Ibrance (Palbociclib)
Comments
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Candy - I go to one of the top teaching hospitals in the UK for my (current) treatment and that sounds like my normal trip into the CT scan, except they just plonk down water after encannulation. One person in the booth, one tech to get me situated/drape things where needed/hook up the machine. Two passes with the breath and hold and done. I saw someone on another forum liken that CT scan to a 'bad Spanish nightclub' with the lights and the instructions. I suspect they are newer machines and require fewer passes, which means they can put more patients through per hour.
For teeth cleaning - I just had mine done two weeks ago and here at least they aren't using the high-speed cleaning tools because they give off too many aerosols and there are all these rules about leaving a treatment room to air out for an hour after each patient if aerosols are produced. Everyone was covered from head to toe in PPE and I was just getting a check up, xrays, and cleaning! I try to go either the end of my days off or around the first week of new cycle.
Do you have a nurse navigator assigned to you at your new facility? Surely they must have SOME sort of palliative care - its not just stage IV people who need it.
I agree that the researchers tend to all be academic types but there really aren't other options in the UK (they are ALL Professor Dr so and so) so I just put up with it. Im rather glad to see that this seems to be common the world over!
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Hi Sondra. Yeah, must be newer machines. And, like you said, they can put more patients through per hour. The previous facility must have ancient machines. Like I said, you can hear the machine rev up, whirl fast, and wind down. Then does that several times.
The nurse that came in with the doctor was titled the "nurse navigator". She stood to the side and had a computer. She was placing orders in for the MRI and next appt as the MO and I were talking. Doc did say she wished they had an outpatient Palliative Care program, but they don't. Only inpatient. And of course they have Hospice for the cancer patients.
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Candy, it sounds like it was a mixed bag type of visit, not super in the bedside manner, but I wish I could have my doc go over films with me. I think that’s awesome.
For constipation, I’ve been taking the Publix brand of Miralax, and it’s really working well. I’m supposed to take it every day, but I usually take it every other day. She also said to take it with a 100 stool softener. It really works for me.
I was supposed to have an abdominal MRI and a chest CT on October 12th, but my insurance said they’d only allow a CT for the abdomen. I said screw it, and I’m self paying for the MRI, and it’s now set for tomorrow. CT of chest, abdomen, and pelvis set for October 20th now. I need to see if an MRI sees what the CT does not.
Kemiller, I’m sorry you find yourself here if you’re starting onthe 125 mg Ibrance, you will probably notice a good amount of fatigue. I did I’m in 75mg now, and I still get fatigued but not as bad.
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KBL- Yeah, over all it was a good visit. I liked she included me in the looking at the scan views. Just didn't know what I was looking at. And I have already benefitted from the change in Ibrance dosing.
I hope my insurance doesn't balk at the MRI. My insurance is weird.
I use prune juice for the constipation. An 8 oz glass usually does the trick. I tried Miralax-- nothing.
In your pocket for the MRI tomorrow. Let me know how it was. Mine will be an MRI of the abdomen too.
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Candy,
I forgot to say this: I recently had a CT on what the tech described as "our newest machine" and it was the fastest test I've ever had. This was in a tricked up new imaging suite, so I'm sure that's what's going on here. I've done them on older machines, and it does take a lot longer.
Also, not sure if you are into yogurt, but Activia has a probiotic yogurt drink that helps me with the "go." I'm not crazy about Greek yogurt, which I've seen people talk about helping, but this is just a little drink and it seems to help me. I think on the package they recommend 2x a day, but I only drink it in the AM with my breakfast. Just a thought.
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Candy, it sounds to me like overall you are better off at this new place. I do think someone must address your pain. Does your onc have a particular registered nurse or nurse practitioner she works with? Nurses can be really good at practical solutions to side effects etc., and they seem to have a little more time available. (I know your last nurse was terrible.) But you might call and ask for Dr. so-and-so’s nurse, and see if they can start to address things with you. I think this would be a different person from the nurse navigator.
