Ibrance (Palbociclib)
Comments
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dlb823... I will definitely ask my oncologist about the green tea. She wasn't the only one I heard it from. It took me by surprise because I too was drinking a lot of green tea and know it's highly beneficial for us. I will ask.
I now understand about the flax. Makes sense.
dlb823 - how much Vitamin C do you take daily? I've been taking extra Vitamin C too per the recommendation of my dietician.
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FYI, here are a few articles re. the benefits and concerns about tea, including green tea...
http://www.cancer.gov/about-cancer/causes-preventi...
http://www.anticancerbook.com/post/How-much-green-...
http://www.cancercenter.com/discussions/blog/drink...
https://www.mskcc.org/cancer-care/integrative-medi...
There are also a lot of other credible research articles re. the beneficial effect of green tea on specific types of cancer cells, including bladder and mesothelioma, but nothing yet re. a possible concern if used while on a CDK4/6 inhibitor, which I think was the concern expressed by eelder's onc.
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Hi Deana, I know you also see a onc from UCLA and am curious what his/her thoughts are about supplements on Ibrance?
Thanks!
Bonnie
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Thanks Deanna for the articles. Always good to do research and always ask your MO about everything for peace of mind.
Carol0 -
Hi--I've not posted yet on this thread, but I've read through. I've been on Ibrance/Femera combo since May 2015, so I think this is my 16th round of 125mg Ibrance. I'm doing well and have had minimal s/e--mainly nausea/fatigue. This round, however, I seem to have developed a rash on my face, around my mouth. It isn't acne like, more like small blisters. Has anyone else experienced this, and if so, what did you do for it?
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churlMcLicious - I got an annoying rash in cycle 3 and just soldiered through it. I put aquaphor on it mostly because it makes it harder to scratch. Or maybe it makes my scratching less effective. I have no self restraint when it comes to rashes. It's gone now.
I take a number of drugs and supplements and I am always slow to blame the Ibrance, because it could be other stuff. But skin cells are constantly regenerating and fast growing. I do think Ibrance effects my skin.
Overall, my side effects on ibrance are directly proportional to the amount I do not exercise. Stuff builds up in my system when I don't exercise causing all sorts of rashes, thin skin, stinging scalps and stinging fingers. The skin effects got so bad in the fourth cycle that I took an extra week off. During that time off I doubled down on my exercise routine. Into week to of cycle 5 and doing well with no significant side effects. Even sleeping well and high energy.
Congratulations on a long run on Ibrance. Hope to join you ...
>Z<
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Deanna, eelder -
I see an experienced complementary oncologist with many breast cancer patients on Ibrance/Letrozol. He has his breast cancer patients on a protocol that has become pretty standard: High dose C, Curcumin, CoQ10, High Dose Alpha Lipoic Acid, Milk Thistle (Sylibum), Melatonin, Metformin, Fish Oil, Vitamin D, B, Selenium and a good multivitamin. He is big fan Dr. Weil's pyramid which features green tea 2-4 times a day. (I have a starbucks matcha latte made with almond milk and no sweetener by my side as I write.) He gets remarkable results.
My regular oncologist found no conflicts between these supplements and the Ibrance/Letrozol routine.
I throw some flax in my oatmeal occasionally as well. My estrogen levels are monitored routinely and they have remained at zero on this regime.
You will find that many people in this forum are taking these supplements and/or others.
I do get a little concerned watching people take the supplements without medical supervision. There are issues. At a minimum there are some regular blood tests you need to have. Most oncologists aren't trained in complementary treatments. The wise ones just won't discuss them. The stupid ones are dismissive and/or confrontational. I would neither dismiss nor embrace complementary treatments until you have an expert on your team. Your regular oncologist is probably not an expert.
>Z<
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Fair enough, dlb. I will ask the specialist for her sources on CYP 3A4 and the foods i mentioned.
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churlMclicious,
I have a patchy rash on two areas of my face for the past two cycles. It looked like it was going away a few days ago but it seems to have worsened again. I wouldn't characterize them as blisters (maybe they are tiny blisters) but they aren't really pimples either. One of the areas affected is a red patch with little bumps. It is around my left nasolabial fold. It is tad itchy at times but not bad. The other area around the right side of my mouth and chin is made up of little bumps that are reddish. Those don't itch at all. I've been using Neosporin at night and that seems to help, I think. My MO says it is one of the known SEs of Ibrance. I'm just finishing my 6th cycle of Ibrance/Letrozole. I'm hoping they'll go away like the other SEs I've had.
Not sure this was helpful but thought I'd report it.
Cathy
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Zar- how do they monitor estrogen levels?
Carol
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Very happy to report that after 14 cycles of Ibrance/Femara/Xgeva, my pet/ct scan shows no abnormal uptake and all bony lesions are healed/inactive!
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Hooray, Lynnwood! So glad to hear your fantastic news!
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Lynwood-thats great news! Happy Dance time!
Babs
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Wonderful news Lynwood!!
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Great news Lynnwood! Yay!!
