Ibrance (Palbociclib)
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gumdoctor. Right on about the hair. I know what's coming so I've let my hair grow, it's down to the middle of my back. I have lots of people say I liked your hair better short. I wore mine short for 17 years after my second chemo and third. I wear it in a ponytail. How many 70 ish ladies get to swing a high, white ponytail? I lost at least a third from IL and was surprised when lots more started coming out about my second week of AA. I had not read about that. It was coming out so much I wondered if it would continue to baldness. This is my 3 week anniversary on AA. It reminds me of real chemo as it seems to cycle. I think last week was the bottom, now I'm on the up cycle. But how can it cycle since its an everyday pill? It's not like I have a nadir, labs dipping on a certain day, because I continue to take it every day.
I need to read Amarantha post. I get my results today. Praying it changed. What did hers change to? Does she still post?
Joyner this is one week anniversary on X, right? Nkb I don't have a good story on AA yet. Except, that I don't feel as bad as last Thursday. Maybe I'm through the worst of it?!?! Except for weight loss. I weighed again today, lost another three pounds. A pound a day? That is not sustainable. Being about 20 pounds overweight, I'm happy to lose the weight. It's a dieters dream come true to watch the scale go down but........
Holmes that is so scary. What symptoms made you know to go in?
I am opposite about my resources. Ha. I'm remodeling my kitchen. I had windfall of some unexpected money. Thought one second about saving it then called my carpenter. My kids are both on board. It might increase value of my house a little. But, I'm doing it for me, my way. It's going to be Vicki's Farmhouse Kitchen on a shoestring. I'll have my own TV show soon. That's a laugh. It's taken 3 months already and I will be certifiably crazy if two more weeks. 😵
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Holmes hospitals are scared for us but I’m grateful they’re there. I hope you feel better soon. When you get a chance please share the symptoms.
Grannax the swishing pony tail though. I don’t know about your new medicine. AA you take it daily without a break, like Ibrance? I agree with the remodeling. I’m waiting for money to refinish a blinds project. Then bathrooms bedroom and kitchen. But not in that order.
Joyner I hope your X treatment is doing its job. I know you were concerned with the amount of time you didn’t take anything. It must make you feel almost normal not to have these meds on board, searching for SE’s. Well soon you’ll be boating again.
Take care all
Tanya
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Thinking about you Holmes....hope you are better soon. Grannax and Joyner thanks for keeping us posted.0
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Holmes, I am sorry that you are in the hospital, but I am glad that your clots were found before they caused a serious problem. I have to admit that you are the first person I have known who had clots in the bottom. Maybe you will look back and laugh about it some day. For now, I just hope that they decide upon the appropriate blood thinner for you. I have no doubt that you want to go home soon.
Grannax, I didn't realize that your hair was so long. I did notice in your pictures it is a beautiful color. There have been many times that I have started to grow my hair long, but everytime it reaches a certain length I break down and cut it. I think I am too lazy to to dry it when it gets long. Has your MO said anything about your rapid weight loss and lack of appetite? Is she concerned about it or is it an expected side effect?
Joyner, How is Xeloda treating you? I hope you find it to be as easy as I found it to be. I also hope that it will be effective for a very long time.
Jen, You were right in your post last week. I did try tamoxifen after Ibrance/faslodex failed. I did not do at all well on it, and moved to Xeloda after three months. I began to feel much better after the first two cycles of Xeloda, and when I had my scans two weeks ago, I expected to see stellar results. My bones mets remained stable, but unfortunately, my liver tumors had doubled in size and increased in numbers during the three months on Xeloda. Go figure! I will be starting on taxol after I take a two week vacation in Florida. Xeloda seems to work really well for most people who post to the thread. It is a good treatment that just didn't work on my liver mets. I miss Ibrance and faslodex.
Hugs and prayers from, Lynne
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50's Girl- I am so sorry to hear that Xeloda did not work on your liver mets! I hope that the Taxol beats them down and you can return to something that is tolerable. I keep hoping a miracle is right around the corner. Sounds like a good plan to get warmed up in Florida first.
Grannax- I am glad that your days are a bit better-->hoping you are the good story! I love that you are Doing your kitchen so that you can enjoy it the way you want it.
The other thing about hair- I've known my hairdresser since long before cancer- she went to the wig store with me- she has seen a lot and is so supportive.
I am still going to convert my fireplace to gas- cosy chair, coffee, good book.