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ShetlandPony- Good idea. I cannot give up on the pain issues. Seems this "nurse navigator" is the main nurse. I have been messaging the office thru the patient portal quite a bit thru this whole transferring care thing. I get this same nurse. She does the messages thru the portal, gets phone calls sent to her voice mail, and is with the doc during the office visit. The doc's right hand I guess. I could message her about the pain management issues. But the doc mentioned yesterday that there is no outpatient palliative care, but there is a pain management doc at another hospital--- I guess she refers patients to them. But, not in the same area, another 30 minute drive from the cancer center. Would have to travel even further, and check if insurance would cover THAT facility.
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KBL thanks for the info on constipation...thought it was just me. To let everyone know I did have a colonoscopy and had two small polyps. So make sure you all consider having your colonoscopy. Haven’t received the results yet but surgeon thought ok. Candy sorry you are having a hard time with your Onc and other results.0
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Thank you, Candy. I appreciate that you’ll be in my pocket. I will keep you posted. Good for you being able to do prune juice. That would be a no for me. I don’t think I could stand the flavor.
Airlinegal, I’ve suffered with constipation for quite a long time. This mix seems to work the best for me. I had a colonoscopy last year at the same time as my first endoscopy that found the cancer. It seems all is well in the colon. May I say the prep was not fun at all. They made me do the carbonated drink stuff, and after getting the first bottle down, I kept throwing up the rest. That stuff is disgusting, and if I ever have another one, they better figure out a better way. That stuff is never going in my body again. Lo
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I ended up not having the MRI of theabdomen. The radiologist actually came in and explained to me that CT scans were much better for the organs than MRI, and he didn’t think this was going to help me. I appreciated the explanation and that he took the time with me to explain. CTs set for October 20 instead.
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KBL,
Hmmm. That's quite interesting. I wish that radiologists would come to some sort of agreement on this stuff. As I"ve posted before, my interventional radiologist has told me that an MRI of the abdomen shows my liver situation much more clearly than a CT. In fact, in my own case, in May 2019, a CT showed a shadow in my liver, whereas the subsequent MRI showed clearly my tumors.
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BevJen, it's extremely frustrating, and I agree with you. I don't trust doctors since they have done me wrong for so long. I was more concerned about what they saw on my omentum, but he basically said CT would be able to pick it up. Does he know scans don't usually pick up crap for me? I hate being at the mercy of people who have no clue who I am. I didn't argue with him because even though I was going to pay for it out of pocket, he and my doc said nope.
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I say with ILC, get all imaging modalities until you see what works for YOU.
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My tumor marker has slowly risen to 100 on Ca 15-3. Ct/pet scan on 8/24/20 results were:
Uptake on fdg on T3,T4 and L2 with no definite ct correlate. It is of uncertain clinical significance, however metastates can't be ruled out. There are some new micro nodules in the upper lobe with one nodule measuring 5mm. Not well demarcated for metastates vs inflammatory infection.
This is roughly what was said. I'm scheduled for a follow up in November where my Dr isthinking maybe Ibrance and Faslodex.
I'm currently on Armidex and Xgeva. I'm wondering if I should even try Ibrance. I'm on Medicare So I think I have to pay approx $6,000 out of pocket prior to Insurance kicking in. Has anyone ever just gone without meds? I'd like to see my son retire from the military in about 4 years as he's a single Dad but I wonder about the qol
My Oncologist wants to see how my tm is before making any decisions
Any comments would be appreciated.
Dx 2008 2X mastectomy some lymph nodes removed under arm2017 stage 4 Mets to L4 vertebrae. Armidex and Xgeva
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Your MO office should be able to get patient assistance to pay for ibrance. I have 0 copay for it. I also have a Medicare Advantage plan.
