Ibrance (Palbociclib)
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kaption, I also started one year ago this month. My TMs rose, and I had a slow but growing bone met for the first eight months. We almost switched twice but decided to wait. Glad I did. Since the 8th month my markets have dropped continually and the met (with the help of cyber knife) is healing. Next month is my scan and MRI. I may be asking for a lot, but I'm hoping for NED again.
Faith, My MO has had some conversations with Dr Finn at UCLA. Dr Finn was part of the original Ibrance study. My MO told me he said in any case possible it is best to stay at the full dose of 125. That is not to say there isn't success at the other doses...there is. But, unless it's an absolute necessity they are still recommending the highest dose. Perhaps this is why your ONC said you should stay on 125 for now.
Okay, bucket list trip. My family is going on an African Safari this summer. Talk about a loong flight. Has anyone here had a yellow fever vaccination while on Ibrance?
Stefanie
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Thanks all for your replies on the swollen ankles. They are a little better today. I used compression stockings when flying in the past but didn't think it was necessary this time. The car trip was about 6 hours each day and we stopped several times but I guess everything is just harder now and my cardiomyopathy also makes things worse.
For those of you just starting this combo, I didn't see any SE effects the first couple of days either but I've read that it takes about 8 days for the full concentration to get into your blood and then I started having things like mouth sores, fatigue, sore throat, etc. Some SE's have gotten better, some worse like fatigue and I also have a lot of shortness of breath. I've been told that's the letrozole, could also be my heart problem. It's all a big puzzle to me and I just get tired thinking about it all. I have made an appt. with my previous MO and I think she is more of a breast cancer specialist than the one I'm seeing now so she may have some answers. It's just that I don't really want to change because this one is only 10 min. from home and everyone I know who goes to him thinks he "walks on water" including the hospital nurses and I respect their opinion. I just get this feeling I'm not sick enough yet for him to be very interested in my case. He's told me my cancer is slow growing and I'll live a long time with lots of treatment options. I guess I just want this to be done like the first time, surgery, chemo, 5 yrs of tamoxifen then done. No such luck this time. I know, "quit whinning". It could be lots worse and it is for so many of you and I'm really sorry about that and I'm praying for all of us. We'll just keep the "faith"
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stefajoy, just saw your post, can't believe you're brave enough to brave an African Safari. You, go girl!!!
Thanks for the info on the 125 mg dose, it's good to hear from someone who has been involved with the study. I'm sure that's why my doc wants me to stay there, I just don't understand why he even suggested other options especially since my blood counts and liver enzymes have been OK.
Fait
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Hi ladies!!
Been a minute since I have posted. Work has been crazy and my memory and focus is getting worse. Headaches have been bad. Trying not to be a hypochondriac, but I immediately think brain mets. Could be my sinuses...Stefajoy... So good to hear from you... I am on my 11th month on Ibrance with most of my months on 100mg. I too am looking forward to two vacations and I am determined to go!! Just caught up on posts, haven't seen Pearlady and Deanna... Are they ok?
Hummingbird... Great to hear from you!! Always thinking of you and mom!!
Monika
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monika, Deanna is very active. I see her posts a lot. I havent seen Pearlady lately, but I think she is doing well. Sorry about your headaches. I hope it's nothing.
Nice to see you.
Stefanie
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I also just completed a year of Ibrance and hanging tough. Tumor markers started at 203 and now 44. Last 3 scans stable, next one coming in a few weeks. Been on 100mg since the second cycle. Fatigue most bothersome side effect. Glad to see so many of us continuing on
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So happy to see so many of you still doing well on Ibrance. It was a fairly east treatment Wish it would have lasted longer for me but doing well on Xeloda. The HFS is reallyrough but it's doing its job
Nice to see you all
Babs
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Thanks ladies for the welcome back! Shetland and lalady, I will start Ibrance again mid-June on the 100 mg. If the enzymes rise again she says we'll try 75. I am pretty anxious about scans in June as TM's are up and I've been feeling new twinges, but trying to just be patient.
