Ibrance (Palbociclib)
Comments
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Nonahope when my haemoglobin was very low, that is lower than it always is, my oncologist told me to eat chicken livers. He even told me how to cook them!! But when he checked further, he found that my anaemia isn't caused by a lack of iron in my diet. It's the Ibrance effect. I do include more meat in my diet now than I was eating at that time because I was so ill then that I was finding eating difficult and I feel a bit stronger now.
Still thinking of you Lillymillie xxx
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Interesting article yesterday on competition and its effect on drug pricing. Ibrance, Kisquali, Keyruda and Versenio are specifically noted in one of the graphs.
https://www.bloomberg.com/gadfly/articles/2017-10-10/cancer-drug-prices-hit-a-tipping-point
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hi ladies, thanks for the support. Had mri on detailed liver on Tuesday. Will get results on Monday. Even though im scared i have to remember that there are plenty of ladies doing well on the liver thread. Trying to regroup after the meeting so have been looking at treatment options if I need them. Grannax I see you are on that thread. I was wondering did you have radiation. I think I saw you mention Y90. Think that is the one you can only have once? There is sirt or rfa also? I saw you stayed on ibrance while having the radiotherapy. Just wondering since I have stable disease elsewhere if this is an option. I didn't want to ask question on the liver thread until all results are in. Think protocol here is move to a different treatment but thought that was interesting about you on ibrance. Hope your rash has cleared up!
Hope everyone is keeping well.
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Lillymillie, good luck with your results on Monday
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Lillymillie. I did have y90 radioembolization on my liver mets. On my August PET it showed resolution of all the mets. I don't know whether I can have it done again or not. I guess it depends on how much of the y90 spheres are used. I know some patients cannot have it again because they have had their lifetime maximum. I did stay on TX the whole time.
I hope you get good results on your scan today. You might ask your MO if she knows of an interventional radiologist who specializes in this procedure. My MO referred me to one. Or, you can research it on your own.
My rash is much better but it has to be gone before I can start back on TX.
Hope you get good results today.
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that's brilliant Grannax. Thank you so much for sharing. Yes they can refer me to a clinic that will do it if im a suitable candidate. I'd like to stay on ibrance as it seems to be keeping everything stable. Did you have many mets or how did they appear on scans? So glad it worked for you. Will see my oncologist on Monday night. Hope the rash clears quickly and you can resume ibrance.
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Received the Ibrance today from specialty pharmacy but not the Femara. It was too late to call to find out why. I see the Onc on Tues and wondered if she is changing the hormone therapy. I notice that some of you take Faslodex. What are the symptoms with it. The Onc had mentioned several months ago she might change me to a shot you take once a month. Is that Faslodex?0
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airlinelegal, my Ibrance came from the specialty pharmacy (now from Pfizer) but the hormone therapy has always ben phoned in to my local drug store. It's covered by insurance and I have a $7 co-pay.
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For those of you who may have missed this, there's a webinar next Thursday on Living with Metastatic Breast Cancer. I have registered. I got this set of instructions today for logging in, in case anyone else wants to sign up. It's called the CancerCare Connect Education Workshop.
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Airlinegal, I have to pick up my Ibrance in person as my pharmacy will not mail it. I use the hospital pharmacy because they have to "airdrop" it and it doesn't always make my local pharmacy in time. I just pick up my Letrozol at the same time. It is a pain, but the hospital is only 20 minutes away so it is not so bad. It gives me a reason to go out. Often I can meet my husband for lunch close to his work. Making lemonade out of lemons...
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They have always delivered the Femara at the same time they do Ibrance. My question is about Faslodex in case she is going to change the hormonal therapy to Faslodex. Just wasn't sure about the se compared to Femara. Luckily I have received both of them at the same time.0
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Lillymillie. I have mets in my lung, chest and liver. After 7 months on Ibrance/femara the scan showed the lung and chest mets showed less uptake. The liver mets showed none.
Initially, last November, I had a cough that wouldn't go away. By December, the first PET showed numerous mets. I think there were 8 in my liver, several in my lung and plural effusion plus several in my chest. I think the highest uptake was 6.5.
I started TX on Jan 5, 2017. My March scan showed the liver mets were not responding. That's when my MO referred me to the IR. I had the y90 procedures in April and May.
I have a complicated history of 3other DX of BC since 1992.
I found out today that I can start back on TX after my rash has been gone one week. So it won't be much longer.
