Ibrance (Palbociclib)
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Dang, hope! So sorry about your pain. You seem to be able to stay upbeat, regardless. You're amazing. Will you have a chance to get some answers about your pain soon? It's bad enough we have to deal with all the side effects, worries and yucky procedures, but pain is just the last straw. I can imagine you sitting on that camp chair under the trees, and it does make me smile. But the pain is just not fair.
Myra, this goes for you, too. I really hope you two can feel better. What do you take that helps, if anything?
I passed out last night at the restaurant where we were eating last night. Had a great meal, felt like I had to use the restroom, then felt slightly dizzy. Told husband I need him to take me to the bathroom, we got up, and the next thing I knew I was on the ground looking up at my husband and a stranger (who happened to be a nice guy from a nearby table.) They helped me up, and after a few steps I guess I passed out again. Geez.
This has happened to me a few times before in the last few years,but I am really surprised it happened this time because always in the past it was after a meal with alcohol. I thought having wine pushed my system out of whack because I have very low blood pressure, and on a warm night it can be the trigger. So I gave up drinking. Now I'm really kind of nervous because I can't predict when it will happen. It's only once a year or so, but still. Not fun!! Apparently it's a thing, and it has a name. Postprandial syncope.
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Sandilee, that is so scary! I almost passed out with low counts and Xgeva shot. Thank goodness there were people to catch you. Feel better. My pain is very odd. I can walk really well, without pain. It seems to be coming down from my side to the top of my hip and sometimes when I get up. It truly feels it is referred pain from a muscle spasm in my back. When I walk around it is fine, it is when I sit too long. Very frustrating.
Last weekend in NYC, I was fine, walked about 20 blocks each day. I do get dizzy at the end of the cycle. If I get up too fast, my legs feel like mud and I cant move them. I have to breath a minute and get my bearings.
Enjoy your weekend all. Myra
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Hope,
Thank you for your response. Now I am thinking that Ibrance will make the AI work better, as it gets rid of whatever was blocking the AI in the first place! Good luck to you and everyone in this thread!!!
Hugs,
Brenda
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Romansma, good for you, for going camping in spite of everything, and may you have a better night tonight.
I take my Ibrance with lunch, Susan. I also have that wave of nausea 30 or 45 minutes after, but not every time. I prefer lunchtime since sometimes I am still trying to cobble together eight hours of sleep in the morning; and I have some evening classes, so I don't want to risk nausea or stomach upset in the evening.
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Hope and Myra so sorry your pain continues. Hoping you can figure it our and get some relief. Have you ever done acupuncture?
Hope I went to the infra Red sauna today. Spent 45 minutes. Loved it. Not sure I loved how hot I was but loved how I felt afterwards. Beautiful private room with aromatherapy and relaxing music. Am going to go next week again and also get a foot massage. Wish i could go more frequently but difficult with my work schedule.
Sandilee so scary. Hope you are feeling better today. I never heard of that condition. Is there nothing to take to prevent that?
My third day between cycles. Felt really good today and had a good amount of energy which is encouraging.
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Hi Pearlady, i am new to this site. Am offered ibrance/femara or possibly xeloda as next treatment. Do you or anyone else have any insights? Kind of afraid of the new med, but did ok on Affinitor (also took in the evening - no nausea) and hoping to hold off chemo as long as possible as well as read somegood results for ibrance (p.r. maybe??). Thanks.
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Dorothy, I want to try the sauna next week. Glad you enjoyed it. Just finished my third cycle last nite. Tiredness so much better. DH and I cleaned closets all day yesterday. Purging felt great. Really good Feng Shui. It is amazing just how much we buy and don't use! 3 large bags to Goodwill.....Hugs.....Myra.
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Sandilee, that's pretty scary!
Myra, my pain this weekend is partly spasms in my lower back. Oxy isn't touching it. Hard to sit, walk, wth! Almost went home yesterday, but decided to grin and bear it another night. I slept a bit better, mostly because I doubled up on pain meds. I am thinking this is a combo of low counts and Xgeva. I think we need to be getting Xgeva injections at a better point in the blood count cycle. The spasms are like what I'd get on Neulasta. Anyway, hopefully, they will relent in the next day or tow, or I will be calling MO. I'm thinking a muscle relaxer might help......and definitely a little scheduling next cycle to prevent this. Tough weekend for pain!
