Ibrance (Palbociclib)
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Hello, anyone dealing with ONJ (osteonecrosis of the jaw)?
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Hi Tigerfan
Sorry, I know nothing about ONJ but I did notice that your last post was deleted. If you didn’t delete then maybe you should try to repost. Sometimes it takes a few days for someone to respond because, like me they don’t check in daily. So give it some time and meanwhile I’ll look for some input for you. I’m so sorry for what you’re going thru ! Praying for relief and info for you.
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Hi Tigerfan
Just saw that they’re discussing it on the Metastatic Breast Cancer “only” forum.
From the left column on this page, hit “ Search “ and type in ONJ . There are 2 posts their that mention they’re discussing the issue.
Hope this helps.
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anyone with experience on ibrance/faslodex with lots of fast growing liver tumors? ~10 new mets + growth in existing ones in less than 6 weeks time
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Welp, over an hr in the MRI for a cervical, thoracic and lumbar spine scan. Back was really singing the whole time but I pushed through it. I wanted answers. Very slight progression in known mets in spine but not enough to warrant change in TX according to MO. MO wants me to stay with Ibrance as I am only finishing cycle 2 and not enough time as gone by. Ibrance is tolerable for me, so the longer I can stay on it the better. Caught up in reading all my reports including the most recent one of the spine. Gosh there is so much more in there than I thought, It's everywhere in the bones practically. Made me heave a deep sigh. As far as the pain is concerned, it may be the a combination of the Zometa and/or healing mets. MRI didn't see any compression so no basis for rads. However, I had seen somewhere someone mention using gabapentin for spine mets pain. So I mentioned it to my MO and she thought it was a great idea. So I'm on a low dose up to 3 times a day. Works for me! Hubby has helped me make a few adjustments including putting plywood under my side of the mattress, getting me a "My Pillow" to put behind my back in the recliner etc. Lots of little adjustments here and there. I guess I have to learn that cancer won't adjust to me, so I have to adjust to it alittle bit ..but happy Ibrance is still on the radar for me for now
Off I go to order for Cycle 3 0 -
RRabbit so glad to hear those adjustments are giving you some relief. :-)
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Rabbit,
So glad to hear you are staying in ibrance and they prescribed you something for your pain.
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Miss Rabbit...great news!!! So happy for you.
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Feeling very lucky to share that I just passed my 4 year mark since diagnosis (denovo stage 4). I am grateful to have access to top doctors and meds, to have people here and in my home life who support me, and to have choices to live and thrive in ways that are meaningful to me. Most of all, I know that I am lucky, so far anyway, to have a cancer that is responding to this wonderful treatment option that came out not so long ago.
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Congratulations Jen!!!
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Wonderful Jen! :-)
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Jensgotthis...so happy to hear you passed your 4 year mark. It is a good target for us all! Yay!
RRabbit...glad you are getting some relief solutions.
My first meeting with my half-brother went well. It is more satisfying than I thought to have some more information on my biological family after all these years. And as an aside note, he has/had breast cancer. Lucky for him they caught it early.
I am busy trying to finalize everything for the holidays so I can take off Saturday for a little R&R cruise. Need to feel normal and get away for awhile.
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Peace & Love, Jen!!!
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Jen,
I'm so happy for you!
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Wonderful news Jen!!
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Wonderful news Jen! Gives us all hope.
Intolight-Glad your meeting with your brother went well.
RRabbit-Glad to hear your good news too. Hope some of those tricks work to eliminate the pain.
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That’s awesome Jen!!
So far so good, pain is being managed, and the tricks are most helpful, hubby said he has many more ideas!
So I have like 3 pills left cycle 2. No mouth sores, did have them a tiny bit on tongue and one inside my cheek but they went away, for on the cheeks they felt like like cold sores or canker sores, on the tongue they feel like you burnt your tongue but you didn’t. I still recommend Colgate Peroxyl rinse, for the most part it keeps them at bay and if I get them it really helps to heal them.
