Ibrance (Palbociclib)
Comments
-
It is very confusing to draw a conclusion about the effect of vitamin supplementation on breast cancer. The above article condemns vitamin B12 for patients, yet other studies show it has no impact.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49797...
Conclusion:
Vitamin B supplementation does not have an effect on cancer incidence, death due to cancer, or total mortality. It is associated with a lower risk of skin melanoma, but has no effect on other cancers.
Another article says that iron deficiency in pre-menopausal women leads to increased rate of growth of the cancer, and that it can be reversed by supplementation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC25772...
Very confusing. My wife has a severe iron deficiency, and if not corrected, it will kill her, rather than the cancer. So, she choses to treat the most immediate threat and supplement with iron. Otherwise, she would be another woman who dies of "complications of cancer".
0 -
I was told NO vitamins except for Vitamin D.
0 -
I have a breakout on my face...red spots all over and just on face. Never had acne and wondered if I/L could be the cause. Anyone else experienced this from meds?0
-
YES ! I have red spots too,just on my face,so it must be Ibrance as I am not on L......Also is Turmeric OK to take?
0 -
Hi Ruthie,
Nicole started a thread awhile back on what to avoid. https://community.breastcancer.org/forum/8/topics/...
There is some good info on that thread.
0 -
Thank you Simone80
0 -
Ruthie3 - I was told by my oncologist to not take Tumeric capsules as they have estrogenic properties. Of course I have been taking them for a year to reduce inflammation - eating tumeric is fine.
Simone80, I will check out your link regarding what to avoid.
Husband11 - I take vitamin D, Calcium and a multivitamin.
Started cycle 2 of Ibrance on 12/31. I am using mouth wash and salt water rinses so to avoid the mouth sore I got at the end of cycle 1. Otherwise, no complaints.
Hope everyone has a great weekend!
0 -
Aprilgirl - did they knock you down to 100 or keep you at 125? I'm on 100 now and so far (day 3) feels ok. Much less bone and muscle pain although my body feels so heavy today. Is that fatigue? Like I don't want to sleep but moving is too much work..
0 -
SondraF, they kept me at 125. I will see my oncologist on 1/16. Have a blood test on 1/14. I am feeling ok but really trying to get a good 7 hours of sleep which has been a challenge for me for years! I have only been on cycle 2 for 5 days so feel pretty good so far. As I also broke my wrist on 12/1 and have a cast on my dominant hand EVERYTHING is taking twice as long to accomplish and I can't exercise. I am by no means a super fit person but I feel better if I can go to the gym a few times a week. Hoping the cast comes off on 1/15. Big week next week! Cast removal 1/15, onc appt and fulvestrant shot 1/16 and 10 day trip to Hawaii starts on 1/17! My husband has a work conference in Oahu so I tagged along last year and it was great - so I am tagging along again and we are extending with 5 days on Maui. I love Maui. He prefers Kauai. We haven't been to Maui in 25 years and have visited Kauai 2 times in that time frame.
2020 I have declared is the year of me asserting my needs, so MAUI it is:) To be honest, we don't go to the Hawaiian Islands very often, so I would be happy at any of the islands but I feel like it's more important than ever for me to be able to travel places I really want to visit (since I got this stage 4 dx in November). It still feels surreal because I feel pretty good, esp since starting the Furvestrant. My only symptoms were chest pressure making it hard to take a deep breath and my partially paralyzed vocal cord (swollen lymph nodes putting pressure on my laryngeal nerve and also on my windpipe). Voice still sounds weird but seems to be getting better. No doctor can tell me if the vocal cord will ever get better. I will have pet scans in the end of Feb and really hope I see significant shrinkage in the lymph nodes and no other progression at that time.
0 -
Hi all.
Question for the group, especially the ones on Ibrance for a while-------
Do you ever have bouts of chills?? Today I had chills for a couple of hours this afternoon. Wrapped in a sweater. No other symptoms to think I am getting sick. Did feel very tired during the time of the chills. Then later chills gone but tired continued. I am currently on my 7 days off Ibrance. I have done this a handful of times during my 25 cycles of Ibrance--don't know if during cycle or the week off.
I tend to blame the meds for weird feelings. Maybe it is not the Ibrance at all. Or the cancer. Maybe something totally unrelated. I will watch for other symptoms in case I am getting sick.
Thanks for any responses.
0 -
Aprilgirl,
A trip to MAUI sounds wonderful. I've never been to any of the islands. I just can't get my husband to go. You're very fortunate that they caught your cancer before it spread to any organs or bone.
I feel pretty good too. I have a pet in a couple of weeks, hoping I'm still NED.
