Ibrance (Palbociclib)
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Hi all! Sorry I have been absent for awhile but I have returned from my road trip safe and sound after the last 100 miles of monsoon, scary pouring rain today. But my DD did an amazing job of driving and all is well. While I was gone, I prayed and cried along with you as I read the posts each night. You are teaching me and I am learning so much. I did ok on the trip with no major problems, and saw some dear old friends who were pleasantly surprised to see me doing so well after 14 months of treatment. Of course, they only saw me up, smiling and sporting my wig (sort of a Julie?) and did not see me lying exhausted in the hotel room in tears because I felt ugly against all of the ladies and girls who just spent 3 days getting facials, their nails done, hair done, and general primping and indulgence. It is just something I had to accept and I was not happy...they did not purposely exclude me, I just was not part of their group since I no longer live there and was not in the wedding--and feeling sorry for myself. Sorry for the rant. That was the downer of my trip. The rest was great! And my eldest son flew in to join us for a few days so it was a special time.
GG22, my hair did greatly thin but it seems to have slowed a lot now and maybe stopped, and I am 14 cycles in. I am considering a good haircut and color, especially after these past 2 weeks! I let my hair go gray for the first time in 20 years, and I hate it!
As with several of you, I have my next scan Aug 1st and see my onc on the 10th. Here's hoping all of this was worth it!
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I was recently diagnosed with breast cancer that metastasized to my rib/spine area, after 7 years. This is my first round of Ibrance and Letrozole. I will also have an infusion once a month of Zometa to strengthen my bones. The fatigue is the worst for me. I have a bit of nausea, but only occasionally. My question is this -- does the fatigue lessen on the week that you are off of the Ibrance and only on the Letrozole? Glad I found this topic to compare notes with others. Thanks!
Hope
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Nonahope,
Welcome to our group-sorry you have to be here but here's hoping that Ibrance/letrozole works for you and you will enjoy many years of a good quality of life. The fatigue is real- we each have different experiences with it. For me, the fatigue was worse when I started-it did seem to ease up in the off week in the beginning. Now I don't have so much fatigue but it is somewhat unpredictable-sometimes I feel most tired in the off week. But after 10 months the fatigue is much less for me-what I have found helpful is faithfully drinking the recommended amount of water (around 72 oz per day) and exercising almost every day. As Zarovka notes, even a 20 minute walk makes a big difference. Personally I try to spend as much time outdoors, in nature, as a I can-I seem to get energy from the wind and trees. I also have chosen to stay away from caffeine and alcohol-this improved my quality of sleep and lessened the fatigue. Best wishes for a great dance with Ibrance!
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Chicagoan....thank you for your input and warm welcome. Not a place I want to be, but sure glad I have a place to go! I do have a difficult time with water. I will try to do better. I have to get back to my walks. That is the only exercise I ever did...and, it's been quite a while. Hopefully, when the weather cools down I can ease back into this routine. Do you also have infusions to strengthen your bones? I had to have my port re-inserted for this. The infusion is only once a month and it only takes about 20 minutes -- nothing like chemo. The only side effect is bone pain for a couple days afterwards. I will have scans every 3 months and I am already a basket case worrying about the first one!!
Hope
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Nonahope,
I get monthly shots of Xgeva to strengthen my bones. I have no side effects from the shots but I know other people experience bone pain and/or fatigue from them. As far as the scans go, I guess we all worry but I'm learning not to freak out because it doesn't do any good. The best for me is just to control what I can control-like drinking the water and walking (it really does make a difference) and not worry prematurely about things I can't control. Let's toast to life with big glasses of water-clink-clink!
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Hope, welcome. I wonder if your taking Claritin 2 days before your bone infusion, the day of, and for 2 days after might help you? I learned that trick on this site for Xgeva, which is another bone-strengthening medicine. It has also helped enormously with my Faslodex injections: the first two sets of injections were painful for a couple of days. On my third set, I had taken the Claritin (I take the generic version), and there was very little, if any, pain. Might be worth a try. Good luck with your treatments.
--Lynn
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Nonahope-One other thing-adding a little yoga or stretching too can really help. Many of us have experienced tightness in the calves/thighs and joint pains in the shoulders, feet, etc. Yoga helps a lot with that-just simple stretching on areas that feel right.
