Ibrance (Palbociclib)
Comments
-
Hello all. I follow this forum for my sister, who has de novo stage four.
But I'd like to add that I went into menopause within one month; normal period in April of my 41st year, then nothing ever again. Every single perimenopause/menopause symptom then came on within that month, including loss of memory, forgetfulness.
So maybe that side effect is not Ibrance but lack of estrogen. In many of your cases, sudden lack of estogren.
0 -
Hello everyone, I'm on vacation at the beach with half of my family, 2 daughters and 5 granddaughters and SIL 's. There are 2 more families with 5 more grandchildren that couldn't make the trip. So, I'm going to try and keep this short, but I just had to chime in to artist and Carol, about the "old age thread". I really hate to call attention to my age b/c people see and think of you differently and I think and feel and look much younger according to some people.
However, with that being said, I think I could be the CEO, since I will be 76 next week, but don't tell anyone, ! I really admire all the work you women are doing to stay informed and how smart you all are and pray that we will all live for many, many more years. I'm not done with life yet and I'm still learning a lot thanks to all of youFaith (in the future).
0 -
Z. So happy for your great results!
Happy dance time!!!!!!
Babs
0 -
Faith, 70 is the new 50, in case you haven't heard.
0 -
I have the name for our future thread.... Calling all 80-90 year old's on Ibrance!
0 -
Artist, eelder, stephanie - Thanks for these books. The lifestyle and diet changes are proven to help. However, one key thing the books do is mental. They treat me like I am part of this. They give me actions that i can to take to improve my situation. Participation and control is game changing. I occasionally re-read a chapter those books just to get my head back on straight.
The Seattle onc works on the cutting edge of treatment and really do want to get that medical perspective. However, the message was: we decide the course of research, we do the trials and then we look at your medical record and decide the course of your treatment. You are not part of the treatment plan. I will not go back to Seattle onc even though she is the best of the best.
I can almost deal with the cavalier attitude about QOL, but this a dialogue. I hadn't run into this quite so bad with NM oncologists.
Still looking for a second opinion with a major research center that i can work with. Fortunately Ibrance appears to have bought me some time. UCSF is topping the list at the moment.
Artist - I do overdo it. My expectations on how a day will go are pre-treatment. As I have said, I can't get used to being sick. I don't see myself as sick. Partly it is a good thing, but it does lead to some bad trip planning. I haven't figured this out. Only 6 months into this new situation. Did much better today.
Longtermsurvivor - I find that the dietary guidelines for cancer do basically converge. It seems to come down to eat food, not too much, mostly plants. Add a little high quality protein and grain and oil. Andrew Weil sums it up well in an anti-inflammatory food pyramid that never gets old for me.
I overdo the tiny amount of dark chocolate at the tip of the pyramid but as they say, life is short.
>Z<
0 -
My CBC this am- WBC- 2.3 neutro- 1.07- I am to start my new cycle tomorrow. I am on 75mg 2 on 2 off. At the end of my cycle ( I had 3 pills to go) my nutro were 1.26 so with 2 weeks off I am only back to 1.07- Gosh this drug continues to knock my counts down in the off weeks. I had an awful 2 weeks off too. Was extremely tired and achey. I worry I can't stay on this drug.. I will ask my MO what is the next protocol down from this even if there is one! I am getting scanned in 2 weeks.. hope it's working-
Hugs
Carol
0 -
LovesMaltese, I have the same fear you do. I keep having to stop treatment. My WBC's were 2.0, and ANC 1000 last Thursday. Hoping to restart this Thursday. I read that this happens to 73% of people on this treatment. I think this is the most hopeful treatment out there right now, I don't want to have to quit either. Positive thoughts for all of us!
Hugs,
Melanie
0 -
Yes, I spin a lot of fruit and vege's lately! Need to go get a few books though so I can expand my choices. I'm getting in a bit of a rut. Plus I am trying to slowly get my husband out of meat and sugar consumption. Not an easy task!
0 -
Does anyone take a multi vitamin that they are happy with?
