Ibrance (Palbociclib)
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Hi Claire - So wish I was the superwoman I used to be and could drop down there and have coffee. I will seriously think about it, but I am careful not to take on too much these days. I need more sleep, can't miss exercise and I gotta eat well. I am contemplating tip toeing back into work, but i am so afraid of taking on responsibilities and then having to back out again. leaving my last job when i was first diagnosed was so overwhelming. Don't know how you do it.
>Z<
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Zarovka thanks so much for the great info about the healing bones. Much apprdciated
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Went for another pet scan today...it has been 3 months and will know results on Tues when I see Onc. A little nervous....my hips have been really bothering me in the last couple of weeks, so, not sure what that is about. Hair 3/4 gone, but that's ok. Saying prayers for all and me too.0
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Airlinegal - good luck with scans. you are in my prayers. I can't recall your diagnosis and treatment history anymore. Have you considered adding it to your signature line? You edit your profile and make it public.
>Z<
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He, Lalalady, it makes me happy to think of you dancing for two hours to Ringo. Zarovka, thank you for the info on CTC. Zills, so glad to hear you have good news on your scan. Stefanie, it sounds tiring to research the Keytruda trial. If I need to join you, we can compare notes. Hello to Everyone! I have been off for a while.
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As I mentioned on the liver mets thread, I had the first of three scans that might help us figure out why TMs keep rising steadily, albeit not dramatically. Having only used PET/CT to monitor, I had my first CT with contrast recently. Wow! The effect of the iodine solution was intense. I felt like I was holding fire in my hands, and that there was another fire in the nether regions. Dizzy, faint, heart pounding. I knew I had to remain still, and hoped the nurse was watching in case I fainted. She told me after to ask for it to be pushed more slowly next time. The report showed nothing dramatic, thank goodness no new weird ILC mets sites, but the "lesion" in the liver in the area of mild PET uptake went from 2 cm in June to 2.5 cm now. I do not know if that is significant. There were a few other things mentioned that may or may not need follow-up. I haven't talked to my onc yet. I also had a bone scan; no report yet, but my feeling is that it will show nothing of concern. Except weirdly, the CT report mentions a small sclerotic lesion on the pubic bone, stable since 2014. What?! This is the first I ever heard of it! I think this radiologist was very thorough. Can that be an old injury? Breast MRI still to come. Starting Ibrance cycle #20 soon. I think the fatigue may be cumulative. But thankfully no other persistent side effects.
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Shetland - I am sorry you had to go through the scans. I find the contrast hard as well. Sounds like a good scan overall, and at worst ambiguous. Sclerotic bone lesions are often healing. 2cm to 2.5cm is small. Barely above what the instrument can detect. I am hoping that your onc sees this all as good news. Let us know.
>Z<
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H Everyone. Sorry to go off topic but I was supposed to start second cycle of Palbociclib & Letrozole today however my neutrophils are too low at .09. I am normally healthy (except of course for BC bone mets) and I am vegetarian. As I am on a trial has anyone got any ideas of how to raise neutrophils naturally. Hopeful thanks xx
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Hi Shetland - I'm also sorry you had to go through anxiety scans. The liver lesion change in size sounds ok, let's see what onc says re: MRI. Your pubic bone being sclerotic could be healed from Ibrance. Both my sternum and L1-3 on my last PET indicated sclerotic and no sign of activity. Onc says Ibrance +fas is doing its job. I start round #12 on Monday. I'm heading for work in ABQ tomorrow, speaking on a film panel on Saturday and flying home right afterwards. Used my American miles to upgrade to first class - after all what am I saving them for? Z - if you want to call me while I'm in NM I will pm you my cell. Very proud to support NM film jobs and our office there. Chico - Z may have some ideas for raising neutrophils, but generally a break from meds is best. Your onc may also consider moving to ibrance#100 - that is what I am taking. Wishing a kind day to all in the election aftermath.
(() Claire
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Shetland, I'm also so sorry you are havingthese scan anxieties. It is so hard not to be nervous. I have some of that right now. Saw my onc yesterday and he showed me my scan results again because last month they saw a lung infection and I wanted assurance that it wasn't the tumor in my lung growing. He said everything looks stable. Then today, I got the blood tests results online and it shows my ca 27-29 is up to 40.7,9 Pts higher than last month. My markers have never been above the base of 38, mostly in the low 30's even at first, so I'm nervous .
I also had a SED rate blood test which shows inflammatory problems such as RA because of the pains in the muscles and joints. That test was also elevated so I'm wondering if that's the reason for the elevated tumor markers. I'm waiting to see if the onc calls to give me any news or just assume no news is ok news.
Does anyone have any ideas about this development or is it just wait and see? I started rd #11 today. Sure hope this stuff is working.
