Ibrance (Palbociclib)
Comments
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Thanks jaycee49. Thought that was the abbreviation ANC. Mine have been in the normal range but I have been watching that since so many are concerned and wanted to sure that's what we are talking about.
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A report in Nature has come out showing that resistance to endocrine therapy involves up-regulation of proteins that pull the amino acid leucine out of our diet. Our cells don't make leucine, we get it from (mostly) animal proteins. So one possibility to try to stave off progression from I-F would be to go to a plant-based low animal protein diet- they are also looking for inhibitors of the leucine importer protein..
https://hms.harvard.edu/news/fuel-drug-resistance
https://nutritionfacts.org/2015/06/16/living-longe...
https://www.sciencedaily.com/releases/2011/05/1105...
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Hi Candy - I see my MO every 3 months and right now it feels just right, for me anyway. We do blood work every 3 weeks because that’s how often I go in to get herceptin - so we see my whites at various points of the 28 day Ibrance cycle, not necessarily just prior to my next dose starting. However, I have never had blood work that is ‘too low’ or we would likely do it on a schedule associated with my ibrance. I have decided not to do tumor markers with my blood work, unless things change, because they are not high but they fluctuate and it stresses me out. He said less stress is better than more tumor markers. I am currently NED.
We are scanning every 6 months right now but he said if I want to go 9 months, that’s fine too. Obviously symptoms would precipitate a change to all of this.
Just giving you comparison points. If you are not comfortable with the new schedule, by all means say so. My bias is more treatment and less surveillance. Treatment makes me feel like I’m doing something worthwhile; while surveillance justbrings stress.
Love to all,
Lauren
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I had bloodwork two weeks ago, and the care coordinator was unable to schedule my scan and next appointment because the computer system was down. So I gave her my dates (blood work is always on Day 15, so I told her the specific Tuesday in July for follow up with MD, with the PET scan to be done the Wednesday prior). Yesterday, I got a notice that they had scheduled my appointments - the scan in July, and bloodwork and followup visit in October! So I called the coordinator to tell her of the error, and she said, "no, that's what Dr. wrote in your chart - she doesn't need to see you or do the labs until October." I told her to please let the Dr know I was uncomfortable with waiting three months for the scan results, and six months between blood draws worries me... she called back ten minutes later - she had misread the notes. The October appointments were in addition to the July ones, not instead of. Onc is going away in October, so wanted to be sure my date was blocked out...
Long-winded way of saying, we scan every six months, do bloodwork and Onc visit every three. I was up to five months - from the Nov to Apr blood draw (insurance wouldn't pay for labs at my January appointment because they had just been done two months before, and we had no medical reason for requesting them) - but I was freaking out long before April, every little ache convinced me I had progressed! So we're back to every three months.
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Thanks all for the good discussion about follow ups with onc and blood work. I did wonder about the insurance issue since EVERYTHING is driven by money. I looked at my Explanation of Benefits paper I get from the insurance. It shows the amount billed from office visit, what insurance paid, and my co-pay. The office is getting paid. Unless the insurance is having a conversation with the MO I am not aware of, I don't think the payment is the issue. My thoughts are that the MO thinks I am stable and she is trying to do good for me to lessen the visits. But for me, that causes MORE stress. It makes me feel like I am doing something to touch base more often. And it makes me feel that I am hopeless, terminal, if she doesn't want to see me (like there is really nothing for her to do for me). Also, our illness is serious. Yes, we continue on with our lives, but we are on some heavy-duty meds and our bodies are going through a lot with the cancer creeping around and the meds fighting it. I think the docs should lay eyes on us more often than the regular population. And I don't feel I can trust myself to just let the MO know of symptoms. I didn't have any symptoms and the cancer was growing like crazy before I was diagnosed- 8 cm lesion in liver. I thought everything was ok.
Jaycee-- I thought about the timing also. If we do every 8 weeks, then that would throw off the visit every 3 months after the CT to discuss those results. If we do every 6 weeks then the next visit (June) would be a 'touch base' visit and 6 weeks after that would be after the next CT to discuss that. I did pause when the doc recommended next visit with bloodwork in 6 weeks vs 4. And I reminded her of the off-week blood test, but I didn't want to make the office visit change a big deal so I didn't balk about that.
I am ok with changing the visits to every 6 weeks, but I don't want to go longer. And I still want blood work, including TM's, every month. Maybe if I continue to be stable and I am more time out from diagnosis, I will change my views and will go longer between visits. Like I said, the visits are not a big deal to go to--I schedule on my day off work so as not to interfere with the job, I live in the same town as the office so there is not travel time, and the visit is short so I can do other things on my day off, not just go to the doctor.
I think each person is different and that is fine. We should do what feels right for ourselves.
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Is anyone dealing with anemia? Leslie's values are slightly off but was wondering if your oncs gave you any suggestion. I have read anemia could be related to lack of vitamin B12 and folic acid, both of which have been linked to cancer growth.
