Ibrance (Palbociclib)
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Some promising scan news to share: I had my first PET-CT scan since my Stage IV diagnosis in May, and it showed "significant improvement" in all previously identified lesions (and that was a lot - "innumerable" was how the original PET-CT report described it)! Those lesions are/were osteolytic, and they have become "more sclerotic after treatment" - which as far as I understand it means essentially the holes are filling in with new bone growth. There is also "significant decrease in uptake" in the lesions, and NO new skeletal findings or any soft tissue issues.
I hasten to add this is all my own, lay-woman interpretation of the report; I haven't yet met with my onc (will onThursday) and this is my first go-round with monitoring response to treatment. But it seems like very good response after 4 months on the Ibrance/Faslodex/Zometa combo (as well as acupuncture and medical cannabis - who knows, those might be helping too). It's definitely not NED (there's still uptake in multiple spots), but I'll take it!!Of course, as luck would have it I've got some pain today which I haven't had in a couple of months...but let's just ignore that for now, shall we?
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Congratulations Seagan! Please celebrate this. You deserve it. Bravo
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Seagan that sounds like an absolutely terrific report. Wonderful news!
Question for the group - did you have a headache early on after you started Ibrance? I'm also on Lupron shots and Letrozole. I'm on day 3 now of a mild yet totally uncomfortable headache. Hoping this is pretty normal and that it will subside.
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Also, how long did it really take for the SE to start in earnest?
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Robin,
I cannot thank you enough for your information, as well as for the good wishes for the scan results. Will do on checking the gran on the neutrophils.
Angela
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Seagan, sounds like a great scan to me!
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angela - it is weird to start on 100mg. the rule is to be on the highest dose you can tolerate. the usual reason to knock the dose down is low neutrophil count. i can't quite interprete that bloodwork, but your neutrophils are what matter and they sound fine. This is so important I would get a second opinion if the answers you get do not add up. Many GOOD doctors are not familiar with Ibrance. If you have any doubts, find a doctor with a lot of patients on ibrance.
Go Seagan! Great scan!
Jen - I had a bad headaches in the first few weeks on letrozol. They started within a couple of weeks. I started letrozol before the ibrance was approved, so I know it was the letrozol. The constellation of side effects I had in the first three cycles was totally different than what I have now. No headaches any more. The initial side effects seemed to me to be an adjustment to low/no estrogen.
>Z<
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Jen, I didn't have tension headaches but would feel weird jabs or pain in different areas of my head. MO told me it's from estrogen depletion.
Ibrance update: off of it for a month. I am STILL tired, tender scalp, burning in ribs and back comes and goes- Walking helps, cannot use hairspray or hair products that intensifies the sore scalp. A good nights sleep of 8 hours really helps. I am 80% sure I have neuropathy. I am worse on Faslodex then I was on letrozole.
Hugs Carol
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Congratulations Seagan! Great news!
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Lupron gave me terrible headaches but that was for IVF.
I mainly feel a headache before I get out of bed the third week of Ibrance. I wonder if I'm dehydrated. I feel better after a drink.
My SEs are different after 9 rounds than the beginning. They come and go. Most are minor and annoying but much better than iv chemo.
Congrats on good scans!
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Seagan -So glad to hear about your great scan. Verry happy for you!!
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jen, I got headaches on letrozole too, like a weird allergy tension headache. they subsided after about two weeks. Carol, Lately on the LOWEST dose of Ibrance I get a sore scalp too, just in spots, almost like I got bit by something. Never got it with the higher dose.....
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I've had fantasies like Faith mentions, and if I remember right Zarovka too, about quitting Ibrance and just staying with letrozole. What if, as my onc put it, "we are making you tired for nothing?" But of course there is no way to know, so we just have to look at the statistics that show better PFS with Ibrance, and ask if we are willing to take the side effects in exchange for a shot at doubling our PFS time. Yes, I am. (My therapist likes to frame these things choices we make; it feels better to have the power.)
Faith, what if you tell your friends and family that what you really want (for Christmas if that suits you) is to bike, and that you need a storage place so that can happen. They need to know it is important, and they can deal with the garage or get/make a storage shed.
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Shet- I am done with Ibrance and still tired.. So it's the combo, and you can't just blame the Ibrance! The only difference I see is I don't have the upper respiratory phlegm stuff. But wow, the faslodex really has given me some ugly neuropathy.
