Ibrance (Palbociclib)
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Thanks everybody. I am seeing one of the 4 Oncs involved in my case (gosh don't I sound important) next Monday so I will ask about Ibuprofen & dizziness etc with Letrozole & Palbociclib and report back. The drug trialnurses think Ibuprofen is ok and dizziness could be my blood pressure which is fluctuating a bit at the moment. I saw a pain specialist today (I know 5th specialist on my case). She suggested a facet sacro-iliac joint injection for the pain I'm having. Something else to ask the trial people about. Think with my aged face I should check out if they will allow me botox and fillers - bet that will be a big NO as they don't even let me have supplements. Love Chico the Lab Rat
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I think Ibrance is failing me. I had a scan -- and a resulting visit to the ER from anaphalixis (SP?) from the contrast dye. I have an appointment with my onc tomorrow, ok really later today, I'm a night owl! and my scan was released to the patient portal. It says:
ABDOMEN:
Solid organs: Liver is enlarged with steatosis. The spleen is normal in size. Calcification is noted within the spleen. The previous identified medial left hepatic lobe focus of abnormal enhancement is again identified and unchanged in size measuring 13 mm. However, there has been marked interval increased prominence in size and number of additional areas of abnormal hepatic enhancement. At least 12 areas of abnormal enhancement are identified, the largest in the medial posterior right hepatic lobe on series 5 image 59 measuring 14 mm.IMPRESSION:
1. Interval increase in size and number of enhancing lesions within the liver most concerning for metastatic disease progression.Three months inbetween scans shows this growth. I'm almost to my 5 years, too.
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Mzmerz, that's not news you want to wake up to...or go to sleep to and your ER trip must have been terrifying. Let's hope your MO can address your scan issues thoroughly and come up with a new protocol pronto, if indicated. Hang tough, sending {{{HUGS}}} .
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Hi MzMerz - Hang in there. You have had very limited treatment. Maybe just a switch to fulvestrant and ibrance will work.
>Z<
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Mzmerz, I am wondering also if this could be happening to me as I have had some mild, but nagging right flank pain. I am waiting for my latest set of tumor marker results. I am thinking of you as you face this and will be curious as to the next line of treatment. I've been pretty preoccupied with this and trying not to project. I see my MO on Dec 5th.
It's hard to adjust to"new normals", isn't it? Maybe I should say "new abnormals". I will be holding you in the light, and may the next treatment zap those @#%^& lesions. MJH
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Thinking of you today, Mzmerz, and hoping your onc appt had some positive news. Please update us when you can.
Has anyone else experienced higher than usual cholesterol and/or triglyceride levels with Ibrance or any other meds? I eat a mostly plant based diet, including a lot of raw fruits and veggies, and yet my cholesterol levels (done a couple of days ago for health insurance screening) are fairly high. Also more than once in recent months my BP has been higher than usual, even though I work hard eliminating stress. Just starting to wonder if it's the lack of estrogen or Ibrance or what the heck is going on that I have these stupid high numbers with an extremely healthy lifestyle. Maybe I'm just not getting enough exercise...
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hello all!
I finished my 5th cycle 2 days ago & am so cold, I am unable to get warm even under wool blankets with the fireplace on. I don't have a fever. My WBC & neutrofils have been low the last 2 cycles but high enough to keep me on. I didn't think about what could be causing this but Lindalou mentioned to me that she was always cold when her labs went down. Anyone else or other thoughts?? thx. I am heading to bed, under the electric blanket. cheers, dee
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Dlb823, my cholestrol levels rose and my cardio-oncologist put me on Lipitor. LDL and triglycerides are under control now but my HDL levels are low. I am more concerned at this point with my glucose levels. Since starting Ibrance and Letrozole my glucose level seems to be rising 4-5 points every two weeks. Just finishing up cycle three of this lovely cocktail now and glucose is up to 114. How high will it go before it levels off? Still dealing with nausea, diarrhea then constipation and vomiting. Not sure the side effects are even worth this. Scans are scheduled on 12/8 so we will see but tumor markers are rising after two months of the going down.0
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Regarding my visit today - he wants me to have a liver ultrasound to determine the best tumors to biopsy, and then have the biopsy to see if the ER/PR/HER2 status has changed, currently ER+ PR- Her2-, then determine treatment.
He stated he would probably change from Femara to Aromasin along with the Ibrance, as long as I was hormone positive, otherwise it's chemo.
I'll know more in a few weeks.
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Dee, I think you're reading my mind. I was just about to ask the same question about always being cold. I have always been mostly on the cold side but it is worse now. My normal body temp runs below 98 so I think that's part of it but I've taken to wearing at least three layers of clothing. One thing that does help a bit is riding my exercise bike to get the blood flowing. My numbers have never gone very low so don't know if that's the problem, but winter is going to be a real problem this year.
