Ibrance (Palbociclib)
Comments
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eelder, my thanks also for info on toeless socks. I've never heard of them either. I do have custom inserts and wear them almost all the time, never go barefoot or wear flip flops but I get lazy about the icing and stretching. Sometimes, you don't want to do one more thing, even when you know it's good for you.
I also drink coffee in the morning. It is also the best part of my day. It really helps get me moving. It's mostly half reg and decaf and once in awhile I'll have a second cup but that seems to give me heartburn if I'm taking it too close to the Ibrance.
What is normal? Is there such a thing anymore? LOL!
Faith (in the future)
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I drink one mug of coffee a day, with coconut milk. I had to stop using a French press (way too much acid for me - all my allergies were acting up), and switch to a Melita cone. The paper filter soaks some of the acid, and helps keep the allergies at bay.
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Thank you all for the foot pain discussion. Eelder, you are the expert on plantar fasciitis. Impressive.
I read that plantar fasciitis typically causes a stabbing pain in the bottom of your foot near the heel. I'll have to pay attention tomorrow morning, but what I recall is the whole foot and if anything more towards the ball of the foot. It feels like it is in the little joints of the foot. Funny how it goes away completely after 5-10 minutes of hobbling around. In that respect it is similar to plantar fasciitis. I only feel it in the morning . I need to think about this some more ...
And thank you for not taking away my coffee!
On day 3 of Ibrance cycle 8 and, except for creaky feet in the morning, I feel better than I have in weeks. Completely off antibiotics and pain killers from the extraction. Hoping things have turned a corner and I only have cancer to deal with ...
My skin is getting massively wrinkled. Tons of time wrinkles along my arms, at my wrists etc. Part of the issue, I am sure, is that I developed an allergy to sunscreen along with the cancer and so, while I continue to get outside a lot, I have to just let myself fry like bacon out there. The other part is the zero estrogen regime from the hormone suppression. A minor thing, but it struck me that you all might have some ideas.
>Z<
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Z, I'm sure it's very hot in NM but wearing a long sleeve shirt with an spf in it and a wide brim hat although that's not easy to run or bike in, might be a good idea. Moisturize, moisturize, a lot. I use a lotion I love with olive oil in it that I think really helps. Although being Italian, might make me a little biased. :-) Actually a lot of women in Italy just use olive oil all over their hands, arms and faces. I also believe eating a salad everyday with just vinegar and olive oil helps keep your skin hydrated. I know we are not supposed to have too much fat in our diets but we need to have some and olive oil is my choice. I'm really not being vain here when I say no one believes I'm as old as I am. Having good genes helps but so does olive oil inside and out.
I just took the last Ibrance of rd. #8 today. This round started off kinda rough for me and I'm wondering if it's bc I took an extra week off for vacation and my body had to get used to it again. I'm not feeling as much fatigue as I did in the early rounds and wonder if that's the Claritin. But, my gum is still sore from the root canal that was finished last week and I've got some mouth sores again. Hair thinning continues, ugh!
Wishing everyone a peaceful pain free night and pain free feet in the morning.
Faith (in the future )
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Hi, I'm mostly a lurker, but always read the posts on this thread. I'm on my 8th cycle of Ibrance/Femara and tomorrow I'm scheduled for a PET/CT scan. My last scan was in May which showed I was stable, but my onc didn't seem too happy with that. I won't get the results of tomorrow's scan until I see him next Tues. and I'm afraid that he'll want me to change treatments. I don't want to go on any harsh chemos, so I'm uncertain which treatment would be next if he advises it. I would like to stay on Ibrance even if I'm just stable, so can I choose to do that even if he recommends something else? Of course, I'm jumping the gun here since I don't know if Ibrance working for me. Any advice?
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DC 197, I really am not an expert on Ibrance at all, but I have read here that it can take many months before it starts to work. If your body and blood and liver are tolerating the drug then there may not be a reason to change yet. I think for me, I would seek a second opinion before changing treatments.