0 -
Candy-678, funny you should mention that. I had the chills this evening for about a half hour. I've actually had to take an extra week off of Ibrance. It's unusual to have chills. I have had hot flashes for many years (nothing to do with Ibrance). My husband asked if I felt like I was getting sick. I know I'm not. They did go away. It is colder here right now, but there is a difference between being cold and having the chills. It was definitely the chills.
0 -
Candy,
I also get the chills since going on Ibrance. I am well past menopause, but sometimes I get the chills, bundle all up, and then I get a faslodex hot spell. Great fun! But the temperature stuff has been bothering me. I haven't mentioned it to my MO, because whatever SEs I mention, she and the NP seem to brush off like I am half crazy. So I just make a note of it and try to remember. For me, I think the chills are worse during my one weeks than on my off week.
Bev
0 -
Candy...I was also having chills. It seemed like it hit me 2 hours after I took the pill. I would be freezing and be bundled up and then after two hours the chills would be gone. I am now on 100 mg dose and I haven't felt it since then.
0 -
I was having more cold flashes than hot (I had to look up if that was even a thing!) last month and spent most of the last five days of the cycle and a day or two of my week off stuck under the heating pad. I explained to my MO that I felt 'deep cold' not chattering teeth or shivers, but bone cold. It hasn't come back yet into the first week of 100.
At any rate, MO added a thyroid check to my blood test and knocked me down a peg, but some research also suggests it has to do with red and white blood cell formation in the marrow. Which, you know, checks out considering the drug's purpose and when the chills come in the drug cycle. Probably not surprising that my counts didn't recover quite enough to the magic 1, but that is ok, Im having far less bone and muscle pain on this dosage now.
Man, I want to go to Maui. Or anywhere not grey and drab right now. We don't have snow here but we don't have any sun either...
0 -
Thanks all for the responses to the chills issue. I am usually not the type to get cold either, thanks to the Lupron/Letrozole hot flashes. It lasted a couple of hours yesterday afternoon--definitely "chills". Then bam a hot flash and no more chills. Sondra- You mentioned "some research suggests it has to do with red and white blood cell formation in the marrow". Interesting. During the week off of Ibrance the marrow would be making more cells, right? So maybe that was it. Where did you see that research?? I would like to read that.
Feeling ok so far today.
Thanks all for the info. Interesting what the meds do to our bodies.
0 -
Candy - Im paging through my history now, I KNOW I read it somewhere but I was also paging through a lot of stuff on thyroid things too. I thought it was curious how that deep cold was gone after the first two break days. I don't mind being cold and have a very high tolerance, but this just got annoying to the point where I mentioned it to the MO rather than the weird heart palpitation thing I had one night.
Let me see if I can find it.
0 -
Hi all, last fall my doctor gave me the good news that my MBC was in remission. Unfortunately, I recently found out that I have lymphoma and will need chemo to treat. In order to do 6 month chemo regimen, I need to be off ibrance. I am so worried that while treating the lymphoma my MBC will progress. Anyone ever had to be off ibrance for a while? Thanks for sharing!
0 -
Hi KelQ-Well that totally sucks to get lymphoma when you were just enjoying remission from MBC. I don't know if she still reads this thread regularly but Faith stopped taking Ibrance 2 or 3 years ago because she was going to Italy for a vacation. With her MO's approval she never resumed Ibrance and just stayed on letrozole or some other AI. The last time she checked in she was still stable so I hope that will also be the case for you. So sorry you have to deal with lymphoma but it sounds like it is curable? Best wishes.
0 -
Hello All, chills yes, as well as hot flashes. We call it Roastin’
Freezin’ and vice versa.
Have also got a newissue with mega high cholesterol (8.6, should be below 5.0). Diet decent so think it’s the Letrozole. Will not be happy to be put on a statin, so might be a fight with the GP on Thurs...we’ll see.
KelQ, you must be seriously pissed off!
0 -
Hi everyone, yes I do still lurk here on occasion. Thanks Chicagoan for remembering me. As far as I know, I’m still stable, my MO has never said the word remission to me. I will know more next week after I have a PET scan, my first in a year. My tumor markers have been stable also but they never got very high so don’t know if they are very reliable. I have lots of aches and pains but nothing that screams cancer. In fact at my last appointment with the MO I asked if I could take Letrozole only every other day and he was okay with that. It made me very tired with lots of joint and muscle pain. I do notice more energy on the every other day regimen. I will know soon if I made a mistake or not but I can always go back to Ibrance if necessary. The reason I asked for the reduction in doses of Letrozole is I had read somewhere here on BCO that it has a long half life so I thought I would ask.