Gas, still historical. I do notice a lot more mucus production the last couple days and when yellow meets porcelain it doesn’t smell the greatest. Ibrance symptoms kee-rect? It’s hard drinking to keep things flushed out and moving even when I’m not thirsty, ah well, I might try adding more propel electrolyte stuff to my water, maybe a flavor shakeup is in order
Will get my break soon but ready to start dancing again once I get my reprieve Cycle 3! Hope everyone is doing well! 0 -
Jen~I don’t post here, but wanted to say how happy I am you’re responding so well to Ibrance. I am right behind you one month. I am starting round 38. I am also very thankful for ibrance. So keep dancing ladies! Had to say congrats to you Jen... you have Always been so Kind and supportive to everyone.
Sending a Hello to Pat! Always a pleasure reading your posts. Your an OG to this thread sweet woman. Hope all is well.....
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Micmel,
Congrats on #38! You ladies give me hope of staying in I\L for a long time.
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Hi all.
Jen- I posted to you on the Bone Met Thread, but WooHoo again to you.
Well the mouth sores I posted about, previous page- a few days ago, are gone. Bit myself? Burnt with food/drink? Or Ibrance? Who knows. Hopefully will not come back. We will see.
I am on my week off Ibrance now. I do not see a difference in the week off the med. Never have. Fatigue is still a biggie. Yesterday I was busy helping a friend decorate for a Christmas Party and when I got home I felt so fatigued I felt like puking. I felt plain awful. But if it is keeping the cancer at bay, then the Ibrance is worth it. Start Cycle 25 next week. And stable with organ involvement.
I change to COBRA and a new insurance carrier in January. I don't know yet how that will effect the copay for Ibrance. I have been paying $35.00 a month. Hope it stays affordable.
Everyone have a good weekend.
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Radgast - I know what you mean about the urine - in the mornings its like radioactive yellow dye I swear. And I drink a lot of water a day!
No gas but Ive got some indigestion, but that could be from the rads yet.
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I have used these forums as a learning tool as I was newly dx stage 4 at the end of July. I’m finishing up my third cycle of Ibrance/Letrozole and truly grateful that I have not experienced any significant side effects other than fatigue. Some of that goes along with a nasty lower back that has so many issues, which adds to pain and fatigue. My big side effect seems to be ‘chemo brain’. I complained about it when I finished treatment years ago. But I feel I have a truly more recent onset of not being able to remember things and my kids and husband remind me of my shortcomings (in a good natured way but underneath is concern). Anyone else experience this as a side effect?
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GoldensRBest, I think the memory issues are mostly the letrozole, rather than the Ibrance. I have experienced quite a few instances of "word loss" and other short-term memory issues, like showing up two hours late to a birthday party for my daughter's friend because I misremembered the time I had read on the invitation that same morning; or holding a bottle of pills in my hand and not remembering if I had taken the meds and was putting it back on the counter or I had just picked it up and was yet to take them. I often find myself telling colleagues I will do something as soon as I get back to my desk and then completely forgetting until hours, sometimes days later. I told both my boss and my secretary to be aggressive with reminders if they need something from me and it's not happening. I also put everything in my phone calendar and set reminders on top of reminders. Thankfully my long-term memory and understanding have not been affected. It's all quite typical with estrogen depletion, and I don't think there's much to be done about it, other than setting reminders and asking people to be understanding.
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Hello everyone! It's been awhile and I thought I would catch up since the last time I logged on, so here goes...
Penny - Whoa! What a couple of few months it has been for you... root canal and wrist surgery.
Wandering - Great news on your tumor markers! How is your jaw pain?
Husband - Yay for your wife continuing on I/L. That's wonderful that she's been on it for 30+ months.
IntoLight - Great news on your scans! HOw did the meeting go with your half brother?
RadagastRabbit - Sorry for all the pain in your back. Hopefully Gabapentin will help you. And good news that there is no treatment change for you.
Candy - Great news about your November scan. Good luck in January with COBRA *and* the new insurance carrier. I hope you'll still have your $35 copay.
Melissa - Did you get your prescriptions ironed out? I hate going/changing different insurance companies.
Aprilgirl - welcome to the thread! The ladies here are super helpful and wonderful. Good luck with I/F.
