Ibrance (Palbociclib)
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BLMike,
I am on cycle 33 of Ibrance/ Letrozole. My MO switched me to 100mg after 1st cycle mainly because my platelets went too low. ANC was also low (absolute neutrophil count).
My main SE is fatigue and the worse hits around Day 26 and goes into Day 3 of Ibrance cycle. I listen to my body, slow down, nap, catch up on favorite shows, read. Believe it or not, walking helps with fatigue throughout the cycle. (I just went for a long bike ride with DH..).
The Ibrance puts your platelets, red and white blood cells in a holding pattern. This will kill off the cancer cells, but not your other cells. They resume maturation the week off. Because of this..it is NOT like chemo where all cells die.
Give it a good 6 months like Iwrite said. It took 9 months for me to reach NEAD..no evidence of active disease. But stable or regression are both good too. Don't forget that important piece of info.
My DH and I camped across US last summer. My MO wrote lab orders in advance and I went to outpatient labs at nearby hospitals. The results were faxed. I am rarely sick and I use hand sanitizer when in public spaces. My DH and grandkids are the ones that seem to always be sick! So it appears my immune system is fine.
I am a good responder. Others have moved on, but they have found treatment that works for their specific cancer long term.
So please tell you wife not to get discouraged. Maybe she will join us herself!
One last thing..when she feels good..get out and do stuff, anything, just get out of the house. She has a lot of living to do!
S
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Mike, I agree with the above posters. SE non-existent for me, even after 37 cycles.
I don't get infections or viruses from low white count. One thing I would watch for when flying is lymphedema. No one at any of my doctors warned me about that. I got it on my first flight. Talk to them about compression, at least of cancer side arm, when flying.
The scan at three months may be too soon to show results. My first was at five months.
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Mike, I join the crowd of people with relatively manageable side effects and feel so lucky for it. Having travel to look forward to is what gets me through most days. I'm nearing three years on the Ibrance/Letrozole combo and have in that time camped in Yosemite, traveled to Iceland in winter, went white water rafting in Montana, ziplined in Costa Rica, and am getting ready to go to Italy...I am rarely sick with a cold or virus but I also wipe down plane trays as others have mentioned, don't touch door handles or railings with my hands (i picked that up while living in NYC and then again while on chemo), wash my hands a lot and drink as much water as possible, and I make sure to rest so that the fatigue doesn't get the best of me.
For me, the trick has also been to build in recovery days. I am recently back from that 3 night camping trip to Yosemite as a single mom, and after we returned I needed a day and a half of easy, lazy, restful time to recover. I also planned way ahead so that the preparations didn't use up all of my energy.
If travel is something that she loved, and after a couple of cycles she gains confidence that she feels generally okay, then I hope it's something that she'll consider.
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One more thing about the travel....consider travel insurance to cover medical and to help get her home should she become sick while away. I've found that I'm able to purchase it at the same time as my plane tickets and not have problems with the whole cancer thing.
It's good for piece of mind.
I also travel with a Z-PAC and my doc's cell phone number just in case.
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Mike...
I am just about to finish cycle 2 of Ibrance. I also get Letrozole (which I just today finished month 2) Faslodex and Lupron and Xgeva. Ref SE...:
I have some fatigue. I am seeing my hair thinning a little. I am more on the constipated side then the other side. I have had hives come and go now (dr. thinks that the Xgeva) .
The biggest concern with airplane is if you wife White Blood Cell count is low..and you won't know that by the way she feels only from the blood they take. I felt 100% fine after the 1st month on 125mg of Ibrance and my WBC was low. Even after the entire week off it my WBC was still low. They lowered the dose for this past month to 100mg I have a feeling it may still be low but I am hoping it wont.
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Thank you so much IntoLight, Rosie24, SandiBeach57, jaycee49, jensgotthis, NicoleRod.
Great idea to carry the sanitary wipes, to have a mask on hand, and to liberally use hand sanitizers. The idea of carrying a Z-PAC and planning in recovery days are things we hadn't thought of, but are excellent ideas – my wife is already experiencing some fatigue -- really for the first time in her life – so I think recovery days are going to be increasingly important.
