Ibrance (Palbociclib)
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In a warped sort of way, that’s good news, I guess. 2 broken bones. Hope doc confirms that.
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Chicagoan - Are you on bone strengtheners? The reason I’m asking is that there is some talk about long-term treatment with bisphosphonates for osteoporosis potentially having negative side effects in some people because of their effects on bone toughness - bones actually breaking easier. I think there is A LOT of research that needs to be done regarding cancer patients and when or if we can take a holiday so I’m not implying that Zometa or Xgeva are the root cause of your break. Rather, I’m simplycurious if you take them, how often and for how long.
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As a followup to what RK said, I just re-read the entries on BCO about bone strengtheners -- I've only had 3 treatments so far and am NOT a fan. But someone on there talked about her doc letting her get Prolia shots instead that she can get from her regular doc. Prolia and Zometa are the same chemical substance, from what I understand, except that the Zometa infusions have a much larger quantity of the drug. So that's something to consider, too. I'm going to ask my MO about it.
Good luck, Chicagoan, in getting back on your feet.
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Bevjen - Keep us updated on what your MO says. If we truly are living longer and longer, I have many questions regarding bone strengtheners. I just had my quarterly infusion last week and it probably has done some good but I’m trying to figure out when to stop…or like you suggested, reduce to an osteoporosis strength.
In 2020, LBBC published this session with Dr Brufsky so I get that these drugs have benefits. I’m just trying to figure out when the risk starts to exceed the benefit. https://youtu.be/8AmoeY9ohoY
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I am on Xgeva bone strengthener. Monthly injections for the first year, then down to quarterly. Now, we just changed me to every 6 months Xgeva. My MO said that with being on the med for 4 years I needed to get the injections less often to prevent ONJ and fractures. I asked the nurse about Prolia every 6 months versus Xgeva. She said Prolia was prescribed for osteoporosis, not breast cancer. So we have to use Xgeva with my diagnosis, for insurance purposes I guess.
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I have been on Xgeva for 5 1/2 years. For the first 2 or 3 years, I got it monthly, then I switched to quarterly. I do wonder if Xgeva made my bones more brittle. Initially, I was told that Letrozole would weaken my bones so it was necessary to take Xgeva. I've never broken a bone in my life before so for two bones to snap is unnerving.
I found out I will be going straight home in a few days even though I'll be in a cast for 6 weeks. I will be basically housebound because my front stairs don't have rails. I'll need to have the fire department take me down the stairs or possibly Medicar b/c I still need to get to doctor's appointments to make sure my leg is healing right. There are stairs in my home but I can live on one level. I'm getting a hospital bed, wheel chair and walker. My brother and SIL will help me get things set up. I wanted to do acute rehab but don't qualify. The PT and OT said I would be better off at home than in some of the other rehab centers. It will be nice to be home but I'm a little nervous. They say I am walking great. I have to hop on my right foot using the walker. I can only touch my left toes to the ground-I'm not supposed to put any weight on the foot. It's a little overwhelming but I am trying to take it a day at a time.
I checked with my MO-she said to stay off Ibrance for a few weeks, so I will. This is my off week and I'll wait two more weeks before resuming.
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Chicagoan,
If you want to go to an acute rehab facility, I would push back with the social workers (only if you want to do it). Last April, I had a hip replacement and placement of a rod in my left side. I had had two operations within 6 days, was sick from all of the opioids that they put me on, and was a mess. I just turned 70, so I was 69 at the time. The docs and social workers told me that I wouldn't qualify for an acute rehab, which is where you have rehab three hours per day. They made it sound like barely anyone can qualify, and they offered me a slot at a Medicare facility where I would have gotten maybe an hour to an hour and a half of rehab per day. So I was transported there, and immediately upon getting there, I realized what a big mistake this was. I managed to get in touch through a neighbor with an acute care hospital and they reviewed my records and said they would take me. I spent almost a month there, followed by outpatient PT for another six months but I don't think I'd be walking today had I not gone there. They were so good at what they did. And the "acute" part of it was not bad -- I did about an hour and a half each morning and the same in the afternoon, with resting time in between. I saw the doctors at the facility for my time there.