0 -
A little post,
I've been on Palbociclib/Letrozole for 15 months, currently on 75mg, 2 weeks on/ 2 weeks off. My ct scans ( recent ct, last week) over time indicate decreasing tumor burden in lungs and I am considered stable. No trace of the original pleural effusion
Tm's also are in sync with scans, 2 tm's are normal and the ca15-3 stealidy decreases, although still above normal range.
In summary, sometimes a little fatigue, but otherwise doing very well.
I am grateful to my wonderful medical team; I am closely monitored and they listen.
Sign me, a happy human.
0 -
LovesMaltese.... I take Pure Encapsulations Nutrient 950 (without copper, iron, iodine). It was given to me by my nutritionist here in the Bay Area (purchased online from www.emersonecologics.com). It's been approved by my oncologist as well. I take 2 capsules, 3x a day.
In addition to this I also take extra zinc, extra buffered vitamin C, a B-complex pill, alpha lipoic acid, and maitake mushroom extract (for extra immune support). During my off-week from ibrance I take this same protocol with the addition of milk thistle 3x/day.
I keep reading about taking CoQ10.... can someone who takes this tell me how much they take? I'm probably going to start taking this too soon....
0 -
Elder- Thank you!
0 -
Some people have asked about my supplementation. This is the core of my supplementation routine. I take it all the time, whether I am on Ibrance or not. The routine is approved by my complementary medical doctor and tolerated by my oncologists.
Integrative Therapeutics multivitamin. I take 1 capsule 3X per day. overall health
curcumin 1000mg 2x per day Anti-cancer
coQ10 200mg 2X per day anti-cancer
Alpha Lipoic Acid 1-2 packets per day. anti-cancer
Methlyate B Vitamin 2 capsules morning and noon. not in the evening. ALA depletes B vitamins. increases energy.
Silymarin/Milk Thistle. 300mg 1x per day. liver function
artemesinin 200mg 1x/day. anti-cancer
loratadine/claratin 10mg per day for Ibrance-caused fatigue
Metformin 500mg 2x per day. anti cancer
Vitamin D 12,000 IU per day.
I drink some mushroom teas and graviola tea.
Long day downhill mountain biking with my brother and nephews and my kids. A lot of fun, but I did not make it to dinner. Lying on couch while they went out.
Max - we love to hear from people doing with great scans 15+ months into treatment. thanks for the update.
Artist - looking forward to getting home so I can eat well like you.
Melanie and Carol - take care we don't want to lose you to some other drug!
>Z<
0 -
Thanks Z for your support, and your list of supplements. I certainly need to increase what I have been taking, after seeing your list!
0 -
Thanks Z for your information. I ordered 4 of the suggested ones you take!! Enjoy your trip1
Hugs
Carol
0 -
Hi all,
WBC are still too low. Delayed another week. Tired of all the travel already. cheers, dee
0 -
Dee, I'm sorry all this travel is time consuming. What were your numbers? White Cell is not what determines it's the neutrophils that determine the start up.
Hugs Carol
0 -
I think it is the neutrophils that are low. They are 1.2 which they said technically they could start again, but because I've only been feeling better 2 days, they felt another week would help with my numbers. cheers, de
0 -
Question-
I just finished my second cycle of IBRANCE and have been going every week for WBC (white blood count) as expected it has been going down every week. Last weeks count was 3.0 however I went today and it's heading back up! Today it was 3.4 and I am just starting my off week of IBRANCE
Is this the norm? I have been reading on here that most head down WBC and then the doctor adjust to lower dosages. I am currently still on 125 with no side effects at all....
Anyone else have same results as me? Like some, I think is this drug working.....
Thanks for any feed back
0 -
Dee, that sounds good. So sorry you have to make extra trips and all that entails, but it sounds like you are getting excellent counsel and care! You certainly don't want to fail the trial due to low counts, so waiting another week in the grand scheme of things sounds wise.
Key, what's most important is your neutrophils (sometimes shown as granulocytes {gran#} or ANC) -- not wbc's as a whole. Do you know how your neutrophils or one of those other readings on your lab print out is trending??? In general, counts tend to bottom out near the end of the 21 day cycle and hopefully rebound in the 7 days off the med. However, there seems to be a wide range of individual responses, and it's good that your WBC's are still nice and strong after 21 days. But let us know if your neutrophils (or one of those other readings) also jumped a bit the last week.