You might want to look at the bone mets forum as I see that's where your mets are. I believe there are ways to treat you that don't involve harsh chemo. But, again, I'm no expert but I'd like to just tell you there is reason to hope. I'll pray that your scan results are good this time.
Faith (in the future
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DC197 - hmmm not sure what to say since stable is what we want. NED is wonderful but not necessarily attainable for everyone. Stable should be enough to continue with the protocol. Did your ONC give you any explanation as to why he/she wasn't pleased with stable? Are your TMs up? Even if they are that wouldn't be enough to change treatment. Is there anything else in your blood work or SEs that indicates this treatment isn't good for you. I just finished cycle 8 also and am heading in for my bone scan and ct scans this coming Friday. I won't get my results until next Wednesday. My last scans were stable and my ONC is thrilled with my response.
Keep us posted and try not to worry. Ask lots of questions of your ONC!
Hugs!
Cathy
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DC197, you can absolutely ask to stay on a tx against your onc's recommendation. Afterall, it's your body, and no one can make you take a drug. However, IMO, the wiser thing to do would be to find an onc in whom you have complete trust -- one who specializes in mbc and is truly up on Ibrance and everything else related to our situations, and with whom you have a great rapport and who can thoroughly explain the reasoning for his or her tx recommendations to you. Not sure why your current onc wasn't happy with a stable scan a few months ago, but he should be able to explain and back up with research stats whenever he feels a change is indicated. Depending on how extensive your mets are, and unless something else was going on, a stable scan is usually a reason for celebration. JMO...
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Hi everyone,
I'm on cycle #3 of Ibrance, and wondered if anyone else is experiencing GI issues with it? I've been following the no raw foods diet pretty closely and eat minimal salad/fruit during the day and no probiotics (which I used to take regularly)...mostly cooked meals. I take a greens powder daily that I'm hoping helps with veggie nutrition!
This past month, I've seen some bright red blood with my bowel movements, which my oncologist said is a hemorrhoid that can be treated topically. But over the past few days, I've had increased diarrhea and gas, which is really unusual for me...my instinct is that my body is out of balance because of my neutropenic diet.
How do you take care of your tummy on Ibrance? Does anyone take probiotics (which I swore by before, but I've been recommended not to take by my onc b/c of the live bacteria they contain)? How closely do you follow the no raw foods protocol?
Thanks!
Anantha
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aks, I was never told to avoid raw foods, and I would be miserable if I had to. I've also never heard about avoiding probiotics. Not sure where you got the latter suggestion (I know the first one is a common belief), but most of the women in an Ibrance FB group I'm in use a probiotic, as well as some type of OTC product for gas. And yes, I find I have some rectal bleeding towards the end of each cycle when my red counts are low. It can be very alarming, but after a year on Ibrance, I've realized it's due to low rbcs, and it goes away as my counts rebound.
I've recently discovered a natural probiotic sauerkraut that I absolutely love. It works much better for me than a probiotic supplement ever did. The one I've been buying is by Sonoma Brinery -- found in the refrigerated section of places like Whole Foods. That exact one may not be available everywhere, but equally fresh ones from regional sources in your area should be.
I'm really glad you brought up this topic. I would like to know where the no raw foods advice originated, as it was never mentioned to me @ UCLA, and so far I haven't had any problems, although I am extra careful about washing greens and toss anything that looks even vaguely suspiscious for harboring bacteria. I also try to buy organic as much as possible, which does tend to spoil faster, so I do throw out quite a bit of wilted salad greens, etc., just to be safe. Deanna
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hi, Anantha.
I can't find the link, but some years ago, a female researcher developed a simple solution for removing bacteria from produce. It's just vinegar and hydrogen peroxide. There was some science-y stuff about what percentage of germs lived after being sprayed with it (almost none). Anyway, here are some simple produce washes. http://www.rodalesorganiclife.com/food/veggie-wash
I take a probiotics capsule, and occasional fiber supplement. I remember from this thread that some women had gastric distress when taking their Ibrance with dairy. Could be a coincidence, and I might need more time to develop the expected side effects, but fwiw I don't consume dairy and this first month on Ibrance I have not had digestive problems.