Praying for all of us in this uncertain time of scan results and tests.
Faith (in the future)
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Getting scans is ok, especially now that I have a port and don't get painful IV pokes. But the scanxiety is hard when TMs are rising, because any news is bad news if you were NEAD before. And I thought there were never any bone mets, so I'm very curious to find out what they think about that spot, as well as the liver. Trying to be patient and not harass my onc too much until she calls or I have my appointment with her. I'm giving her time to speak with the radiologist, and if I need to I will ask to speak with the radiologist as well.
Chico, what dose are you on? Will they take you off the trial if you need extra time off to get the neutrophils back up?
Faith, that doesn't sound like much of a rise in CA 27.29, but I know it worries you nonetheless. It's just a little above normal range, right? The number might go back down. Is there a trend? Do they check them monthly?
Lalalady, yay for flying first class. Carpe diem. That reminds me of a movie I watched recently, Last Holiday. It is about living for today and doing what makes you happy, and the ripple effect of that. Queen Latifah plays a lady who is given a few months to live, so she starts doing the things she has always wanted to do.
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Hello Ladies, I have just been switched from Ibrance/Faslodex to xeloda for profession. This combo rid me of all my tiny lung mets, but did not even touch my right iliac bone met. This combo brought my TM's down from 51 to 41 by the end of June. Then they started slowly rising from 41 to 45 to 51 and then to 60. I knew deep down this meant progression but had to wait until scan time. My scan on Monday showed the bone met increased in SUV activity from 2.4 to 5.4 and a new liver tumor the size of a nickel. So in 3 months time this liver tumor showed up and grew to this size. Very scary and I am very devastated. The one place I did not want this cancer going was my liver. I contracted Hepatitis B back in 2013 from my latissimus flap procedure. I was dying of liver failure and in the hospital for 9 days. My oncologist told my parents I needed a new liver but Vanderbilt would not approve it because I was only 3 years cancer free at the time, and you have to be 5 year cancer free. By the grace of God and a medication named Baraclude, I survived this horrible disease. And a year later was diagnosed Stage 4! My liver got back to being healthy and now I have this tumor in it. I am also always scared that chemo will reactivate the hep B which is highly possible.
I wish all of you a long ride on this drug!! Although I don't post often, I have been reading this thread nightly. And when I did post....you all were very sweet and supportive.
On a hopeful note: My oncologist told me about 2 new CDK4/6 drugs that are close to being FDA approved. She thinks in the next year we will have them available. I think she said Lilly is one of the pham companies and can't remember the other. I was still in shock of the news, so I wasn't focused.
Hugs to all!
Robin
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Robin, I'm so sorry to hear of your progression, especially the liver met and the bone met. Since I also have lung mets, I've been following your progress. Your tumor marker numbers especially since they are kinda low and now I also have a slow rise to to 40.7. It's just over the low range mark but they have always been in the 30's so now I'm worried.
Here's hoping zeloda kicks those mets to NED. Sending prayers your way.
Hugs, Faith (in the future)
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Thank you Faith! My tumor markers stayed 50 for 2 years. And then within 4 months they slowly rose 20pts. It was a slow rise at first, then last month it jumped 10 points. And I just knew this was not the norm for me. This rise may not mean anything in your case. What did your last scan show? And when is your next scan?
Hugs,
Robin
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Robin: I don't have mets to liver, but I had Hep B 30 years ago (had been well for 30+ years until cancer treatment). Hep B was reactivated after 3 out of 6 CT chemo when Xeloda was also added to chemo treatment. My GI doctor then prescribed Baraclude (Entecavir) and it helped the liver function back to normal and held the Hep B down for almost 6 years now. So, if you worry about the change to oral Xeloda may affect your AST and ALT, just go back to Baraclude. My doctor still keeps me on Baraclude and my liver functions have always been in normal range now.
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Cling, Thank you for your response. When your hep b was reactivated, were you hospitalized? I am so scared because I was so close to death. My doctor told me that my hep b was some of the worst because it also had the E-antigen. He said more than 50% of people with my type die...and I almost did! My oncologist doesn't seem to act like it is a big deal. She told me we would monitor my hep b and do a panel every 3 months. She always forgets and I have to remind her. I think I will make an appointment with my GI doctor about this issue. He seems to be more on top of things. I do like my oncologist a lot because she has a caring nature, but she can't remember anything. I try to be my own advocate but I shouldn't have to remind my oncologist of everything!! It's exhausting.
Thank you for your input.
Robin
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Robin, thanks for your reply. My last scan was a month ago and it showed a lung infection but the onc said stable tumor mets. At that time the tumor markers were only 31. My next scan probably won't be till after the first of the year unless next months blood work shows another rise in tumor markers. I hope this is nothing to worry about but you know the anxiety is always just below the surface.