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Intolight, I get falsified injections. My Onc started me on them because I developed mets while taking Aromasin. I believe faslodex blocks your cancers ability to use the estrogen so it doesn't grow as quickly. Faslodex is an injection you get in you rear. My Onc orders it directly from the hospital pharmacy and it is in the infusion clinic when I come for an appointment. The nurse says faslodex is unusually thick for an injection and you receive a much more fluid than any average injection. I seems that a large muscle is the best way to absorb the drug. Just for curiosity sake I found out I sang "Happy Birthday" 5 times while receiving one injection. Some injections give me a tender lump at the injection site some do not. Sometimes I feel extra tired and gloomy for a few of days after. It seems to encourage hot flashes and dry skin. But, nothing unbearable.
Ibrance comes to my home from my specialty pharmacy. Sometimes I must call my Oncs office to remind them to order it.
Mixed bag for me today. I had my last trubeam radiation today for a skull lesion. It was 10 sessions and I had to drive 45 minutes each way in terrible traffic to get to treatment. I also had my blood results. My red blood cells, white blood cells and neutrophils are very low. My Onc is taking me off ibrance for a month. Then she will scan me to see if there is any change in my mets. While it's not guaranteed it sounds like my Oncologist may take me off Ibrance permanently. Any possibility of change makes me nervous.
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noticed many mention taking ibrance with high fat foods. Is that a recommendation? Are there other food or timing recommendmations to help make it more effective? Thanks everyone. I do not post often but so appreciate all the insight and amazing support from this group.
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wow grannax you do have a long history with bc. Glad the liver looks settled for you and hopefully this combo will continue to serve you well. Thank you for all the info. I just want to be clued in when I'm speaking to my onc at next appointment.
Airlinegal - sounds like the shot your doc is talking about is faslodex. I found I was less a chat than arimidec and I have very minimal side effects. I maybe a bit of bone pain but that could be my mets but has been very easy for me. I also have had no problems with my nurses administering it either. The do one needle each into each 'love handle' area of my back at the same time. Think it's room temperature. I'm not sure though why your onc will change hormone if she feels it is working. She may want to save faslodex for a nothing combo if needed further down the line..
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JFV hope things settle and you can resume treatment. Yes we all fear change. I don't want to get off the ibrance train either.
Perky I did take it in evenings with my main meal but found it made me stay awake at night. I then tried it with breakfast another cycle and it made me slightly more achier so side effects were more prominent if I told it earlier in the day. Again always with a meal. I did read here that green tea interferes with the pathway so I cut it out as I drank a lot during the day. The high fat could be a good fat like whole eggs which is easy in the morning or fatty fish in evening such as salmon, trout, mackerel, sardines and herring. Olive oil fails into that category too and I would use it in my cooking. Cheese, avocados are dark chocolate are also on the list! Google high fat foods that are good for you and you will find more options. It is said to help with better absorbion, I know studies have been quoted here. Also important to keep it at roughly same time a day.
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Hi Ladies,
I just received my bottle of Ibrance to be used in conjunction with the Faslodex shots that I started in May. I felt like a big baby when I just looked at the bottle and started crying. It took me a full week to even start the drug. I'm usually so positive. I don't understand this huge reaction and am struggling to stay my typical positive self. I have heard that this is a good place to connect with others going through similar experiences and so here I am. Hugs to all of you out there going through your own individual triumphs and struggles.
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JFV have your counts always gone low on Ibrance? What dosage do you take? My neutrophils got quite low after my first round at 125mg. I just finished round 2 at 100 mg and will get tested Monday. I think they may go low again based on where I was last week.
Lillimillie and grannax I am also interested in y90 or some similar treatment. My MO said I had too many(4) tumors for her to recommend it unless they get larger and cause pain. Does that make sense based on your understanding?0 -
Welcome, Frenchhorn. We have your back! It's a scary time, and it's not surprising that you're frightened and hesitant. Take the plunge. You'll get your mind around this; it just takes time. Hugs back to you-
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Frenchhorn...the unknown is always scary. I was scared too but it was not as bad as I thought it was going to be..se...and all. To me Ibrance is hope until something else comes our way.
Thanks to all for info on Faslodex...another unknown for me...hate shots!!
