my body's way of saying, "Don't do that every month!" It made it uncomfortable to turn and wipe myself and it let those creepy little, "Is this cancer?" thoughts rise to the surface.....always a bummer!
Love from PatGMc
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Good evening all
I wanted to ask if a few of you scientist doctor research ladies could give me a list of questions for my onc so that I can get my numbers stats? For instance I always read about negatives resistant positives etc and I would just like to compile a list of questions so that I can have it to compare to the numerous research trials etc and be able to figure out what my numbers are. It could be available for all of us and would make this medical language a bit more comprehensive for laypeople like me.
Thank you in advance.
Tanya
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jaycee - yes indeed, I have had less episodes of the diarrhea the last 2 cycles!
pat - I did not know that there is a study on 25 mg of ibrance, one of the many reasons I enjoy these threads, all of the knowledge that is shared. I have only had xgeva every 3 months and have not had any issues so far, your shots are every 2 months?
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hi janky! I went through a weird 2 months bout of diarrhea a few months ago. It was accompanied by lots of gas and pain in my abdomen. I took a break separately from the Ibrance and the letrozole...about two weeks each and it seemed to resolve. I also during that time upped my probiotic and tried to eat very clean and simply to give my digestion a break. It seemed to work. Another weird Ibrance dance random side effect! My MO seems to think that those who will get diarrhea from Ibrance get it right away...so of course here i am again the weirdo getting symptoms after many many cycles of Ibrance. However - it all makes sense in my brain!0
