Ibrance (Palbociclib)
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Cure-ious another great find. Thank you!
Penny
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Cure-ious,
Thanks for posting that interview. If I have the choice, I think I'd like to stay on Ibrance and switch out Letrozole for Faslodex. I really like Ibrance and hope I can stay on it a very long time. I'd rather do Versenio/Letrozole than switch right away to Xeloda.
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I am a person who compartmentalizes. I usually post emotional things elsewhere and post here about more specific medical questions. So bear with me, this is a combo of both....
Today I was working on putting together a bookcase. You know the ones that you buy in a box store and have to put together at home. I worked for a couple of hours on it and then sat it aside unfinished to complete another day. I got to thinking.... I used to work a 12 hour shift in a very physically and mentally demanding career. Now, I get tired after a couple of hours.
My cancer is stable based on the scans-- CT shows liver met is stable at the same measurements and the bone mets sclerotic, the PET shows no uptake, the Bone Scan shows minimal uptake. So my tumor load (?) should be low. The cancer is under control. So does this mean that the fatigue, the aches, all of the yucks I feel is the result of the meds that are keeping the cancer controlled? I know there is a Thread called " Life does not end with a Stage 4 diagnosis", or something like that. I know I have read on BCO about people continuing to work full time, have a family, hike, bike, etc. I just think back to 3 years ago (before cancer and when I worked full time) and feel like I am a different person physically. There is no way I could work that 12 hour shift job anymore. I don't think I have gotten lazy or deconditioned. Sometimes I can feel my body slowing down, breaking down.
For the ones that have been on Ibrance for 25, 30, 40 cycles, do you find yourself feeling like this? Does it make sense that the cancer may be stable but the prolonged treatment can wear a person down?
I am wondering if the treatment is worse that the disease. I know if I stop the treatment the cancer will grow, so stopping the treatment would be foolish since the cancer is stable. I guess I am thinking QOL.
Am I alone in how I am feeling?????0 -
Candy, I have been reading but not responding for awhile because my emotions have been on a roller coaster, but I need to respond to your post. I have been off all meds for two weeks while I enjoyed a visit from my son's family with his three sons. This means I got to enjoy my four grandchildren (ages 1 - 6) all at the same time, which only happens about once a year. It was joyous. I also got to meet my three new half-siblings I didn't know I had until last September. I am also switching to new meds starting tomorrow so my onc and I thought this two-week break would be a great idea. I was on Ibrance/Letrozole for four years, about 52 cycles, and I did very well until my last two scans showed liver progression, and two new bone spots. I expected to feel much better during my med break, but I was wrong. I don't feel well at all. The fatigue has not improved and is worse, and today I am nauseous and have a headache, which have also been getting worse this past week. Perhaps it is nerves about tomorrow, or something else, but I doubt it. Just wanted you to know i doubt long-term Ibrance use is the culprit. I actually was feeling pretty decent for the past six months, until now. Emotionally, long-term medicine such as we here all experience is mentally and physically exhausting and I feel your pain and discouragement. Some can continue to work, but I couldn't. But I would encourage you to keep seeking your best treatment, and squeeze all the benefits you can out of a medicine that works, and keep looking for small blessings of joy in every day. I am only one person here, but I know I want to leave a legacy of love for my family. You are a special person to many and deserve all the best. Chris
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candy...I feel the same as you. My tumor was/is in my sacrum so that did make it difficult walking originally, however that area has lessened pain but my knees, ankles, feet and even my arms just feel so much weaker. I hate to complain about it because I'm still alive, but I can't walk for any length of time without being in pain. I feel the meds have put a strain on all of my joints. To make matters worse, I did something to my knee getting out of the shower...I felt a pop. I think it's because my joints are so weakened that it made that easy to happen. But of course the thought goes to my mind that maybe I have cancer in my knee. But yes, I feel like I'm 80 and I think it's mainly due to the meds that are keeping me alive.
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IntoLight...I understand what you're saying but I think the effects of the drugs stay in our system for awhile and I also think drugs affect people differently.
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Candy,
I'm just on Faslodex right now....getting better from my bad Verzenio experience but I seem to have NO reserves. When I get tired, I just kind of hit the wall and feel spacey. My life has changed significantly. The other thing I've noticed is that if I don't continually do strength training as in yoga and pilates, I get much weaker in the legs and back than I used to. It's a constant project. I guess we have to accept the "new normal." But we're alive!!!
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New triple therapy - Palven trial in Australia
'The promising preclinical results for this "triple therapy" have underpinned a phase 1 clinical trial in Melbourne that is combining venetoclax with hormone therapy and CDK4/6 inhibitors in patients with ER+ breast cancer.
