Ibrance (Palbociclib)
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WooHoo is right! Go Jen. I'm thrilled!
Pat (my cheerleader, hero, artist, comedian, brilliant and beautiful friend) is back? YAAAAAAAAAAY!
Hugs,
Penny
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welcome back Pat!!! I am so happy to see you here again and of course you are back, dancing 💃🏿 with us and inspiring and keeping hope and optimistic awake and alive with your positivity and joy de vivre! I am so happy you are back and thank goodness have such an amazing and creative and thoughtful team of doctors caring for you.
I love all the artwork you’ve shared with us, but by far this this is my most favorite piece! It is so interesting and there’s so much to look at and ponder. I could gaze upon it for hours and hours and find something new again and again!
Love and hugs,
Philly
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Thanks, Luce!! The paper reports that restricting glucose (sugar) to ER+/Her2- breast cancer cells makes them more sensitive to CDK4,6 inhibitors. The ER+/Her2+ subtype behaved differently, and for those cells restricting sugar could cause resistant cells to regain sensitivity to CDK4,6 inhibitors, but had no effect on cells that were already sensitive to CDK4,6 inhibition.
If their findings extrapolates from the lab to humans, it might be a good idea for us to tone down the sugar...bummer...
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Also your paper references an earlier report from 2017 that is quite interesting:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC54902...
In this paper, they show that drugs like Ibrance increase a process called autophagy in cells- this is a way to get rid of large amounts of cell junk and it enable cancer cells to survive and grow better when they are under the stress of chemo or targeted drugs. Therefore they speculated that Ibrance would work better if it did not activate this cancer cell survival pathway, and so they tested the effects of adding autophagy inhibitors (like HCQ) to Ibrance or Ibrance-AI in cell lines and in mice engineered to have human breast cancer tumors. They found that autophagy-inhibiting drugs significantly improved the ability of Ibrance to arrest the growth of cancer cells- moreover, these drugs also helped Abemaciclib to KILL cancer cells (abemaciclib is a stronger drug and works by a different mechanism, so that's why they got killing of cells). The data look really good.
They showed the triple combination of drugs (Ibrance-AI-Autophagy inhibitor) was stronger than Ibrance-AI alone, and that adding an autophagy inhibitor was able to restore CDK4,6 inhibition to cells that had become resistant.
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So there are now quite a few drugs that have been shown to help Ibrance work better and/or restore sensitivity to resistant cells. These include mTORC inhibitors like everolimus (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC64856...
and Sara Tolaney is running a clinical trial in Boston to test this with results expected next year"
https://clinicaltrials.gov/ct2/show/NCT02871791#co...
as well as CDK2 inhibitors (in clinical trials), and Crizotinib (c-Met inhibitor, which takes out CDK2)
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Good morning, all.
Ibrance newbie here. Tips welcome.
Tina
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Welcome Tina.
I have been on Ibrance/Letrozole for 2.5 years.
I have seen your posts elsewhere. So you were on a med hiatus 1.5 years. Was on Faslodex before, so the new med for you is the Ibrance.
Some things about Ibrance…...
Right now, capsule, take with food. Consistantly. I take with breakfast daily because I eat breakfast every day and don't have to bring meds with me when going out. In April Ibrance makers are coming out with tablets that can be taken with or without food.
Side effects can wax and wane- we call it the Ibrance Dance. I have had occasional mouth sores, constipation, GERD, hair thinning. But maybe also the Letrozole doing this. THE BIGGEST ISSUE FOR ME IS THE FATIGUE. My MO said, "when you need to nap do it". Also the low blood counts are a biggie. You will have more frequent blood tests in the beginning, then the standard is monthly blood tests. Some post here that their MO is not too concerned about infection risk as the cells are in a suspended animation so to speak. But my MO is concerned about my numbers. She is always reminding me to protect myself and to call her immediately if I get sick.
I am sure there is more to tell you, but hopefully this helps.
Keep reading on this Thread. We have wonderful women here. And you will learn a lot.
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Thank you, Candy!
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I also had the bone chill at 125 mg. It's gone since I've been on 100 mg.
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checking in to say I’ve started 5th cycle 125mg. Couple tongue sore stragglers. My biggest side effects, tongue sores which Colgate Peroxyl helps with and fatigue ( i still have trouble sleeping at night but I can nap during the day now, in fact I need to nap, I don’t mind so much because my sleeping has been so horrible through initial diagnosis til stage 4 diagnosis any additional rest I can squeeze in I welcome). I also want to mention that I have a 3rd side effect that I’m famous for addressing, gas. Air horn level gas, sometimes it’s just air, sometimes it has a little something something added to it (fragrance) but for the most part just air. Have TMs pulled in about a week, alittle off getting them pulled as we had that scramble session a few weeks earlier with skyrocketing TMs, through things off a bit.
My gas is back and your gonna be in trouble.
Heyla Heyla my gas is back.
If you see me coming you better cut out on the double.
