Ibrance (Palbociclib)
Comments
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Kaption - I'm sure it must be harder to decide when things are not clear cut. The clinical trial sounds like an interesting opportunity. Sending wishes that you'll get the same kind of run that Stef did from Faslodex! Thanks for all the great info you have contributed on this thread!
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Hi everyone…
I just wanted to give you all an update on my situation, as much as for feedback from those who have experienced similar things, as to inform how quickly things can spiral with the side effects of Ibrance. I've been on Ibrance (125)/Aromasin since Nov. 2015. I was doing very well with minimal side effects until the last couple of months. Aside from some minor things (mouth sores, etc.), I began to develop neuropathy in my feet. I mentioned this to my onc. but she sort of shrugged it off. My scans and blood work looked good, so she was happy. Soon I could barely walk. This last Friday I started falling, accompanied by tingling in legs and arms. Of course I was terrified that the cancer was back in my spine (this is exactly how I was diagnosed 6 and a half years ago), so off to the ER I went. Thankfully the MRI was stable, but I'm still having trouble walking and can only hope that the feeling comes back in my feet and legs. The onc. has taken me off both Ibrance and Aromasin for at least a week to see if that will help. Then I resume Ibrance at a lower dose. Not sure about Aromasin, as that has contributed severe joint problems that don't help the walking situation either. Has anyone had a bad case like this??? I feel so lost and discouraged right now, and also scared to be off treatment! Also I've developed problems swallowing food. Has anyone experienced this? Clearly I've been on too high a dose for too long, and shouldn't have toughed it out when things started to go south. Ugh!
Thank you for any feedback, and best wishes to all…
Rose.
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Rose -I'm so sorry to hear the difficulties you're experiencing on this treatment. I hope the dose reduction brings you some relief and that you can get back onto yiur treatmrnt soon.
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Rose - Thank you so much for sharing your experience.
I had neuropathy in my hands on day 20 and 21 of the fourth cycle. The last week of the fourth cycle was hard all around. Of course I toughed it out, but the peripheral neuropathy in my fingers was so bad I had trouble typing. My skin was thin and would tear on a cardboard box. (of course I am moving right now) I started wearing gloves. It was very stressful and effected my mood.
But if the neuropathy hadn't been at the end of the cycle, I would have kept going. After reading your post I am glad I did not. The symptoms have mostly cleared up after 6 days off Ibrance, but there is still some lingering neuropathy.
I should start the fifth cycle tomorrow but it seems that the insurance pre-authorization was only for four months. There is a paperwork delay before I get my next round. I had a gut feeling another week off would not be a bad thing or I would be raising holy hell. Now I know for sure I need this extra week off and I will discuss this with my oncologist at the next appointment.
Thank you again for posting. We are all very tough or we wouldn't have made it this far. There are so many symptoms and side effects we just deal with. It's hard to know what to pay attention to.
I changed some supplements this past round. I suspect the new supplements interfere with the enzymes that metabolize ibrance and it built up in my system. Switching back to the old supplement protocol in the next round to see what that does.
May you continue to do well on Ibrance. The dose you get depends a lot on how your body metabolizes this stuff. If you are slow at metabolizing, the Ibrance will build up in your system and you get a stronger dose. Dropping down sounds like a smart idea.
>Z<
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Rose- my MO has rx'd gabepentin for my neuropathy (mine was burning awful pain in upper back) after a week on this drug I'm much better. I also had to be lowered from 125 ton100 then to 75. Scans are all good.
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Hi ladies.
Congrats lovesmaltese!
I was told more than a week ago that ibrance is no longer working for me. My MO from Florida sent an email to my MOtelling him what the next step is, but he is still messing around. I called him on Thursday and he told me that he is still thinking. I can't get ahol of the MO in Florida because of the long weekend.
The waiting is so frustrating.
Thanks and cheers
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Hi Z-
I know it's frustrating to wait! But, I appreciate that my MO has been honest that it's not an easy decision to move on. As I mentioned to you, she and I talked a long time on Thursday. We agreed to move on, but she's investigating my choices. Most likely will include Faslodex and maybe a trial.
Guess I'm trying to reassure you that having your onc really investigate your best options is time well spent. Take care! Hugs!
