Ibrance (Palbociclib)
Comments
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Candy, you didn't mention the two week off option that I think is a good choice for you. We know Karen in Scotland does that but I don't remember if she does 2 on 2 off or 3 on 2 off. Do they have any results from the 5 days on, 2 days off yet? It just seems like two days off would not be enough to bring ANC back up but maybe with only five days on, it wouldn't get that low to begin with. I would be seriously pushing to stay on Ibrance.
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Candy it looks like you have your options laid out. I do remember that Micmel does 1 week on; 1 week off. I guess the main thing is what break is long enough to get your ANC back up. I agree with Jaycee that 2 days may not be enough to do the trick and then you have to do 4 weeks and get only one extra day off right? because we do 21 days and then have 7 off. Pat had some great advice. I think that's the best because she prays about it the night before and then sleeps on it and goes with her faith in the morning. (bravery and conviction). Thanks for sharing this it really makes us all examine and question our treatment. We're all so different in age, health-other ailments besides cancer, weight, etc. and yet given the exact same regimen with only the dosage amount adjusted 125 100 or 75. Looking forward to seeing what your new treatment plan looks like and pray it's exactly what you need.
Pat I'd love the link to art supplies.
Tanya
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candy, I often moved over to the 5 days on 2 days off schedule when I was on 125 mgs; I don't think it fixed my low anc but I definitely felt less fatigue and there's no obvious risk to that as you are getting same amount of med- my MO got tired of making me taking breaks and moved me to 100 mg and now ancs are fine and I don't even take a full week off, just a 3-4 day break before next cycle- still, I will try jumping back up to 125 mg when I get progression
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Hi all - I just started cycle 10 of Ibrance. This past cycle, at my week off my neutrophils were 1.24, last month same time they were .70 and I took another week off. This time, no need to take another week off. I am at 100 mg on Ibrance. I, too would like to stay on Ibrance as the side effects are pretty easy for me to tolerate. My onc will not let me consistently do 2 weeks on 2 weeks off, when I asked last month. I have had to add the extra week off at least 4 out of 9 times so my onc may lower me to 75 mg.
Candy - keep us posted on what you and your MO decide.
My husband and I just celebrated our 30th wedding anniversary. We decided to take a road trip to Yellowstone as our trip to Europe had been canceled due to Covid and leave tomorrow. I have never been to Yellowstone and am looking forward to it! 2 weeks off from work - hope to decompress! Planned this in between my fulvestrant injections etc. We will also visit my mother in law in Arizona and my parents in Palm Desert - haven't seen any of them due to Covid and think a roadtrip visit is less risky compared to flying.
Stay well everyone and enjoy the rest of August!
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I did mention the on 3 weeks/ off 2 weeks to my new MO when I consulted with her. But she said No. She was leaning to the on 5days/off 2 days due to the trial at her facility. If they were not doing that trial, I don't know if she would be open to that possibility either. I too wonder if the on 5 days/ off 2 days will be enough for the cells to recover. But I guess we have to try. I can ask again about the off 2 weeks and see what she says.
I have only met with her once since all this. These repeat labs and orders are coming from portal messages between me and the nurse. Of course, the nurse is getting the orders from the doc to then tell to me. I wonder if I need an office visit with the MO (either telemedicine or in person) to decide next step. No mention of appt yet by me or the nurse.
I have these "options" I listed written down on a paper. But, really, do I have any say in what is done?? I mean, if I wanted to do on 3 weeks/ off 2 weeks, could I really? If MO disagrees, then I cannot do it. Or if I try the on 5 off 2 and it doesn't work and I want to move to Verzenio next, and MO says NO then it is NO. She has to order the drug.
So I have ideas but MO has to agree. So do I really have any control?? We will see how it goes.
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Candy-Here's my 2 cents. The only time I was sick for more than a day or so was when I switched to the 5/2 schedule. I did it a few years ago with my MO's permission because I wanted the Ibrance to stay in my system for as long as possible. I am pretty active and was swimming in a public pool that summer that also hosted a lot of babies. I got some weird virus and was very tired and had a low-grade fever for over 3 weeks. I think the 5/2 schedule did not give my white blood cells enough time to rebound. I switched back to 3 weeks on/1 week off and have only had a minor cold since then (knock on wood!). That happened when someone in a yoga class was sneezing and coughing around me.