Faith, feel free to vent away, we all do it when needed. All of our problems are individual and personal. Something huge to me may be small to others. If you are worried, you are worried, and it wears on us. We all completely understand! I've heard it is best to take the Ibrance pretty close to the same time-ish every day. I think they just do that in case you get TOO close to the last dose they worry about a small overdose or something.
Z and lalady, It is inspiring to me to read about you downsizing and liking it. My DH and I have been going around and around about this but I feel strongly we should just take the plunge. I really really want to simplify and make that time for other pursuits. Our problem is housing in our area is astronomical and hard to compete for. But I say, if not now then when?
Rosevalley, I think a second Onc in the wings is a splendid idea. I've been contemplating that myself, just to hear any new ideas/opinions. Although I currently do feel fairly comfortable and trusting with my mine.
Kaption, One year and counting is great. The more mileage we get out of each treatment the better right? I hope the scans go well and you can keep on tooling along! I agree it is soooooo worth it to get out on the road and see a change of scenery, (although ours is pretty nice!)
Rosevalley, My TM's were in the 700's when I was first DX'd. After two rounds of Ibrance they were back down to 200's. I hope the same and better for you.
Best of luck and wishes theziz! And thanks Mike!
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Thanks, artist. I may have mentioned that I know your area- and it's beautiful! My daughter-in-law's family has a lovely place in Truckee. Glad you all have had the snow and rain you needed!
Thanks for all the encouragement to everyone. Yes, Faith, vent away
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Hi Stefajoy! I am going to Spain/Portugal on a cruise in July. Planned my ibrance cycle around it.:) I loved my Kenya/South Africa photo safari a number of years ago - saw everything but Rhino. I flew LAX: LONDON: NAIROBI: spent a week in Kenya, then JOHANNESBURG, Blue train to CAPETOWN. Rooting for you. Where are you going that needs a yellow fever vaccine? Artist - you may love downsizing. I did it early, along with a new will/trust, etc. Plus cleaned out a lot for charities. Found a lot of joy in giving. Kaption - I am rooting for you and Rosevalley too. Dinner tonight with a glass of rose and no Ibrance!
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Babs and Stefajoy - nice to see your fonts along with the others here in Ibranceland.
I'm currently in my 15th month on Ibrance and Letrozole. Had a clean scan last week although tumor markers have been inching up over the past few months. Have been having more back pain too so I was sure that something would show up on the scan but so far nothing.
My very best wishes to you all,
Kay
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Thanks everyone for allowing me to vent. I know most of you understand the need to just tell someone who understands what we are going through. I know all of us have different journeys but unless you've had cancer, I think it's hard to really understand everything involved so while I can tell friends and family some of it, I hate to just vent all the time with them. I'm wondering if some of this anxiety and depression I'm feeling are more lovely SE's?
On another note, I did talk to the nurse today about switching the time of meds with different meals. She did say it's best to keep it fairly regular but she did say something interesting. She said that when they give meds in the hospital, they are allowed to give them 2 hrs before or 2 hrs after the regular time, meaning there is a 4 hour time frame window. I told her my problem was on the days when I had to leave the house early because of all the water we are supposed to drink with these meds. "What goes in must come out" and my bladder isn't as young as it used to be. I've been taking both pills at the same time but she said that we could take the Letrozole at any time of day just be sure to take it everyday. That might reduce some of my water intake. I think it's the letrozole that causes all the dry throat problems I'm having as well as the shortness of breath. I still have lots to learn and frankly it's a subject I'd rather not have to learn.
I envy those of you who have downsized. We've wanted to do that for a long time but have a hard time deciding where to move to since we love our location in this town and family is close by. We'd have to move fairly far away to find something we'd like and that wouldn't cost more than we would get for our house. We should have done it 10 yrs ago when we had lots more energy, I think we left it too long.