When all was said and done, I wrote a nasty note to my social worker who pushed me to go to the nursing home rehab. At almost a year later, I can say that I would not be walking today had I not gone to the acute rehab place followed by the outpatient PT.
Please feel free to PM me if you need more info.
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chicagoan, thank you for the update. I hope your pain is under control and that your BP issues get resolved. When will they let you go home?
Carol
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My MO stopped my Zometa about 6 months ago. she said that it has decreasing benefit to risk ratio after 4-5 years and it would be in my body for years. I listened to the lecture by Dr Brufsky before my MO mentioned it. It sounds like Dr Brufsky said since people are living so much longer now- we have to figure out how long to keep them on bone strengtheners.
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Chicagoan, I am glad that the surgery went well. BevJen has some great advice. You will be in the hospital a few more days which is good so you can get things set up for you at home. My husband ruptured his achilles, each side a year apart (left in 2017 and then the right one in 2018....he was playing "touch" rugby at 55 years old both times!!!) and had them surgically reattached. No weight bearing for something like 6 or 8 weeks but he could use a knee scooter. It was challenging to bathe and all tasks took a lot of extra time and he also could not drive. In your situation, I sure hope medicare will send someone to your home to help you bathe and also assist you in getting out of your home to get to appts. Don't be stoic - if you feel like you are at risk of falling you could injure yourself worse. If that is a fear, I think BevJen's advice to push for a acute rehab facility is a good idea.
GERD: I have never in my life had acid reflux but guess what....I have had it all this past week. It has shown up in my last two pet/ct scans but I had no symptoms until now.. "inflammation in distal esophagus indicative of reflux". This is very uncomfortable. Of course, I am one of those people that live on spicy foods so have eliminated those from my diet but it still burns. I will send my oncologist a message via mychart but if anyone as experienced this, I would love any advice. I have been eating tums. Not really helping yet. Is this a side effect of Ibrance?
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Aprilgirl - My husband has suffered from severe GERD for quite some time. Until we got a bed SleepNumber bed with a head lift, he slept on a wedge pillow. It took some time for him to get used to it, but it helps because acid is heavy and stays lower if your head is kept higher. He also had to stop eating at least 4 hours before bed (6 pm) and avoid trigger foods such as tomato sauce after 4 pm. And he loves his spicyfood so he cut WAY back on that too.
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I'm hoping this post will post, I'm trying to type as fast as I can and hopefully it will show up. I've missed being here and hearing from you all, it's made me feel sad. And kind of grouchy.
Aprilgirl, first of all, congratulations on NEAD! And sorry to hear about the GERD, I love salsa and I have to be careful not to go crazy with it late at night ("late" being like 930pm, of course).
Chicagoan, I'm so sorry about your broken tibia/fibia, I'm really hoping you heal really well from the surgery. That pickleball is fun! But not when you break things, of course.
Katyblu, I'm also sorry about your tumor markers going up, I hope you got some kind of rest and relaxation this weekend, and that you can talk to your MO tomorrow about it.
Ciaci, also congrats! And I'm very curious about the blood test that looks for circulating cancer cells, that's kind of fascinating.
Spookiesmom, in your pocket for your PET scan tomorrow.
Sending love and hugs to you all, waving hello to Sunshine, KBL, Candy, RK, Bevjen, Serenity, B-A-P, Nkb, Anntop, MaleBC, I know I've forgotten people I love, but I'm typing super fast here! Ack! PLEASE POST!
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sf-cakes, thank you. Hi back.
Aprilgirl1, I have GERD, but I think it’s silent GERD. I don’t get the burning. The meds I took were omeprazole and Pantoproprazole (spelling?) Not at the same time, a few different times. I am on Xeloda now and can’t take them, so I take a maximum strength Pepcid before I eat in the morning. I do sometimes have burning in my stomach, but it doesn’t usually make it up to my throat.
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I used to get reflux. I used Gaviscon liquid. It’s otc, similar to maylox.
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Hi all, thanks for the GERD tips!
KBL, I think mine was silent but it is silent no longer! It has shown up on scans intermittently for the past 2 years. My mother has it as did her mother so it could just be a family trait. Now that it is painful I am very interested in reducing it plus I suppose no inflammation is good, right?