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Lynnwood, that is wonderful news to hear. Does this mean you are NED? If so, has your MO discussed the possilbllity of stopping the Ibrance and just continuing with the Femara and watching things? My MO has discussed this possibility and said I could always go back to the Ibrance if we see progression again. This probably sounds like heresy to most of you here but this drug is so new, they really don't know the right protocol for everyone. There were only so many variations they could test.
For instance, we are planning a vacation to the beach that requires two days of driving to get there. I am scheduled to stop the Ibrance the day before we leave and I asked if I could stop a day early so I could start to get some energy back. He was fine with that and also with delaying the start of my next round for a few days until we get home. I have just finished rd. 5 and I took a few days break at the start for a trip to our granddaughters graduation. I seemed to feel much better on this round and my WBC were up, so I believe taking a break is good for our bodies is some cases.0 -
Faith, I do not believe that I will be stopping Ibrance. My onc called to tell me the good news yesterday and said that we will keep doing what we are doing since it's working. Will have a longer discussion when I see her on the 28th. At this point, I don't want to stop Ibrance, I am feeling well, working full time, and only have some fatigue as a side effect.
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Lynwood congrats on Ibrance working for you! I've been "lurking" on this thread for a few days and didn't post because I'm too doing well on Ibrance/Faslodex and I didn't want to make anyone uncomfortable by sharing my status.
I hope there are more of us "good responders" around.
Aurora
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Lynnwood and Aurora, wonderful news! So happy to hear you are doing so well!
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My onc told me that even if I got to NED I would still continue on ibrance/letrozole until my body showed resistance or if symptoms were so bad we had to make a change.
Also, how does one test for estrogen levels?
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Carol et al -
To measure estrogen levels, get your estradiol tested. Very simple. Very cheap. If you are on hormone therapy (letrozol et al) you are almost certainly having it done. However, since they call estrogen estradiol (?!?) you may not know it. Look at your past tests.
I had some concerns that the complementary meds I am on would interfere with the letrozol. But the point of letrozol is to eliminate estrogen from you body. We've tested my estradiol levels multiple times and I am estrogen free. So the complementary protocol is not effecting letrozol.
Shetland Pony et al.
CYP3A4 is an enzyme that breaks down (metabolizes) Palbociclib. CYP3A4 is not found in foods; however, there are compounds in both foods and many drugs that can either inhibit or induce CYP3A4. Those drugs and foods may increase or decrease, respectively, the amount of Pablociclb in your blood. Grapefruit is know to be a strong CYP3A4 inhibitor and, if it does that, it will increase the levels of palbociclib in your bloodstream. You get a higher dose of Ibrance than you may be able to tolerate and get side effects you cant deal with.
The problem with all these studies is that the pharmacology going on in your body is ultimately so specific. The studies only raise questions but provide no answers for you. If you like to experiment, have some grapefruit juice or whatever you crave while you take Ibrance and watch your side effects. If you break out in a rash or your fatigue increases, back off the grapefruit juice and see what happens.
After 5 cycles I am absolutely certain that regular exercise is critical to getting Ibrance and its metabolites through my system. The increase in side effects when I don't exercise is obvious. So you may be able to get away with a glass of grapefruit juice or two as long as you keep moving. In general it seems that doctors like people on the highest does of Ibrance they can tolerate, so if grapefruit juice is increasing the Ibrance in your system and you can tolerate, that may not be a problem.
It doesn't look like they know whether pomegranate juice inhibits CYP3A4. It would be a shame to give up something so tasty and good for you over sketchy evidence. It seems more sensible to have some and watch you you respond.
And there is no reason at all to worry about CYPA3A4 inhibitors or inducers on your week off.
>Z<
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Hello Ladies, I also do a lot of lurking on these threads and I am so thankful for all of you sharing your situations.
I will share my great results of my last pet scan.. to give hope to everyone on Ibrance. All my lung mets ( and I have numerous) are disappearing or shrinking. The is very little SUV uptake.
Before the Ibrance, I failed my first treatment (Arimidex) after 9 months. I was so upset thinking..nothing is going to work for me. I am on Faslodex, Letrozole, and Ibrance.... and after 3 months... the pet scan showed great results. I am now on my 6th cycle, and pray that this combo will work for me and everyone of you for a very long time.
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Aurora and others, please don't ever hesitate to share your good news about your results on Ibrance, I think it gives everyone hope that it will work for them also, especially the newbies. I am also having a good response and I shouldn't look a gift horse in the mouth but I feel like my life is sometimes revolving around the 21 day cycle of Ibrance. It's getting easier to deal with so I should just be grateful it's working and stop looking for a way out.
Z, I agree that exercise seems to lessen the side effects, even just walking outside in the sunshine improves everything.
Concerning the grapefruit juice and pomegranate, I just received my next dose of meds and the enclosure that came with the Ibrance says and I quote "Avoid grapefruit and grapefruit juice. Avoid pomegranate, Seville oranges, and star fruit." Since I am usually a rule follower, I'm not going to mess around with these meds and those few foods. It's not worth it to me. Why mess with success?