Hope the sun shines on all of us this weekend,
Faith0 -
Monika, thanks!! Sorry to hear you are having bad headaches. After the first 3 months on Ibrance, I then had a daily headache - at first just annoying, but then they got worse. Advil worked for me. My MO did send me for a scan though - no brain mets. It was the Ibrance. Once I stopped taking it, the headaches stopped. So headaches can definitely be a se
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Hello All,
I just completed my 5th cycle of Ibrance and had my first set of scans since being on this protocol just this past Tuesday. I get Bone Scans and CT Scans (abdomen, chest, pelvis). The results of the Bone Scan and Abdomen/pelvis were posted on my Patient Gateway. Still waiting for the chest CT results. I promised DH I would not look at the results before my appointment with my MO (which is on Wednesday) because last time I got very upset when I saw interval progression in my spine which turned out not to be as bad as I interpreted it. However it really put me and DH into a tailspin. This time I'm better prepared and grounded so in a way that bad experience helped me learn to deal with the unpleasant reality of this roller coaster ride. So, of course, I could not resist looking at the results. Good news first - Bone Scan results are stable! YAY! Naturally I read that one first and felt great relief and nonchalantly moved on to the Abdomen/Pelvis CT results. First sentence "HEPATOBILIARY: 0.5 cm segment 4/7 hypodensity suspicious for metastatic disease." My reaction was rich in expletives... well, mostly just one expletive starting with "f" repeated many many times. I'm trying to stay calm and focus on the word "suspicious" and just wait to talk to my MO on Wednesday. She's great and has said to me many times to call her any time with any concerns but I can wait for Wednesday.
Here's the thing - I recalled that early on my abdomen/pelvis ct scans noted something on my liver but was kind of dismissed as nothing to be concerned about (likely steotosis). Here are the reports re my liver from my first three sets of scans from 2014-2015.
6/23/14 - HEPATOBILIARY: An ill-defined hypodensity is seen adjacent to the falciform ligament, likely focal fat/vascular anomaly. No focal hepatic lesions.
10/6/14 - HEPATOBILIARY: An ill-defined hypodensity is again seen adjacent to the falciform ligament, likely focal fat/vascular anomaly. No new focal hepatic lesions.
2/20/15 - HEPATOBILIARY: Small geographic hypodensity adjacent to the falciform ligament, likely focal steatosis.
The next two scans (7/1/15 and 12/17/15) said this:
HEPATOBILIARY: No focal hepatic lesions.
And now the 5/17/16 scan says:
HEPATOBILIARY: 0.5 cm segment 4/7 hypodensity suspicious for metastatic disease. Subcentimeter liver lesion suspicious for metastatic disease.
So what happened to the hypodensity seen in the first 3 scans - no mention of them in July or December. Did they disappear or did the radiologist not deem them worthy of mention? And then the May report not only mentions it but it is described in far more unsettling language "suspicious of metastatic disease". We are at the mercy of the interpretations of the radiologists. AARGH!!!
Fortunately I have great confidence in my MO and I know when I meet with her she will have reviewed these reports and images from the scans in detail with a radiologist and be able to answer all of these questions. Not that I will like the answers but at least I know she will have an analysis.
However I can't help but wonder how we can trust the impressions of the radiologists. I feel like we could have 10 radiologists look at the same set of scans and come up with 10 different impressions. What if this last report is correct and the first 5 were incorrect. It is hard enough having to go through the scanxiety every 4 months but the stress is exacerbated by the fact that our treatment relies on such subjective criteria. Someone on this board once said that reading these scans is more of an art than a science. So so true. I'm thinking that I'll only have peace of mind on this issue if I have a biopsy on the liver.
Other than this liver question - I have been doing very well on this protocol. Very few side affects and they are manageable thus far.
At any rate - I will report back after my appt with MO on Wednesday. I am really really hoping I just have a fatty liver!