Hugs Carol
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Seagan, those sound like very good results, indeed!
I agree that Lupron/letrozole would be the likely headache culprit. Cyclical hormonal changes used to cause me headaches. Hey, I guess I found a benefit to being two years post-menopausal. I hope your headaches go away soon, Jen, as your body adjusts.
Maltese, ugh, I thought your scalp would feel better off Ibrance. Do you think you have neuropathy on your scalp? You know, neuropathy can take a while to get better, so if Ibrance caused it, perhaps more time will help. And you have to get enough sleep to heal.
The sore scalp feeling for me is like the soreness than happened before losing my hair on taxol. So that makes me think the feeling is related to hair thinning. Right now the soreness and the thinning seem less pronounced. Who knows why.
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Good point, Carol, that tiredness can be from the hormonal therapy as well as from Ibrance. Is neuropathy listed as a faslodex side effect?
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Please note: progression-free survival (PFS) doesn't always equal overall survival (OS). The OS figures aren't available from either Paloma-2 or Paloma-3 clinical trials. It's too bad, as OS is considered by many clinicians to be the acid test for a new treatment option. But, we take what we can get, hope for minimal or no unwanted effects and wish there's an improvement in OS too.
Best regards all, Stephanie
xxx
from Medscape - free registration required
EU Panel Likes Breast Cancer Drug, Two Others
Nick Mulcahy
September 16, 2016The European Medicines Agency's Committee for Medicinal Products for Human Use (CHMP) recommended three cancer drugs for approval at its September meeting.The CHMP recommended granting a marketing authorization for palbociclib (Ibrance, Pfizer) for the treatment of locally advanced or metastatic breast cancer. Palbociclib is specifically for hormone receptor (HR)–positive and human epidermal growth factor receptor 2 (HER2)–negative disease.Palbociclib acts as an inhibitor of cyclin-dependent kinases 4 and 6, which are involved in promoting the growth of cancer cells.
In postmenopausal women, palbociclib is used in combination with an aromatase inhibitor or with fulvestrant (Faslodex, Novartis) in cases in which the patient has undergone prior hormone therapy. For premenopausal women, the hormone therapy should be combined with a luteinizing hormone-releasing hormone.
The recommendation is based on two main phase 3 studies.
PALOMA-2 compared treatment with palbociclib and letrozole (Femara, Novartis), an aromatase inhibitor, with letrozole alone. Median progression-free survival for the palbociclib treatment group (n = 444) was 24.8 months compared to 14.5 months for the letrozole-alone group (n = 222).
PALOMA-3 compared treatment with palbociclib and fulvestrant with fulvestrant alone among women of any menopausal status. Median progression-free survival for the palbociclib treatment group (n = 347) was 11.2 months compared to 4.6 months for the fulvestrant-alone group (n = 174).
The most frequently reported adverse events with palbociclib are associated with myelosuppression, according to the European Medicines Agency. Other side effects include infections, fatigue, nausea and vomiting, inflammation of stomatitis, diarrhea, and alopecia.
Palbociclib was approved in the United States in 2015 in combination with letrozole for HR-positive and HER2-negative breast cancer in the first-line treatment and in 2016 in combination with fulvestrant for second-line treatment of the same type of breast cancer.
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Shet- No it's not listed as a SE so it could be the disease causing this as maybe it is progressing and the faslodex isn't working at all. I don't know, but it is not normal to feel this-- Neuropathy is usually in feet etc but this is my thoracic spine and rib areas right where my mets are.
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I started Faslodex and Ibrance at the same time. I had weird headaches (on the side of my head) for a while, about two weeks in. Also, a 24 hour period of flu-like symptoms.
ETA: forgot: my skin is super dry, and my fingertips are like sandpaper.
Just finished my second week off of Ibrance. Hoping my blood counts come back up enough to restart soon. I got the next lowest dose: 100 mg.
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Shetland - I used to have fantasies of getting off ibrance. But my Ibrance side effects have settled down. I am on the 3rd week of my 8th cycle of ibrance and there really is no difference in how I feel any more over the course of the Ibrance cycle.
My fantasy now is to get off letrozol. Long term, letrozol has been responsible for more side effects like increasing muscle weakness, nasty hot flashes, fatigue and bone and muscle aches.
