Ibrance (Palbociclib)
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Pearlady, who advised you not to take calcium and why?
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It was suggested that I really didn't need to take it with the Zometa. He didn't say absolutely not to. Sorry if I wasn't clear on that. I'm sure if my bloodwork showed that I needed it he would have advised otherwise.
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Just to throw this in the mix, my onc prescribes calcium with Xgeva. This med can really lower your calcium levels to dangerous levels in some people, so a supplement is recommended. The nurses check my calcium level before they administer the shot. They do this for everyone, apparently.
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Same here with me as Sandilee. Calcium level isalways checked as Xgeva pulls the calcium. This was stressed to me. So I take calcium + vit. D.
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Thanks Deanna for that info. I also feel I want to see how the regimen goes before I start jumping into another realm that I am not well versed in. I have a second opinion appt. with UC Davis down Sacramento way soon and will see what they have to say. I just plan to take it slow and gather information everywhere I can and not jump into something well armed. I am just so inspired by you Pearlady doing well with them I think it is something to consider. I will try the blackstrap molasses for sure Pearlady!
Jobur, yes I plan to utilize all the services my center offers for free! Went to the gym today to keep those endorphins buzzing! I just hope I can continue to work straight through as that also helps get my mind off of it.
Good to know Lynnwood and Myra that there has been no temps over 100! I worry about that as I work the front office at an Elementary School////Sunshine I have no insight on your situation but am so sorry about the Meds situation. Thinking of you and hoping they come up with another combo to put off the IV chemo. All: I am on calcium because I have osteopenia and she said the Ibrance in particular can cause further bone loss.
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Sunshine, the TM's on this drug have not always been reliable (my TM's and Myra's were opposite from the scans). Also, I wonder if the drug has had enough time to keep working. I'm praying for you and for everyone to find a drug that is effective and tolerable.
My onc and surgeon were both not big on supplements as long as you eat a healthy diet - except for vit D and fish oil which they do recommend if you don't have fish once or twice a week (they think the wild fish such as salmon with lots of Omega is better than pills). Hard to get wild fresh fish, though. I try to make sure we have tuna at least once a week, and fish when I can. I don't take calcium, but I do take a couple of TUMS at night as needed in addition to Zantac, and TUMS are loaded with calcium.
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Popping in to catch up after not posting for a while. So glad to see so many familiar names. Myra glad you are having such success on the Ibrance and CONGRATULATIONS on your new grandbaby. Such a blessing. 3Holly, Sandilee, Pearlady, JFL, Romansma. I'm following all your stories and all the ups and downs. Sending good vibes to you all and to all the newbies. Hopefully we can all find what works best for us individually whether it includes Ibrance or not.
As for me, I was taken off 125, took a break and just finished my first round at 100. My tumor marker crept back up a bit during the break but I scanned clean. I have ILC so I tend not to trust scans too much. Even when nothing shows something is still bubbling away in there. Luckily, for the time being, it appears to be on simmer. My tumor marker dropped back down a bit two weeks into the 100 dosage so that's a positive.
The issue for me is still the low counts. I do feel some fatigue but not completely wiped out on the 100. I just worry that my counts are so low that other issues with arise... like what happens when you are chronically anemic? How susceptible am I to infection and is it just a matter of time before I get something nasty. I'm walking a thin line but my onc seems to think the benefits of the Ibrance outweigh the risks of my counts being on the lower side. Fingers crossed and on to round #6.
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Kaydee, so great to hear you are doing well. I know what you mean about the worry about low blood counts - Good to be cautious of infections, but I guess we should try not to worry since worry isn't good for anyone. Sounds like the lower dose is working to keep you stable, and hopefully not as tired, so that is great news!
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Kaydee thanks for checking in and letting us know that you are doing well on the 100. Its always a fine balance when dealing with side effects and the drugs, but it seems that the benefits of Ibrance do far outweigh the risks. My onc has not told me to do anything differently with the low counts other than trying to get more rest and not push myself as much as I am likely to do. I find if I am tired from a difficult day at work, I'll just sleep and bit later the next day and get to work an hour later. A few years ago I would never consider that.