You know-you can take your pills when you want. You could decide to try the one week on/one week off if you think that would be best for you. You would wind up with extra pills but maybe if you try the 5/2 and it doesn't work for you, it would be worth a shot. From what I read on the other threads, Ibrance seems to have the easiest side effects. I want to stay on it as long as possible, as long as it is effective.
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Candy, I would pitch your list to her as what you would like to try - if she is in any way decent she will collaborate with you to make the right decision as a team. I think its a pretty good list even without the 3/2 or 1/1, and those are pretty unique arrangements in the first instance that those ladies came to after a similar process working through the challenges with their MOs.
Just back from a dash into town to see the doctor in person, as expected there were crossed wires about if I was due in or not. Someone finally touched me though, and she squished around a bit trying to find the lump. She patted above the nipple which isn't "the lump" - it wasn't there until I started treatment and was never examined initially. The one that was biopsied, and had clips shot into it, is in an awkward place up and under the nipple. She mentioned it was a very diffuse tumor - like jello? well the radiologist actually shot a clip straight through the thing. They still don't have my original diagnostic imaging from the diagnosing hospital, which means I may get an u/s of the breast next month along with the scans. My leg lesions are still definitely varicose veins so glad THAT is confirmed. And I got my drugs issued at least so I don't have to deal with that tomorrow.
I know I say it every month, but this month I mean it - time to find an alternate arrangement. I was the only patient in and I still only got ten minutes, no confirmation on my Xgeva shot, I stood up and whipped off my bra and shirt for the exam, and I was informed that I arrived with 'quite advanced cancer'. So... what, is that hopeless or something? There is never any encouragement or a tidbit of info - 'yeah you showed up pretty advanced but you are doing great on this protocol!' or 'if its shrinking you may experience the nipple retracting further' or 'when the tumor dies it tends to do X'.
Maybe I'm having a rough time as its coming up to the first year anniversary, but its time to get in the game and get better informed and more engaged with my care. Its still all so unfair and nothing will make it better, although controlling what I can may help.I know how I want my care to be delivered, I just need to go arrange it now.
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I appreciate everyone's advise. Chicagoan- I have not been sick the whole time I have been on Ibrance--- not even a cold (knock on wood, too). With these low numbers, I have had no cold sores, no mouth sores, no fever, no sniffles, etc. But, obviously, we cannot continue on as is with an ANC of 700 after the week off, and ANC of 500 2 weeks into the cycle. Something will have to change. I too do not want to switch from Ibrance. The GI issues with Verzenio do not sound fun, even if I am stuck in my house due to Covid. So we are going to have to do something. I will present my list to my MO--- even if thru an email only--- and see what she says. Try the 5/2 and see how numbers are with that. At least we will have documentation of trying it. Then maybe she will agree to 3 weeks/ 2weeks that I want to try. Move from Ibrance if we just see that my numbers just are not going to come up.
I know I have the meds in my possession, but I really do not want to try something without my MO knowing. What if I try something and it works, my labs get better. Then I will have to fess up to what I did to explain the better numbers.
Sondra- Sounds like you need to make a MO change too.
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Hello,
- Just checking in to see if folks struggle with MCH and MCV, lab work. My counts are always high, but especially my MCV. RBC are low. Ironically my ANC is fine.... I had an elevated ferritin but my iron level was within range. I'm trying to wrap my head @ all of this. I read maybe low b12 or folic acid, probably should receive lab work. However I read conflicting information that folks with ER+ should not take b12 or folic acid. What should a gal do?? I don't see my MO for 3 weeks, on my 12th cycle at 125 mg.
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My MO said to take 2000 B12 sublingual daily, hopefully to help with fatigue. Not much improved.
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Hi BlueGirlRed,
You could be right about the feeling of dread, since I haven't had it lately. Wow, I didn't realize it could take 12 cycles before they decide to reduce the dose of Ibrance. I just finished my 2 cycle, on my waiting week right now. WBC was better this time, after only 2 days off the Ibrance, it was 2.2. Last month, after 7 days off the meds it was only 0.9. Not sure if it means anything or not. Thanks!