Karenfizedbo - Congrats on cycle 18 and a NED scan report!! Woo hoo
Ginny - I usually get CT scans. There was a time when the doctors thought I had some metal from a reconstruction surgery still in me. I think they get what they need from CT scans, as they haven't done a MRI on me. I have had a PET... but they are few and far between. Usually done at staging or restaging for me. I have an allergy contrasts - I am allergic to iodine - so I premedicate. I take high doses of prednisone before my CT. It works. I haven't had an allergic reaction. I hope your scan went well yesterday. Can't wait to hear about your good news on Tuesday!!
Lucky4Life - Congrats on cycle 76!
Sondra - I will never give up my cup of caffeinated coffee!!
Anewbreath - I agree with Jaycee. They have the same exact active ingredients... it's just the fillers that may be different. I always had the generic.
Sandi - Your five days sounded great!
Janky - have a great time in Mexico!
BlueGirlRedState - my MO does regular 3-month CT scans to monitor my cancer. He also does blood tests (CEA, CA 15-3, CA 25-27), but sometimes they don't align with the CT scan.
airlinegal - That's is good news about your PET scan. Holding out hope that the fluid will decrease and maybe it was a viral thing causing an increase in fluid in your lungs.
jensgotthis - Congrats on your 4 year mark!
Micmel - hooray for your stats, too!
Golden - I have issues with remembering things. Just like Piggy mentioned, it takes just a split second to forget what I was going to do. It's aggravating. Even words fail me sometimes.
Pat - How's lynparza doing for you?
As for me - it has been a busy last four weeks. At the beginning of November, one of my co-workers went on maternity leave and I had to pick up some of her work. A week after she went on leave, may family and I went on vacation to California for a week. We went to San Francisco and then on to Disneyland and Universal Studios. It was a blast. We are Harry Potter and Star Wars fans. So we had fun geeking out. When we got back, it was Thanksgiving and we had family come in from out of town. On Monday, it was my birthday... so I have had a swell birthday week. I got a vacuum from my husband, but the best present of all was my 12/5 scan results... I am still NED!!! Lynparza is still doing it's magic. (Good news for you Pat!) I also had my first bone scan which showed no cancer in the bones. I go back in March for a re-check.
To all those that I didn't address individually above... hope you are all doing well.
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SEs, they are so variable. Sometimes I worry, that so far, mine are not bad. Is the Ibrance working? Cycle 3, Day 4.
Jen – way to go, it sounds like you've given cancer a big kick you know where.
Fatigue - I do feel fatigue more often than I used to. Sometimes wake up feeling very tired and a little achy, but it usually goes away within an hour of getting up. Thighs sometimes complain during walks/hikes, but I can usually power through it. Sometimes it feels like I've done a lot of heavy weight-lifting.
Mouth sores – I started noticing small (fluid filled?) roof of mouth, way in back. Gargling salt water AM/PM seems to have knocked them down. ¼ - ½ tsp in cup of warm water.
Memory seems ok, but sometimes I do go upstairs and forget why. Put Rxs and supplements all in a shot glass, put on table to have with breakfast. There was a post on the main page about chemo brain getting more recognition than it used to, and it sounds like it can come on well after treatment.
Gas and smelly urine. I do fart more often, no big embarrassments so far. Sometimes urine a little smelly, but no unusual color. Sometimes one of the B vitamins makes it very yellow in AM pee.
Fluids – drinking a lot 24 oz plus green tea. ND thought green tea would be good to drink. So not getting as much "plain" water as I used to. Do add non-sweetened electrolyte to water bottle when working out. Often chop up 1 TBSP ginger and nuke with water. Also like to warm an unsweetened mildly flavored water "Hint" on these cold mornings. And of course, the morning Coffee.
Hair thinning. Too much in the comb. Can't blame the dog and cat for all the hair I find around the house.
Stiff/trigger finger in one hand – probably the arimidex.
I have an extra "pill box" sent with the first dose. Slots for 21 days, then 7 different ones for the days off. I am not using it, and if anyone has a use for it, sent a PM with where to send it.
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Hi everyone,
Congrats Jen!
Holly , you're amazing with addressing so many of us here . I'll be sure to post after Onc visit on Tues., thanks for your input!I have 2 questions. First, is anyone thinking of skipping a cycle in order to enjoy the holidays a bit better?