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Animalcrackers-so sorry for the scary results. I hope you get good, clear answers from your MO. I'd be tempted to call on Monday- since she said call any time.
I seem to have my PET scans read by two people. I like the thoroughness and organization of one guy over the other. The one I prefer comments on every spot (MANY bone mets), the other guy (who read my March scan) uses "representative" spots and compares to previous scans. It is certainly an art and relies on someone who communicates well.
Have your MO show you the actual scans and what he is seeing. That helps me understand.
Best wishes, prayers, and deep breaths
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Well it's day four and I said no side effects yesterday. Today I have had diarrhea all day. Ugh... constipation will so not be an issue. Funny on Afinitor I also had diarrhea among other things. Eating bananas and trying to stay hydrated. With the exception of staying close to a bathroom I feel ok. Does the diarrhea subside?
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Rose, I am sure everyone is different but I have been on Ibrance/letroze for a year, and I still get diarrhea two or three times a week (usually first thing in the morning). It's one of my only SEs, so Ive just learned to deal with it. Otherwise I feel great and the meds seem to be working, so... Worth it!
Stefanie
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AnimalCrackers -
I appreciate so much that you shared your detailed results and the history. I have become an avid student of the imaging technology they use to diagnose cancer.
On a personal level I have had more scans than normal in the past four months and spots are coming and going and coming back on my scans to the point where the results are not credible. I finally went to the hospital and got the images so I could look at these f@#$king "lesions" they read so much meaning into. I am an engineer. I want to see the data. I haven't gotten around to opening the files, but I don't expect to be impressed.
Suppose it is cancer, then the question is whether it is progression and you need to change treatment. Was the spot really not there in those previous images or did a new technician show up and change a dial on the old CT scanner. From my research into the accuracy of CT scans you cannot say one way or another at the 5mm level.
I am glad you have an intelligent oncologist to rely on. I would not be afraid to take a wait and see approach here. The stable bone mets are huge. Remember that survival out comes for people with stable mets are the same as people who are NED. As I understand it some cancer forms a kind of fibrous tissue rather than disappearing altogether. Even though that tissue is not cancer any more, the CT can't tell the difference.
Congratulations on the stable bone mets, hoping (expecting?) the the thing in your liver is nothing to worry about.
If the thing is really suspected metastasis, AND they propose changing you treatment, I hope you are offered biopsy. The scans are not conclusive.
>Z<
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Zarovka, thank you for sharing your knowledge and research with us. I for one find it very helpful.
Animal crackers, I am dealing with a similar situation. It is difficult. I hope you receive positive feedback when you speak with your mo
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animal crackers, I'm so sorry for your scary results. Waiting to talk to the MO is really hard, I think I would take Kaption's advice and call on Monday but then again bad news can always wait. Tough decision. Prayers and deep breaths! I will storm the heavens for you and all of us.
Rose, I found that lots of the side effects I had in the first two rounds got much better except for the fatigue and anxiety and shortness of breath. I mostly tend toward constipation but on this my 5th round just started, I had diarrhea the first day. It's crazy never quite knowing what to expect.
I have to say a good night's sleep and a day of sunshine, both of which I just had can do wonders for your mood.
Sleep well everyone,
Faith
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on the intestinal issues- after a year I can report more constipation than diarrhea- but I never know. I drink a cold pressed vegetable juice (with a bit of fruit in it) I get from Whole Foods. If I'm out of that I eat a few raisins. Those issues got better as time went by.
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Hi ladies;
I am very happy for all of you that are well with clean scans and some are NED. I wish i could be one of you.
Met with the MO yestarday here in Costa Rica and he said i'm progressing in my lungs. He was talking about chemeotherapy.
I'm flying to to see my MO in florida on June 12. I dont know how i'll be able to wait this long. I woke up with a headache and i'm running around the house thinking that i've brain mets.