Dorothy, I've been wanting to do the foot massage too! I don't get regular massage anymore because it hurts too much now, but my feet would be sooooooo nice! Think I may treat myself this week!
Sunday fun day. Be good to yourself, friends!
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How has ibrance been? Were you offered anything else as treatment?
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Sandilee, sorry about your frightening incident, I am thinking it is not connected to the Ibrance. I have a friend who has to cook low sodium meals for her husband (most of us have too much salt and they are adding more and more to packaged foods) so she cooks low sodium for her family, but the son passed out at school and they found he needed more salt in his diet - I wonder if it's an issue with salt). Also, I heard that we need to get iodized salt (since low iodine can be a factor in cancer). My mother once passed out due to low magnesium also - so it could be that you need magnesium or something else - did you have the blood checked magnesium, potassium, sodium, etc? Hope the docs can figure this out for you.
Romansma, sorry about your back pain, hopefully the muscle relaxer will help. You may have to rest which is hard to do with kids. I have been frustrated with sharp rib pain, must be a broken rib - and was done in after a big foodshopping day yesterday (never enough food here with very large boys to feed!). Hard to rest with so much to do, but sometimes you have to give in.
Just saw something saying Prilosec can cause heart attacks, so I am now sticking with just Zantac and spacing it far from the Ibrance. So far my reflux has been much better than last month (keeping my fingers crossed) and I wonder if it is due to giving up tea (I'm dying for a cup of tea, though, since I am a tea addict)!.
Susan, I have not had nausea with Ibrance except for a couple of mornings, both around 4 a.m., and i am on my 4th cycle. I take it with lunch (first eat 1/2 the lunch, then take the ibrance/letrozole, then eat the 2nd half of the lunch). It is listed as a possible Ibrance side effect, but hopefully it will not be often for you since it doesn't seem to be a problem for most people most of the time.
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Thanks for your sympathy around my fainting episode, everyone. I do want to make it clear that this is not medicine related at all. This has happened to me before I was on Ibrance, or any cancer med, actually. My blood pressure is low normally, certain things that may push it down further- dehydration, alcohol, eating a meal in a warm room can be a trigger. My oncologist said, "eat more salt," Holly, so there may be something to that. I don't usually eat processed foods or add a lot of salt to things, but I do eat out fairly often, and we all know how restaurants load up on salt and fat, to make things tasty. Honestly, I think keeping extra well-hydrated is probably the answer, if there is one. I do have my magnesium, sodium, potassium levels checked regularly in my blood work and they are all fine.
I'm kind of wondering about Xgeva and Ibrance together. Most of us are on some kind of bone strengthener, often Xgeva. One of the websites that looks at drug interactions has a flag on Xgeva when used with Ibrance. I don't know if the site is reliable or not, and I've not seen any other indication that they are not compatible. But some of your experiences do make me think. Although the types of problems mentioned don't seem to be the kinds of problems anyone has experienced. My doc certainly hasn't said anything about it.
http://www.drugs.com/drug-interactions/ibrance-with-xgeva-3602-17088-3238-14902.html
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I am convinced there is some interaction between Xgeva and Ibrance, Sandilee. After this weekend of intense muscle spasms, pain in my lower back, hips, and pelvis. I think it coincides with my cyclical pain flares. I am a little better today, so far. But still hurting. We came home early this morning.
Myra, does your pain seem to be the week or so after Xgeva? Are your blood counts at their lowest when you get the injection. I wonder if it was given at a different poin in the cycle if it would make a difference? I could hardly walk or sit yesterday!
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My son graduating from high school and my daughter graduating from middle school. Feeling blessed.
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I have a big favor to ask. We are going to find out about our insurance appeal tomorrow. If they are negative, my husband would like to have a little ammo in his pocket regarding other insurance companies. We'll need to prove they are being irrational in comparison to others. If you dont mind, would you please tell me what insurance company you are with that is covering Ibrance as a second, third or even fourth line treatment. Much much appreciated if you can help.
Thanks!