Faith ( in the future)
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Well I just took number 21 of my first bottle of ibrance. I thought I was supposed to have a blood test at 14 days but I'm not having one until next Tues. I'm curious too see them because I am still feeling really good. I feel better than I have in a few years, which is really weird because ever since I started mets 4 years ago I have been tired and not motivated. I have been on a housecleaning roll for two weeks. I'm hoping that means it's working because I don't want something that makes me feel tired again!
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HLB - Yay! Get that house clean!
rpoole1962 - Go Girl! Shrink those tumors.
We do want to hear the good news. Over and over.
I have had ups and downs with the side effects depending on how much I exercise and what supplements I take (I am not a rule follower). But so far I had a good response. Right now I am in the middle of cycle 5, I've been exercising daily and I feel pretty good. I've been doing manual lymphatic drainage and I think that's been helping move the toxins and metabolites along and ... out.
My husband wants to run a 5K with me on July 4th. Given the way I felt three weeks ago at the end of cycle 4, I thought there was no chance. But now I am thinking maybe ... I will try to add a little jog to my walk tomorrow and see how things stand.
Taking things as they come ...
>Z<
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zarovka... can you tell me more about lymphatic drainage? I've heard about this and would love to learn more.
I love all the positive success stories!!!!
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Usually they do manual lymphatic drainage after cancer has been removed from the breast and the lymph nodes by surgery. The idea is that the surgery screwed up plumbing of the lymphatic system and someone needs to get in there and manually move the lymph around. With the plumbing system broken by surgery, the lymph starts pooling up rather them moving along and doing its job.
In my case I have active cancer. I have not had surgery. My lymph nodes are intact but partly disabled by cancer. This has not been the normal scenario for manual lymphatic drainage. Many practitioners are concerned that the therapy will move the cancer around. Also, my lymph nodes are not completely disfunctional so the lymphedemia (build up of lymph fluid where it should not be) is not extreme.
However, I have chronic burning and inflammation in the area where my tumor is in my breast and armpit. I have had this burning and inflammation even as the tumors have shrunk, so it's not the cancer advancing. My theory is that my body is trying to get in there and heal and the plumbing is a bit stopped up. I tried to convince several people who do lymphatic drainage to help me but they would not.
I almost gave up, but I did mention it to my new oncologist last month. She said the current thinking is that lymphatic drainage is a good idea and this is the right time. I am responding well to the treatment I am on ... they believe that manual lymphatic drainage is safe as long as the cancer is retreating. She gave me a referral to the physical therapy group at the medical center and they have a manual lymphatic drainage specialist. I'll get between 18 and 30 sessions this year, depending on how it goes. Covered by insurance. The practitioner is training me to do it myself daily and I've started the regime
They found that my left arm was in fact bloated with lymphatic fluid. I have had 5 sessions and its almost normal. We'll keep going just to maintain the proper flow of lymphatic fluid in the area of my cancer. It is critical to healing and I believe it is reducing side effects. We have get the metabolites of all the stuff we are taking moving along and out of the body.
>Z<
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Zar- do you wear a compression sleeve?
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Thank you for your previous answers and help.!
It's been a rough night. Yesterday we got back the Pet/CT and Brain Mri for Dani. She has had Mets to the bones but yesterday the results came back, according to this Radiologist there is one spot in the liver 1.5cm, also the mesenteric thingy that has been growing on the left side of the abdomen, is getting bigger every time we do the scans. Some lesions on the skull got a few mms bigger. And the whole skeleton is still acting up, but not really getting bigger just not really smaller. So they call that part stable, so he thinks some of the stuff she is taking is working. Hmmm hard to think.
Ladies, I will be speaking to doc in the morning, If you see this, what's your opinion on "one small lesion", does it make a difference if it's small, or once it invaded the liver it's a different "monster". Doc told me last nt, oh, it's so small, maybe they will just radiate it. But should a biopsy be done? I really don't know how I am going to tell her, she deals with what she has to, but she was so hopeful. She does not want the details. In her everyday life she is a force to reckon with, but this is just too hard (that's where I come in, she relies on me, looking out for her, doing research and getting her to a good place).
The last PET/CT was done only 8 wks ago, so it was not there before?
The lesions on the skull, were supposedly stable after some Gammaknife, but now it started growing again. Yes, not by much, but growing. He is considering Proton therapy for this. (to some of them)
She is now on Ibrance/Letrozole, Tykerb/Herceptin. ER+PR+(less than 1%), and HER2+ (FISH +++) Her status of HER2 changed from the original HER2- to HER2+ on biopsy a year ago. Could it have changed again??
Maybe he is thinking of adding Immunotherapy to it.
She has been on everything already, besides some very new ones. WHAT is going on?? She will be devastated, I really don't know how to tell her.
I am substituting in a Kindergarten, my time very limited. When I get home in the late PM, i can't think. I really think all this has affected my brain, seriously. I cannot remember the simplest things. Also dealing, with close checkups for other daughter with "suspicious" stuff, (which we found since she started going for baseline, INSANE). I really want to take some time off to go thru all the threads, and be in touch and learn. I must. Maybe in the weekend.
Open for suggestions! Take care everyone, Rosev , i saw quickly that you really decided to go for something else, best wishes for you.
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Rpoole-thanks for sharing your great results-it does give hope to others!!!! Happy Dance time for you!!
Babs
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