Unfortunately, even my alternative oncs see me on letrozol for a long time. The alternative oncs can take or leave the Ibrance, but they are quite firm and united that I stay on hormone suppression for a long time as long as it works.
My fantasy that I might enjoy estrogen again will stay a fantasy for a long while. I have spent the week exploring modalities to manage the letrozol side effects. I had acupuncture and lymphatic drainage today. Tomorrow I go to a naturopath that specializes in balancing hormones in menapausal women. I am feeling tired but in a relaxed sort of way and relatively pain free tonight. Feeling hopeful I can come to terms with living estrogen free for a while.
>Z<
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Hi Zarovka,
All hormones, including sex hormones, are powerful substances!
I honor your desire to put letrozole behind you, while respecting your practitioners' reasoning to keep you on it.
Do you read bco's femara topic? There's much discussion (262 pages!) and help there, including an ongoing exploration of the different generic formulations. The information is buried, but participants are pretty good at digging it out or starting over with newcomers who don't want to dig for it.
While I honestly doubt I'd engage femara for earlier stage disease, it's doubtlessly helped with my mets in a big way.
Do you watch your vitamin D level and keep it above 40, even 50?
You so deserve to feel better while you're busy saving your life.
Much loving kindness, Stephanie
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Zarovka, I have every single side effect from the Letrozole that you mentioned! It is definately a harsh treatment. If you get any useful tips, please pass them on. I have swallowed bottles of glucosamine and fish oil with no effect. I take extra calcium and vitamin D and my levels are good. I have found some relief with Co Q 10 which my onc recommended. But I am tired of being sweaty and achy.
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I thought Co Q 10 was for the heart. How does it help with the hormone nastiness? I'd love to know! I am taking Co Q 10 during my "off" week per my holistic doc's suggestion.
I got my Vitamin D level tested in early July. It was at 38. Recently I spoke to my holistic doc (almost a medical intuitive if you will) on the phone and she's asked me to go from 5000IU per day to 10,000IU per day for a month and then drop down to every other day (5000 then 10,000.... etc). She sensed I could use more Vitamin D. If my levels are supposed to be higher than 40 or 50, she was right! I need more! Are Vitamin D levels one of the critical ones to watch??
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Yeah it seems like Ibrance gets blamed while the anti-estrogen drugs stand there looking all innocent.
I applaud all of us who keep exploring ways to improve our quality of life while we stay on the drugs designed to improve our quantity of life. Lynwood, can you tell me more about the CoQ10 and how it is supposed to help? Z, I worry that the ideas for balancing hormones will be things that act like estrogen and therefore may be unsafe.
What a stupid idea to deprive our whole body of estrogen in order to deprive the cancer cells! I feel like I am spiraling the wrong way latelywith tiredness (sleeping poorly plus fatigue) >less exercise >more aches and tiredness etc.
Maltese, is there some sort of orthopedic specialist that can work with your onc to figure out the cause of this pain and the best treatment? I guess you'll get more info at your appointment next week
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Great scan news Seagan, I hope to be able to say the same after my scan in October. I did have good news from my cardiologist, it seems my chemo induced cardiomyopathy seems slightly better and my heart a little stronger. I'll know more after an echo, also in October. I think I'll be real happy to come to the near end of October if it's all good news, in time to celebrate our anniversary.
I also used to get a lot of headaches when I woke in the morning but just getting up outof bed and moving and drinking some water seems to make them better. I also get the sore scalp thing on occasion but I've had that for a long time before this dx. I never tried to think about what caused it but now I'm wondering if it is in anyway related to going bald in the first round of chemo. There are so many complex rhythms going on in our bodies all the time. While I fantasized about getting off the ibrance, I now believe it's the Letrozole causing all the problems. The thing I don't like is feeling like I live my life around a 3 week cycle of good days and bad days. I know it could be worse but it gets depressing to think about treatment forever.
I'm sorry for being a Debbie downer tonight, I'm tired and my throat and glands are sore, I think the teeth cleaning and crown patch after the root canal stirred up the germs floating around. I really am grateful most days because I know I've got it easy compared to so many others here but that makes me sad too, b/c you're all hurting.