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Kapiton- I was off of boards and missed your posts so I just had time to catch up. I am so interested in what clinical trial they have in mind for you. I am on Ibrance/let but now on lowest dose of Ibrance. I wish my bone marrow was not so suppressed where I could have tolerated the stronger doses. Dana does not do pet scans just bone and ct. I also asked MO this past visit about next line if this fails. First she mentioned an oral chemo (Xeloda) then maybe a biopsy where a new progression was, and then said the decision would be made by the tumor board as to what the treatment would be. So hopefully this is what your MO is doing getting answers to what is best. My MO even said if you got good results with Ibrance for a long period of time they are finding that it will work again later on. That must be something new they are learning from the trials.
Hugs to you. Sorry I missed what was going on with you. These breaks are good and bad from the boards.
Carol0 -
theziz- Sorry about Ibrance not working but did they say where there was progression? Did you just have scans?
Carol
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lovemaltesethe new progression in my lungs and liver.
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Hi Z,
It is a good idea to take breaks from the boards for sure!
My MOs consideration is based a couple of issues. First of all, she is making this suggestion based more on TMs than scans- which we know is controversial. But, she believes the very high rises in TMs are predicting what is coming. I'm thinking she is right. And, I've felt so exhausted the past two months I was going to ask for a dose reduction (sorry if I'm repeating some info to you). Naturally she can't reduce if my TMs are rocketing up.
As far as the trial, it is Faslodex plus another drug that has been used-so a new pairing. My qualifications may rely on me having a large enough lesion to measure. I have many, many relatively small bone lesions.
When I find out more I will let you know.
It's never simple, is it!?
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Kapiton- how big of a jump did your markers go? Mine have never gone down ever not even once since treatment started. I started at 42 before treatment when my bone mets were found and In 8 months time since I have been on Ibrance/let I am now at 100. BUT my bone scan and CT scans show stable plus healing. I wanted to share that with you. I am watched closely every 3 months I get scanned. Hugs, Carol
Edited to say: I have been lowered too but because of blood work not fatigue.
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Lovesmaltes,
My MO uses the CEA on me for the trend. The absolute numbers look bizarre I guess because I have so many mets.
Anyway, before Ibrance I got as high as 170. Started Ibrance last June 1. By July I was dropping. September-November were between 105-108. (Pain and rads in November.) December-March between 125-131. April was 169. May is 196. Last two scans (March & May) are mixed. Some spots stable, some increased.
She would let me continue and squeeze a couple more months out- but I chose to move on. My history of going from mild/moderate pain to extreme pain very rapidly that puts me in th ER has her nervous too.
She admitted that it's not a clear cut decision and I could find on so who disagree, but I trust and agree with her.
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Hola Chicas;
I finally heard from my MO from here Costa Rica, i actually called him and and called back. He wants to sit tomorrow and discuse the new treatment. I'm hoping he is not going to put me in IV chemeo.
My MO back in Florida told him to try xeloda with faslodex. I think that is what most people move on to after combo ibrance +letrozole.
Let's see.
i am also out of letrozole and my pharmacy will have it tomorrow. Do you know what may happen if i miss letrozole for just one day?
Aziza
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Kap, I'm so sorry you have pain, I agree I never want you to go to ER either. EVER. I wonder if we can get a mix of mets that some respond to
Treatment because of ER status and the ones that don't are triple neg. That happens in prostrate ca, and I just wonder if we should get biopsy of where new met progression is. I think that is what my MO was referring to when she said if I got progression in new area she would biopsy new met.
In the interim, I will be thinking if you and sending all positive vibes.
Carol0 -
ziz- It is still in your system so you can miss a day without any harm. Been there done that too!
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Thank you Carol.
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ziz - letrozol suppresses estrogen production by tricking the pituitary? gland I believe. in any case, i think you'd have to be off it for days before you saw a significant rise in estrogen. And then you'd have to maintain that increase in estrogen for days to effect the cancer.
i've totally missed a day.
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Thank you, Carol.
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Z the article about the off label drugs was great. Very apropo, exactly to what's going on with Dani. Thanks so much. I sent the link to her Onco also. Metformin, if not for diabetes purposes could I ask you for what purpose are you taking it? Z it's so courageous of you to pick up and make a difference. Very smart. Hope you are doing well. I know you could do it.