It's very helpful to hear the details of exactly when folks got their SEs and how bad they were – it's all about expectations! Similarly, it's good to hear when folks saw some improvement – sure, everyone is different, but I don't want her panicking if (when?) that first scan isn't clear.
I'm an information and data gatherer so I just can't say enough about how extremely helpful this site has been. This whole situation is overwhelming to me as a spouse: frankly, my wife is handling it better than I am. Getting encouragement and hearing about the experiences of those of you who have gone before is invaluable. Thank you so much for sharing.
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hi Mike,
Your wife is so lucky to have you!!
I’d love to add that I also travel with a z-pac nationally and then also cipro when going somewhere where there’s a possibility of travelers diarrhea or something of the like.
If it helps to hear, since my diagnosis and starting Ibrance and letrozole and Lupron and Xygeva over two years ago, I have gone to portland twice, Trinidad and Tobago twice, Italy, Maine, Jamaica,, Vermont and lots of other little journeys without any issues.
The biggest issue was coming back from Jamaica, I was sitting next to an elderly woman who had the flu. I did not have a mask and I ended up getting a little bit sick a couple days later.
I definitely wash hands a ton! And I am more careful about eating raw meats and fishes like sushi...I just don’t want to risk a bacterial infection.
I love the thoughtfulness of having recovery days. I think that I have definitely found that need to be true. Like in the past, I could have done a 6-mile hikes two days in a row. Now I need the next day after a 6 mile hike to chill out. My body and mind tell me when to rest...I have either ended up crying because I’m tired and don’t know it, or simply sleeping and having no energy.
Side effects for me have come and gone as well - the dance of it all is that the side effects really do come and go and I have learned to remain calm in light of it all. It was scary at first.
I love information gathering!!
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I agree with taking those recovery days, too, after a busy day, or even a busy activity, and I’m happy to read that so many of us do that. It’s self care and a very smart approach.
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Someone asked me a question a few days ago, and I have not gotten back to you. I scrolled through the last few days, but cannot find it. Please ask again and I promise I will get back to you right away. Thanks Kitt
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BLMike - I think the advice you got about travel is really great and spot on. My doctor is very supportive of me doing anything that I want and his PA really helps me to think through precautions. I travel with a small pharmacy of 'just in case' meds - including antibiotics am due anti-virals from my doc, but also OTC stuff like Imodium and benedryl (I've had facial swelling twice with Ibrance and benedryl takes care of that stuff). I buy small ziplock pill bags from Walgreens and only take a few of each in labeled bags so I don't waste space with bulky packaging. I also carry tons of wipes and I wipe plane seats down top to bottom, not just the tray. I also wipe tabletops at restaurants and anywhere else I put my hands.
I think the most important advice is to not over-plan your trip. Allow recovery time while traveling too... I used to plan 10 activities per day and now i make a loose plan about things we'd like to do and pick as many as I feel like doing that day. I also pay for things like VIP passes so I don't waste energy standing in long lines.
As Jen said having something to look forward to is not to be underestimated. By all means make a plan to travel and GO!
Love to all,
Lauren
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Mike, plenty of great advice here. I, too, love to travel, and have had no problems at all (starting cycle 26 today). In fact, my husband is thrilled that I'm willing to do more now than before I was diagnosed! I've always been more of a lay-in-a-hammock-with-a-good-book kind of girl, while he was out having adventures, but now my attitude is, if I feel good, I'm gonna do it!! Since diagnosis two years ago, we've been to Vegas, Florida, Nova Scotia, Italy, Greece, and taken two cruises. I've gone ATV-riding in the desert, parachute simulating on a cruise, hiking all over the place, and even climbed a mountain to see the Acropolis in Athens last month! Took a lot of naps, too, but I had FUN!
I did fine on the flights, bought compression socks but took them off in the airport before even boarding the plane (I have rather large legs, and the pain was excruciating, LOL). I got up and walked a bit every hour or two, and did just fine. We also travel with a Z-pack of antibiotics, but we always did - my husband is a pharmacist, and we've always carried a well-stocked "just in case" box. It never occurred to me to bring wipes or wear a mask - and have had no issues.
Tell your wife to enjoy herself! As my oncologist told me, Stage 4 breast cancer isn't necessarily a death sentence, for those of us lucky enough to take drugs like Ibrance, it's now a manageable condition. Manage it, and live your life!