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yeah, a lot of people can get assistance, but many cannot. I'm in the cannot bucket, and you are correct -- the costs are a bit ridiculous. And I just got a notice from my Medicare part D prescription plan that all of my costs and co pays are going up next calendar year (thanks, big Pharma).
Medicare will cover faslodex under Part B, if you have original Medicare. I've paid nothing for that. You might talk to your doc about trying that as a standalone for a bit? Also, the pharmacist at my center once told me that Kisqali (same class of drugs as Ibrance) is a bit cheaper than Ibrance, but I don't know how much cheaper. It's more popularly used in Europe and Australia, but is still a CDK 4/6 inhibitor.
Good luck.
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Cbbrew, Faslodex can work even when Arimidex does not, so that is a reasonable switch. Adding Ibrance to the hormonal therapy can roughly double your time to progression. I don’t know your whole situation and health status and quality of life, but so far it does not sound to me like you are at the place where you need to think about stopping treatment, especially as you want to see your son graduate. Can you fill in your stats, and tell us if you have IDC or ILC? With some ambiguities on the PET-CT, can you have a CT with Contrast (The CT that goes with the PET is a poor-quality CT due to lack of contrast agent) or an MRI? What does the radiologist recommend as far as a different type of scan to clarify things? (Ask your onc to check with them.)
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So Bev, does this mean that getting meds paid for by a trial sponsor is another piece of the puzzle for you?
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cbbrew...
I’m on Original Medicare. My CoPay for a month of Ibrance was going to be $2,000.
The Medical Center helped me get into a Patient Assistance Program with Pfizer. I now pay nothing for the medication and Pfizer calls to schedule refills.
I’ve been on Faslodex since February 2020 and will be changing to Anastrozole this week because of bone pain. My MO tells me people react differently to different medications and we will keep trying to find the right combination for me. One that works that I can handle the side effects.
Speaking of SE’s, has anyone tried Acupuncture for the bone/joint pain?
Thank
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SP,
No, that's not determinative of a trial or not for me. But the price tags on these drugs can be pretty steep, that's for sure.
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ShetlandPony, I sure did try. I will definitely talk with them at my next appointment. I had already plopped down the money for it. If I wanted to waste my money, as they say, I should have been given the opportunity to see what it would show. I’m trying to believe the radiologist, but I will see what CTs show and go from there. I’ve had all three CTs done at my cancer center, so I’m switching up and going to this center for a change.
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Tina2 and BevJen - dosing. My Oncologist lowered my dose from 125 to 100, just finished the 2nd cycle of the lower dose, 13 cycles so far. She said that since the clinical trials they've learned that 100mg is just as effective, and that it is the insurance companies who sometimes insist on what the clinical trials came out with. Pomegranate - only 1 pharmacist has mentioned pomegranate, the others said it was not on their list. I had to switch pharmacies after the 2nd cycle, because it was not the specialty pharmacy I am required to use by insurance. IT is really strange, and frustrating. With the 1st pharmacy I was in a program that gave me the Ibrance for free, and the people I talked to were not only easy to talk to, but seemed better informed than the ones I have now. I also now pay $50/cycle as a co-pay.
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Shetland pony I’m learning such a lot from this site. I had to search IDC/ILC and I believe I was IDC in 2008. I wasn’t given chemo but they suggested arimidex. I chose not to take it because of the side effects and the fact I was working. I also used to look to Lilly on the John Hopkins site and the many people who posted there for advice. My current onc told me “well you rolled the dice”, perhaps he was right, I thought I was invincible. In 2017 after my husband and I relocated to Wa State, I developed a stiff swollen neck. It was a blood clot in my inner jugular and my onc said that often was a sign of cancer. Ct/pet lit up L4 vertebrae, which is now not active after 3 years 7 months on arimidex. I’ve never felt terribly ill and currently I feel well. I used to do aqua aerobics but looking after the grandkids Doesn’t leave me time so I prefer to walk. We’re off in the trailer this weekend for a few days. I’m only coming to terms with the fact that the cancer will kill me perhaps sooner than I anticipated. I expected it to stay in my bones for 10 years and I’ve read when it goes to an organ then it’s more difficult to stop. The radiologist suggested an MRI of the chest and to F/up with labs. My onc said “I don’t think we need any more testing But wants TM test and labs in November then we will discuss options He’s always said if the arimidex stops working he’ll switch me to something else thanks for those that mentioned the cost Btw my home town is Uddingston
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Discussed results of CT with MO on Monday-- CT done Monday couple hours before office visit with MO. So I know the situation. But I want to see the CT report. Read it myself. And see what all the radiologist said. Still not in the patient portal. I messaged the Help Desk for the portal. Normally seen in portal 7-10 days after done. So I wait.