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Holmes, if it's an option, I highly suggest Eliqius. It's pill form, taken twice a day. I'm glad I did so I don't have to give myself daily shots.
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50sgirl, so very sorry to hear about your liver mets. I hope the next meds will work better for you. Wishing you a good trip to FL. Maybe mentioned this is the past but I grew up in NH, Peterborough. Now live in Idaho. Still have family in New England that I visit. Take care
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Lynn I am so very sorry that X failed you. I would be very unhappy if it happened to me. In fact I think X will be my third line TX.
My MO was very unhappy with the weight loss. I've lost ten pounds in a month but 7 of it was this week. One pound a day is not acceptable. She gave me a different med for nausea. She didn't talk about reducing the dose.
Thinking of all of us trying our very best to do what our money tells us. But sometimes it's really tough. This one is a brute. Grrr
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Holmes, I'm so sorry about those clots! It's always something, and being in the hospital is not fun. Good luck with getting that sorted out quickly and easily.
Grannax, I started X on Friday, so I'm on my 5th day. So far, all feels normal, but I'm not sure how long it takes to notice SE. I'm worried about your weight loss. Are you attributing it to the nausea? Hoping that the SE continue to diminish and that the weigh loss stops with the nausea! You need to be gorgeous next month!
Tanya, thanks for checking. So far, so good.... You're so cute to remember the boat! We're making plans for where we want to go and hoping to be back aboard in May. Grannax is doing her kitchen, and I'm ordering new carpet and pillows for the boat!! Damn the torpedoes.....:)
Oh, 50s Girl, I'm sick about the liver mets. You were a shining light on Xeloda, and we all so hoped for years on it for you. I don't know anything about Taxol but hope that it does the trick for you and is kind as well. I'm so glad you're headed to Florida. It must be brutal right now in NH. My kids in Burlington VT are sending stories of wind chill and snow above the dogs' heads. Get warm and replenished (and try not to think about BC), and we'll be right there with you when you tackle the Taxol.
xoxox
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Good Morning Girls
This am is my scheduled biopsy to see if the hormonal status of my C has changed. I should be a wreck. But I feel quite peaceful. I need to get on a treatment that works. I totally know that all the praying from the last few days has brought Jesus' peace into my heart. He'll be there at that biopsy with me. And then we can get on with it. Being in this stand still since Jan8 was so difficult. But I'm much better now and ready to fight.
All you ladies on this sight have helped me reach this point. Thank you for letting me believe in myself. My God's grace and mercy touch all of you today. Sue
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Snooky-
My prayers go up for you and your biopsy today. Peace that passes all understanding...
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50’s girl Lynne in 2003 I took taxol which I found out I was allergic to (anaphylaxis). I’m sure the dosing is different now. I think they gave us larger doses back then etc. then I completed the cycle with taxotere. Of course I had some red chemo first. I got almost 14 years from that treatment. I pray you get as many years if not more. Enjoy FL sunshine and relaxation.
Joyner remodeling the boat is fantastic. And then you just sail from port to port admiring your work. I know that’s your peaceful happy place so I’m looking forward to hearing about your May excursions and adventures.
PatMC I’m missing your posts. I hope all is well.
Grannax I pray your AA treatment is working hard and you get a break soon.
Holmes I hope you’re home by now!!! Jensgothis suggested some pills. I would’ve much rather Had that than that months supply of shots I took home after surgery. I hope it’s all resolved.
Snooky I’m glad you’re in a zen place for the biopsy and pray all goes well (results) and you rest easy.
Tanya
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50sgirl; I've had taxol twice. Back in 2004 and again in 2015. I found it tiring (so what's new) and as I recall about day 3 to day 5 after infusion I had a lot of arthritic type pain and for those days I took 2 tylenol 3's every 4 hours.....so for 2 or 3 days. It worked very well for me and the first time I got almost 14 years NED and have had no recurrence of the ovarian cancer. In 2004 I also had A/C (aka the red devil and another) and in 2015 I also had carboplatin but I do credit the taxol very much for those great results.
Take care and please have something on hand just in case.
Cathy
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I’m having coilicky sharp abdominal pain. I’m in radiation to my hips/pelvis and lumbar spine. I just started my second cycle of Ibrance. I’m also having pain in my right ribs, lower spine and hips again. It had gotten better. Is it possible that I’mhaving progression and the Ibrance/Letrozole isn’t working?