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Hi Nonahope. Welcome to this forum. You will find it loaded with many ladies who deeply care for each other.
I am on the same regimen as you: ibrance, Letrozole, and Zometa although I only receive Zometa once every 3 months. All the advice above is fabulous. After a few months I realized my week off was my worse for fatigue but tolerable. Do walk and drink plenty of water. It may take a few months to see good results so don't get frustrated. Know we are all pulling for you!
Chris
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Again, thanks for all the input. I've never heard of taking Claritin before the Zometa. My pain wasn't horrific, but just "there". I was hoping to hear the fatigue might lessen a bit on the week off...oh well...we shall see. My granddaughter is getting married on Aug.5th and I'm just praying I get through the festivities. I'm scheduled for my Zometa infusion on Aug.3rd....I will definitely be taking extra-strength Tylenol. That seems to work as well as the Tramadol that I was prescribed to take if needed. I seldom take it. My back pain is nothing compared to what I was going through just before I was diagnosed with the metastases. I hope that's a good sign.
Hope
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I also have thinning hair ,and I ready to start my 8th cycle of I dance and femara. I also hoping it thickens up. I thought I read a post where someone's hair did start to thicke
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Hello Nona hope. Welcome. I had my first Zometa infusion yesterday. Tolerated it very well no SE today thus far. I also I am on first week off (just completed by first round). I feel better this week for some reason. Perhaps too much early to really know as I am new to this as well but thought I would weigh in.
Cathy
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Nonahope - so sorry you had to join this group, but you will gets loss of support here. I never had zometa, so nothing there, but I am on 23rd cycle of Ibrance and ltrozole and just got great scan results today! I hope to be a lucky one and get lots of years. I find the fatigue to be random. I can feel great one day and exhausted the next. No rhyme nor reason. Keeping hydrated is super important! Can't say it enough. Almost all the symptoms I have been experiencing lately can be linked to lack of proper hydration. I was reminded by mo today.
Hugs and prayers everyone
Claudia
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Welcome, all our new Ibrance sisters! Some days you might find us bummed about our fatigue or the various side effects from the hormone therapies but I think you'll find we are pretty happy not to be on the toxic chemo regimens we've had in the past. Ibrance is sometimes like that proverbial box of chocolates....you never know what you're going to get! Every one of us has that time when we miss our past carefree days before MBC crashed through the door. We all grieve our loss of energy and achy body parts, more on some days than others. But here's my tiny piece of advice....don't let yourself awfulize and catastrophize too many days in a row. Whatever you're facing will pass and better times will come. We will be praying that for you.
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Claudia, great news on the scan results!
I saw this workshop online this AM and signed up for it. It's in October (the 19th), and you can listen in by phone or via the an online link. I have no idea whether it will be helpful or not. It's put on by "Cancer Care".
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Thank you Pat for your sage advice. I am so happy to have found this site. I feel so much better knowing I am not alone. You ladies are the best.
Sincerely Cathy
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Thank you for the info jjoiner.I will join also. Mo moved my scans to every 20 weeks, instead of every 12. Happy and terrified at same time. Asked if he was sure and he said yes, you are doing well. Yay!! Also tm's all the way down to 20! Such great news! The only bad news had nothing to do with cancer. He agrees my knee needs an Mri because it should be getting better not worse. Gave me name of his knee ortho to go see. Can't have everything! But sure can try!
Hugs and prayers everyone
Claudia
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Mimi...I have thin hair as is...I haven't seemed to notice any thinning yet but this is just my first round.
Cathy...It seems we are on the same schedule. I had my first Zometa infusion a couple days before I started the regimen of Ibrance. So, Aug. 3rd will be my second infusion.
Claudia...That is music to my ears! I am so happy for you. I hope to be one of the lucky ones. My onco told me there is a woman who volunteers at one of his offices and she's been going strong for 20 years! Can you imagine? I really have to work on my water intake. I have to force myself. I do have a cup of coffee in the morning and usually drink a ginger-ale or Gatorade during the day. But, I'm sure water is best.
Pat...Thanks for those words! I do my best, but sometimes need that x-tra push. I always tell myself there's someone much worse off than me.