I read that advil can make GERD worse so eliminated that as well as most of the foods I have read to avoid. My arthritic hands hurt but I will try voltaren cream. I ordered a wedge pillow , thank you for that suggestion RK2020 (I did look for one in person at target and walmart but both were online orders only). My husband helped me form a wedge from pillows until I get the offical wedge (he was happy to find a use for our excessive pillows on our bed that are mostly for decoration!). Although it was hard to sleep on my back, I woke up without the burning. Took a prilosec this morning 30 minutes before I ate breakfast as the instructions stated and so far, so good! Sppkiesmom, I will try gaviscon liquid if this doesn't settle down. I will also send my oncologist a message as I believe there is some interaction with some of these meds with Ibrance but the new caplets might be ok?
SF-Cakes, I love salsa. I typically eat salsa fresca on scrambled eggs every am (today I had plain oatmeal). My parents have always been surprised by the spicy food I eat all day every day and perhaps that has caught up to me;)
No more jambalya this week! I don't drink a lot of alcohol but have eliminated that as well. I don't eat a lot of fried foods but bring on the hot sauce is not something I will say for awhile! If this is my biggest complaint, I am doing alright. Time to dust off the gratitude journal I purchased in December but haven't cracked open.
Either I am getting used to the new format or it is getting quicker to load. Miss you all, hope you are doing as good as we can be!
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Aprilgirl - I hadn't had a problem with GERD either until about 6 months ago when it came on with a vengance. I chalked it up to eating too much fatty food and my dad's terrible coffee and it calmed down for a bit when we returned to the UK, but then they gave me lansoprazole with the ibuprofen post surgery and it was like my life changed. I stopped it in Jan and had some really terrible reflux nights, so took it again and it went away. I could eat all sorts of normal food I love too, including spicy stuff.
I haven't had any GERD since I stopped Ibrance, so I think that was the culprit. Id ask your team about something to help suppress the stomach acid.
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I am hoping this posts. I have been having problems accessing the site over the last few days. So I talked to my MO, he noticed the numbers too. He believes it's just a lab error as a level that high would show disease that has heavily progressed without treatment for a while. And since my last scan in February didn't show any progression he's pretty sure it's nothing. We were also waiting for my CA 27.29 to come back and that showed a 50% decrease from last month! I started at above 8200 and last month was around 4000 and this month it's around 2000! Woohoo! I also am doing another round of blood work on Wednesday to check neutrophils and we're going to run 15-3 again. So thank you all for your care and concern!
Chicagoan, I am so sorry about your breaks! I'm glad surgery went well and I hope your pain management is going well. I would look into what BevJen has said about the acute care facility as it sounds like you would benefit greatly from it.
April - I have GERD. I was taking omeprazole but it's counter-indicative with Ibrance so now I take Pepcid. I love spicy food but I've had to decrease the heat a bit. No moer crazy Indian and Thai food
Spookie - In your pocket for your PET scan!
I hope y'all are doing well!
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Sorry for anyone suffering with GERD.
Aprilgirl1, I’m not so sure the spicy food causes it because I can’t even eat black pepper. I’ve never been able to do spicy. I don’t know if I have too many or too few taste buds. They suck, whichever it is. I’m sure it could be a cause, but that’s not why I have it. Just wanted to let you know that’s great you ordered a wedge pillow. I hope it works.
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Katyblu - that is all very good news! Fantastic that your CA27.29 has gone down so much! It's also good that you MO is going to run the 15-3 test again.
SondraF - so good to hear from you. Sorry you also experienced Gerd on Ibrance....it does seem to be a common "side effect" ....hope you are all healed from surgery and radiation. Let us know how you are doing!
KBL - I dont know if spicy foods are the cause, either. I am eating pretty bland foods today like oatmeal, chicken noodle soup and so far, it's been ok.
Onc. nurse messaged me back that the pharmacist said it was OK to take prilosec while I am on Ibrance but like KatyBlu said, I think I have read it can reduce effectiveness of Ibrance? I can take Pepcid if that is better. My plan is to take it for a few days while eating bland foods and if it doesn't start up again, stop the meds while sleeping on a wedge and watching what I eat.
Onward:)
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Katyblu - Yahoo! 🎉 Keep the good news coming!
