Ibrance (Palbociclib)
Comments
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Rose fortunately or unfortunately I've been at this a lot longer than you and Hope have. Just because you fail on one hormonal, doesn't mean that you fail on all. I did very well on Femara combined with Herceptin for almost five years, yet Arimidex only worked for me for a little over a year, but I did very well on Aromisin. If Faslodex worked for a year, perhaps you could get that with the Ibrance, providing the insurance would approve it. At this point, you still have many options. I just wish that there would be more drugs approved with Ibrance and that they would hurry up and get them approved. But at this point, its too early to say that the Ibrance is not working for you. My markers also went up in month two but have since come back down.
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Hope have you ever had Tamoxifen? I found it a fairly easy drug to tolerate. Also, I know that some oncs do give Tamoxifen in addition to one of the Aramotase Inhibitors and are able to get it approved by insurance. It seems to be up for discussion whether its a good thing to add Tamoxifen to another hormonal. Some oncs are in agreement and some not. My onc does prescribe in certain cases with an Aramotase inhibitor. I would not be a candidate for that since I've had Tamoxifen twice before.
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Susan, You inspire me! I would love to see 4-5 yers on Ibrance and then on Faslodex!
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I don't know if I should spitting nails or thankful. My new PA, who doesn't appear to be very good at her job and clearly doesn't care for me, finally called today at 4:30 asking cheerfully "What day did you start the Ibrance?" Ummmm.... I don't even know if I have had an approval, don't have any drugs, and have not started taking the drug. She didn't spend time talking through the side effects, what responses they needed to know about... She did mention the blood counts and diarrhea when pressed. When I asked how I should manage diarrhea if that is what I got, her response was "change your diet." So, I asked the next logical question, how should I modify my diet. "No dairy or fried and fatty foods." I explained that I don't eat those things, what other ideas did she have. None. (Has anyone changed doctors when confronted by such incompetence?) Anyhow, an hour later the phone rang again. The pharmacy was calling. The difference was astonishing. This warm and kind woman apologized at least 20 times. This drug was approved SEVEN days ago. SEVEN!!!! Indeed the pharmacy was to call me to arrange delivery. When this woman got the urgent message about me she took one look at my record and said to herself "that makes no sense. Boston's area code isn't 817, it is 617!"
And then she apologized some more, told me she would be calling in about 20 days to schedule the next delivery. The drug is already on a truck and will be delivered tomorrow.
So, with trepidation, we are off to the races.
*susan*
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Pearlady, interesting about the option of tamoxifen + an AI. I haven't heard of that. When the alternative is chemo, it seems like doctors should be willing to take the risk of not too much data on the combo. It is similar to the concept of Faslodex + AI, which I am on now, as tamoxifen and Faslodex both work on the estrogen receptors. Good to know about another possible option.
Susan 02143, don't hesitate to get rid of your PA. You can't afford incompetence at this juncture!
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Susan, I would be on the phone to my MO telling him about this experience and to never have this woman deal with my case again. Seven days? Unbelievable. Thank goodness you had a "with it" pharmacy tech. Myra.
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Holy crap, Susan! That PA is a callous and flip piece of work. I would tell her how her poor communications skills and cavalier attitude have affected you, then see what happens. If there is no improvement, report her to your oncologist.
I imagine she was thrown off balance by your news that you didn't have the drug in hand and was champing at the bit to get off the phone with you so she could call and berate the pharmacy. That's the only thing that might explain--but not excuse--her terse, unhelpful responses to you.
I am glad to learn you can at last begin the new treatment. The pharmacy made a mistake and apologized for it. But from what you describe, the PA probably made a mistake in her choice of career.
Tina
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So glad you get to start on Inrance, Susan!
Dorothy. Do you know of any studies adding tomoxifen to AI? May need ammo. I took tomoxifen for a very short time prior to my oopherectomy. No idea if it worked.
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susan- so glad you are finally getting somewhere! It seems that communication and correct information between our doctor's offices and the pharmacies are crucial in this situation. One mis-step (is it likely the incorrect phone # came from the PA as well?) can cause delay or denial. In any case, things can move ahead now.
Btw, I have had no digestive issues at all with the drug, so don't worry until something happens. I hope you have another PA option at your onc's office.
Good luck this week! Btw, any discussion about testing for blood counts, or will they just test at the end of the cycle? 0 -
Hope, my MO trying tamoxifen again since it worked so well 10 years ago. He said some women have had great success going back to it.
I am starting to get worried about my rt side pain. The whole time I was in NYC I was basically great. Get home and it is back again. Counts next week. When DH massages it he says it feels muscular. Don't know, I guess we will see. My counts have been mixed. One is up and one is down. This stress is so difficult to handle. I wish I could find something that works longer than a few months. Myra.
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Sandi,
I now have a standing order for the CBC and the full panel so I can get them anytime. I have been told that I need to get the CBC on day 15 which is now on the calendar. I have a small window between doctor appointments and blood draws and plan to head to Cape Cod to see some of our closest friends. Summer in New England is NOT to be wasted! My oncologist is great.... she trusts me to know my body. The PA replacement is the problem.
Thanks for everyone's good thoughts.
*susan*
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Hope I don't know about any studies with Tamoxifen but I was on it once after my initial chemo for 3 years and again several years ago in combo with Aromisin. I think it did work with the Aromisin. My onc does prescribe it with an AI and feels that you can take it a second time. I think as a patient we sometimes have to be our own advocate.
I have not had any GI issues either on this combo. Sometimes minor constipation, but nothing major.
Myra I hope your pain gets better and that your markers are down. It's really stressful to live from month to month to see what the tumor markers are. I try not to get excited when they are good because then I start to worry about what they'll be 4 weeks from now. A stressful way to live.