Secondly, does anyone experience severe weakness in their legs?? My doc thinks that is coming from poor blood circulation rather than the treatment. It's getting worse after each Fulvestrant shot . I had trouble walking short distances for about 3 days after the last shot.
After those first few days, it comes and goes, sometimes I can walk around a store but it's much slower than it was before but on others days, I need to get support from the shopping cart and I need to keep my walking down to a minimum in order to have enough strength to get back to my car. Needless to say, I'm fine once I sit down.Any input will be appreciated!
Praying that we all enjoy the holiday season....
Love yas!
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Ginny - I have bilateral leg muscle weakness, but I also have a mess going on with my pelvis and mets and suspect it is more related to that, and limited movement for the last five weeks, than the drugs. I have a check in with my MO on Thursday to go over how Im doing (just started but have to say leg strength is getting better, not worse) and want to ask about this. I do wonder about the heart stuff and poor circulation, as we don't have cancer in my family but we DO have heart issues. Conveniently my hospital is a center of excellence for only cancer and cardiac, so if I need some tests they can just chuck me up to the third floor I imagine.
Question - my bad boob is achy and with some (light) throbbing pain under/near the nipple, in the area of the tumor. I had a reduction in '99 and havent had much feeling in either breast or nipples, except for now. I can't tell you how many times I have crashed on that poor boob through various winter sports activity mishaps, and it never felt like this. Does this mean the drugs are working?
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Update on my statin experiment:
Background: I had been having terrible leg pain, which was getting worse and worse. By the end of the summer, I was using a cane, to try to avoid waddling. Both knees, both ankles, and both insteps hurt like crazy. I blamed the Ibrance and/or Letrozole. My oncologist told me it was a possible side effect, and to try exercise to minimize the pain, but it hurt just sitting still, never mind exercising! I was taking an average of 6 Advil a day, which is a lot for me.
After reading some reports mentioned in this forum, about the effect of Ibrance on Statin drugs (apparently they use the same pathways, so the Ibrance caused the levels of statin drugs to remain higher in the body), I decided to do an experiment. Starting on October 1, I only took my Atorvastatin 20mg (generic Lipitor) every other day. My last cholesterol reading was 148. Last week, I had blood work and saw my regular doc. My cholesterol was 168, which is still very good (my non-medicated numbers hovered close to 300). She told me to continue taking it every other day for another three months and we'll test again. She expects it to be the same, as long as I continue taking it the same way, which she and I are both very happy with.
End result: NO PAIN! I tossed the cane after a few weeks, and now walk perfectly normally, with no pain in knees, ankles, OR feet. I feel like a new person. Husband and I went to the mall yesterday, and spent six hours walking around and shopping. I felt great. Two months ago, I was unable to walk for half an hour without needing to stop, practically in tears.
I sent a note to my oncologist, explaining what I had done and telling her to change the dosing info for the atorvastatin in my chart, and she wrote back, "Good to know it isn't always the Ibrance causing the pain, although I guess in this case, it was still responsible for it...
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ciaci you're one smart lady!!! Hats off pain free and walking for 6 hours.
Tanya
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Ciaci- Success!! Isn't it great when you figure something out yourself!! I am still taking physical therapy twice a week for a frozen shoulder that developed due to my statin-Ibrance cross-reaction. It's been two months of PT at this point, and is making all of the difference, but I still do not have my full range of motion back yet in the arm. Will continue till I get there, whatever it takes. My arm was incredibly painful at night, we figured out that this is due to nerve pain rather than the muscle, and once the overall level of the pain died down enough it became clear that the pain localizes to the nerve bundle running down the front of the upper arm- and PT has a special thing they do to loosen up the nerve bundles, so that made another big jump up in pain relief. I had to go off of atorvastatin altogether, but fortunately Crestor does not use the same enzyme that Ibrance uses, and so that is fine- I also tried out my husbands Pravastatin, which is also OK- all the other statins cross-react. Right now all that is left is for the arm to have full range up and then especially to the back is tight, but the relief is incredible. And incredible how much pain you can get that turns out to be drug cross-reaction and not an accident or osteoarthritis or anything particular you are doing...
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