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katyblu, That's awesome. I hope the 15-3 shows improvement as well.
Aprilgirl1, that's great you were okay after eating bland. It just sucks because you love spicy. I hope it continues to feel better.
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PET done, results Monday. Think all is ok. Food is boring bland. Hope you find something that works.
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Spookiesmom, good to hear the scan is done and behind you. In your pocket for results.
So far so good with my newly incorporated bland diet;)
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Heal well
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KatyBlu -- that's good news about your markers. I tried to post encouragement to you and Spookie, for your scan, yesterday but the site crashed on me.
Chicagoan -- rats, cats, and bats on your broken leg bones. BevJen gave some good advice. I hope things go smoothly over the next 6 weeks.
SF-cakes, good to hear from you. The Rats, etc make me think of Rabbit and you.
AprilGirl -- it may be a long shot cause for the GERD, but my BIL had GERD for quite a while. It turned out to be a C. difficile infection in his gut. Between chemo and the drugs we take, it's easy for our gut bugs to get out of whack. Ibrance may set up a welcoming atmosphere for bad actors, A simple stool test would tell if this might be the cause.
We had a surprise snow in Middle Tennessee last Friday night, and by Sunday the temps were back in the 50s. Now we're looking at a string of warm days. Spring is busting out all over here. Here's to our blossoming too!
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Hi everyone-thank you for all your good wishes. I'm going home tomorrow with a cast and feel pretty comfortable about it. Getting up and down and walking with the walker is easy now. I live alone but my brother and sister-in-law are going to be there to help get everything set up. I'll have a hospital bed delivered and plenty of friends are offering to help so I'll think I'll be fine. Yesterday, they tried to say I needed to go to a sub-acute rehab. Luckily some friends were visiting. It was really irritating since I have no trouble getting around but their recommendation was based on my having cancer and living alone. My friends sprung into action so that they could see that I do have robust support network.
Finally saw the surgeon today. He thinks the breaks had nothing to do with my cancer and said my bones looked pretty good. Next step is to check with my MO to see if my XGeva should be moved to a lower frequency. BevJen-was your femur break attributed to Xgeva or other bone "strengthening" meds? Candy, if you have that article linking the use of 5+ years of Xgeva to bone brittleness/breaks handy I would appreciate it. Otherwise I can scroll back but we all know this is a problem at the moment. I've tried to post updates a few times but "the system was down."
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Chicogoan,
My femur issues had zero to do with a bone strengthener. Until I was in the hospital for the femur issues, I had successfully resisted my oncologist's entreaties to start a bone strengthener. While I was bed bound and otherwise drugged up, they told me I needed one and started me on zometa. I've had 2 additional infusions since then.
However the surgeon did tell me that my right femur had deteriorated due to both cancer and arthritis. Now I ask you -- with all of the scanning that we get wouldn't you have thought that someone would have noticed the arthritis issue prior to this? Maybe it would not have made a difference, but other than reports on bone scans since 2019, that mentioned arthritis in several parts of my body, nothing was ever said about it.
Good luck with your return home. You probably will need PT/rehab -- you will recall that I suggested an acute rehab facility, but short of that, make sure that you find yourself a really good PT place -- the storefront ones aren't necessarily the best, but if you have a rehab hospital near you with outpatient facilities that would be good -- and I think you said you are on Medicare. It's covered. After my stay in the rehab hospital, I went to six months of outpatient PT to get back my strength and balance -- all covered by Medicare and my Medicare supplement. My experience with the in home PT folks was that they weren't too great either -- but again I'm just relaying my own experiences and what I learned.
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Chicagoan- I am sorry, but I do not have an article to refer to about 5+ years of Xgeva use and complications. I have just read/heard this with reading here, doing webinars about our cancer, etc. And my MO said that with me being on it for over 4 years she wanted to spread out my doses even more than quarterly. She has not said anything about stopping Xgeva, though. Sorry I cannot be of more help with documentation to prove/disprove this.
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This is just musing but does anyone have any good, not too scientific articles about how CDK46 inhibitors have changed the treatment of metastatic breast cancer, increased progression-free survival because I read an article saying they were only of moderate befits, yet another article says they are a game-changer or a breakthrough in the treatment of metastatic breast cancer.
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Help My pw does not
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