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Curious to know why so many of you wear compression socks on airplanes.
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Mike...I would say tough if WBC is low I personally will not fly until it is back at healthy levels. We too want to travel but I will get on a plane until my WBC is at a good level because if we went on a vacation and it was low and I did get sick from the flight that would just ruin the trip anyway. I mean why risk getting sick on top of all this. Once the levels are good then there really is no risk and you can be relaxed about flying and not have to risk losing days due to sickness.
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Divine, my reference to compression was for my arm. My PT, after lymphedema dx in my cancer side arm, said I should have been wearing a compression sleeve on any flights at that time, soon after surgery, radiation and chemo. My MO and nurses knew I was flying to my son's wedding. I talked about it non-stop. No mention of lymphedema. HUGE mistake on their part. But for Mike's sake (and his wife), it is only a problem with lymph node removal. I don;t know if she had that. I had all of mine removed on the cancer side so the risk was high. Someone should have told me. My surgeon never mentioned it. My RO never mentioned it. My MO never mentioned it. I think patients should be warned. My PT was appalled that no one did. I just want Mike and his wife to know. My experience should at least be worth that.
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My WBC runs about 2.5 average and my ANC hovers around 1.1. Platelets around 70k amd HGB around 10.
I use hand sanitizer and I am rarely sick. I actually feel pretty good. Maybe my body adapted to this new normal.
Don't be afraid. Get out and have fun.
S
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Divine, I wear compression tights (the socks are not comfortable) on long flights because we are at higher risk for blood clots just by having cancer (and by being a woman, and if we carry extra weight like I do). If ankles swell at all at end of day or after flights, then it's a good idea. It was my NP who told me that compression tights will keep my blood moving just as well as the compression socks. To me, they just feel like leggings that are a little snug. (I should add that I have had blood clots in the lung since dx - I wasn't so careful before then and all was fine)
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Divine, My onc recommended compression socks for flying because one of the known SEs is blood clots. Those who recommend getting up every hour are correct. I have forgotten them a time or two and did get up a lot and never had a problem, but if I fall asleep on a long flight I don't want to have to wake up just to walk. I never had lymph nodes removed so I can't speak to that, but I am the cautious type so wearing the socks seems a small price to pay. It is wise to get ones that fit correctly. You shouldn't be in pain when you wear them.
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I have had a pressure sleeve since I had a number of lymph nodes removed during surgery. I was told to wear the sleeve on long journeys whether plane , car, coach, train and if visiting somewhere with high altitude. It is tight but you need to get it fitted so it is the the correct size for you, it definitely should not hurt.
This link takes you to a British National Health Service information leaflet about deep vein thrombosis, it is quite brief.
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Thanks, everyone, for the explanation of the compression sleeves, socks and tights! Very insightful.
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I have traveled since I have been on Ibrance. If it is a major trip involving a long flight and a longer stay - 2 weeks plus - i have stopped my I brance about 10 days before I leave, then start it up again when I get back. No problems at all. A month off os Ibrance is no big deal and no adverse affects.
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Good to know, Time!! I had a major dizzy spell hit me in Bilbao, which I think must have been caused by Ibrance. My neutrophil count had been very low before I left, and taking a further two days off (after the week off) did not increase the numbers, so my onc sent a note to stay off another week then re-test. However by then I was already in Portugal, so I decided to continue the Ibrance (had been another five days off). After five days of re-starting the Ibrance, I woke up and the world was wildly off-kilter; I was OK lying down but had big trouble walking around like that all day. Not sure how Ibrance might make you dizzy, but hoping it wasn't brain mets I stopped the Ibrance. The next day we had a very taxing climb to the island where part of game of thrones was filmed, and hiking back up the hill (equivalent to walking up 65 stories) I was wiped out, dizzy, on top of being way too out of shape for this tour!! Took me like an hour and 30-40 minutes to climb up, however, about an hour or so later, not only did I feel great from the endorphins, the dizziness had completely vanished. I took off a few more days then back on the Ibrance no problems. So I don't think low neutrophils can make you dizzy, but something did- I see you can also get low red cell counts as a side effect, maybe it was that?!