0 -
Dee, I agree with Deanna- Another week off is smart. With that being said, I started my cycle today at 1.07 - I hope I can continue, I feel great as well! I somehow avoided getting walking pneumonia that my granddaughter had. I had some chest congestion only upon waking, and was wiped out for about 10 days, but I made it through it without any fever or concern. I hope I have not spoken too soon! But, I really felt wiped out last week. A nice walk felt great today too.
Hugs Carol
0 -
Carol & Deanna, I'm not able to access my labs as they seem to be a part of the trial, my PCP has requested copies but that has not come through yet, so the only information I have is the 1.2 number & 2 weeks ago it was .67. I will have labs again on Monday & then travel to see my own MO again on Tuesday. I didn't like her replacement today.
key, you have no idea how jealous I am of your high counts...
cheers, dee
0 -
Dee, your numbers are coming up nicely- I hope they continue to do so
Hugs, Carol
0 -
Key2, my ANC has been low all the time except last week when it went up a little, I'm getting the 125mg Ibrance and have little to no side effects, also my PET scan came back with no new growth and healing bones so altogether Ibrance/Faslodex is working. Why fix what's not broken right?
Aurora
0 -
dib823 Thank you so much!
Yes the neutrophils had been going down last week was 1.5 and this week went back up to 1.7 so I guess it is good... :-)
Aurora thank you for the info! I am the same with IBRANCE and my pet scans are same as yours. I agree if it's not broken why fix it. I'm glad I'm not the only one that has had similar results on Ibrance. I often think I should watch what I eat loose weight since I gained 30lbs on this drug but find why change my food just maybe start getting more active.
My next Doctor appt is on August 24 so I'll keep you posted.
0 -
When I was on 125 mg my WBC pretty much stayed at 3.0, good by Ibrance standards, but by the end of the cycle I was still dragging with fatigue and some shortness of breath. Like Deanna suggests I am going to check my ANC/neutrophils instead. Good info, thanks Deanna!
Thanks Z and eelder for the supplement list. I am slowly adding things to my repertoire and it helps to read of several people who concur on certain ones. Added Omega 3 yesterday for the anti-inflammatory effects. Z, I did a 12 mile bike ride yesterday, ending with a giant uphill climb. I was soooo proud of myself but came home and collapsed on the couch for 3 hours! Feel pretty good today except for a few achy muscles.
Dee, I just feel for you having to do all the travel, and by ferry no less. All of this is exhausting enough without adding that. Hope you can resume with the meds next week.
Carol, That is a VERY good thing you have so far avoided the walking pneumonia! I sort of dread returning to school this fall with all of the illness and kids it entails......
Let's all wrap up summer with a bang somehow!
0 -
I am adding Coenzyme Q10 to my protocol. Can someone explain what exactly it does? Thank you!
0 -
Mind-body healing resources, because for some of us, changing our minds comes easier than changing our diets.
The Simonton Method books and resources rocked my world in 1978 https://simontoncenter.com/products.asp?cat=8
Bernie Siegel's Love, Medicine and Cancer - circa 1986 evolutionized the cancer world
Lawrence LeShan's Cancer As a Turning Point: A Handbook for People with Cancer, Their Families, and Health Professionals
Being Well (Even When You're Sick): Mindfulness Practices for People with Cancer and Other Serious Illnesses Here For Now: Living Well With Cancer Through Mindfulness by Elana Rosenbaum. MBSR is offered at most major cancer and medical centers through their integrative medicine programs and clinics.
Dying To Be Me: My Journey from Cancer, to Near Death, to True Healing by Anita Moorjani
Mind Over Medicine: Scientific Proof That You Can Heal Yourself by Lissa Rankin M.D. (take it with a grain of salt!)
Don't forget the ever resourceful Healing Journeys conferences and resources https://www.healingjourneys.org/resources/
Take what you like and leave the rest, but there is a long, rich history of mind-body approaches for healing from cancer and other ailments.
Most will be available through public libraries, so don't break your piggy banks.
0 -
Longterm... you are a gift to us. I know I don't know you, but your posts are inspiring, knowledgeable, and comforting. Thank you.
0
