Ibrance (Palbociclib)
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Lynnwood, happy, happy news! Hooray!
Lisbet, I'm not liking your nurse. Do you have any other options?
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Lynnwood....great news! Stable is so good!!!
Airlinegal... about hair and nails. When I started on Letrozole I lost quite a lot of hair, not in patches, thank goodness but generally. I started Ibrance about two months later but the hair loss was no worse. I'm on a trial for Ibrance and Femara in Australia and the doctor in charge of the trial told me that Ibrance doesn't cause hair loss but that Letrozole can. Letrozole also makes it dry and "fluffy" (his words). I have fluffy hair at the best of times! But, after seven cycles, I've found that after an episode of quite severe hair loss, close to 50% all over at a guess, new hair starts generating again. That's in the process of happening now and I'll be interested to see how it looks once the baby hairs are visible. As for fingernails...mine are terrible! They have ridges lengthwise and are brittle and break off before the ridges reach my fingertips. They're also a bit discoloured...I think that's caused by the Ibrance. Hope this is helpful in that, although I've lost hair twice, both times it has grown back. I'm hoping it doesn't mean the combo isn't working but I choose to be optimistic until I'm told otherwise.
i very rarely have nausea nowadays. Either my body has become accustomed to the meds or it was Oxycodine that was causing the nausea.
Lisbet, sorry I can't help about your pains. It's outside my knowledge zone but Claudia could be right. The meds we're all on can cause severe constipation and that does all sorts of horrible things. I take two kinds of laxatives every night now because I never want to go through the constipation I had again. I know it's not good to become dependent on laxatives but it's necessary with a lot of these treatments and pain meds. Apart from that, try not to worry, sweetie. I know it's hard not to but it doesn't help and stress exacerbates pain. Perhaps try listening to some of those beautiful meditations on youTube.
Hugs everyone
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Joyneri...I'm SO with you. I don't like Lisbet's nurse either. I think she's too willing to fob you off, Lisbet.
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Thinking of everyone having scans this week and getting results, hoping for the best news for you all.
I always take both my tablets after my evening meal which I try and have at approx the same time. I was reading some info on food absorption last night, copied here from https://www.drugs.com/pro/ibrance.html
"Food effect: Palbociclib absorption and exposure were very low in approximately 13% of the population under the fasted condition. Food intake increased the palbociclib exposure in this small subset of the population, but did not alter palbociclib exposure in the rest of the population to a clinically relevant extent. Therefore, food intake reduced the intersubject variability of palbociclib exposure, which supports administration of Ibrance with food. Compared to Ibrance given under overnight fasted conditions, the population average area under the concentration-time curve from zero to infinity (AUCINF) and Cmax of palbociclib increased by 21% and 38%, respectively, when given with high-fat, high-calorie food (approximately 800 to 1000 calories with 150, 250, and 500 to 600 calories from protein, carbohydrate, and fat, respectively), by 12% and 27%, respectively, when given with low-fat, low-calorie food (approximately 400 to 500 calories with 120, 250, and 28 to 35 calories from protein, carbohydrate, and fat, respectively), and by 13% and 24%, respectively, when moderate-fat, standard calorie food (approximately 500 to 700 calories with 75 to 105, 250 to 350 and 175 to 245 calories from protein, carbohydrate, and fat, respectively) was given 1 hour before and 2 hours after Ibrance dosing."
But there is just no way I could eat 800 to 1000 calories in a meal, 400 to 500 maybe.
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Lynnwood - woohoo! Yes!!! Stable is awesome.
I take biotin as a preventive against the hair/nail loss that letrozol can cause. My nails grow so fast that it is downright annoying, but I continue to take it because my hair is thick and awesome and, apparently, my ego is very very tied up with my hair. Watching how people rock wigs on this forum has taken some of the fear out of losing my hair.
>Z<
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Lynwood, yahoo! I love good results and stable is good!
Leapfrog, I take my Ibrance/Letrozole with dinner since that is when I eat the most calories consistently. I have had no trouble other than my week on Letrozole alone when I occasionally have nausea. I have had good results.
Airlinegal, I lost about 70% of my hair but it is starting to grow back slowly... enough that I don't feel like I have to cover my head when I go out. I still wear a wig for special occasions, but that is not often. My nails have always been thin but they do now have ridges.
Lisbet, I have had something show in my stomach from my first scan that the radiologist says "could be irritation." He says the same thing every time. I worry my random phantom pains (stomach, sides) are related to this and is more serious but my onc doesn't seem concerned since I don't have other issues other than an occasional bout with diarrhea.