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Candy - Waiting for MY results to be released to ME is my pet peeve. This morning I had my PET. I was able to leave the facility with a disk to bring with me to my winter season oncologist but not the report. They said they will not release the report until my doctor sits down with me. That’s Monday. This facility does not post PET reports to the portal. I was told that I can request them and then someone can post the report. Really? That defeats the purpose of the portal, doesn’t it? I’m like you. I want to read the report for myself- and preferably BEFORE I meet with my MO. This way I can be prepared with questions. I don’t think well when initially given news. I need to digest it, then I gain clarity
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RK2020- With my previous MO we did CT a few days before the office visit. I would go to Medical Records and request a copy of the report just for the reason you said--so I could be ready with my questions. Now, with new MO, I am doing CT a couple of HOURS before office visit. Like I said, I talked with MO about results and know the plan is for an MRI in couple of weeks to further view questionable area. But I want to READ the report now. But have to wait 7-10 days for it to flow to the portal.
This new way--scan right before doc-- is good (no wait on results) but bad (no time to prepare for bad news and have questions ready).
But the reason for my post is the 7-10 day delay in results to flow to the patient portal. I have already talked with doc about results so no secret to hide.
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Hi.
Its my first post here on Ibrance tread, but I may have to say goodbye to Ibrance soon. I have my first PET on May 12, with multiple bone mets all over the places, officially declared Stage IV status. I waited about 2 months seeking 2nd opinion and then started Ibrance with Fasoldex on Jul 01 .After just taking Ibrance 125mg for three months, I have 3 new areas of bone mets and three possible liver mets on my PET scan. I don't know how the tumor grows so fast, before I took Ibrance or after the Ibrance? is this too early to say that Ibrance didn't work for me. Shall I give it more time? How long it takes for the Ibrance to work? Sorry I am so upset and don't know how to organize my questions logically.
Thanks
CynMaryland
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When I was told I could NOT have a copy of my blood work results (Wickenburg Clinic, Wickenburg, Arizona). I asked if anyone had heard of and/or read the HIPPA regs. You have a right to your information. When I called them out about it I had a sit down discussion with the doctor right then and there and she went over the results and gave me a copy. Knowledge is a beautiful thing. Don't let them intimidate you - you are paying their salaries.
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Cyn - Did they biopsy your mets to ensure they were the same hormone status as your original cancer?
My first 2.5 months on Ibrance and the first scan report came back with 'clinical improvement' which I took to mean falling tumor markers and some sort of measurement improvement. By June after 7 months it had resolved my bone mets almost completely. Some sort of improvement should be seen within a few months of starting, however. But if your cancer is no longer hormone positive then Ibrance/Faslodex weren't going to work.
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I only recently started using the portal at my cancer center. I called their tech support to find out why I was not seeing expected documents. They told me that if the doctor or nurse practitioner releases it, it will show up within a certain amount of time. If they don't release it, it will show up after a standard longer time. So you may have to train them or remind them to release things. So, candy, maybe make sure that during your appointment, they release it.
But if the doctor has access to the report when you are there at an appointment, why not ask for a printed copy then and there?
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