I'm thinking the "no raw foods" advice is for people with a history of IBS, and not a cancer thing? Or was it advice you got while on chemo? Because this is the first time I've heard of it.
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Thanks so much for these replies. I was hospitalized after my first cycle of Ibrance when I developed a neutropenic fever, so that might be why I've been instructed to be extra careful, especially when eating out, about having anything raw.
At home, I do have some raw foods, but have changed my diet quite a bit...so it's really helpful to hear that continuing probiotics and fermented foods is still possible! And the veggie wash sounds great--I'll try it out at home so I can continue to eat salads (which I've missed the most!)
Anantha
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Hi Deanna and Anantha,
I am also curious why a probiotic would not be recommended for users of Ibrance. I take a probiotic, Align, which has biffidobacterium, because it can stimulate the immune system to an extent similar to immunotherapy, and in mice studies is synergistic with anti-PDL1 immunotherapy..
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DC197 - Stable mets in a CT can be a good thing or they can be quite awesome. Never are they a bad thing. Cancer cells will go dormant on drugs like Ibrance: this means they are still there but they aren't replicating. That's what Ibrance does when it is WORKING. It stops cell replication. Cancer can also form a kind of mineral deposit after it dies which continues to show up in scans and is indistinguishable from cancer by CT.
In addition, CT is not that accurate. There is a surprising amount of variability when you do a CT on the same person twice in the same day. So even if you see a 10-25% increase in size, many doctors are slow to call it progression because that kind of variability can be an artifact of the scanner. We don't have that many good treatment options, so switching too soon is really a bad idea.
Finally Ibrance takes on average 4 months to start working. It can take up to a year.
If your doctor doesn't seem to get these things, switch to a doctor with a lot of patients on Ibrance. I had a great doctor early on that just did not know much about Ibrance. Many do not.
Anantha - You may be dealing with some secondary issue that I don't have. But raw vegetables and probiotics are the core of the ant-cancer protocol. I try to get as much as I can.
>Z<
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Thanks Faith, Animal Crackers, dlb, and Zarovka for your replies. Perhaps I'm just reading my onc wrong because he didn't actually say he was disappointed in the last scan, it was just the way he said, "Well, there have been no changes in the cancer, but we'll keep you on Ibrance for now and see what happens the next time." I'm not used to the way he expresses himself since I had a wonderful onc previously who I could discuss things with more easily, but she retired. They don't use tumor markers at my cancer center, so I don't know if there would be some indication of how things are going.
Well, anyway, I went for my PET/CT today and came home without having the test. They sent me to the hospital this time, and after having drank a bottle of water with contrast, they called me into the testing room. I already had the IV in, and as I laid down on the table, I asked, "Where is the other part of the machine?" The tech said that I was only getting a CT, and I told her that my paperwork said PET/CT. They called my oncs office and came back and said I was right, but that they do not do PET scans there. Someone at the onc's office had screwed up, so the whole thing has to be rescheduled. What a waste of time! Plus, I had already paid the $60 co-pay which I intend the get back.
Diane
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Diane - Hang in there. Cancer is confusing enough without changing docs and figuring out how they communicate. The periodic scans are bad enough without all this additional drama. I hope you have awesome scans. We are all very interested in hearing how this goes. Let us know.
>Z<
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I just resumed catching up on this thread, and saw the sad news that Hope passed away. Sigh. I will continue to think of her and her fierce love for her family whenever I see her photo at the top of this thread.
Carol/Maltese, I'm so glad to hear that your first faslodex dose was easy. Enjoy being off Ibrance! My onc says faslodex has relatively few side effects. She also said what your onc said about not enough evidence to support adding Ibrance to the faslodex. So, have I got this right: You are getting tested for the PI3K mutation, which takes four months, and if the test is positive you will join the trial and add a drug to faslodex? You are allowed to be just on faslodex for a while before joining the trial? Is this the Sandpiper trail where it could be the drug or a placebo? Did your onc elaborate on the SE of the trial drug?