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HI KBL,
I don't know if a hot flash follows the feeling of dread. I had a lot of hot flashes in the beginning with cycle 1 and not so many with cycle 2. I'm off Ibrance this week, but will definitely keep that in mind when I get it again. I also get the hot flash at night like Sondra F mentioned. Thanks!
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Hi Tanya_Djami,
Thanks for letting me know about the connection between the feeling of dread and the hot flashes, I'll definitely be more observant from now on. Thanks!
Katrose
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Hi Candy-678,
Wow, I'm so glad I asked about the feeling of dread! It is just so weird and came on so suddenly, that I had to ask if anyone else experienced it. So glad I'm not alone with this really weird symptom!
Thanks,
Katrose
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Thanks JACK5IE - sending you a hug and praying for you also!
Katrose
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I have between 12 and 15 hot flashes a day, and thankfully, I don’t get the dread feeling every time.
Tinkerbell, my MCV is also always high and has been high since the beginning of treatment. My MCH has been high since August of 2019. I’ve also had anemia since October of 2018. I did take sublingual b12 for a little while, and it raised my b12 way over the top. I no longer take it, and my b12 is normal. My ferritin has been high since 2016, but all other iron levels normal. I hope this helps to know you’re not alone. My ANC struggles and has since the beginning, but last round I was at 1.15 at the end of my week off.
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Just catching up as usual!
Candy you sound a bit more 'up' than recently - I had been about to suggest some professional counselling. There must be a free service near you through one of the charities? We don't have a 'therapy / counselling' culture in Scotland, so when suggested to me I poo pooed the idea. Then realised I was struggling and needed an independent person who knew their stuff re cancer patients to talk things over with. It was a huge help and I also referred my husband ( men are even worse here for bottling things up) who was resistant but eventually gave counselling a try after he realised he wasn't coping either. Different counsellor but he also felt it was very beneficial and he really liked his lady...."just like having a chat but I can say anything to her without shocking her" he said.
Re scheduling of Ibrance I am 3 weeks on and 2 off on 75mg. Should stress that was formalised because my counts do consistently recover ( just) on that schedule. I have a wee theory that the medics like to keep within the 4 week protocol - hence 5 days on 2 days off as a possible which would keep within a 4 week cycle for ordering the drug/ clinics etc. For a while I was the only patient locally on a 5 week schedule, but there are more now. My MO will go with what works and is copable with QoL wise!
Jaycee and Jen woohoo for you both and HA as Jaycee says!
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Jen and Jaycee - so happy for both of you to hear that you are at 51/52 cycles of Ibrance and doing well! Gives me so much hope!
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Spookiemom and KBL. Glad to hear that I'm not the only one with these freaky counts. When I look back to my lab work prior to starting treatment it's amazing how these medicines really have an impact in a negative way. It's like your looking at some else's lab work. It's the sacrifice we make but if the treatment works then so be it. I'm probably going to hold off on B12 until tested. At times I feel fatigue but associated it more with insomnia. Probably both....thank you gals for validating my dilemma. Don't read a lot about folks having problems w lab outside of ANC... thanks
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Aha! I have always wondered why weight doesn’t factor into the dosing of Ibrance. Today’s Practice Update (I love this site) posted an analysis of Verzenio and BMI. The bottom line was that
patients in the normal or underweight BMI categories had a higher overall response rate to Verzenio compared with overweight or obese patients, but more frequent neutropenia as well. We need more analysis of dosing for both efficacy and QOL. I wish this analysis had also determined if BMI had an impact on the rate of those with diarrhea That is my big concern with Verzenio. I’m not on it now, but who knows what my future holds. https://www.practiceupdate.com/content/clinical-implications-of-bmi-in-metastatic-breast-cancer-patients-treated-with-abemaciclib-and-endocrine-therapy/104792Tinkerbell - since starting Ibrance, my bloodwork has changed and my MO said it’s the drugs OR possibly that my bone marrow has been compromised in my femur where I had a large tumor OR both. So far my numbers aren’t terrible but still out of normal range. My RBC is slightly low and my MCH is slightly high; MCV is borderline high. I’ve also had platelet issues but since I started 75 mg, my platelets have been ok.
