Ibrance (Palbociclib)
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Micmel - I also have low blood counts, which are Ibrance, of course. Horse doses of turkey tail have increased my counts so I don't HAVE to drop my Ibrance dose. But I am going to drop my onc a note next week and see if she will consider dropping the dose anyway to improve QOL.
Join us on the Stage V fitness thread. You will find a lot of runners like yourself trying to figure out how to get out of bed and back on the streets. We have people who have gotten back to full bore trail running and, of course, Lulubee is on there, dragging her oxygen tank to the corner with plans to make it around the block. Quite a crowd. All tough as nails.
I have been whipped by something this week but heading out for a run now. Doctor's orders. He is a crazy 50 mile trail runner type. He put his favorite 5 mile run on a prescription note for me.
>Z<
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Z~ just got back from another mile walk. Second day in a row. I am whipped. lol thanks for the invite to the fit site I will definitely check it out. I can take all the advice I can get. I hope you're feeling better and the bug doesn't have you down too much more. I am on 125 mg ibrance. Last time I saw my onc , he said I was stable and wanted to continue on the dosage. I just don't want any added neuropathy because of the oral chemo. I just wish I had a time machine to take US all back to a time To where we all knew what the c word was. But it never applied to us. I miss my old self. By getting back my ability to run, can only add hope and strength. Having cancer is hard work huh guys? Have a good day! ~Micmel
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Here's a link to a very good article from Dana Farber and Harvard Medical School summarizing the various properties of the cdk 4/6 inhibitors palbo, ribo and ademaciclib.
https://www.karger.com/Article/FullText/447284
It discusses the research on their combination with other drugs as well. I thought you might find it informative. The table 1 is a good summary of their common adverse side effects.
http://www.karger.com/WebMaterial/ShowPic/512361
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Thank you Timothy relevant to many threads. I may repost it. Thrombocytopenia is a side effect that is hard to pick up and not discussed much, but i think I have experienced it. it means deficiency of platelets in the blood. This causes bleeding into the tissues, bruising, and slow blood clotting after injury. 76% of patients in the ibrance trial experienced some level of thrombocytopenia. Something to keep an eye on.
How is your wife doing on Xeloda?
>Z<
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Yesterday's trip to the cancer center took a turn for the worst. Went in thinking I would be starting Ibrance only to find out my immune system is back to killing me. It is destroying all my good red blood cells and platelets are down to 57. So instead of Ibrance I stayed and did another round of A/C. Didn't see that coming. She gave me the rundown again that if they can't stop it it will probably kill me. I go back tomorrow for blood work to see if there is any improvement. Back in November when this happened she gave me two days to get my affairs in order. Totally terrified. Has this ever happened to anyone of you
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Dianarose~ I wish I had more concrete information to ease your fears. We are sending strength and sincere prayers that the blood counts will improve when you go back . You will be with me in my thoughts and I will send you all the energy I can , so you may feel all of the caring and support we can possibly send you from a far. May God bless you and keep you safe in his hands. It is like a sister hood, when one is hurting , we all do. Please keep us posted if you feel you can. ((((Dianarose)))) ~Micmel
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My wife is doing well on the xeloda. We have an appointment this Tuesday with the oncologist for blood tests, and hopefully everything remains stable or improved. My wife suffers from low platelet counts owing to a combination of an enlarged spleen, which resulted from her liver congestion and resultant high blood pressure, and the suppression caused by the xeloda. To make things worse, they have her on a heparin based anti-clotting medicine, a daily injection she takes. It is speculated that it might prevent her liver from developing more clots and blockage. The problem is that the cause of her clots and blockage of her liver is unknown. It has some presence prior to starting chemo, but the chemo made it worse, much worse, initially, and then it subsided. So with her low platelet count and blood thinner medicine, it takes some therapies off the menu. She has experienced the odd unexplained bruising, and sometimes continued bleeding at an injection site.
The oncologist thinks she would still qualify for palbociclib on a compassionate basis, as her low platelet count isn't as low as it appears in the blood test, as platelets are instead stored in her spleen to a higher than normal degree. I'm of the mind that as long as the xeloda continues to show benefit, she should continue it, before switching to palbo. The Onc now thinks the same as her response to xeloda appears to be better than expected.
Dianarose, what do they believe is affecting your immune system? Is your immune system too strong, or too weak? Is it primarily the red blood cell count (anemia) and platelets that is the problem? I know my wife has had problems with white blood cell counts and platelets being low due to chemo.
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I agree to that feeling of being blessed to escape the aggressive chemo, surgery and radiation they originally proposed. Of course, there are some of the midnight terrors to be dealt with. Have just completed first Ibrance cycle. Felt great until pretty much the last day and then the mouth sores. I have always been susceptible to them so I was surprised when they didn't immediately appear. They lowered my dose to 100 mg from 125mg as my white cell count was so low. Hoping to feel better soon. Right now just so tired- too tired to sleep, to tired to go out, etc. Time for lots of books and TV. Thank goodness for Amazon Prime and Netflix.