Stefanie
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Hope, I truly believe mine are spasms, but nowhere as bad as yours. They do not kee me up at night. I sleep fine. My counts are low now at the end of this cycle. I was doused to get xgeva tomorrow but am going to reschedule to the end of the week. I can definetly feel the difference. This spasm comes and goes, but like you said, the Vicodin does not help. I will be asking for a muscle relaxer too. Sometimes they start fromy neck and go all the way to my tush.
Stefanjoy congrats on all ur wonderful grads beautiful pictures
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Beautiful kids, Stefajoy! Will your son be living away from home for college? That's a hard transition for moms, I remember, although you get to have more one-on-one time with kid #2, which has its own rewards.
My husband's company self-insures, although they use Anthem/Blue Cross as their administrator- so everything goes through Anthem. I get the drug though CVS Specialty because that's the pharmacy my insurance uses.
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Hello ladies
I will be taking ibrance with faslodex. I have an HMO and there wasn't an issue with coverage. JHL The results of the clinical trial pairing faslodex with ibrance came out June 1st. Maybe that will help with your appeal? I think it was called PALOMA 3
The side effects I had on aromasin/afinitor were too much to continue on that combo. I received my first faslodex a week ago and I have the ibrance but haven't started it yet. I'm starting on the lowest dose- 75mg. I'm hesitant to start Ibrance until next weekend after the school year ends in case I have vomiting or diarrhea.
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I have to say my insurance company has not balked at anything. I think it might be how your company sets the policy up. I have United Health Care through JCPenney. The only problem I have had is for a short time (<month) my hospital system went out of network. We have 3 major hospital systems. It is a moot point. I would have stayed with Dr Bellil regardless, but luckily it wasn't a problem
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I am on ibrancr and letrazole. I have been blessed with not so bad side effects. I am in my fifth round and finding that I have a great deal of more pain in my bones and joints as time goes on. And especially that third week of ibrance. Is it ok to use oxycodone for pain relief
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I am also experiencing excessive tearing. Is this a side effect? It doesn't seem to be allergies.
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I've been taking ibrance and letrazole for five months. Fatigue side effect and by be and join pain. Insomnia. And dreaming talking and singing in my sleep
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Hi Deb, Oxy is fine with the combo. There's no drug interactions to worry about. Hope you get relief.
Stef, love the family photos. Beautiful kids. I have two at similar ages. My daughter is off to college in August and my son will be entering 8th grade. I'm taking the combo but it's first line for me. My insurer is Independence Blue Cross if it helps. Good luck! I really think they'll come through for you.
I hope everyone gets the pain relief they deserve. It sure can be a bitch.
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Hi intothewoods and Deb20,
Deb20, I had some tearing in my eyes on my first cycle of 125mgs, but I don't get any on 100gms. The "singing in my sleep" sounds like a vocal version of some of my dreaming. Are you still on 125 mgs without any blood count issues? Have you had any scans that show the drug is working for you? I don't think any of us on the thread so far have been on the drug that long. I'd love to know how it's been working for your mets.
intothewoods-Good luck to you. Interesting that your doc is starting you on a low dose. I like the way doctors are beginning to individualize this drug depending on their patient's issues. I hope it works well for you. I haven't noticed any problems at all with the 100mgs, so far.
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Stef,
I have Harvard Pilgrim in Massachusetts. This is a non-profit health insurance company, well rated nationally. I am not sure if I am considered to be on my second or third line or fourth line of treatment. I did aromasin as a Stage II patient, and after progression, they added Faslodex to that mix. I dropped the aromasin almost 3 years later due to side effects. Now, I am on Ibrance with letrozole. Approval took 4 business days, but I didn't get the Ibrance for another week due to a snafu.
I have no idea if my oncologist's office had to fight for me or not. I plan to ask at my next appointment.
Hope this helps, and those pictures are wonderful!!!!
*susan*
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I haven't been posting for awhile, but will share my experiences so far with Ibrance/Letrozole. My first two cycles I was on 125mg for three weeks, and both times I had to be off for 2 weeks because my counts took awhile to recover. So, on the third month, we tried 100mg. I was on it for only a week, then got a urinary tract infection (first one in my life!), which quickly went to a kidney infection, then into my blood. I was septic!
This happened just about 4 weeks ago. My fever went up to 104.5, and nearly that high, several times in one week, I was vomiting, blacking out, and chilling. I had to be hospitalized for four nights, got neupogene to increase my wbc counts, tried a few different antibiotics, and then got better! I lost 6 or 7 pounds in that one week, and felt very weak for the first two weeks home. I am doing better now, but still not 100%. I just started back on Ibrance/Letrozole last Tuesday.