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Candy, the thing that really jumped out at me in your last post is "the visit is short." My MO visits are never less than two hours, usually more. I won't go into my whole upstairs/downstairs saga again but it always seems like a marathon. That is an advantage that being at a smaller center has. I envy you that. And I guess the six weeks thing makes sense with the every three month scans. Fits nicely together. I just feel like the every four week visits are kind of a waste unless I have had a scan. My husband always asks when I walk in the door, "So? What did she say?" I say, "um, about what?"
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I totally understand the way you are feeling. I'm currently on Ibrance 75mg 2 weeks on and then two weeks off, Xgeva every 3 months, and the monthly shots of fulvestrant (faslodex). I am 65 years old; 19 years out from my initial diagnosis of bilateral breast cancer hormone positive in 2001 right before 9/11, then in 2011 metastasis to bone (ribs, right ileum, vertebrae). Just earlier this year, 8 years later, my scan showed metastasis to lung. I'm having good response from this treatment and find myself wondering if this rather "numb" feeling is me and this new stage, or if its the medicine or a combination of both. I can't explain it well because it's not a feeling of depression really, it's just feeling Nothing; hard to feel joy or excitement. I always felt so joyous and full of life and I'm not sure how to make this better! I have 3 brave wonderful rescued cats (my Care Cats) to keep me company. I have a truly wonderful "Man Friend" that I have known for 3 years now for support, and I still manage to work full time for the company I've been with for the last 40 years. I have no retirement (Mother with me as her sole caregiver for 12 years before she passed with Altzheimer's took care of that, but I don't regret it for one moment). I am very grateful for the support, the income and good insurance my job provides, but worry about how long I can continue and then what will I do. I have much to be grateful for and make no mistake I am, it's just this strange new existence I'm living in that I'm finding difficult to navigate, the fatigue, the frequent urination, the bone pain, the lack of "get up and go girl!" I send you well wishes with much affection. It's rather nice to see the other experiences and find some common ground.
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Jaycee, are you saying you spend two hours with your onc or is it cumulative of all you do during that visit? I am amazed! I feel like I receive good care to get 20-30 minutes. I am unsure what I would talk about for 2 hours.
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Chris, oh, please no! TOTAL two hours. Waiting room downstairs, blood work upstairs, waiting room downstairs, doctor (five minutes), Xgeva upstairs with waiting at each location. They send the blood to the hospital lab and get the results back by the time I see MO. If I was in a room with a doctor for two hours ... well, something illegal might happen. They just posted a new sign that says weapons are not allowed in the building.
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That's what I thought! I usually just see the onc and I never wait more than 10 minutes to get into the room (they try hard!) I get the labs during my week off so they aren't "fresh" but usually only a week old unless there is a problem. My scan is usually a week prior also, so we go over everything about 20 minutes. My DH goes with me. I get my Zometa infusion at a different time.
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Dear Miss-MO,
Welcome to the BCO community. We are glad that you reached out to our members to share your story and your feelings. We hope that you will stay active here an find some support through the shared experiences of others. Please let us know if there is anything we can do to help you to navigate your way around the boards. We want to see you around and can possibly suggest and connect you to topics of interest.
The Mods
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Jaycee and Intolight- I get my labs done a day or 2 before the office visit- hospital Outpatient Lab---in and out anytime from 6 am - 6pm with virtually no waiting. I get my Lupron injection and my Port flushed monthly at a separate visit (see nurse only for that). We tried to combine injection and office visit, but we need to keep Lupron on a monthly cycle and cannot time it with MO visit and keep on track. So the day I have office visit with MO---wait time 10 minutes or so, with onc for 15-20 minutes and out the door. One time I had several questions for the MO and she was moving toward the door after the 15-20 minute time frame. So when I said the doc visit day on my day off is short we are talking 30 minutes or so and the rest of my day is free.
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Dear Miss-Mo, welcome to our little group of Ibrance Dancers (which includes precious people who still dance with us but have moved on to other drugs)! Most of us have found ourselves up and down and sometimes flat on this MBC roller coaster.
I highly recommend Dr. Lawrence LeShan's "Cancer as a Turning Point". I attended one of his workshops 23 years ago and an exercise he put us through sticks in my mind. We were asked to make a list of experiences that had brought us joy in the past, going all the way back to childhood. We were instructed to choose one and engage in it the following week, then to keep adding others over time. It could be as simple as swinging at the park. Once you get over thinking, "This is so lame and won't change my mood," amazingly it does! The book has other good exercises and such a wonderful shot of hope about surviving cancer.
Miss-Mo, it sounds like you are doing an amazing job at keeping your life together and I admire you for that. I've spent some time grieving for the happy-go-lucky person I once was and am now trying to appreciate this slowed-down version of myself who has time to read and contemplate spiritual things. I'm one of those who believe I'll get better and be off treatment someday and I wonder which kind of life I'll prefer. Much to ponder!