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((dianarose))
Dianarose I have no idea what is going on but I am praying for you complete healing.
Z
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Lorraine I am glad the first cycle was easy. It's a good sign this will go well.
Z
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Timothy- I so happy you are getting a strong response to Xeloda. It's nice to have an easy option like ibrance in you pocket for the future. And they are still figuring out the cdk inhibitors as you know. In a year the landscape will be different and hopefully improved at least a bit.
Z
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Dianarose, I'm so sorry about the unexpected need for chemo yesterday, as well as the whole uncertainty of your situation. My only thought is, if you are not being treated at a major university cancer center, could a second opinion at one of them, such as Dana Farber, perhaps yield any additional treatment options and more optimism? Just my first thought in reading your post.
Here's a list of the types of places I have in mind, which include Dartmouth, Yale & MIT in New England. https://www.cancer.gov/research/nci-role/cancer-centers/find Deanna
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I'll be starting Round 4 of Ibrance with the Letrazole this evening. So far, fatigue seems to be the worst side effect for me, but it's tolerable. Saw my Onc Wednesday, all labs decent so far so I'll continue on the 125mg. I'll be having MRIs of the thoracic and lumbar spine March 7th and a PET Scan on March 14. The Scanxiety set in almost immediately when I went to schedule the Scans!! The crappy part about this is I've been going through this Bone Mets crap for 8 years now. The good news is I've been going through this Bone Mets crap for 8 years now!!
I'm hoping for a good run on this treatment and love reading the posts from you ladies who have been doing this long before me! Thank you for the information and support!
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SusanR You have no idea how encouraging it is for us when you speak of 8 years with bone mets. I look forward to reading a post from you one day that says you've been going through 16 years with bone mets and I'll be at 8!! Thank you and my best to you!
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diana rose-sorry to hear this. do they have a hematologist in your oncology group that could help? Hope you are doing OK. Keeping you in the light.
lorraine and susan- glad you are mostly tolerating the Ibrance-it will work well!
and big hugs to everyone else, too! MJH
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They don't know what is causing this. They will check my blood again tomorrow and there will be a hematologist there as well. I have been eating kiwi to help build up platelets along with some papaya juice and some kale and steak later. Also started B12. Don't know what else to do.
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Dianarose~ been thinking about you all day. Been sending up prayers, And sending strength to let you know we all care. You are in my thoughts.
Huge hugs. ~M~
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Dianarose, my thoughts and prayers are with you...
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Dianarose, Sending good thoughts your way! 57 is truly a crazy number. Unfortunately for us, it isn't like swimming races where we want lower numbers. Meeting with a hematologist will give you some good news.We are all pulling for you to find a good answer!!! Hope you can feel all the virtual hugs from around the world.
The B12 does seem to help some. Z has been taking Turkey Tail and says it has helped keep her white counts up enough to stay on the 125 mg dose. I just bought that today as low counts are now keeping me off the lowest dose for 2-3 weeks instead of 1. (Z - correct me if I'm mistaken.)
Tim - Glad the Xeloda is working for your wife.
Deanna - Good to see you and extra opinions can help.
SusanR - Wow, 8 years of this c%*p! Wishing you many more!.
Lorraine and Susan, Ibrance has been pretty manageable for me Still feeling decent and scans are stable so far. We all live day to day, but we aren't alone.
Hope everyone has a good weekend.
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Kathryn - I think turkey tail did lift my counts up, but I am taking horse doses (3000mg/day) of hot water extracted turkey tail. There are different ways to prepare it. My complementary onc says they just don't all work. Kathryn, and everyone trying this, I am really curious whether it works or not. I'd like to do a little clinical trial here since this is important. But that does mean reporting negative results.
The funny thing is that I just emailed my MO to decrease my dose to 100mg as the fatigue and shakiness is interfering with my exercise, even though my counts are not low. I am starting a round 15 on Sunday and that will be at 125mg, but I have asked for my next prescription to be 100mg. Planning to be on this for a long time and tired of being tired.
>Z<
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Dianarose, all I can do is add my good wishes and thoughts to the rest. I'm glad you will see a hematologist. Try and make sure someone is advocating for you so that they don't delay.
Zarovka, I think you have given 125 a long time, and seeing how you feel on 100 is a good idea.
SusanR, wishing you great success on Ibrance and letrozole. Eight more years and then more!
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Dianarose - I hope you are feeling better soon.
Z - Sorry to hear you are still not feeling great. I am about to conclude a one-month turkey tail mushroom personal "trial." Bloodwork next week and I will report back. I am not taking quite as high a dose as you, Z, as I didn't feel totally comfortable exceeding the bottle recommendations without my doc's ok because I'm a little worried about whether it could potentially compete with the Ibrance. I do take the hot water extracted type also.