Heyla Heyla my gas is back!
congratulations Jen and welcome back Pat!!I’m dancing and my side effects don’t lie
Take care ladies :0 -
Tina,
Lucky for you, you don't need the faslodex tips as well, since you've done it before. I was sorry to see that you are now starting Ibrance, but it's not a horrible drug at all. As others have said, there is an issue with fatigue, but that's not all of the time. I am currently in the middle of cycle 8. I would say that for at least a couple of my cycles, my fatigue started around day 13. Then last cycle, it started around day 7 of the pill popping. This cycle, I haven't been tired yet. So you just have to go with the flow. Some people have the mouth sores, some have the tongue things. I've had both at different times. I use Colgate Peroxyl rinse (CVS has a generic of that) or salt water. The biggest thing is as soon as you feel one coming on, then rinse several times per day, especially at nighttime before going to sleep. That will help. I take my pill at night, right after dinner (or as close to dinner as I can remember) but the new pills are supposed to come out in April.
The good thing is that everything with me is stable per my scans, so I'm happy with the drug. My tumor markers have been jumping around a little bit lately, but prior to that, everything was going down.
The cost is a bit outrageous, but Jaycee has listed a lot of information earlier in this thread about some organizations that can give you some assistance on the payments, so look back for that.
Good luck, and ask any questions here that you like. We are a friendly group!
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cure_ious: thanks for reading and interpreting! I’d been aware of the autiphaghy-inhibition before but reluctant to take the antimalarial chloroquine (or hydroxychloroquine) because it’s a broad-spectrum antibiotic (effectively, at least) with quite a few side effects. But, yes, I believe it would work and many people in the repurposed drugs groups on FB are taking it. It may have some activity against COVID19 also.
Crizotinib, I can’t get, at least not according to my oncologist. Asked him a year ago.
Don’t like everolimus side effects (my oncologist has been wanting to add it at low dose for a while), so took metformin instead, hoping to inhibit mtor. No idea if it’s helping and don’t particularly like it, so cut back. I think it would take 2g a day to be anti-cancer.
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Thanks for the endorsement, Bev. It would be pretty difficult to find any of my posts on grants at this point. This is a very active thread. I'd love to be able to post some info in a permanent place and leave it there. I'm sure the mods would make that possible but the info about financial assistance is always changing. It changes often and in sometimes major ways. If anyone wants info on financial assistance with the cost of Ibrance, PM'ing me is the best way. Most MO's have a person who can help and they usually do but I've had some people where they don't. My MO's person helped me with the first month and then left me on my own. She thought I could handle it and I'm glad she did because I learned so much from doing it on my own. I don't mind sharing it at all. Makes me feel useful.
Sadly, that original money person at my MO's has retired. Her whole job was dealing with insurance. She's in her 50's but she has had enough. I don't blame her one bit.
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cure_ious\luce,
Thanks for the links and information. That was interesting reads. I'm going to follow that trial along with several others.
I'm learning more each day about this awful disease. It's very complicated and sometimes hard to understand what some of these articles are actually saying. I appreciate the explanations.
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Tina,
Welcome to the ibrance dancers! Everyone is very helpful here and are willing to help with suggestions to address SEs. I am on my 16th cycle and have noticed the side effects have gotten better so hang in there.
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Hi Tina, welcome to this forum. I am on about cycle 48 at 125mg and doing ok and I agree with Simone that the SEs have gotten a little better with time but it took a long time. Everyone here is caring. No question is too silly and no response is unwanted. We love to laugh and share stories.
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Great news on my wife's hemoglobin. It has come up to 103. That was from a low in the low 60's back in January. She had to have two blood transfusions, but those only raised it by 10 points. First transfusion, 4 weeks later it had fallen even further than it had prior to the transfusion.
She has been religiously taking iron glucose supplements (prescription only) and ashwagandha. Its hard to say what has caused the improvement, because no one can say what the cause of it falling so badly back in November was.
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Tina2 - SEs are so variable, some people get them, others do not, and to a varying degree. I'm on Cycle 6, Day14. Also taking Arimidex. I noticed fatigue and mouth sores more initially, not as much now. Usually could just power through the fatigue. Regular salt water rinse helps with mouth sores. Do not know if occasional insomnia is also an SE or something else. Last night very bad sleep, but also worried about Max the cat, at the vet with kidney stones. Maybe it was the switch to Daylight savings, or maybe just one of those nights. WBC and RBC always low, as well as few related blood checks, but DR says within range for someone taking Ibrance. Tumor shrunk from 2.3 Sept to 1.1 January, hooray. Hopefully it shrinks to oblivion and never comes back.
Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric (Curcumin), Glucosamine-Chondroitin, BoneUp (multi with Collagen), Thorne (another multi), Melatonin (at night). Self-massage for lymphedema as well as therapist. Acupuncture.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). 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
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
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.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray. Surgeon said PET scan measures activity, and since it was not cancerous, why the PET did not see it, but the CT did.