Killing 'sleeper cells' may enhance breast cancer therapy
by Walter and Eliza Hall Institute of Medical Research
The anti-cancer medicine venetoclax could improve the current therapy for estrogen receptor-positive (ER+) breast cancer—the most common form of breast cancer in Australia—according to preclinical studies led by Walter and Eliza Hall Institute researchers.
The research team showed that venetoclax could kill breast cancer cells that had been "put to sleep" by a drug that blocks cell division (called a CDK4/6 inhibitor), which is currently used in combination with hormone therapies to treat ER+ breast cancer. The research, which used breast cancer cells taken from patients, was the first to show that venetoclax could kill sleeping, or "senescent," cancer cells.
The promising preclinical results for this "triple therapy" have underpinned a phase 1 clinical trial in Melbourne that is combining venetoclax with hormone therapy and CDK4/6 inhibitors in patients with ER+ breast cancer.
Dr. James Whittle, Professor Geoff Lindeman and Professor Jane Visvader led the research, which was published in Clinical Cancer Research.
Killing sleeping cells
Around 70 percent of breast cancer cases in Australia are estrogen-receptor positive, meaning they will grow in response to the female hormone estrogen. The current "gold standard" therapy for treating these breast cancers on relapse is a combination of anti-hormone therapy—which prevents estrogen signaling—plus a medicine called a CDK4/6 inhibitor that blocks cell division, said Dr. James Whittle, a clinician Ph.D. student at the Institute and a medical oncologist at the Peter MacCallum Cancer Centre.
"This current therapy works well in slowing cancer growth, but it does not actually kill the cancer cells—it just sends them into a sleeping or dormant state, called senescence," he said. "This unfortunately means cancer relapse is virtually inevitable. In fact, the majority of breast cancer deaths in Australia are from patients with ER+ breast cancer.
"If we could find a way to kill these sleeping cancer cells, we might be able to help patients live longer. To do this, we looked to medicines that directly block the proteins that help cancer cells to survive," he said.
The team examined whether ER+ breast cancer cells were sensitive to venetoclax, an anti-cancer medicine that inhibits the cell survival protein BCL-2. Venetoclax is in clinical use for treating certain types of blood cancers, and in clinical trials for a range of cancers including breast cancer.
"We discovered that venetoclax could indeed kill ER+ breast cancer cells that had been treated with a CDK4/6 inhibitor—even those that were senescent. This was an exciting result as it was the first time that venetoclax has been shown to kill senescent cells," Dr. Whittle said.
Triple therapy threat for tumors
In several laboratory models, including those using ER+ breast cancer samples from patients, the researchers showed that adding venetoclax to the combination of hormone therapy and a CDK4/6 inhibitor led to a better and longer-term response of the tumor to the therapy, said Professor Lindeman, who is a clinician-scientist at the Institute and a medical oncologist at the Peter MacCallum Cancer Centre.
"These promising results provided a justification for starting clinical trials to look at a "triple therapy" combining venetoclax, hormone therapy and a CDK4/6 inhibitor in patients with ER+ breast cancer," Professor Lindeman said.
"We have initiated the phase 1 PALVEN trial which will, in the first place, look at whether this triple therapy is safe for patients, and will also consider how patients" tumors respond to the triple therapy.
"It would be wonderful to see a new therapy that improves the outcomes of patients with ER+ breast cancer," Professor Lindeman said.
Please note that due to COVID-19, the PALVEN trial is currently not accepting new participants.
https://medicalxpress.com/news/2020-05-sleeper-cel...
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Lucia...that sounds very promising! Thanks for posting!
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great reading, thanks Lucia for sharing this. I hope scientists will find a way to treat for cure stage IV soon.
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Ibrance question: I know Ibrance literature states to not consume grapefruits much like many blood pressure meds direct users to avoid grapefruits, too. And I have read on a post here that we should also avoid limes.
My question is, can we consume limes on the week off Ibrance?
Thanks
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Lucia,
Thanks for posting about Venetoclax! PALVEN is for firstline therapy, no prior CDK4,6 inhibitors allowed.
There is also a phase two trial going on, called VERONICA, where they are trying Venetoclax and Fulvestrant. You have to have had 1-2 prior therapies, at least one of which should have included a CDK4,6 inhibitor. Prior Fulvestrant is not allowed, There are also sites in Canada, UK. Germany, Australia. Wish this trial included an arm with Verzenio...
https://clinicaltrials.gov/ct2/show/NCT03584009
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Sadly, VERONICA trial does not allow any prior chemotherapy.
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also does not allow prior Fulvestrant?!