The good news is that I had a PET scan last week, and the two spots that I have, one in my right iliac bone, and one in my spine, have both shrunk slightly. That is all I needed to know! If it's working, then I will just deal with the fatigue, and increased likelihood of infections. (Although, I seriously don't EVER want to have a week like that again!!) I learned my lesson, that I need to go in to the hospital right away if I have a fever while on these drugs. I assumed I had a bug that my two boys had, and that I would get better in a couple of days, so I waited it out longer than I should have, and that infection travelled fast!! I am fortunate that we caught it in time, honestly.
I am hoping that my body will like the 100 mg dose a little better, and that my counts will be able to tolerate it better too, especially now that I know they are effective drugs for me. I am trying to eat a very healthy diet, and I continue to run and walk. I think eating right and exercising are powerful tools, and something I can control.
I will continue to watch this thread, and am cheering for, and praying for, each of you!
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Sandilee, I agree it must be a dehydration issue if the other counts are OK, especially with the weather getting hotter. An aunt passed out at a big family cookout last year and had to be rushed to the hospital - she was sitting out in the sun - they found that it was dehydration. I think you should go to the emergency room if it happens again, they should be able to at least let you know the cause so you can hopefully prevent it happening again. Also that is interesting about the Xgeva - I am not on the Xgeva but have been on Zumeta every month for a year (now every 3 mos) - not sure if that's a similar drug, but it has not given me the muscle spasms.
Stef, I have BCBS (HMO) of MA, and I am taking it after failing letrozole alone, and failing Faslodex alone. Good luck tomorrow.
Intothewood, it is great to know you are getting Ibrance with Faslodex, this may be the next step for some of us when we need to move to a new combo. Please let us know how it is working for you, and good luck!
Springlakegirl, that sounds scary, glad you recovered, and thanks for the warning, I will keep that in mind since I have had a fever on this once, but nothing like yours.
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intothewoods, I am glad you had no insurance issues for coverage of Ibrance with Faslodex. Good luck on your new med!
Stefajoy, I hope you receive good news on your appeal.
I submitted my appeal last week. I included the info about PALOMA-3. My company is self-insured (with CVS/Caremark as the third-party administrator), which means they are not bound by some of the state regulations about coverage of non-FDA approved drugs. They have more flexibility to deny. I don't think a true insurance company can deny coverage at this point given the published information out there. Waiting at this point. Has been nearly two months of waiting without taking the drug. My oncologist was able to get me a free month from Pfizer that is set to arrive on Tuesday. However, I don't want to bother starting a medication if I have to stop it due to insurance denial.
For those of you waiting to hear about insurance coverage, are you taking the drug in the meantime?
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JFL - I took the 21 month free trial from Pfizer. On my fourth week, the "off" on. Praying Blue Shield of Ca stop being dickheads by Wednesday.
Thank you all for your insurance infos. Good to have.
JJski62, , my son is going to UC Santa Cruz in September. Your daughter?
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Stefajoy beautiful family! Thanks for sharing.
I am getting Zometa instead of Xgeva and do not have any pain. I've asked my onc about switching to Xgeva and he claims no additional benefit and that if I'm painfree, a change is not recommended.
Intothewood it is great to hear that you are geting the Ibrance with Faslodex. I'm sure that will be next for me as I'm concerned since I had Femara for almost 5 years it won't be as effective. My onc agrees with what many here have said that in combo with the Ibrance he is thinking that it will work agai since I had success in the past. If not, its good to know there won't be getting any issues with getting Faslodex approved.
I have no nausea and really no pain from the Ibrance. Had a bit of nausea when I first started, but after second cycle have not had. My worst issue is not being able to sleep well. I think that's more the cause of tiredness for me than anything else. Sometimes herbal remedies help and sometimes no. Other than that no terrible issues and the tiredness has not affected by ability to work a full day.
Hope I am really looking foreward to the foot massage . I've had them before and it seems to help your entire body feel better. Also, when I had terrible pain issues with the neuropathy, the bio-mat really seemed to help.
Have a great day everyone.
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thanks so much. I love this site
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