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So I am wondering if it would be a good idea at this point to switch to Abemaciclib? I've been on Ibrance four years, could moving to a somewhat different drug help prevent development of resistance? At least, it does not have the problems with low neutrophil count..
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Curious, i hope you enjoyed your vacation. Welcome back. I recently read of a theory (maybe it was a study) where you change drugs before resistance or mutations develop. Kind of cycling through them repeatedly even. No mention of how long on each different drug. I think it was in reference to traditional chemo cause it was in reference to cancer in general. I see MO next week. Not a good chance I'll remember to ask.
GAILMARY
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Hi All... Just got back from my MO my Neutrophil count was 1000!!! YAY!!!! So hopefully the 100mg Ibrance will be the magic number.
My whole life I always had a slightly elevated bilirubin and then in Feb and March this year when I got my BMX it was irconically normal level. Today the nurse said it was a little elevated. I didn't see my MO personally today (miscommunication about the appt on my part no biggie)but I emailed the nurse and asked if she could ask the Dr. about it. She wrote back and said this:
Her and I spoke about it after your last visit and she wasn't concerned; it is also only your indirect bilirubin which is elevated and not your total bilirubin. All the rest of your liver labs were normal so we will just watch this for now.
Your Indirect bili and your last visit was 1.4 and today it's actually 1.0. The high normal is 0.9, so it is essentially normal.
So I guess that's good??? Any input? Also I was wondering if cancer cells dying off could cause levels to be slightly higher? (wishful thinking, I know.)
Nicole
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Cure-ious - There is no way I could walk the equivalent of 65 flights, let alone while feeling dizzy! Bravo to you! I have had a few light-headed spells on Ibrance. They don’t last all that long and are generally associated with getting up quickly. I do think low red counts can cause this. My reds fall below normal every month - sometimes well below normal. My doctor says that’s typical for Ibrance and not to worry but that i will probably feel weak when it is low.
So wasn’t it you, Cure, that posted a few articles about the merits of switching up the treatments prior to progression? I remember reading it and the theory of keeping your cancer cells confused makes a lot of sense. I think there were a few trials around this concept as well. Maybe try it be following one of the trial protocols?
Nicole - so glad your blood is behaving on 100! Your nurse’s explanation on the bili makes sense to me but I am no expert in this value.
Love to all,
Lauren
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Thanks, Lauren, the problem with switching drugs up to prevent progression is that we just don't have any biomarkers or protocols to tell us when to switch things up, we just have to invent this stuff on the fly. I'll let you know what my MO thinks about the idea...
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A new approach for immunotherapy is discussed in today's NYT. In short, cancer cells express a protein on their surface, CD47, which shields them from being attacked as foreign by the immune system. So there is a lot of excitement about making antibodies to CD47, which in principle will "unmask" the cancer cells and help the immune system get at the tumor.
To circumvent the problem that its hard for the immune system to fully penetrate solid tumors, a new approach was developed. First, because the anti-CD47 antibodies are rather large, they made smaller proteins that consist of just the relevant part of the antibody, called nanobodies. To get the nanobodies into the tumor, they engineered bacteria to express them, and also engineered the bacteria to suicide when they get really crowded (as happens when they get into necrotic tumor masses), which both releases lots of the nanobodies and also leaves a lot of bacterial remnants in the tumor, which further attracts the immune system. They did get evidence for the abscopal effect working as well, where the immune system not only attacked the targeted tumor, but was able to identify and attack distant metastases. It works well in mice with lymphoma, and now they will test other cancer types- its not clear how long till the technique is ready for prime time:
https://www.nytimes.com/2019/07/03/science/cancer-...
https://www.medicalnewstoday.com/articles/325665.php
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Cure- whoa! That is mind blowing and exciting. I wonder, since the article states the human body is bigger, if the bacteria can be injected into multiple tumor sites. I, too, am curious as to what your MO will say.
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That sounds exciting. Hopefully it won't take too long to get it ready for primetime. I am also curious as to what your MO says. It seems to make sense, then you could go back to Ibrance at a later time.
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Wow thanks for explaining that so eloquently Cure-ious!!
Anyone know if Letrozole, Ibrance, Faslodex or Lupron can make your pee smell funny?? I had my injections yesterday..and my pee has a weird smell..I am not dehydrated as I have already drank 50 oz of water today and 45 yesterday.
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