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one week down on cycle one. I drove to our home to get everything ready for our arrival next week (moving back after active tx) and to unpack boxes and deal with some mice in our garage. The weather was HOT and with the work and bit if altitude, I was very faint. I also felt very strange and out of it, so a bit concerned it is my counts already. Things are settled now, and I'm back home, so I'll see how it goes this week, and what my labs look like by next week. Back and neck aching from Femara? Or maybe just twin duty. I'm tired and feel so much weaker than a year ago. Just want to rebuild my strength and stamina
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Hi All : I've come to the end of my second cycle. My oncologist is keeping me on the 125mg for now. My counts were low but still in range that he's not concerned. He said that he wants me to stay on 125mg to try to shrink the tumors. I'm feeling pretty good overall. I think the bone pain may be coming from the Femara. I hope that's the case. I get a little weak at times and tired so I just rest. I wont know what my tumor markers are until a few days when it's posted in my chart. My appetite isn't too good, so I'm supplementing with Boost drinks twice a day.I read that ginger and garlic helps to keep your counts up . I'll try that next week.
I hope everyone is having a good response to this drug. Everyone with tests and scans coming up I wish you the best of results.
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Hang in there Gatomal and mscal02. The fatigue, unfortunately, is prevalent in Ibranceland. Sometimes your body will adjust and you'll get some energy back. If it becomes overwhelming some oncs adjust the dose. It takes some time to figure out. Just be kind to yourselves and rest when you need to.
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What seems to work for me, dealing with the fatigue, is to alternate busy days with rest days. Driving (mom's taxi service), running errands, and grocery shopping are particularly tiring, so I try not to do that two days in a row. (I know I am fortunate that I can adapt my schedule.)
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I have decided to break down and hire a part/time housekeeper so I have more time to rest and do the other things I want/need to do. So, part of battling the fatigue is just trying to find a way to eliminate some activities you can do without so you have more time for the other stuff. I can definitely do without the dusting. My husband does the grocery shopping now and he and I are going to put together meals on Sunday so I don't have to do as much cooking during the week. I seem to always have a surge of energy between like 9-2 but then I completely bomb out in the afternoon and evening. I'm on my second cycle, I'm also on the 125 dose... I did not feel any bounce back on my week off at all, I was actually more fatigued. Anyway, blood work on Monday. I get mine checked every two weeks. Any energy tips?? I'm going to look into some energy smoothies or something to see if that helps.
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Chatty,
I have just finished my third cycle and am on my week off. During the past two cycles the week off was the worst for energy for me, but I have to say, my body appears to be adjusting. This cycle has been much easier from a fatigue point of view. I still want a nap in the afternoon, but they don't need to be as long [20 minutes vs 1 hr] and somedays I am actually able to push through and do without.
I am also on the 125mg, so maybe there is hope that your next cycle will be easier for you. [?]
*susan*
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Chattykat, what is this "dusting" you speak of?
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ShetlandPony... Dust bunnies drive me nuts! But, I'm letting it go, among other things.
Susan... I sure hope I see some fatigue relief in the next cycle too. Glad you're seeing some improvement. That's definitely good to hear. 0 -
I've asked my DH if he wants me to get help with the house keeping and he says no he'll do it. I do the laundry, cooking and dishes in steps. He does the vacuuming ,mopping and dusting and throw something on the grill. If I don't feel like cooking we have take out. I'll be going to Hot Springs AR. with 2 of my friends this week for 7 days. I already told them ,that I'm going to rest and relax. I prepared my DH some meals , because he'll eat junk and cereal the whole time just about.
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Had a brain MRI yesterday and it came back normal much to my relief. So feeling a little more chipper today. Only 4 ibrance pills so far but I think I'm feeling some slight fatigue creeping in. I was helping my DH stack fire wood for a few hours just to keep this body moving and felt a tiny bit of whoozyness, but pushed through it. 3holly I agree about trying to keep the diet good and in balance to see how it goes. Easier said than done sometimes as that is time consuming in itself.
Gotamal, moving is one huge job in the best of circumstances so very understandable that you feel wiped out. Welcome back to the Bay Area though, where my family is from!
Chatty, I really like the idea of prepping a bunch of food on Sunday and am going to give that a try. I always bomb out in the evening more than morning too.
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Hi ladies!
Since I have written last I switched my care to Johns Hopkins which was a great choice. I have better access to test results and reports, which I love. I am day 15 of the 3rd cycle. I am an assistant principal at a high school that doesn't have the easiest population of kids to handle. School started this past Monday and I had alot of anxiety leading up to the first day. Did I have the strength to keep up? Is my immune system strong enough to be in a building with kid germs? My counts have always been slightly low. My Ca 27.29 was at 10.7. I am worn out! Body aches... Back hurts...ribs hurt and feet are throbbing. This has been the worst I have felt since starting. Any suggestions for relief with the achiness?