Joy...Thank you for that info. I will be checking it out.
Off to eat a bit of dinner. I have no appetite whatsoever. Did you ladies go through this phase? It's not like the food doesn't taste good. I'm just not hungry. I eat a half of a banana when I take the Ibrance and then eat dinner an hour later.
Hope
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Nonahope, I have the opposite problem. I am hungry all the time. I have gained 10 lbs in the 14 months since I started. I am trying to be careful, and I do try to walk everyday, but I eat well. I am trying to change what I eat so I can get this weight back off...
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Nonahope - I go through days when I am starving, days when only carbs will do and days when I have no appetite at all. It's so random, I just go with the flow...just make sure you get some protein in you no matter what. It's doable.
Hugs and prayers
Claudia
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Hi ladies. Im on pill 12 of 2nd round and I have another mouth infection. I guess the month off and 1 14 day supply of antibiotics didnt work. Im so disappointed. I hope my onc will just lower me to 100 mg. Hope everyone is feeling good. Prayers for all of us
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melmcbee, Did you try eating natural yogurt each day? That worked so well for me. I've found as the months have passed that I can go a whole week without the yogurt and still not have the sores. I pray this passes for you. It's so distressing.
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Good morning...
I will try to get in the protein. It's just that nothing appeals to me. So far, I haven't had any issues with the mouth sores, but I literally rinse my mouth with salt water after eating anything...even if it's just a cracker. I remember when I was going through "real" chemo infusions when first diagnosed, my onco more or less guaranteed if I follow this procedure, I would have no problems. Could have been a fluke, but I never had any problem whatsoever. Hope this might help, Mel.
Hope
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Hello NonaHope. I don't have much of an appetite either. I often rely on protein bars and vitamins to get the necessary nutrients. I find fewer SE's from Ibrance when I take it with a high-fat, high-volume, high-protein meal. When my appetite doesn't prompt me for a big dinner, I eat something small and follow up with a Cliff Bar. That does the trick for me. Maybe it's all in my head, but I feel better after a quick protein bar fix.
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Laura...Thanks! I didn't even think of the protein bars. I will buy some today. I'm learning so much from this board. I take the Letrozole when I have lunch - even though it says you can take with/without food. Then, I take the Ibrance around dinner time...usually with a banana - and then eat a bit of dinner an hour or so later.
Also...curious as to what strength of Ibrance are you all taking? And, when and if you moved down to a lower dose. I'm on the starting dose at 125 mg. and wondering if you went to a lower dose, did it help with side effects? You gals are going to get sick of all my questions!!!
Hope
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Nona, I was having serious gastrointestinal side effects in my second month. I asked my MO if I could drop down to 75 mg. He said ok and I've been on 75 mg for the rest of my 16 months. I feel good and my scans have been good. I think most dose reductions are for low white count. As far as drinking more water, I use water flavoring drops like Stur or Sweetleaf. These two are made with Stevia, not any other artificial sweetener. I am fine drinking plain water but am likely to drink more with these flavorings maybe once a day. In the morning, I drink huge mugs of herbal tea. That's how I try to get in my water quota. Hope this helps.
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Nona - I went from 100mg to 75mg and it has been much better. I have been on 75mg for the last 18 cycles. Got scan results yesterday and all is good!
Scrambled eggs became my go to for protein. I was able to manage a couple when I needed protein.
Hugs and prayers
Claudia
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My struggle is to get any type of food in in the morning. Nothing is appealing! I know I need to eat to take Med's but haven't been able to eat yet and it's close to lunch time
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ME, I don't eat well in the morning either which is why I take my IBrance with dinner. It works for me and I have good results.
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hi everyone, just joining this thread, I Will start on ibrance / letrozole tonight. My cancer returned this year in my peritoneum, outside of colon, liver and bones. I also get zometa every r weeks. I just completed 12 weeks of taxol, which was a failure so hoping for better from the new regime. Anyway I will read back on this thread to learn from all your experiences.
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Blume- sorry you are joining us but welcome. Is your cancer lobular? There are a handful of us with belly mets. Taxol failed me after 11 rounds. Hopefully you will have good success on Ibrance. A word of advice is to avoid foods like corn, nuts, etc... With belly mets you don't want a blockage. Horrible experience.
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