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Susan, that's great that you've been approved, wishing you great success with Ibrance! Sorry about the PA, she sounds a little less than useless in that role for you, sheesh!
Hope, I've seen trials going on with some of the different inhibitors including Ibrance and tamoxifen (one example and and another) but no idea how they're going or when results would be expected. Good to know they're looking at things like that, hopefully they'll have some good things to offer when we all need them.
And pearlady, thank you! Just the pep-talk I needed. It's so hard to live with this kind of uncertainty, and I really found the tumor markers going up (again!) hard to take. Glad to hear you found success after the same!
Going in today for bloodwork, hopefully enough white blood cells to start up with the Ibrance again. Also getting an ultrasound of a new lump in my (former) breast--onc thinks it's probably fat necrosis, but wants to be sure. Hard to get too worked up over it, though, because what's the worst thing they can tell me, that I have cancer (ha!)?
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Celebrated my daughter's high school graduation last night. My son is entering 8 grade and she's off to Bucknell University in August. Living for their graduations in 2019 and 2020!
Joanne
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Beautiful family Joanne. Enjoy the celebration. Myra.
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UPS package of drugs arrived. I wasn't expecting such a dramatic interior bag however.
*susan*
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More gorgeous family photos. Love it! Thank you, Joanne.
Susan- yes, isn't it funny how large the shipping container is for such a small bottle of 21 pills? Mine came in an 8x12 cooler, with ice packs!
Good luck today, Rosestoeses. I'm going in for my mid-cycle CBC today, as well. I hope they let me keep going. I'm on the 100mgs, so it should be interesting.
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Ha, Susan, my Afinitor used to arrive in that same bag!
Roses, thanks for the links. I will check them out and see if they are getting any early results that can help my case.
Joanne, gorgeous family. Congrats to you and your daughter! Here's to hanging in for the next milestone! I've got June of 2022 on my mind!
Today is a new day. Yesterday is in the past. Right now, I'm enjoying the smell of fresh brewed coffee. The summer pattern of fog in the morning is outside my window. June Gloom, as we call it. It's familiarity makes me smile.
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Beautiful family Joanne. Thank you so much for sharing. I don't know about the rest of you, but I get very emotional when I see these beautiful family pictures. Hoping we can all celebrate with you in 2019 and 2020.
Susan my Afinitor also came in the same type of package. I'm glad you reminded me. I have to re-order today from CVS Caremark and will make sure that the Ibrance/Femara is packaged the same way.
Hope I'm anxious to hear the results of your discussions with your onc. And yes, I love fresh brewed coffee also. And the best news is that now they're finding that coffee does have health benefits.
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Fresh brewed, organic coffee....
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Hope sounds good right now. We do organic Costa Rican at home.
The coffee in my office is so terrible that it keeps me drinking less coffee during the day. I can buy organic across the street, but sometimes get too lazy to go outside.
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Hi Ladies,
I've read the whole thread. I will rephrase my question:
Has anyone here tried Femara (Letrozole), had progression, and is trying Femara (Letrozole) again but this time with Ibrance?
Thanks.
Brenda
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Brenda,
I was a femora virgin until 2 weeks ago, so no help at all to you. Sorry.... I did do Aromasin for 7 years but that is just not the same.
*susan*
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Hi Brenda,
Yes, I believe Pearlady did take Femara many years ago and was put back on it with Ibrance. I'm sure she can offer more details.
Joanne.
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Adnerb I did take Femara/herceptin for almost 5 years before progresion. So now now getting Femara with llbrance.
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Lovely family, Joanne, congratulations on the exciting events!
Adnerb, sorry, this is my first time on Letrozole.
Thanks for the well wishes. Haven't heard back about my counts yet, but I'm running into trouble with the pharmacy getting the 100mg Ibrance (was covered under Rx plan with one network, now, I'm told, covered under medical not Rx with a different in-network specialty pharmacy, ugh!), so regardless the return to Ibrance will have to wait. On the good news side, the breast lumps are simple cysts and complete non-issues, so that's some good news for today.
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Some really good news Roses. Myra
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I failed Femara/Faslodex about 18 months ago, Brenda.
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Just popping in to say hello. Lovely to see the photos and hear about celebrating milestones.
Susan, RosesToeses, and others who have had trouble getting the drug shipped-- I also seem to spend a lot of time these days making sure other people are doing what they are supposed to do. I had to make sure my nurse would order my new dose and the pharmacy would ship it in time for me to pick it up and start on the right day. It wouldn't have happened if I hadn't been thinking ahead and making calls. If my blood tests are to be done on the right cycle days, I have to start the cycle on a certain day of the week to coordinate with my onc's two clinic days.
I'm still trying to get a predictable schedule and some answers about when they want blood tests done and when the doctor wants to see me. Do you guys have a predictable schedule for blood tests and visits? Or am I being unrealistic? I can't be the only one with other things to do and a long drive to the cancer center.
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Ladies, as hard as it is to recommend I think we should be more patient with the whole medical world on Ibrance. When I was started on it, I was the third patient that the physician had prescribed it for. She said it was so new that none of her resource described the various mg. dosages. When I got it from the specialty pharmacy, the contact person said it had been approved so abruptly that the pharmaceutical company had not had enough warning to produce informational pamphlets. Even my very experienced MO was a little shaky on the exact protocols for timing of the labs to be drawn. In addition, the drug is so relatively rare that only specialty pharmacies dispense it It is listed as an anti tumor med which is why it is delivered like it as if it were plutonium. Anyway, I am thrilled to bd on it and hope it is my ticket to a long period of non progression. Carolyn from Music City
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