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Just back from oncologist for scan results, after 4 years on Faslodex, plus 2 on Ibrance it's time for a change. A significant growth of cancer in lymph nodes and more in my right lung. No sign of disease in my bones or liver.
I am going to have a biopsy and genetic tests on one of the new growths before a decision is made about medication. In the meantime radiation on an area where a nerve in my back is being irritated and causing pain.
I feel sick but not surprised, I am going to try and enjoy the next couple of weeks free from side effects before the onslaught of new drugs, whatever they are.
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Thank you to all who responded to my post.
IntoLight- I do plan on "squeezing out all the benefits I can" from the I/L treatment. The next treatment might be worse for me. I am not giving up. That would be stupid on my part. The cancer is stable. I just do not understand how the cancer can be doing good, but I feel so yucky. If the tumor burden is low, and it is not the cancer circulating in my body that makes me feel this way, then it must be the side effects of the meds. I just sit and think "Wow. I am not feeling sick from the cancer, I am feeing sick from the meds". And Yes the long term effects of fighting the cancer-- the scans, the uncertainty, can cause depression (I have some depression, I know), but this is physical--- the pain, the nausea, the fatigue. So I know it is not just the depression. I am sorry you could not fully enjoy your treatment break. And I pray for you in your next treatment line. May God give you strength and an easy treatment plan.
Jack5ie- I know what you mean about hating to complain when we are alive. 3 years ago I had a baseball size tumor on my liver. Now it is 1.5cm and stable. I am glad I have had the last 3 years. I just hate how these meds make me feel.
dibel- Yes to the "hit the wall and feel spacey". I walk on the treadmill 2-3 times a week---slow, not fast, for 20 minutes. Even on the days I walk, I still feel crummy. I do it because I know it is good for me. But I don't get a "high" from exercising. In fact, I hurt afterwards.
denny- Praying your next line of therapy is kind to you.
Edited to add--- I just wish, when the cancer is stable, I felt good. I could say "Hey I have incurable cancer, but it is stable and I am feeling good and living life. When it worsens, then I will start feeling bad again, but for now I am good". But, the way it is, the cancer is stable and I feel horrid. Just frustrating.
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Hi All, I'm trying to ration myself on these boards so haven't been on for a while. Candy PMd me re Ibrance scheduling and I see we have a newbie in RK2020 asking the same question several pages ago.
My Team /MO did say when they moved me to 2 weeks on and 2 off that I was the only one at that point on that schedule - started May 2018 and dropped dosages over following 5months - there are others now also on my schedule locally.
Basically they took me down to 75mg after only a few cycles as my blood counts were down at 0.6 when they needed to be over 1.0 in order to start next cycle. However I consistently recovered over the 2 weeks and also my scans were stable/ NED, so my MO basically said if this schedule is working, this is what we keep doing. The nurses had a go at trying to change the schedule / dosage to the 5 day on 2 off - but I did the sums and that means a lower dosage overall. That would however keep me on 4 weeks instead of 5 - which I think was more to do with logistics and clinics and nursing team would prefer the consistency - but my MO overrode that. I have had a 1 cycle break over lockdown, to boost my immune system, but I'm back on schedule now.
I did have to fight my corner a bit - the argument being if it's not broken why mess with it - and has won over every time so far. Good luck in having those conversations!
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denny, sorry to hear about your progression. I hope you do well on your next line of treatment.
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karenfizedbo- Thank you so much for your thorough feedback. It’s good information to take with when discussing options with my MO.
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My blood pressure and heart rate were both high again today. Can ibrance impact both of those metrics? Before I started these drugs I actually had blood pressure that was bordering on too low and average heart rate. I have to hike 15 mins up a hill from the train to the hospital and was running late but didn't feel out of breath or anything. Also this was testing again after I had consumed a bit of caffeine since the cat woke me up and I got about 3 hours of sleep.
Our new spin bike arrives next week so I will be able to slowly start more aerobic exercise than just walking.
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Sondra- I have down that you have an appt with MO this week--Thurs? Hope all goes well.
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Sondra,
I've had weird things with my BP ever since I started Ibrance, although my MO says that that's not one of the side effects. I call BS on that. For me, I get lower blood pressure than I would normally have -- which caused me to halve my BP pills at the suggestion of my internist for at least the first 6 months of Ibrance treatment.
However, one time I went to an appointment with my MO and my BP and heart rate were elevated quite a bit. In talking it through with the intake nurse, though, we figured out that I had had a faslodex shot, had walked rapidly over to the main hospital to get coffee, had downed a large cup of that, and then had walked back to the MO's office. So that coffee could have spiked your numbers -- that's what we thought had happened with me. That particular day I had not had a lot of water, either. I was not out of breath either.