Z also you mention about the fibrous tissue in "some cancers", could you explain, which would that be? And you are right, reading Cancergrace.org and so much more that you explained, it's really an art. I am so worried, that they could be misreading, either way, if it's there and they don't see or if it's not there and they see. Her TM's are not perfectly parallel to the imaging results. When she had so much progression last yr, it did not accurately show on TM's, it did not even get to the very big numbers, and she changed therapy 4 times, due to aggressive increase in Pet/CTs.
Z also regarding this paperwork delay it makes me truly mad, not just a little but a whole lot. Two month ago we went through such an awful experience between the Drs office and Insurance miscommunication, it definitely had some delay in tx, and it was extremely draining emotionally to deal with "the rabbit hole". Awful. And now I am afraid that Dani also only had a few run authorization, andI remember now that Insurance told us a while ago, that the Dr only has to write that it's for like a year supply and they would just keep it rolling.Should not the Doctor's office predict that you or the patient will need it?
Artist wish you the best this time around w Ibrance.
Kay which scans are you talking about? I am curious if you guys have more CT scans or Pet/CT. Dani will be having Pet/CT mid June, just rethinking where she should have it done, she wants to stay in the same place bcs the other place which gives a more detailed report reminds her of the area she visited the "other" Onco, and it brings back too many not so favorable memories.
AnimalC I could so relate to your frustration, that's exactly how I feel. This place that Dani is going for scans does not do much measurement, and it's not too detailed. So when I questioned it, he told me, well there are so many areas, blah blah, so I said, well take at least certain main areas and give me some measurements, large, larger and smaller for me that is vocabulary used in Kindergarten. AARGH!!! So upsetting, I guarantee you If it would be their family member they would want to know exactly what they are dealing with. And the truth be said, I think that it's good to see the report if possible b4 you see the doc, so that we could be prepared with some questions, otherwise we are overwhelmed at the office.
Kaption I was reading about Abemaciclib it sounds great, great possibilities. Wish you the best on this new tx. It's hard to let go of something that you know of, but definitely with the mixture you have a lot of possibilities. We will bump into ea other.
Batfax wish you the best with hope that this new combo will work great for you guys.
Carol YEAAH great news. For sure 30!!
Hummingbird can't even imagine what you are going through, just having to think of yourself, and now have to think about Mom. Take care of yourself.
Rosevalley you are dealing with so much, feel better soon.
Lalady wow this is a great trip you are embarking on, good for u.
Shetlandpon I have a book that will be appreciated here about how this guy showed that this business of the blood count dropping at a certain point universaly by everyone is full of holes. I will look it up and post it.
Ziz I give you credit for trying to keep up with Drs from different countries, good for you.
BTW, regarding these 2nd opinions we had a terrible experience. We went for a 2nd opinion to a big time Onco in a Big Cancer Center and showed all the records of course, bcs there was much progression and he had to see the reports, anyway after spending so much time, he kinda said well first we should choose we would wanna use as the main doc, and also saying that IF the other Onco was saying such and such then she is good as far as he is concerned and we should listen to her. NOW, WHEN did we ask his opinion about her credentials? We came and paid for a full visit, with the intentions to hear what he would say, besides he has much more experience and it is in a very prestigious place, so for him to say that whatever she says we should concur was very patronizing. Trust me I had my choice of words, and expletives that I was ready to tell him, BUT I kept thinking to be cool, bcs I was thinking what if we ever really need him, this is a place where they have clinical trials, I could not burn my bridge. What arrogance. I gotta belief what goes around comes around. Very disappointing. As if being in such a place he never had people come to him for another legitimate opinion. Shame.
BT this week, and then scans in the middle of the month. Then we will know how Dani is, going into the next cycle.
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momallthetime my MO here in CR is like that Dr. you went to try and get a second opinion, that's why I'm a little nervous about our visit tomorrow. I don't know how he will react when I tell him that I'm am comfortable with the team from Florida. I don't want to piss him off because I may need him, like you say I don't want to burn the bridge.
The credit for keeping upwith Dr from different countries has to go to my husband, he keeps all the reports and emails, deals with the insurance company etc..