Good luck with the zeloda and prayers for no problem with the Hep B.
Hugs, Faith
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Faith, I hope your rise in markers turns out to be nothing. I hate worry and anxiety! One minute I am doing a happy dance then a bomb drops!!
Thanks for the well wishes.
Robin
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Chico - There are meds for raising neutrophils with other chemos but they generally are not used with ibrance. It's one of those things you wait out. Good news is that you can be on low doses with long breaks and get awesome results on this drug. I am on the highest dose with short breaks, alas, because my neutrophil count is fine. s quick
Robin - Rats. I hope this transition to Xeloda goes smoothly and you have a long run on it. The good thing about fast growing cancer is that it responds well to chemo. I doubt you will have that liver met in the next scan.
>Z<
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Z - thanks for the vote of confidence. I am wondering if the liver tumor has flipped receptors. My lung mets were so slow growing when I had them. I guess I will request a biopsy.
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Oh, Robin, I'm so sorry. This damn disease is so unpredictable! I hope and pray Xeloda will knock that liver met and bone met to smithereens. You will be in my prayers! Deanna
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Robin - I too had been following you because I have lung mets in my left pleura, and get it drained monthly. I am so sorry you progressed on ibrance, but hoping Madame X does the job on your liver met! X can be very effective in the liver, but watch out for hand and foot syndrome. My "twin" nature girl who started out on ibrance with me, is now on her 4th round of xeloda. How long were you on ibrance -were you on #125 or 100? Glad you are focusing on Hep B with panels every 3 mos. Please drop in here and keep up posted. You are loved here. I'm originally from VA and see you are in TN. Rooting for you! Now catching my flight from LAX.:)
(()) Claire
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Hi All-
I am in need of some advice. I believe that I have seen previous posts on here regarding xgeva and dental work. I need to have a tooth extracted and my MO said no problem, but my DIL works in a dental surgery clinic and has told me that they have patients who are on xgeva who have had dental work and that some of them now have serious issues with rotting bone in the mouth, open holes, etc. I'm really worried about this....not sure if this tooth can be saved with a root canal but I'm going to check into it.
Any comments about your experiences will be so much appreciated.
Have a great day yall!!
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mason - i would try the bone mets and xgeva threads. also there are dentists that specialize on cancer patients. you need to see one. this is an issue.
>Z<
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masonsmawmaw, your DIL is right. This is not a matter for a dentist who may not have any experience with patients who are on Xgeva. At the very least, you need an oral surgeon who hopefully has some experience with bone building drugs. If you're anywhere near a university teaching hospital with a dental school, someone there might be an even better choice. When we're on Xgeva, any dental work that affects the bone greatly increases our risk for ONJ, the rotting (as you called it) or dying bone condition. Absolutely nothing to mess with or risk!
Claire, have a safe flight and fun trip!
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Mason, I'm on Xgeva, too, and was told not to have dental work other than a very gentle cleaning. I suppose in case of major dental work, you would need as dbl suggested, someone experienced with bone building drugs. It was smart of you to check it out and good luck!
I must admit that I still don't understand why bone-strengthening drugs like Xgeva and Zometa can cause Osteonecrosis of the jaw (ONJ). It seems counter-intuitive.
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I was off Xgeva for 6 months then had my tooth extracted by an oral surgeon. I scheduled it for the week I started back on Ibrance. It has healed well and I'm to start back on Xgeva next year.
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Well.....I went to a dentist today and I'm still confused! Bottom line is he said my tooth cannot be saved with a root canal and must come out asap as I also have infection. He actually seemed somewhat knowledgeable about bisphosphonate drugs and told me that within the past 10 years, the initial concerns about dental work while on these drugs had not panned out and that it really wasn't as dangerous as initially thought. And to repeat my earlier comment, my MO, who is highly respected at Duke Cancer Institute, also told me that I didn't need to be concerned. That being said, he didn't want to extract the tooth....he said it was due to the fact that the root is near a sinus cavity and he didn't feel comfortable doing the extraction. Soooo.....my dear sweet DIL has been able to get me an appointment in the Oral and Maxillofacial Center that she works in on Monday...I guess I will have the extraction at that time. I'm really nervous about it but it seems I don't have a choice at this point. The dentist prescribed an antibiotic today but I really don't want to mess around with this infection and have it get out of control.
Prayers most definitely appreciated.
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I was nervous too but I had no issues. Need to get that infection removed. My onc had me gargle with mouthwash three times a day before sx and you get an antibiotic rinse plus pills. Load up on the mashed potatoesand Mac n cheese.
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Mason - It sounds like it has to come out. I think in general that extraction is better than a root canal. Dental work is something to be careful with, but you have done so by working with these experienced doctors.
>Z<
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