My best to all of you on a lovely Spring day in Memphis!
Love from PatGMc
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Candy and Chris, you guys make separate trips where make just one. I considered doing blood work the day before MO (they said I could) when I was there for three hours one time. Decided against it. I just bite the bullet and do it all in one go.
Miss-MO, sorry I didn't welcome you. I was very impressed at how long you went with your original mets, eight years. What treatment were you on during that time (2011 til now)? We all get the nothing feeling, at least I do. Do you plan for the future or lament the past or what? These meds we are on have all kinds of side effects, some documented and some not. Plus I think we all suffer from PTSD from various diagnoses and treatments. It's a slog but one we keep trudging through. Welcome to our little dance. Hard to dance while trudging but we do.
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Jaycee, yes, sometimes I just dance moving my index finger......but it's still a dance!
Love from PatGMc
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LADIES HELP !!!!!!
What are you all told about the Measles epidemic????? I checked with my local health department and they looked up my records. It show I never received the MMR vaccine. WHAT?? My mom always got us kids our vaccines, but she is passed now so I cannot question her. Our State is effected in the epidemic. I placed a call into the onc office.
WHAT DOES YOUR ONCS SAY ABOUT THE MEASLES ISSUE WITH OUR IMMUNOCOMPRIMISED SITUATION???
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Hi Candy,
I never received the vac's either. But, I'm older than you are. I HAD the 3day and the 21 day measles. I also had the mumps and the chicken pox. Does this provide lifetime immunity?
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Here they are saying if you didn’t have vaccines , or measles, it’s ok to get the vaccine. I’d call MO or Health Dept to be sure. My PCP ran a blood test without my knowing and told me I’d had measles. Then *I* told him I’d had both kinds. Depends on your age too. When the vaccine came out, they thought one dose was enough. You have about 90% protection. They recommend a second dose for 100% coverage.
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Candy - how old are you? MMR as a combined vaccine didn’t start until 1971. Measels only, however, had been available since 1963. I was born in 1969 so I did not get MMR but I did get measels as a separate vaccine.
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Lauren- I was born in 1970. The health dept said I should have received vaccine in 1971 but no documentation of it. But they said some documentation fell threw the cracks back then, so I could have received it but not documented. I have call into onc to see what to do.
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I’m sure you got the regular measels vaccine in 1970. Let us know what your Onc says though!
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Candy, Can't they find out if you have the immunity by doing something with your blood? Sorry that's not stated well, but I know there is some kind of test.
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Thank you for your response!
I have never let my diagnosis define me. And now I think of it as maintenance. I try not to let myself dwell on it (much!), but sometimes it's hard not too. For the most part no one would ever know I have cancer. I was taking Arimidex since my original diagnosis in 2001 all the way through the initial recurrence in 2011 and just 3 months ago switched from it to the Ibrance - fulvastrant combination when the metastasis moved to my lungs. My number has since gone from 152 now down to 62 and I march on.
Thanks for everything! The advice, the chat and the encouragement!!
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Candy, ask for the blood test to see if you have immunity for measles. If the results come back negative, then talk with your MO about what to do
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Welcome Miss-Mo - I am encouraged by your progression-free period but so sorry to hear that it is on the move more recently. I sure hope that Ibrance/Fluv put it right back in that dormant state for even longer. Keep us posted on how you are doing with Ibrance. Seems the side effects are very inconsistent among many of us. Nice to have you here!
Love to all,
Lauren
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Candy, you can get a blood titer to check the immunity - your doctor should be able to order it so it would be covered by insurance, but even if he wouldn't, Personalabs offers the MMR titer for around $100 and you can get the blood drawn at locations all over the country (I had to get mine done for school last year).
My oncologist advised against getting vaccinated now with the MMR vaccine, since it's a live virus vaccine and he didn't want to take a chance. I had immunity to measles and rubella, though (just no immunity to mumps), so the risk/benefit analysis might be different if it does turn out you don't have immunity to measles. On a more encouraging note, Illinois does not appear to have a high number of cases, so the risk is probably quite small unless you work with lots of people.
Fingers crossed that you are immune!
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Greetings to all you gentle and beautiful ibrance dancers.
I have a bit of good news to share....they are testing in clinical trials taking place all over the country—what my MO described as—a perfected new version of ibrance.....which I reckon it likely means it will be effective on its own and hopefully with less Se....I'll know more on Friday....
If it works, it will an addition to the existing arsenal of MBC TXs!
So, if the creek don't rise, I'll be joining you dancers with a brand new pair of ballet sleepers soon!
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Wow, great bit of news, Miao!! I wonder if we all take a mini vacation if our cancer can reset to become senstivie anew to Ibrance, so that we could then start up with the new version, and/or combine it with a SERD or faslodex following progression on the old Ibrance. Great to hear they are taking a great drug and making it better! Without a week off in the dosing schedule, we may also go longer before progression
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Please try and get the clinical trial number so we can see where else it is being tried. Thanks
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