Carol, I'm so sorry to hear you're still feeling tired off the Ibrance and you have the neuropathy to deal with now. You can't seem to catch a break. I think I've read about some supplements that can help but I don't remember where or what. If I find it I'll let you know. That's the other thing that seems worse lately, short term memory. It's awful! Hope the new treatment works for you though.
Shetland, nice idea about telling the kids about the three wheeler and a place to store it for Christmas. Can't believe we're talking Christmas already. Last Christmas, I was not feeling good at all and a week later started this Merry-go-round I'm on when they found the tumor in my lung. "Time flies when you're having fun" or not! LOL!!
<Z> do you get lymphatic drainage even without having lymphedema? I always thought that it was only used for that, but I'm going to start using a new massage therapist, since my old one is retiring and I'm told she does the lymph drainage for anyone. I'm thinking I might try it.
Well, dear friends, I've gone on long enough. Have a peaceful, pain free night.
Hugs to all, Faith (in the future)
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Eelder, I'm working with a doc to reboot my innate immune system that is responsible for killing cancer cells and he has said to me that Vit D is the critical element to our immune system working. I'm on 12000 IUs to get my level up from 18 to somewhere between 50 and 65. Hoping to go down after I get there. I take a liquid version of D3 and it's oily. Yuck. (Also, Vit K helps us to metabolize the D
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Interesting Jen, thank you. I had read that Vitamin D was important, but perhaps even moreso than I realized.
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I also take 12,000 IU of D per day and my Complementary Onc (CO) monitors my D levels to make sure they are above 40.
My CO has me taking 400mg per day of highly bioavailable coQ for it's anti-cancer mojo. Here is a typically conservative summary of what coQ 10 does from the NCI. Of all the supplements I take CoQ10 has the weakest support for direct effect on cancer, but it can protect the heart and strengthen the immune system which is all good.CoQ10 has done nothing for hot flashes for me.
I don't stop any supplementation while on Ibrance.
I did have acupuncture today. My first. She did a short session and relatively few needles. She greatly reduce a pain that I had in my hip. I have had very few hot flashes today since the visit. So hot flashes are not gone but it improved. And it was a kind of intro/getting to know you kind of visit. So far so good on acupuncture.
I read about lymphatic drainage for people who have developed lymphedemia after the lymph nodes in their armpit were removed, and I thought: Hey, my lymph nodes were not removed, but they are supposedly completely infested with cancer and dysfunctional. Wouldn't that effect the lymphatic systems ability to move lymph around and generally combat the cancer. I asked my oncologist about it. She promptly wrote me a script to go see someone who does lymphatic drainage. She agrees that it doesn't take surgery to screw up your lymphatic system.
This specialist measured my arm and found that I did have lymphedemia. My lymphatic system is not working right because of the cancerous lymph nodes. I did quite a few sessions. It was mild, but lymph was in fact pooling in my arm. She did a lot of work moving lymph and manipulating the area of the breast with the tumor. Our idea is to get blood and lymph in and out to assist all the drugs and supplements I am using to attack the cancer. She also works the whole body to get the overall health benefit of a happy lymphatic system.
I stopped going in July because I got busy. When I started feeling particularly cruddy this month, I thought maybe I should go back. I had my second session today since restarting and the difference was pretty noticeable. I feel more alert, less fatigue, etc. I need to stick with it.
There are many people who practice lymphatic drainage that will not work on someone with active cancer. They are afraid of moving the cancer around and promoting metastasis. Practitioners whose training is current or who specialize in cancer should know better. There are three practitioners in my local cancer center who do nothing but work on people with cancer under the supervision of oncologists. My oncologist feels lymphatic drainage is an important piece of the treatment strategy.
I will tell you how the naturopath "balances my hormones" after my visit tomorrow. Honestly, I don't even know if that is what she does. I just have a friend who says that this woman has figured out how to resolve the side effects of these hormone suppressing drugs. I can't take these side effects and I am ready to do anything short of taking estradiol at the moment.
Good night ladies.
>Z<
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Eelder and Shetland, I was surprised when my onc mentioned the Co Q 10. She said it helps with cell energy. The bottle doesn't mention anything about joint or muscle pain, just heart health. All I know is that my index finger would throb with pain and after 2 months the pain is much better. Still have the other aches and pains though.
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Zarovka, great information you shared about the CoQ 10. Thanks for sharing, now I understand more of why my onc recommend it.
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