So I'd keep an eye on it, but I'm guessing that it was an aberration from rapid walking and caffeine (although I still believe that Ibrance messes with your blood pressure!)
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Some BP meds (and some statins) use the same limiting enzme (Cyp3A4) as Ibrance does to get degraded and metabolized (grapefruit also ties up this enzyme). So, adding Ibrance can cause these meds to reach a higher level in the bloodstream and to persist for longer times in the body. That is one reason that BP can go low; I had to drop one of my meds for that reason.
No idea why BP would go up, tho.
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Cure-ious - The info on Cyp3A4 enzyme is interesting. I’m not on any other drugs beyond the typical cancer stuff. My experience was that on 125 mg, I would get dizzy (think about to faint dizzy) and blood pressure which is already on low side would go lower. On 100 mg my BP is normal and I am no longer dizzy. Different bodies, different nuisances, different side effects.
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OK I am typing in bold because I am screaming and I need advise yet again....Ibrance neutropenia issues again ...
So I restarted Ibrance 2 weeks ago (cycle 30) after the Zarxio shot and the pause on the Ibrance. MO wanted another lab in 2 weeks---today.
Guess what..... ANC 900 (0.9)----duh, 2 weeks into cycle, nadir is happening now---MO ordered to hold Ibrance for 1 week and redo lab. WHAT!!!!!!!!!
I told nurse I wanted appt with MO to discuss---- Why now with all these issues??? What is plan for Ibrance in my future??? That Zarxio is not recommended with CDK use. Options for tweeking Ibrance schedule--5days on/2daysoff or 2weeks on / 2 weeks off. Nurse said he would message MO if she is agreeance to schedule appt.
I am confused why MO is acting like this now. I am frustrated that the cancer is stable and they are messing with my treatment plan. Why are they acting like this?
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Lucia42 - thank you for the post on venetoclax killing cancer vs Ibrance just putting it to sleep, and that it will eventually wake up again. One more question for the oncologist. This is the 3rd round of BC for me, MO convinced that each has been a new once vs recurrence, but admits there is no real way of being certain. Started Ibrance/Arimidex Sept 2019. Tumor in R-axilla has shrunk from 2.5 cm to 7 mm. Next scan will be in July or Aug. She brought up surgery again. As long as tumor shrinks, I'll stay with the Ibrance. Just not convinced surgery will get everything, especially those rogue cells. Also worried that the axilla will be more complicated than the breast surgery was. Risking nerves, muscles, tendons, as well as, risky, worsen lymphedema.
DodgersGirls - I do not know about limes or if it is ok to have grapefruit/limes during the week off. A pharmacist explained that grapefruit interferes with eliminating Ibrance. So it might be that in the week off, that your body would retain it and you would not have a week off.
BevJen - I've wondered about Ibrance and BP as well. Generally my BP has been 5-10 points lower
Candy - I noticed fatigued immediately. I'm on cycle 10 now. It generally has been about the same, with some days better than others. I need to journal better and find out if it is better/worse consistently depending on where in the cycle I am. Sometimes it is just a tiredness other times my thighs ache as if I had been lifting weights all day. Usually I can push through it. One time I just wanted to stay in bed, but had to get up when the dog started barfing. Another time, I was glad a trail was too wet to hike, it gave me an excuse.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Urgent Care check for clot, referred me back to my MO. 8/2019 CT, Breast/chest, neck/thyroid ultra sound. 9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for). 9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed. 9/2019 Tumor 2.5 cm, 4/2020 tumor 7 mm.
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Re: blood pressure - checking the ranges, it was just above normal, but quite a bit higher than my baseline when I was in the hospital last fall. However, I think the Coke I had an hour before, the walking, its really hot here today, residual virus anxiety, the mask wearing, and just about to get a zoladex shot on top of a very stressful morning with a presentation just before I left for the hospital - maybe it added up. I have been pretty keyed up lately and walking just isn't cutting it lately for exercise, so I am hoping being able to do some other exercise (easy to start!) will help. Maybe its time to go back to Half Caff for my one cup of morning coffee!
Candy - sounds like its time to get in a second opinion from a breast-focused MO to straighten out your MO.
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Candy, I would be aggravated too. Your MO is following the new to Ibrance routine instead of the 30th cycle routine. I know all MOs have their own ways but she does seem overly cautious, to put it mildly. I hope you get through to her ASAP.
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hi Sondra, glad your BP has gone down.
It sounds as if you had an awful start to the day and carrying the extra anxiety over Covid19 it's not surprising your BP was raised, take it easy in this unusual hot period in the UK.
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