Babs how is xeloda? How are doing? what are the SE?
The MO was talking about Immunitherapy, does anyone here about it?
Cheers
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So sorry, Theziz. Hugs, prayers and hope for good ideas from your FL MO. Thinking of you
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My initial diarrhea on Ibrance has improved significantly over the past eight months I've been on it. My MO pointed out that part of the problem may be to much dairy because I was relying on yogurt and Instant Breakfast shakes when I didn't really feel like eating. Cuttting back on those helped but I think it has just improved with time. I do still have problems with it occasionally but I also have more problems with constipation now. Stool softeners at night and staying hydrated really helps.
I have been having some problems with ankle and calf swelling over the past 3 - 4 months. Seems that I tend to get it more with over exertion or too long on my feet. I went to Brussels and Amsterdam for 2 1/2 weeks about a month ago. My MO suggested compression socks/stocking for the flight as well as when I expected long periods of time walking or standing. It really helped. He also suggested an aspirin the day before and the day of my flights as well as getting up and moving around as much as possible on the plane. Although I already bruise very easily, I went with the aspirin suggestion. Getting up and moving around wasn't easy but I did stretching and isometrics with my lower extremities frequently. Had no problems fortunately. If you have the opportunity to see Holland during tulip season, it is well worth the effort. It had been a dream of mine since childhood and it was a fantastic trip. In spite of everything else, I am enjoying my bucket list as long as possible. Have a great day everyone.
Just as an aside, Sunday mornings are always special to me because of the LOL Cats on the Democratic Underground website. It will definitely brighten your day. Here is a link to today's adventure. http://www.democraticunderground.com/1018867755 Also just another aside - If you haven't heard of or been following Miss Norma's travels, check out her Facebook page. This is one cool lady and family making the best of a tough situation. https://www.facebook.com/DrivingMissNorma/?fref=ts
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Ziz. Xeloda is working for me. Yes !!! The SEs are gradual and cumulative. If that's your next treatment make sure to start greasing up your hands and feet ASAP. The HFS isn't easy but since the X is working I can deal
Babs
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Thank you Babs!
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Hello all.
I don't remember if I posted on this thread at all, it is too long now to even really go back and search if I did or not. Anyway, I have been on Ibrance now for 3 full cycles, I am on my 4th right now. So far so good. Lab work has been great. Slightly low in some areas but not a big deal at all, so I have stayed on 125. I am also on letrozole and that hasn't been a problem either. I had my oophorectomy in March (was on zoladex before that) and since then, my hot flashes increased, but it isn't too bad.
I just recently had my 1st PET scan since I started meds and things are looking great. The tumors in my breast and lungs have resolved and I don't know what is going on with my lymph nodes. They have shrunk but I am not sure if there is still cancer in them or not, but they have shrunk. I was so excited with the resolution with the breast and lung I didn't ask more details with the lymph nodes. If anyone is a master PET scan report interpreter, I'd be more than happy to share my scan for some help understanding.
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Phrogger78 - That's wonderful news! What a great start to treatment! Wishing you continued success on this protocol!!
BTW - If you search on your member name you can see where and what you have posted.
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Great news Phrogger78!
Saw my MO today. As I've reported TMs keep rising, with a significant jump last month. She is concerned and ordered PET ASAP. So, Wednesday afternoon. (Two weeks earlier than normal.
Interestingly, she interpreted the last (March) scan the way I did. The reader concluded "overall stable" but made comments about some spots being reduced and some showing more uptake. MO said, "That's not stable." That's exactly how I read it at the time!
After today's TM and Wednesday's PET we'll decide if it's time to move to Faslodex. Or a clinical study-she has mentioned that the last 3 times I've seen her. Hmmm...
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Phrogger - Glad to hear your good news.
Kaption - Sorry you are still in waiting mode. Did your MO say if you go to Faslodex if you would stay on Ibrance or not? Hope your PET is stable this time!
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