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Karenfizebdo- Thanks for the laugh this morning. I probably do need professional counseling. No, there are not any free services here. In my local town, we do not have counselors for just cancer. Would be a general counselor for depression, marital problems, substance abuse, etc. And they would charge $35 a session, with my insurance included-- I checked. I cannot afford that. I have a dead tree in my yard that needs to come down and that is $1000, and property taxes due in the next couple months of $2000. So no professional counseling for me. I will ask at my new cancer center if they have the service for no additional cost, I hear some cancer centers do.
RK2020- That is strange they do not dose based on weight. I am 5'1" and 150 pounds, do not have my BMI number. But I am not a big lady. Yet, I get the 75mg on 3 weeks/ off 1 week like anyone else.
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Candy - I hope your new center has reasonably priced counseling available. This is something you could do over Zoom and then wouldn’t have to travel. It’s definitely worth looking into.
As far as dosing is concerned, I’m 5’3”, 118 and prior to my femur debacle, I was pretty lean. I’m working at building my muscle tone back up. So I’ve always felt that my body type likely played a role when 125 mg kicked my butt. The difference between 125 and 100 was night and day. And now that I’m on 75 mg I feel like I have my life back. I also feel that the side effects from 125 and 100 slowed the healing of my femur rod surgery. I made daily progress in healing until I started Ibrance. Four months after my surgery, I was still struggling - taking stairs one at a time, needing my arms to assist when lowering myself onto the toilet and standing back up, leaning on something to put on my underwear etc. By week 3 of my first 75 cycle, I noticed a dramatic improvement. I can now properly exercise (not just get activity) and I am still seeing daily improvement. Coincidence? I don’t think so
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RK Candy and others thank s for sharing your concern about the dosing and no weight age requirements etc.
It also helps when I speak to my ONC to let him know that other Drs are altering dosage schedules for QOL.
Candy I go to a cancer treatment center and my counseling is free. It's on a program like zoom called doxy. At the other cancer hospital, Moffit they also have a team of social workers but I don't know if it's for a fee. American Cancer Society may have something free also.
Just as an FYI my counselor suggested a website https://theconversationproject.org/starter-kits/
It is free and it just lets you get some things organized in your mind that you may want to discuss with your family.
Finally on my week off from Ibrance.
Take care all
Tanya
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Hi Everyone ---- I got a reminder letter today that it is time for my mammogram. I was wondering if it is necessary anymore since I get CT scans every three months? I don't know, just struck me as odd to need a mammogram when I am in treatment for stage 4 MBC. Your thoughts are appreciated.
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My oncologist said I don’t have to get them anymore but I get PET scans. I’m not sure if that makes a difference or if different MO’s have different opinions
In a similar vane, I was wondering today if I have to continue my yearly dermatologist skin check or not. I put it on my list of questions to ask at my next appointment but you ladies probably already know your MO’s thought on the topic.
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Lee64, I got a letter a few months back about a mammogram. I mentioned it to my APRN, and she said I had no need. Just to note, I’ve never had a primary found, so I’m not sure what good it would do me anyway.
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Lee, my MO said I didn't need a mammogram either. I actually had someone from my primary clinic call me to schedule a mamo. I told her I didn't need to. She said well you need to have a yearly mammogram to check for breast cancer. I told her why, I already have metastatic breast cancer. You could have heard crickets on the other end. Said said oh sorry and hung up.
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YES you do need to see your dermatologist. I just had a dime size squamous taken off my hand.
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I agree with Spookiesmom. My MO says to do all "regular" health checks (not mammos) and since I had melanoma in 2006, you'd better believe that I get my skin checked annually.
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Thanks for the feedback Spookiesmom and BevJen!
Next topic - I was looking at my paid medical claims this morning and am shaking my head at the pricing differences between my Wisconsin and Florida facilities. For instance, a Fulvestrant shot at Moffitt costs $11,640. The net cost after network discount is $6,052. In Wisconsin, the gross is $7934 with a net after discount of $7458. I know for sure that the Wisconsin shot is NOT generic I never paid attention at Moffitt
One starts out really high but nets out to a lower cost ultimately. A $1500 difference for one shot seems like a lot to me. My insurance pays both 100% so there is no impact to me personally but what about someone who has to foot part of their bill? I don’t know. I’m all for a free market but most people can’t price shop their healthcare.
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