Monika
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Monika,10.7 is great!! What you are experiencing is my biggest fear about going back to work in October. I am a nurse and stand on my feet and walk all day. I already get tired and achy just watering the flowers! Germs are also a concern for me, I am exposed to all kinds of germs...norovirus, flu, shingles, MRSA to name a few. Are you taking pain meds, I intend to take my meds as soon as I get to work, to maybe get ahead of the pain. I am also open to any suggestions that anyone has
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Monika, try soaking in a bath of hot water with 2 cups of epsom salt. That really helps with aches and pains. Sounds lije you are doing great on ibrance.
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Well ladies I'm on the lowest dose 75mg. My platelets were critical on 100mg. I did my blood work last Wednesday and my coubts were low but ok. But my TM went back up. I hope to try another cycle to see if that low dose will really work for me. If not it will be chemotherapy. I am not looking forward to that at all. Still praying by body will respond to ibrance. Good luck to all!
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Sending prayers and good vibes for you Sunshine!
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Sunshine, sorry to hear the dose had to be reduced again. I hope your platelets increase and you have a good long success now.
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Monika, some essentials for managing work with achy body are: good chair to support your back at work, taking regular mini breaks to sit down/rest your back and body as the job permits. At home, try to minimize cooking/cleaning/etc. where you are leaning over things - like the oven, sink, dishwasher - it can aggravate rib/back pain, use heating pad, stretch/do yoga as your body permits. I also mostly work out at night now so I can rest my back/ribs afterward while I sleep. It is as if my bone mets have a quota of daily activity and once I hit it, my back/ribs get fatigued. Seems to improve with each successive XGeva shot though. One other thing to consider - my onc put me on Cymbalta for joint pain. It has eased the joint pain to manageable levels and also seems to improve the bone mets pain a little.
I am on 100mg of Ibrance and in my 3rd cycle now (1st cycle 125mg, 2nd and 3rd 100mg). My counts were good last cycle and my neutrophils never dipped below 1.1. My doctor told me I didn't need to do bloodwork mid-cycle this round because my counts were stable last round. However, my worried husband insisted I do labs at the 2-week point, which I did. It turns out my neutrophils are down at .7. My doctor is keeping me on 100 though. He stopped me on 125 when my neutrophils hit .9 but told me he would keep me on 100 as long as I can stay at .5 or higher. Hoping I can stick it out here and don't need to move down to 75 at some point.
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So I've been at the Cape (Chatham) since Thursday night visiting my sister and brother in law with my DH. Woke up this am and was throwing up. Felt hot and sure enough my temp was 103. So my sis took me to Cape Cod hospital in Hyannis. My left side is very hot to the touch and is very red. I can't believe I have cellulitis again. Will be put on vancomycin. Won't let them admit me here. Want to go back to NY. My implant may have to be taken out. Just can't believe this!!!! My final sc was October 2014. Don't know why this happened now!
Babs
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Babs, I am so sorry that you are going through such a terrible time. I agree that if possible, get back to NY where you feel more comfortable and confident. I know I would feel the same way, especially if the implant needs to be removed - and I sure hope that's not the case! Please keep us updated. I will be thinking of you and hoping you begin to feel much better very soon.
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Babs, so sorry feel better. Nothing worse than being sickaway from home. Don't blame you for wanting to go home to familiar surroundings.
Chattykat, I also got a housekeeper once per week who also does most of our laundry. It is really a load off.
Well, enjoy all. The Sunshine State is less than sunny today, but at least TS Erika dissipated so we didn't have to evacuate, since we live on the beach.
Hugs, Myra.
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Getting a 2x/month housekeeper shortly after I was re-dx'd with mets was one of the best things I've ever done. There's no way I could keep up without her. I would economize elsewhere if I had to not to be without her.
Babs, so sorry about the cellulitis. Hopefully, things will improve quickly when you're home. And I hope you won't need surgery.
Can anyone else speak to gastro issues with Ibrance? I finished my 1st cycle 3 days ago, and I am still dealing with excess bloating in my lower abdomen (bowels). At the suggestion of a Cigna pharmacist who called me on Friday to be sure I'd received my 2nd cycle meds and asked me about any SEs, I bought some Gas-X yesterday to see if that helps. But some nights I have been so bloated, I look 6 mos. pregnant. It's a little better now that I'm in the down week, but not totally gone, and I'm just wondering if anyone else has had a similar issue, since "bloating" isn't specifically mentioned in Pfizer's literature. I realize it could be a combo of Ibrance and the increased pain meds I've needed the past few weeks, but looking for assurance I'm not alone and any tips to deal with it.
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