It was in January 4 years ago that I started IBrance and was on it for about 20 months and since then only Letrozole. My MO says it’s a powerful drug by itself. So far it’s doing it’s job of keeping me stable. So for anyone worried about taking time off of Ibrance, I wouldn’t worry too much. The other thing I’ve been wanting to tell you all is that a lot of your symptoms are from the Letrozole. I still have hot flashes, joint pain, muscle aches, plantar fasciitis,etc. But, I’m still living with MBC for 4 years now and with BC itself since 1991. There is always hope.
Sending lots of love and prayers!
Faith (in the future).
0 -
Thanks for your replies and the especially reassuring input from Faith! I have been off Ibrance for a few weeks now and Faith is right, all the side effects come from letrezole, so not even a win there! I am angry, sad, and feel like the world has turned against me, but hoping that I will adjust and move on with life just like I did a year ago after MBC diagnosis. A little part of me thinks maybe I was misdiagnosed in the first place, as my met was in a lymph node in my neck that was never biopsied. Perhaps that was lymphoma in the first place, who knows! The what-ifs keep me up at night, but all I can do is move forward. Fingers crossed that I can take a break and go back to ibrance at a later time with no progression. I often read, but don't post as frequently - you ladies are the smartest and strongest women on the planet. Keep up the great work!
0 -
Karenfizedbo15, are you already taking cholesterol medication, or is this a new problem? There are a few threads on here dealing with my experience with the statin drug Atorvastatin (generic Lipitor)... let's see if I can condense it!
Was taking 20mg daily for high cholesterol, had total cholesterol number down to 148. Started experiencing awful leg pain, blamed Ibrance and/or letrozole. Was using a cane just to walk a few feet. Thanks to some postings on here, realized that the Ibrance was using the "pathway" out of the body that the Atorvastatin was previously using, so levels of Atorvastatin built up. I switched to taking it every other day (doc agreed that a lower dose every day would still give me the same problem). End result, after three months now - NO PAIN!! My cholesterol level is so far holding in the 170s, which is fine with us! I've been walking up to two miles a day, with no pain whatsoever.
Just thought this was worth repeating!
0 -
Hi Faith!! Thanks for that reminder that femara is powerful stuff on its own, and perhaps after getting to stable with Ibrance it can be dropped and saved for later on, on progression you would know that the cancer remains sensitive to it! My insurance mandated a switch of specialty pharmacies and they were taking forever to even send the Ibrance out, now its in the mail but I'm going to seriously consider extending this drug holiday, since I've been off it since Christmas..
0 -
Hi Cure-ious, yes Femara is powerful on its own. In fact, when I went off the Ibrance there was still some tumor lighting up in my lungs which is where my Mets were. Using only Femara, the tumor has disappeared. I’m getting a little scanxiety as I’m having a PET scan on Thursday and just praying nothing shows up. But, if it does, I know I can use Ibrance again probably with Faslodex depending on what lights up. My MO said that would be the next probable treatment.
If it were me, knowing how my slow growing my cancer is, I wouldn’t hesitate to take a longer break from Ibrance if I were you. Remember, Femara is still helping to fight the cancer. In fact, I’ve been told that before Ibrance, just Femara was often used for MBC.
I don’t want to tell anyone what to do against their MO’s advice and you should know, I’m at a much different stage of life than most here, being 79 years old. I certainly am not in any hurry to die from this rotten disease, my goal is to live long enough to die of old age in my sleep. (LOL, I guess I’m already old). But before that, I’d like to see some grandchildren get married and give me some beautiful great grandchildren.
Sending lots of prayers and love,
Faith (in the future).
0 -
Hi, I'm a Faslodex/Ibrance user since 2015 when BC mets returned to my liver after 14 years on letrozole alone. I just got out of the hospital, had a intestinal blockage that turned out to be ..... BC mets to my intestine!! They removed the tumor, so I'm tumor free at the moment but now not sure what the doc is going to recommend. At least I am finally able to eat whatever I want after 6 months of being told I had IBS. Does anyone know anyone with this type of BC mets? I think it's rare.
thanks, Nina
0 -
Nina,
Did they determine that your tumor was still IDC? This sounds like ILC, which can go to the intestines, the abdominal area, and other weird places.
0 -
Great to see you Faith. Thanks for stopping by. Update us on the pet if you feel like it. I had one on Jan 3. I saw my palliative care team yesterday and they couldn't access the report yet. I probably won't hear until I see my (again) new MO next Tuesday, the 14th. I'm used to waiting.
0 -
Faith! My new goal is to live to 79 and still fighting!!! I'm dropping Ibrance down to 100, my ANCs have been low every cycle and my onc finally got tired of all the testing and delay to re-start. Hoping for more energy and hair, we'll see...
0 -
Cure-ious, I am with you! I believe my onc will be dropping me to 100 when we meet next month because I struggle to stay well and my levels are dropping a bit consistently. On a side note, my hair is returning a little even with no change so for me maybe it is time?
0