I do wonder whether anyone else has cramps in your side muscles? I don't have leg or foot cramps since I increased my magnesium, but the side muscles hurt! I am trying to go back and do yoga and see if stretching helps, but I get the cramps when I stretch. Just wondering...
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My hair is thinning...encouraging to know that it will stop at some point and maybe thicken a bit!?
Those with pain (myself included)...is your pain constant? I'm always aware of discomfort, but it is eased with Tylenol. As far as the constipation...oh my! I take a stool softener every evening....it really does help!
Off to have my potassium level checked.
Hope
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My new treatment. DH went to a breeder in Arizona and got us this 12 week old Brittany. (They are not called spaniels anymore.) He is fantastic and smart. Also what dog people call energetic. DH is doing all the work and I am having all the fun. You're right, Z. This guy gives me a lot of exercise and I feel better.
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IntoLight, I have pain on both sides of my rib cage and don't think I have any mets there. On the left, I've chalked it up to evolving radiation damage (even thought it's a few inches below my mastectomy site. On my right side, I have no clue. But being a side sleeper and having this pain is for the birds!
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Lynwood-thrilled with your scan results!
I have heard that most of the hair loss is from the letrozole. I am on Faslodex since Arimidex failed me. I am getting new hair in the temple areas since I have stopped the Arimidex. My MO says that the hair loss reported is not from the Palbociclib. I have no nail issues. (Did with Chemo)
I have had rib muscle cramps and leg cramps that seem like they are getting better. I do yoga daily which helps, fluids help, in bed when I stretch (those natural cat like stretches when you first awaken) I make sure to flex my feet up toward my knee and that has really helped stop the jump out of bed calf cramps. Also, sometimes I bend my knee or hip while stretching in bed and that seems to prevent the cramps.
I have noticed that my nerves are much more "sensitive" if I lean on my elbow fingers can get numb, they recover quickly, but, are much more sensitive to paresthesias. (still have some paresthesias In my toes left over from the Taxol, no pain or numbness though)
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Jacee49, I am having puppy envy! What a cutie!
Intolight, I get cramping in my sides and from my ribs to my belly button. I had a great pet scan end of July. I'm thinking it has something to do with bowl movements. Obviously, this is a huge issue for me, but if Mo isn't worried, I probably wouldn't worry.
Hugs and prayers everyone
Claudia
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Joyner and Leapfrog
The nurses are quite all right. They do what they can. We have a public tax payed healthcare system in DK, and I cannot choose my own onc. Actually I see a different one at each appointment. Nor can I get extra appointments with doctors unless there is a life threatening situation - and I cannot talk to them on the phone. Nurses come in between. I have to live with that.
Lynwood: I don't know about constipation. I don't feel constipated and regularly go to the bathroom. Guess I just have to quiet my mind and wait on next appointment and the scan.
I'll let you know by then.
I lost a lot of hair on Letrozole. And then the hair-loss stopped. However the hair changed to something like Madam Mim's: Totally dry and lifeless and impossible to get to look nice.
It's seems to be no better on Ibrance - but will have to wait and see what happens here. The info I got before getting the pills said I would quite likely loose a lot of hair.
It seems that the terrible arthralgia is not so bad on Ibrance though.Jaycee49: Congrats on your dog. He's beautiful. Dogs are so lovely and give so much joy!
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So I had a brain MRI in June after only a couple of weeks on Ibrance. I am in the middle of round 3 of Ibrance and found out a lesion near my left eye has grown during that period. Now I am fearing Ibrance isn't working. Anyone have tumor growth at first with Ibrance
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Lisbet, I have been seeing my MO for three years. I have talked to him on the phone exactly once. I always deal with nurses so it's like that here, too. With one of my doctors, I can post on her portal and she responds (by having a nurse call). My MO doesn't like electronic communication. I drool when people here say they email their doctors and they email back. So efficient.
What gets me about the hair thing is that mine is very thin now but I still have to get it cut. Long thin hair doesn't work for me. With it so thin, I like it short. And it grows fast, too. What's up with that?
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Curious with all this talk of hair loss, thinning hair etc. Do any of you have your hair colored at the beauty shop? My roots are snow white and I sure would like to go back to blonde, but I'm wondering if I should with the effects of these drugs?