Deanna, I've been wondering about my cholesterol but it hasn't been checked since I've been on these meds. My PCP also took care of it but I rarely see her anymore and when I Have blood work done at the cancer center it's never a fasting test. I am going to ask to do a fasting one after the first of the year. I've never had to worry before as my HDL and LDL ratios have always been good.
For the record, I just finished rd. #11, hope we can all continue a lot longer. Mzmerz, praying this is just a small setback and Ibrance will have time to do its job along with the aromasin or another drug added to the Ibrance like Faslodex if that's appropriate.
Hugs, Faith (in the future)
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I'm colder too, overall, and have been contemplating a large body heating pad. My cholesterol is higher too, but luckily by good cholesterol is on the very high side so they aren't worried about the numbers. And oddly enough I've been getting higher glucose levels on my tests but chocked it up to not being so great with my diet lately (darn homemade cookies) but I'll get it together on that front and see what happens.
MzMerz, sorry to hear about your liver but the plan sounds good. Will be thinking of you and looking for updates when you have them.
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Hi Faith. I am right behind you, starting cycle 11 this week. Scans coming up in December hoping for good results coming into the holidays.
I am not cold, but I am heat seeking. Spent 30 minutes in an IR sauna. And love lying on these biomats. Early on when I was getting ALA and vitamin C I would lie on these mats at my doctor's office while getting my IV. There is some basis for the argument that the IR wavelength from these mats penetrates the body better stresses the tumors more than a regular heating pad, but it definitely felt good. They come up on craigslist and ebay for a reasonable price.
>Z<
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I am starting my 11th cycle of ibrance and faslodex. My tumor markers are increasing and just had a pet scan yesterday. See the ONC on Friday to get the results, My mets are in the liver and 6 bones and 2 lymph nodes. I also feel I am at the end of the Ibrance cycle. Anyone out there facing similar situation and what has your doctor talked about moving you to next - mine is talking about Xeloda as next chemo. Any thoughts would be appreciated.
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BC110615 too bad your leaving Ibrance/faslodex I had that for 4 months and it was easy/peasy. Unfortunately it didn't work for me so I moved on to the next which was Xeloda in my case, I'm finishing my 2d cycle of Xeloda today and other than the hand/foot syndrome I'm tolerating it well. Hope it works for both of us!
Aurora
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Jensgotthis - my glucose level is rising every 2 weeks with my labs by 4-5 points. Worried about this as my diet has not changed. It may be that with my fractured ankle I am getting less exercise but it is worrisome. If you figure out a way to start lowering your glucose level I sure would like to hear about it. I started taking cinnamon capsules about a month ago but that has has not been helping at all with the continuous upward rise.
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BC11 - welcome. I wouldn't assume you are done with Ibrance based on TM's. They don't track with cancer progression in many women. Hoping you get a positive report from your doctor tomorrow.
If you fill in your diagnosis and treatment history, we'll have context to answer you question about treatment options. In the meantime, I would curl up with Bestbird's Guide to MBC. It's a must read whenever we are changing cancer treatments or even just strategizing about next steps.
>Z<
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HI,
What is ALA and is getting cold a side effect of IBRANCE. What did your Dr recommend for vitamins.
In Sept 2016, I have been diagnosed with stage IV breast cancer. I have it in both breast, and it has metastasized to my bones, however my organs are cancer free.
Any information you can pass along to me would be much appreciated, since I just started my IBRANCE therapy.
Thank you in advance
Mary
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Z, thanks for the info on the biomats. They look interesting, do you actually have one or do you use it at spa or medical facility? I'll have to check out eBay or craigslist as they are pricey.
Thanks, Faith
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I'd like to revisit the issue of rising TMs while on Ibrance. I know we all have theories as to why this happens, but can anyone give me a solid reference from research literature? Mine just took another 50 pt. jump, and are now the highest they've ever been -- just over 400. As I've probably said here and other places, the last time I saw my UCLA onc she was very firm about not worrying about TMs unless they literally double within a one month period. But it's hard not to worry about the steady upward trend I've been experiencing over the past few months.
Separate but possibly related to this, I am gaining weight around my middle like crazy now. Just had a marathon clothes trying on session yesterday, and cannot believe how thick my midsection has become, even though I've only gained about 3 lbs. So -- and b'cuz of the above concern re TMs, which I'm thinking may also be related to inactivity, I am determined to get back to walking several miles a day, something I've let go by the wayside over the past few years. I am thinking of starting a new "motivation" thread similar to one I was involved in here several years ago -- one truly aimed at supporting and motivating us to get more exercise every day. Anyone interested?