Z and Grannax...lost my kitty after having him for 17 yrs a month ago...loved him so much. Will have to decide about another. Loved hearing about yours.0 -
Frenchhorn, I completely understand. When my Ibrance was delivered, I felt excited to get the box - FINALLY, something that was positive on this journey - but then I opened it, and saw the plastic bag with the giant "Caution" emblem, that read "CHEMOTHERAPY DRUG - OBSERVE SAFETY PRECAUTIONS FOR HANDLING AND ADMINISTRATION". It was a gut punch, and I cried, too. But here I am, finishing cycle 3, and I feel great. Sure, hot flashes and night sweats, but both are manageable (I drink a lot of ice water), and I blame the Letrozole for them anyway, LOL. I have quite a few friends whose cancers preclude them from trying the Ibrance, so I choose to feel lucky. I see you were first diagnosed more than ten years ago - at that time, could you have imagined a drug like Ibrance would be available? Two friends of mine were diagnosed in the 90s, when they had far fewer choices, and they're both doing really well on the Ibrance. This is just another hurdle to get over - your old positive self will return, don't worry! <hugs>
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Good morning...
Frenchhorn6....Your reaction to seeing that Ibrance bottle is understood by all of us. I think you'll find, once you start it, you will be fine. The first round was not too friendly for me....so much fatigue, no appetite and overall feeling of blah! I am now on round 4 and feeling good except for the minor aches and pains which are tolerable with just a Tylenol now and then. Hang in there. We are here for you!
What is y90? Is this a treatment strictly for liver mets?
I take my Ibrance/Letrozole at the same time every day. Letrozole with lunch (even though you don't need to take it with a meal) and Ibrance with my dinner. I've had no problems. I remember when I was first diagnosed with BC in 2010, my BS told me to take my Arimidex at the same time every day...so, I'm just following this new regimen in the same way.
Wishing all a very good day!
Hope
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GREAT article yesterday in the Wall Street Journal about immunotherapy! So encouraging!
I hope that this links open the whole article:
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Yes Exactly Ciaci! And thanks to everyone for the encouragement and help in looking at the positives. I'm in a small town in Wyoming and there aren't any support groups that I'm aware of at this time and so it meant a lot to me to wake up this morning and read your comments. Maybe I should investigate and just start my own support group.
airlinegal, I've been on faslodex since May and have sore butt muscle for about 2 days and otherwise just a few hot flashes at night. I always feel worse for the nurse than for me when I get the shots because they feel SO bad administering it. My onc perscribed the faslodex when the aromasin stopped being effective.
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Kiwi. No that does not make sense. I think you would be wise to research on your own. See if you can find an interventional radiologist who specializes in y90 radioembolization. See if you can get a consultation with IR. Sometimes MO does not know who's a candidate and who is not.
Nonohope. Yes, strictly for liver mets. There's more information yon the local treatment thread.
Airlinegirl. I'm so sad about your kitty. Seventeen years, that's a long life and a huge part of your life.😢
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I sort of remember something being discussed here but don't remember all the details (big surprise). Isn't there something some of you use for that burning feet thing? Magnesium? I went to my therapist yesterday because she is the one who prescribes my Ativan for sleep. I had stopped taking it for the last six months or so. She was worried about some things she had read about Ativan in seniors. It could increase risk of falls, etc. Now, I can't fall asleep because of the pain/burning in my lower legs and feet so I started taking it again. I needed a new script. (I take 0.5 mg, like you, Nonahope.) We discussed some other options like Lyrica, Neurontin and something else I can't remember. I may have to relent and go to my neurologist. My therapist can prescribe but not for pain, just for psychological needs like depression, anxiety, etc. I saw MO on Wed. but forgot to ask him about this. We have this bond (finally) over the dog thing and just talked dogs. Now I won't see him for a month. And he finally scheduled my next Pet/CT scan on HALOWEEN. Is that a good day to have a scan?
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Thanks for that link, Joyner. It is all really amazing.
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OK, I just did a search on "magnesium" and found that, yes, this is what I should try. Thank you retroactively. I'm still worried about the scan on Haloween.
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Janet....My oncologist prescribes my Ativan. I don't have as much problem sleeping like I used to. It seems since I've been on the Ibrance, I sleep much better. When I took it for sleep issues, I would only have to take it for 2-3 nights. Then, I guess I got into the habit of sleeping well. I only took it if I didn't sleep a couple nights in a row. I still take it every now and then - most especially, before my doctor appointments and scans etc. I, honestly, don't feel any different (physically) when I take it. So, maybe it's just a mental thing?? Whatever works, right??
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JoynerL-Thanks for posting the WSJ article. Very encouraging!
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