Zarovka, Faith, Angela--Yes, my feet hurt when I get up in the morning and feel better after hobbling around for a few minutes. (It is not plantar fasciitis in my case.) Also, when I wake up, my hands are stiff and sore, and I can't make a fist. But they are much better after I do my routine of spelling out the manual alphabet (used by people who sign) a couple times.
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anantha, I've been on Ibrance for over a year and have had GI issues the entire time. I mostly fixed the gas issue by cutting out dairy... Difficult to do but entirely necessary. I'm now totally intolerant. I often have reflux, for which I retake Pepcid AC. But mostly it's diarrhea. An entire year of diarrhea. My ONC recently suggested I see a GI specialist, as something else may be at play besides the Ibrance, but ever since his suggestion.. About two weeks ago, I weirdly have not had any diarrhea ... Go figure.
Stefanie
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Diane, I feel your frustration about communicating with your new onc. My onc of 8 years just retired and I have had 2 visits with my " new" onc. First visit was awkward, she asked a lot of questions about my treatment choices. I told her in the course of our conversation that I hoped that she realized that I am literally putting my life in the hands of someone that I don't know. She seemed to understand and said this. Yesterday was 2nd visit. I said now that you know a little about me I want to know what you would say to me if I came to you as a newly diagnosed patient, what is your philosophy on MBC, it's treatments, and your plan for my care going forward. She looked at me like I had 2 heads. She said she didn't quite understand what I meant. WTF?? She did manage to point out that I am incurable and my cancer lol progresses, like I didn't know that. I told her that my other onc said that she felt we could knock the Cancer back for quite a while and her response wasn " is that what she told you?" I haven't felt so defeated in a long time. I will add that I am currently NED. I will give her one more visit then I am out of there. I realize that it takes awhile to build trust and establish a new relationship with a new doctor but I am not sure how long to given it.
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Wow, Lynnwood. Just based on your post, my impression is of a young, newly credentialed oncologist who is full of her knowledge, but with an undeveloped sense of how to relate to patients. Not a naturally warm person, without having had the time it takes to develop wisdom and interpersonal skill, and feeling a bit defensive trying to replace an older oncologist that patients loved. I think her comments are more about her than about you and your case. While it could be that things will improve after another visit, I'm not sure this is just a matter of needing time to build trust. Look how defeated she made you feel. Not ok. Have you ever kept watching a bad movie, hoping it would get better?
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Lynnwood, Communication is of utmost importance when dealing MBC, and when you just don't "click" with a doctor, it makes you feel like you're alone in this fight. My previous onc was a woman, and I don't know if that played a part in my feeling comfortable with her, but when she looked at me, I could feel like she completely understood me. My current onc is a male who has years of experience, and great credentials, but I still don't feel like we're in sync. I think because the Ibrance is fairly new and he doesn't know enough about it, that may be part of the problem.
Changing doctors is not something I wish to do because it wouldn't guarantee another doctor would be any better. I'm hoping that as time goes by, we'll find it easier to understand each other.
Diane
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Shetland, she is very young and looks about 16. That's what kept running through my mind the whole time she was talking to me. My other onc was my age, 56. She is very nice, went over all of my blood work step by step and called me to tell me my tumor markers were good. I guess I just expected her to give me her insight into all of this, and didn't like that she was so surprised when I pressed her on this. I get the movie analogy completely, and you are so right. Don't like coming out of the office upset
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Lynnwood - Wow, I would think that because you continue to have a fantastic response on Ibrance, that onc would just say carry on! Yes, we need reality, but encouragement as well, and you have ALREADY DEMONSTRATED that what your original onc said was true -- mets are being knocked back well!
Diane - Hope things improve with your onc as well.
For those with hand/feet issues. When I was early stage several years back and took an aromatase inhibitor only (arimidex, similar to letrozole/Femara), my feet and hands were very stiff every morning until I started moving fingers and walking a bit. That did last the duration of my five years on the drug. I had been pre-menopausal prior to treatment.