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Luce and Cure-ious- I cannot understand your discussion--wwwaaayyy above my head. But Luce, when you mentioned hydroxychloroquine my ears perked up, so to speak. The reason, I was on hydroxychloroquine for Sjogrens Syndrome when I was diagnosed with MBC. I was diagnosed with rheumatoid arthritis and Sjogrens in May 2014 and put on this drug for treatment. In July 2017 I was diagnosed with Stage 2 breast cancer and in Sept 2017 they found the MBC (there all along, but not scanned until Sept). So..... I was being treated with hydroxychloroquine and still the ER/PR+ HER2- cancer still grew. And grew enough to have an 8 centimeter lesion on the liver and found in the bones. So, if I am following you correctly, the drug did not inhibit cancer growth, at least in me.
Sorry if I am misunderstanding your discussion.
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I started cycle 2 this week. Yesterday my latest blood work values were posted on my patient pirta. I had been given the go-ahead from MO to start cycle 2. Reading blood test results today, I was surprised to see that my platelet value has really dropped. Is that common?
I expected ANC, WBC, RBC, and hemoglobin values to drop (and they did) but was startled by the low platelet number.
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Brilliant to see you back Pat... not that you ever left for me, great news Bev and Jaycee you’ll always be here I hope!
Bit of a reality check for me today, form filling with my nurse practitioner... ‘ All treatment is with palliative intent’. Knew that already but hard to see it in writing after walking 30 miles up hills last week
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Dodgersgirl, yes that is common. I had to delay my last cycle due to low platelets. Are you taking any blood thinners? I'm trying papaya leaves for tea. It's supposed to improve the platelet count. We'll see. My blood tests are next week.
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Simone80– thanks for the reply. I am not on any blood thinners.
Thanks for the papaya leaves for tea tip. Will look into that.
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Candy, If I understand you correctly, you were taking HCQ (hydroxychloroquine) when you were diagnosed de novo with MBC? That would not be unexpected- in the paper, they do not see any anti-cancer activity using HCQ alone- rather, what they find is that HCQ significantly boosts the activity of CDK4,6 inhibitor (if your cancer is ER+/HER2- and sensitive to CDK4,6 inhibition in the first place). So if you take HCQ plus Ibrance plus an AI, the 3-way combo is stronger than just Ibrance plus an AI. Are you are currently still taking HCQ along with the Ibrance and the AI? If so, the HCQ may be significantly increasing the effectiveness of the Ibrance+AI.
This concept of "drug synergy" seems to trip people up all the time, but the concept is the same with Ibrance: Ibrance has no activity on its own but when added to an AI or Faslodex it makes the treatment much better, doubling the time you get on treatment (on average). But Ibrance had no anti-cancer activity when it was tested on its own, so if the Femara/Faslodex stops working, then taking Ibrance will not help anymore. For that reason, when you get progression on the combo, you don't know which drug stopped working- was it the AI or the CDK4,6 inhibitor, or both? Altho many docs assume that BOTH drugs have stopped working, clinical trials have shown that about a third of the time the cancer remains fully sensitive to a CDK4,6 inhibitor,so you can keep taking that and change from Femara to Faslodex or a SERD (whenever these become available)...
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Luce- I think you have a very clever MO- I like his idea of adding in a low-dose of everolimus/affinitor; you might not see the bad SEs and anyway they have better work-arounds nowadays, and you just need to take it for awhile to restore full sensitivity to the Abemaciclib. And in retrospect, everolimus is looking like a pretty good drug given how many prospectivel mTOR inhibitors bit the dust in clinical trials
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How strong is the evidence that adding hydroxychloroquine to ibrance plus an AI enhances its efficacy? Are there any risk to this combination?
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The study was done in cultured cells and mice, and the effect was robust but no idea if it translates to humans..
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Cure-ious & Luce thank you both for this very interesting exchange and for the links. At the moment I am 3.5 years stable on I/L and consume mostly carbs and sugar. I have a scan at the end of March. My question is if/when these meds fail should I start taking metformin or do I have to give up my beloved sugar. I would like to stay onIbrance so would also ask Onc about adding the other meds suggested.
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Cure-ious- Yes that is correct that I was on HCQ when diagnosed with Stage 4 de novo. But.... I am not on it now. After the cancer diagnosis, my rheumatologist stopped the HCQ as we started the cancer treatments. I have asked about restarting it due to untreated RA and Sjogrens and cancer doing ok. My rheumy refuses. And my onc doesn't offer any advise, she wants each doc to stay in their own lane-- rheumy treat autoimmune conditions and she treat cancer. So, cannot get anyone to agree to add back HCQ. I am doing good on Ibrance and AI -- 2.5 years and stable with organ involvement-- so I must be sensitive to CDK 4/6 inhibition.
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Perhaps its something you could keep in your back pocket, show them the paper about hows HCQ makes Ibrance work even better, and add it back in when you get some progression- I didn't see any trialsfor this as a combo but maybe more info will become available by the time you would need it, At least it can give you comfort that if your symptoms get worse and you need HCQ, it may also help the Ibrance!
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