Welcome MAW-2010. I'm so sorry about your recent Stage IV dx, but glad you've found us. I don't think getting cold is listed as a common SE of Ibrance -- just something some of us are experiencing that may or may not even be related. I personally use quite a few nutritional products (i.e. C, E, a bone building supplements and several more), just b'cuz I firmly believe they keep me healthy (other than having mbc). Most conventional docs won't recommend them because they don't have nutrition training and are sometimes overly concerned about product quality, mega dosing, and possible drug interactions. And where did you see "ALA?" Not sure what that is. Deanna
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hi all,
just checking in. Still cold but not as bad as the day I posted here. Deanna, I will have to check out my TM's because I haven't had the results in a while. I just get "they're Ok" not the actual numbers. I have worked very hard to keep my middle down, I think it's partly the drugs & partly our age. I would join your motivation thread, but I will warn you, I do really weird stuff to keep active. I spent the last 3 days raking my 200' gravel driveway of all the weeds!
Mary, I too have bilateral BC, rare I'm told. Welcome to our group.
Thanks, Faith, Jen, Aurora, >Z<, everyone.
Cheryl, MzMerz, BC, good luck, keep us updated.
cheers, dee
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MAW - we probably need a little more context for ALA you are inquiring about, but if you are talking about vitamins and supplements, it stands for alpha lipoic acid.0
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ALA is Alpha Lipoic Acid. It's one of several alternative that people take to help fight cancer. Complicated topic. But it is something that I have done both as IV and orally.
Deanna - We have an active Stage IV fitness thread where there are several very active ladies ready with motiviation.
The data on rising TM's with improving scans is not available for palbociclib. It's more associated with the A/I's. I've read the data for letrozol, because I am on it. I think you are on faslodex so that would be a different. That said, the real issue is that tumor markers are innaccurate to the point that many doctors do not use them. In so many cases, they are misleading.
Faith - I used the biomat only when I was getting vitamin C and ALA IV's. Right now I have access to an IR sauna which accomplishes the same thing so I do that.
>Z<
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Ibrance and Pfizer copay one card that expires on 12/31/16.
I just spoke with a representative there and was told that they do not know if the program will continue for 2017 and that we should call back in mid December. If anyone hears anything about the program continuing please let me and others know asap. Thanks.
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Z, which do you prefer, biomat or sauna? I just got a TAO-chair PEMF far-infrared mat, and so far I really like it. If I could figure out where to stick a sauna in my house, I might consider that, but I'd like to hear from some people who have used both.
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Lulubee - The biomat can generate more intense heat locally. I think if the tumors are close to the surface (like my primary breast tumor and lymph nodes) you can fry the heck out of them on the mat. Basically, cancer cells in tumors are poorly irrigated with blood and they can't dissipate heat. Heat doesn't effect free floating cancer cells but it does disturb the tumor environment.
I like the way the biomat feels. You can do it home, cheaper than a sauna ... the biomat has a lot of advantages. I should get one ... The only reason I don't is that at the moment I have easy free access to an IR Sauna. The sauna's are good for a full body detox and make me feel more alert and energetic. They seem to clear the medicinal haze, probably by moving the metabolites through the system.
Both are good.
>Z<
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In reading the posts do most of you get vitamin C injections? What kind of sauna is best? Can you find it at a spa or health club. Just looked at an interview with Chris Wark about a infra-red machine that helps with inflammation. It was very expensive. Also, wondering about detoxing because I am afraid it will affect the medications. Any thoughts there. Thank you for all your inputs. They really help.0
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Ugh, I have mouth sores now like I did at the beginning of taking Ibrance. Now why would I get mouth sores after all this time without them? I had them my first two cycles at 125 mg, then had no more on the reduced dose (100mg then 75mg). I've had 20 Ibrance cycles total.
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Airlinegirl - Do not waste money on an expensive IR machine. IR sauna's are common at spas and gyms and either free or affordable. The biomat can be reasonable if you get a used one on ebay or craigslist. Any sauna will do the trick if you want to sweat out some toxins.
Overall wellness is the cornerstone of my cancer fight so detox is a good thing in my book. We each have our own ways to tackle this challenge.
>Z<
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Shetland, I am on my 20th cycle too, and never had mouth sores until last month. Funny that you mentioned it. I wonder why? But this Medicais still new so maybe much is unknown, which my onc says is why I have to see her every 4 weeks.
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Hi Airlinegal,
My Onc nixed large doses of Vitamin C or any mega-vitamins, but encouraged the daily use of turmeric and green tea to fight inflammation based on hard science, not anecdotal reports. He also recommended this book, "Anti-Cancer, A New Way of Life" by David Servan-Schreiber, MD, PHD, himself a brain cancer survivor.
IMHO, you really should check with your MO before doing anything like Vit C infusions or detoxing or at the very least, let them know if you go through with any of them, so they'll be aware. There are tons of complementary and alternative treatments that sound "sciencey," but really aren't based on anything scientifically verifiable, just often well-articulated personal experiences, so proceed with caution. That's not to say that they can't help, but we are so susceptible...in every possible way.
I give a big hip-hip hurrah to all of the researchers toiling for years in their labs and patients who participated in clinical trials to get Ibrance on the market!
Katty
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