Have now been post-menopausal for several years due to oopherectomy. After mets dx, I'm now back on aromatase inhibitor (letrozole), and I expected to have that symptom again...,But fortunately have had nothing comparable to my earlier experience. Not sure if the pre vs.post menopause has anything to do with severity of symptoms and adjusting to lack of estrogen. But hoping things improve for all of you as time goes on.
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Lynnwood - OK, the age/experience explains that. Hmm, is there a more experienced alternative for you to choose from in the practice? I agree there is nothing like coming out of a doctor's office feeling better than when you went in. You are having a fantastic response. That's the thing to keep utmost in your mind today
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Lynwood, ohmygosh, unless she brings something to the table you haven't shared, I would NEVER give an onc with that kind of attitude another chance. Younger oncs can be great, but It sounds like she lacks the positive attitude and confidence we all deserve from our docs, and that can be totally poisonous to our mental and emotional health. Her response to your question clearly indicates a lack of hope or even enthusiasm for treating you, and I don't think you're the least bit comfortable with it either. Follow your gut instinct and run to someone who will be a true cheerleader for you.
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Lynwood,
I don't post often, but I just had to let you know how furious I am about your horrible experience with the young oncologist. The number of responses that you've quickly received just shows how everyone on this thread has all of our backs. If you do decide to see her again, do you think you'd be comfortable telling her exactly how she made you feel? If so, it would give you a sense of closure, and might just make her reconsider the manner in which she communicates with patients.
No one deserves to be treated as badly as you were, but certainly not one of our Stage IV sisters. I keep fantasizing her having to face a forum composed of everyone on this thread - similar to the one on the Intrepid last night!
Angela
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Angela, thanks for your support! I told her point blank that I am very uncomfortable turning over my care to someone I don't know because I am literally putting my life in the hands of a stranger. She said she certainly understood that but I'm not sure she does. I am used to positivity from my old onc. I know that I am guarded around new doctors, don't quite trust right away. Being a nurse I have worked with many doctors and seen both good and bad. This onc comes highly recommended as not only knowledgeable but compassionate which confuses me. I am taking my husband with me next time to get his take on this but I really think I'm done.
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Sorry you're having a communication gap with your MO, Lynnwood. I agree with the others that this is concerning. I might give the new MO a few chances to improve the "caring" part of my medical care, if I were in the same situation. But if I still felt iffy after another office visit or two, then I would look around me for a better fit.
When I was diagnosed almost two years ago, I switched MO's because the one I first saw seemed burnt out and exhausted. I thought about telling him to go home and get some rest. The new onc was warm, personal and optimistic. I liked him so much better, and he was so much easier to talk to.
Earlier in my cancer career I had a primary care physician I did not feel comfortable with. I believe that our uneasy relationship contributed to my late diagnosis. I'm not blaming her, but I think the insurance industry has regulated medical professionals to the point where they have six or seven minutes to address an issue and they can only discuss one issue per visit, and they never ask what happened with the problem you brought up last time they saw you. So I delayed my mammogram (and that is my fault), and I had a hormonal IUD placed, while it was on record that I had an unidentified lump in my breast. Seven months later, when I got the IUD removed, the lump in my breast was so big I couldn't ignore it anymore. It then took another two months to get all the diagnostic tests and start treatment.
Better communication could have made such a difference in my case.
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Lynnwood, I agree so much with everyone and especially Deanna about how you should not have to spend another day listening to someone who was so callous in her delivery. We deal with enough emotional issues without her shooting you down to the ground.
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No one has time for a negative doctor, especially an oncologist. I met with mine yesterday and we actually discussed the need to have a positive attitude when fighting cancer. Both my oncologist and radiation doctor said there's research out there now that PROVES a positive attitude and fighting spirit makes a difference in one's prognosis. No, it doesn't cure us (wouldn't that be nice), but it's an important piece to our treatment. If my doctors are saying the PATIENT needs to be positive and hopeful, then I certainly expect the doctors to model this. This is an incredibly challenging and emotionally-draining experience. Our doctors should offer us hope and support, not make us feel hopeless and upset. If I were you I'd look for someone else NOW. You need to be connected to this person.... we see them too often! I'm so sorry that happened to you. There are better out there. Sending you hugs.
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