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Novagirl,
Anything is possible in this strange, surreal MBC world. But as we seem to learn slowly but surely on this journey, it is much more likely these new pains are NOT progression but your body working through all this new treatment you are getting.
I have learned, and am still learning, to watch and wait. Others here also share over and over, how jumping to conclusions immediately is so easy to do but they are very often wrong.
We can be kind and loving with ourselves by focusing on treatment helping us, even through the pain. And somehow, seemingly miraculously, things get better. And the immediate worry we had about new treatment failure, tends to go away and be replaced with relief and more time on a treatment that IS working.
Hoping you will be able to watch and wait and find some peace through the current fear and disbelief.
Gumdoctor
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Thank you Gumdoctor. That is good advice. Maybe these pains are the cancer dying.
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My kids are monitoring my food in take. I tex them everything I eat and when. I'm takin the anti nausea med. But, what is there to do about Afinitor also causing the food not to absorb as well? I think my dress will have to be altered, at this rate who knows what size I'll wear. So many things to think about.
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Ciaci - Thanks for the advice about Prolia. Will see what the Doctor says at my next appointment.
KatyK - I am curious to hear what the name of the new drug is that your Doctor mentioned, that she heard about at the San Antonio conference. Fully understand the monthly TM stress. My Doctor mentioned the PACE clinical trial as the next line of treatment after the Ibrance/Letrozole combo.
Wishing everyone the best -
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Happy to report some good news. I just started my 43rd cycle of I/L. Saw my MO today and labs and tumor markers all good. I take the 75mg due to fatigue at higher doses. Wishing you all the same success!
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FABULOUS news, time-for-a-cure! Congratulations!!
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nova girl check with your onc and rad crew. You’re supposed to stop ibrance while on radiation.
Tanya
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time for a cure....Congratulations! Such an inspiration to all of us. I've managed to be on 125 mgs. Just started month 10. Have scans scheduled for next Wednesday. Praying for stability!
Hope
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hi there! Anyone else experiencing some bloody noses (with blowing)? I’m not having full blown nose bleeds but I’m the morning when I blow my nose (gently) it is bloody. I am also aware that’s it winter and drier etc but just curious if Ibrance May be impacting this one at all or is it just me and my nose? Thanks
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LovefromPhilly, yes that happens to me, too. It seems it was worse during the first few months and has gotten a bit better. Once or twice a day I put some vaseline on a q-tip and coat the dry places in the nostrils. Not a big blob vaseline, just a little bit. It has seemed to help.
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LovefromPhilly;
I have the same nose issue. It's been going on for quite a while.
Cathy
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thank you friends!! 💕💕
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Hello,
I just wanted to introduce myself. I am new to this group, although I have been lurking for a while. I'm due to start IF next month when radiation is done. I'm glad to be able to get this drug, but wonder how common the se s are. Is life pretty normal on it?
Best regards,
Ellen
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Hi Nell19, Ibrance only give me a couple of se's. I do have the famous fatigue and also it gives me a slight bloody nose, just when I blow the nose. I have not had the F. My other therapy is letrozole and it is not very kind to me. It is keeping me alive though...You ask if life is pretty normal. For me, no. I've had to adjust to a new normal but it is doable. I hope it works for a long time! There are ladies here who have been on it for years and are keeping active.
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No bloody noses any more. When I first started on the I/L I had a few gushers but that stopped. Now my eyelids are taking a beating - red and dry and a cracked lip. I stay hydrated use lip balm but no luck. I’ve tried a couple things for eyelids but it seemed to make it worse. It gets better during my week off.
Hello Nell19. I’ve been on the 125 mg Ibrance and letrozole for eighteen months. I tolerate it pretty well. I continue to have good quality of life. The biggest change for me is that I was very fit and active with mountain biking, skate skiing, hiking, backpacking, gym, yoga, etc. and while I still engage in all of these activities ( just got back from a morning yoga class and skate ski) it’s just not the same. I can’t do the same intensity and need to rest while I’m doing these activities. Likely due to meds and lung mets. But this diagnosis did stop my desire to keep trying to do these things. I can get some rashes and I gained weight. But life is still good. I think many women tolerate these meds pretty well and I hope you do too
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timeforacure, that’s great news! Congrats!
Nell19-welcome, I’m new here too. This thread is great for support and advice.
Tanya- no one told me not to take Ibrance while in radiation. Today was my Last day of radiation and I took Ibrance the entire time. Do you know why Ibrance isn’t taken with radiation
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