Aziza
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I wonder if you can post the supplements that you have been taking that may be contributing to promoting hair growth. I am taking ibrance and faslodex and am experiencing hair thinning.
thanks
CM
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I take biotin and just started using shampoo with biotin. My hair thinned for a few months and has held steady since then. I'm even going out without my cap lately.
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Ziz we all need this type of help. My daughter has the little girls, and she has a small business. Her hubby works for someone, so it's hard for him to take care of stuff during the day. i make sure I have all reports, every sinlge BT, I call the Onco office and get it faxed(they know already), Just spent 2 hrs on the phone with Insurance/Pharmacy, bcs Ins decided to switch Pharmacy vendors without notification to us, until we understood what this was all about, now I have to spk to the doctors office and BEG they should do their job and call the Pharmacy and authorize delivery of the drugs she is taking. Very frustrating.
So i take care of this, so she could just let it go for a little bit, and not have to think Doctors all the time.
You are lucky, chica.
Maybe you could say something like, you were doing some research, and you discussed it with FLorida doc, and what do YOU (the CR doc) think of it? That for you it makes sense blah blah...I spk like this to this doc now, I do try to read and learn all the time, he knows (or thinks) I know stuff, (I don't), he even wanted to hire me to manage his office. Really. But I can't, my daughter is a full time job. I never know when she might need me, either to go with her or take care of the kids. And so it goes. You doing good!!
Kaption isn't Biotin something they say to stay away from? Or did I misunderstand.
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I checked with MO on biotin. It was ok.
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I work for a to NYC hair restoration md and we recommend:
Iron plus HX 25 mg
L-Lysine 500 mg
Ester C vitamin C 500 mg
Biotin 5000 mcg
Please make sure your mo is on board with these supplements before you take them!
Babs
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Thanks, will do.
I do have a question re: Pet/CT first. For those of you that do have these tests, Dani used to go to a place that gave very detailed measurements of the many lesions she has throughout. Like he would pick something of the hip, something from the spine etc... This new place she is going bcs this new Onco works with them, is not so detailed, more like better, larger etc... I really don't care for it. I called and spoke to the Doc Radiologist, he reviewed it and the best he did was give the different SUV's relating to the last scan, and the other language that he uses, saying this is larger this is stable, this is smalller... Should I still fight it,I hardly believe he will go over it again. it's just that she is due for another PET in 2 wks, and i wanted her to go back to the old place but it's a hardship for her. What say you??
Also, could you ladies tell me what you do re: Mammos. She used to have Mammos at least once a yr, she had a lumpectomy back in the beginning, but now she really does not feel like going yet to another appointment, so is Pet/CT enough? Would it pick up something or is a Mammo still necessary. If I ask the Radiologist Doc from Mammo, she said to come in, but is it so?
Thank you
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Also, Rosevalley and Lalady do you have a port for draining from the lungs? I have my auntie in the Hospital for Pleural effusion that keeps coming back, and doc wants to put a port in. She already has a feeding tube, so I was wondering if you guys think it's a safe procedure for someone older and pretty much immobile. I was just scared if it's not dangerous for infections purposes. Thank you very much.
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Momalthetime- I have a pleurx catheter in my abdomen that was put in September 2015. So I have had it for 10 months; it is for malignant ascites, not pleural effusion. It is the same concept for abdomen or lungs. It is easy to use and I take the fluid off every other day. There are bottles they send to your home. The catheter is different from a port which would be used for IV fluids and drugs. If your Aunt is older, immobile and has a feeding tube already is it kind to continue treatment? Is she able to tell you what she wants? The procedure is outpatient and is fairly easy but uncomfortable until if heals. The nurses would take the fluid off her lungs.
I have been on the Ibrance for almost 2 weeks and am steadily getting worse. I am throwing up again and an bloated and uncomfortable. So I don't think Ibrance is having any effect. The faslodex is wearing off. I see the oncologist tomorrow.
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Can someone please give some info on cost of Ibrance. I am scheduled to go on Ibrance and received a call from an RX company today that the charge would be 2,919.00 up front and 515.00 per month. I am on Medicare and have a supplement. I about fell off my chair. The girl on the phone said the drug was over ten thousand a month. She said I may possibly be eligible for a grant and would call me in the morning. I am also a widow. I don't think I will sleep much tonight. Thanks for any information you can give me. Barb
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