For an accurate comparison, of course it is Important to compare our ANC at the exact same time in one's cycle to be a fair comparison since our counts change significantly throughout the monthly cycle. I get my bloodwork done at the same time each month, so will compare to last month at same point just before resuming cycle. This is of course not really a reliable "trial" on my part as other things can impact our counts, but I'll let you know my experience. Your mileage may vary :-)
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Dinarose- i echo the recommendation to go to one of the NCI designated cancer centers. I know sometimes it is not easy to leave a long term care provider, but you should at least see what they have to say. Many will work hand-in-hand with a local MO. Wishing you the best.
Susan R. Always inspiring to hear of long term survivors. wishing you 8 more years and hoping Ibrance is the ticket for you.
Question for the group - I am heading to Mexico for a long weekend- Peurta Vallarta - Can't wait. I live in WI so am looking forward to beach time. I am wondering if I should be taking any precautions besides the obvious - dont drink the water! The place is all-inclusive so I should be fine. One of the women I am going with wants to go to a local restaurant recommended by a friend. Any thoughts on doing this? My counts are pretty good- Low WBC but good ANC.
health and happiness to everyone
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time-for-a-cure, I would ask your onc to RX a strong antibiotic to take with you, just in case you need it. I would also avoid salads and anything uncooked, like ceviche. I don't normally avoid salads or other raw foods here, but Mexico is a whole different scenario, especially with low counts, and salad greens, for example, will be washed in the water you want to avoid. I would also have antiseptic wipes along and use them everywhere, including in and around your plane seat. Also a mask to put on once you're seated on your flight, especially if anyone nearby is coughing or sniffling. And I would be extra careful if any of the meals at your resort are served buffet style. I learned the hard way that buffets are great places to pick up germs from shared serving utensils, so would not hesitate to have some little disposable gloves with me if going to one in the future. In fact, the last time I saw my onc, I nabbed a few from their office just for that purpose.
Enjoy Puerto Vallarta and stay healthy while you're there!
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Moissy- I agree that we have to know the day in the ibrance cycle the blood work was done. We're really comparing our own blood work before and after turkey tail. Looking for an improvement in your individual CBC panel. Comparison with each other doesn't make much sense.
My complementary onc has been doing integrative medicine with ibrance for 3 years so I trust his dosing. However there is no reason not to start low and see what happens.
Time for a cure. I tend to eat lots of raw foods and salads in us restaurants and I haven't gotten sick. There is no evidence of increased incidence of infection on ibrance.
However, people do get sick more often when they travel due to the increase in exposure to new bugs. The problem with getting sick on ibrance is that you deal with the illness on top of side effects and it sucks. It can be hard to distinguish illness from side effects which makes identifying and treating the illness harder.
Best to follow deannas advice and not get sick.
Z
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Hi Time - try to upgrade to biz class with miles and make sure to wipe down the airplane tray (bacteria haven). All of D and Z's tips are great. I have traveled to Europe and the US last/this year without incident. Please avoid salad bars and if they don't have bottled water - have a glass of wine instead! Enjoy and keep us posted. I start round #16 shortly. Z - I think you will like the 100mg level better - I certainly have. Still get tired, but not as badly at with the 125mg. ps. post jaw rads my TMs dropped 10 points to 67. Hoping for a further drop in March.
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Platelets were the same today. At least they were not worse. I have terrible skin pain from the chemo.
I go to New England cancer center. They are in contact with other centers. I have been to a couple of the big centers in Boston and no difference then the cancer center here.
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Hang in there DianaRose. My scalp burns from Ibrance. I can't imagine if it were more extensive.
>Z<
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Dianarose, I'm so sorry you are having such a problem with this treatment. Will keep you and everyone here in my prayers.
Z, I'm right behind you, my cycle #15 starts on Wednesday, still at 125 mg but I'm ready to ask for a dose reduction to 100mg for the next cycle also. I'm so tired of always being tired and having a constant sore mouth. I have my blood work on Wednesday but don't see the onc. this month, he's on vacation. If my numbers are stable, I'm going to call the PA and ask her to check with him as soon as he returns so I can start it the next month. Otherwise it won't be until rd.#17 since my next appointment is the day before rd.#16.
Claire, great news on the tumor marker drop. Keep it up!
Faith (in the future)
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Faith - My onc is hard to reach and hard to get an appointment with as well. I called the "Triage" nurse on Friday and requested that the next prescription be at 100mg. She said, oh you have to have an appointment with the onc before that can happen. I could have easily blown a fuse. It's impossible to get an appointment with her. She works like two days a week in our regional center and then one day a week at a remote office that I am not allowed to go to. Appointments are 3-5 weeks out.
Also, I talked with onc about lowering the dose at my last appointment. She is fine with 100mg. Very few of her patients stay at 125mg long term, for one reason or another. If the nurse just drops her a note, she will approve the lower dose. But the nurses act like stopping by on a dime and chatting with the onc is an option. Like they don't know the backlog is 5 weeks. Like it is really possible to wait for the onc for every decision. Like I can't read my blood work.
Sorry to rant, but your discussion of the schedule and when you can start, triggered that line of thought.
I hope your TM's are stable and we can chat in a month about how fantastic the lower dose is. Goodness you are only 3 days ahead of me.
>Z<
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