I am very fortunate with communicating with my oncology doc and nurse navigator. In fact, I get phone calls at home from the oncologist "out of the blue"....just to see how I'm feeling. I am one lucky duck compared to some. I am told to call any time 24/7 if I have any issues or questions. Sorry for the lack of communication for some of you.
Hope
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I haven't colored my hair for years because of all the chemicals. I made a firm decision that grey is beautiful!
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Great news Lynwood!!! Thinking about others having scans this week...praying for good news all around.
I had a lot of bone met pain right after starting treatment. Felt great until my Dx:-/. it got better each month for a long time.
Having other issues now but Ibrance/femara SEs got better as things healed.
Hang in there friends!
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Lisbet,
You are reminding me how fortunate I am. I was grumbling about my MO a few minutes ago, he always waits until the last minute to order scans. I just had the bone scan he wanted in prep for our next appointment, tomorrow at 9:30 AM. No chance he will have anything but the pictures but we are supposed to be making decisions on treatment. He's been leaning towards something more aggressive.
But other than being slightly disorganized (not surprising given his case load), in every other way he is an absolute prince. He frequently calls me and, because he was concerned that I am too busy to play telephone tag, he gave me his email address. He has even emailed me on the way home from his vacation!
Thanks for putting things in perspective. Really, that's one of the things this site is all about.
Sending gentle hugs to all, but especially Lita. I have not been on long enough to communicate much but have also marvelled at your strength, grace and ready wit. Stay strong my friend.
Pat2
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nonahope-I get mine colored by my long time hair stylist. I've always used non permanent color (fewer chemicals) and had no problems, and continue to use it.
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JFV - I am so sorry you are dealing with that lesion in your eye. Do you feel it, see it? Did it come up in scans? Could it be easily biopsied?
To answer your question, it can take 6-12 months for the ibrance to start work. I had two separate reductions in lesions, one immediately and one in month 12, as if I had started a new treatment in month 11 but I did not. One explanation is that the hormone suppression drove the first reduction and ibrance drove the second. There were women in the trials who did not see any reduction in lesions until 6-12 months out.
That said, Ibrance just doesn't work on some women. I think it is the hormone suppression that fails. Ibrance does not work if hormone suppression is not also working. But there are drugs that do work. You just have to deal with a drug transition, which is frightening but there are options.
How are you feeling? What are your plans? What does your doctor say?
Yech. Sorry this crap is on your plate at the moment.
>Z<
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Thank you Z ! I can't feel the lesion. I guess it ate a small hole in my skull and is now beside my eye in my occipital area. My vision is a tad worse in that eye but not seriously. I'm told the lesion is still small but it has grown since June. It is still considered bone mets. I will have cyberknife type surgery in a couple weeks. On Monday I get a CT scan. Then they match it with my MRI and come up with a program to zap the lesion. All the ROs in this group evaluate my plan before I start treatment. Normal treatment is 5 times over two weeks. But, the RO said my optic nerve as well as my retina can be easily damaged by the rads so I may need to go 20 times over 4 weeks. My original biopsy was in May and at that point I had extensive bone mets so I guess it's safe to say it's BC. Happily my brain is clear I haven't managed a full month on Ibrance yet so maybe I can stay on a little longer
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I wish Ibrance worked immediately like magic, but you really have to give it AT LEAST 3 months. That's why most doctors reach for chemo first with aggressive cancer even for hormone positive cancer. It takes cojones to wait for this drug to kick in if the cancer is actively moving. If this situation is freaking you out, a round of chemo before you continue on Ibrance could be considered. That said radiation is immediate and will likely do the trick.
Bottom line is that if you have had only one cycle of Ibrance, that would absolutely not be enough to determine whether it is working.
In the meantime, here's to RO's with a steady hand ... goodness gracious.
>Z<
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Concerning hair color, I've colored mine for years except for the months I was bald from Chemo years ago. I find the color helps it to look less thin. It became very thin when I was first on these meds but I started taking 10 mg Biotin and while my MO said it wouldn't work, I think it did. Can't believe my hair would be this much better without it. Even my hairdresser thinks it's much thicker than it was months ago. My nails are also good except for the thumb nail which has a problem that I can't figure out the cause. It looks like it's been injured but I don't remember doing anything to it. It has a red mark under the nail and it seems as if it will peal off the top layer.
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Oh boy, so many issues here I want to answer! But first, Lisbet! I'm so sorry I cast aspersions on your nurse. You'll have to forgive me please, I find that since I've been taking Lyrica I've become a lot more outspoken and things are out of my mouth (or fingers) before I think of the consequences. I'm not normally tactless.
Hair thinning and colouring....I'm still having mine coloured and keep up my foils. It does look thicker and it gives my morale a boost. The thought of the chemicals is in the back of my mind but we don't put the colour right onto the scalp, only on the hair and, as hair is not a living part of the body, I don't think a lot of chemicals would be absorbed; only those that creep onto the scalp. I've got a friend who's a magic hairdresser and she's layered my hair up so that it looks as though it has more volume...it's wavy/curly, or was...Letrozole has made it so lifeless and dry that it's just fluffy frizz but I console myself that it's still there and I'm grateful for that as, like someone else on this thread (sorry, I can't find your post now), my hair really matters to me.
Blume, thanks so much for all that information. It's very, very useful and I'll continue to take my Ibrance and Letrozole with lunch as that meal fits with the description of the best meal for it.
Faith...nails...I have several that behave as though I've done something to cause them to break about halfway down and I have to keep them covered with a tiny piece of thin paper covered with nail polish (which I don't like using) to keep it in place while they grow out, otherwise I'll have an exposed nail bed.
JFV I'm really, really sorry about the lesion near your eye. In answer to your query, I don't know whether this is relevant but my tumour marker has gone up since Ibrance. It went down dramatically for the first three cycles and then it suddenly shot up so I'll be more than interested to see what my blood test next week shows. But back to what really matters, which is your lesion, I'll add you to my prayers and my most positive thoughts.
On reading all of your posts, I'm even more grateful now that I was given a place on a trial as I'm monitored every cycle and I have a trial nurse I can call any time. She will ask my MO questions if she can't answer them herself and I see him every five weeks. He's very very kind and caring and I think he worries more about my pain than I do! I know I'm in good hands and because of that I'm in a good place mentally.
Hugs everyone, especially those having a really tough time right now. We're in this together, we'll make it.
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It's Spring time in Australia! Here is something for you to enjoy...an unusual sight of tulips with gum trees in the background.
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Hair color: I asked this question over a year ago when I first started treatment but I had not found the support of this site yet... I decided to let my hair go wanting to be ultra careful of everything. I had colored my hair for 20 years so I had no idea what it would look like and it turned out to be salt n pepper. I would have loved it to look all gray and would have left it. But I hated it. Just 2 weeks ago I decided I no longer wanted to look like my grandmother. so I had it cut and colored and I feel so much better about it. It is a little thin but looks better. I am careful to not let them use anything with aluminum or other harsh chemicals in it. I retreated a little once I retired, but I have decided to join the outside again which has been good for my psyche.
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IntoLight I think sometimes we have to make a decision between what makes us feel good and whether we think it's worth doing. I decided that feeling good is important for recovery.
I forgot to mention in my lengthy post that I take a lot of magnesium. It helps with constipation and I can change the dose according to my needs. It also helps enormously with muscle cramps and spasms.
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I talked to a therapist about the hair loss thing. It upset me so much to lose it and took so long to grow back and I hated the wigs. I did have a baseball hat with hair that was comfortable and looked very natural, but, was a bit odd inside the house! She told me it is much more than an ego thing-it is primal. Bald women are usually considered sick, and make people feel uncomfortable. For me it meant I could not keep my illness private-hence the wig. The first day I had it colored once it grew back enough was so great!
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Nkb thanks for explaining that. I totally see what you mean. When I'm at my five weekly visit to the Cancer Centre, I feel sorry for the women who are wearing beanies or turbans because I immediately think how sick they must be. Yet, as my son pointed out to me, it's possible that I could be in a worse state than they are, it's just that I have my hair (lifeless and dull as it is). It's also possible that they feel sorry for me because I have to be taken in a wheel chair because of the immobility the tumours in my bones has caused but i don't think of that. It is a tendency to think of bald women that way because it's just so wrong somehow. I'll remember your explanation because there's still a possibility that I could lose my hair at some stage if hormonal treatment doesn't control the disease. I bought a wig immediately after diagnosis in case I needed it. I felt that i could handle buying it then rather than waiting until I lost my hair. Fortunately my private health insurance pays for one wig up to AUD$480.
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IntoLight. I am on cycle 12 of Ibrance, Letrozole and Denosumab. I have long hair that has thinned however I have continued to have it highlighted every 4 weeks. I get bone and ct scan results next week so would like to wish all us "scanners good luck.
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