Ibrance (Palbociclib)
Comments
-
lwrite FIRST the good stuff, oh so nice! and of course a nap is in order. But what the doc says about the pains? How can they help you with that? Thanks for the prayers, always helpful.
Moissy, thank you very much, i'll pm you also
Deanna thanks so much for your help. Yes, when I go to Romansma thread, it makes me really sick. She was so full of hope. How did it get so difficult so fast? Agh, gosh. My husband is a CPA, and it's like madness here till after tax season. Hope things worked out for you. I will go on Bestbird's info, it's like a Bible but I will go study it for clues.
So i kinda messed up, it's not Xtandi as i thought, but XOFIGO, another tx recommended for prostate cancer mets. After we spoke, the Onco explained that his reasoning is that this one is specifically recommended for bone mets, those are the customary mets from prostate cancer. He wants to add it to Ibrance/Letrozole, because he likes the way that combo did get some stability. Then I commented about her Her2+ status, so he changed his mind for now, and he thinks he would go back to Herceptin/Perjeta (which she had much progression on that), but together with Ibr/Letr. He thinks it might work differently. He's gonna look through the reports, bcs I told him as much as it sounds good, the bottom line is it did not work for her. He would do the Faslodex mix also, it's a game. She was on all that, but individually.
It's weird that the very coveted txs for Her2+ like Herceptin/Perjeta and Kadcyla (TDM1), did not work for her at all, she had much progression while on it. So he doubted the Her2+. But i reminded him, it is not dubious, bcs she had the bone biopsy and the blood biopsy both showed the status and it was +++ so that is no maybe. We just cannot figure out why it's not taking. Monday we will talk again.
On the skull there are more than 20 lesions, it's not in the brain, but one particular one, it's been close to her eye (behind), that one got larger.
I need to learn how to go to these links...
(I am putting all this on the bones mets thread, sorry you gotta see it twice)
Thank you, thank you
0 -
Kathryn, WOW!!! Great scan!!! you give me hope that I might get there one day
0 -
MomATT, just responded to you on the Bone Mets thread, so won't duplicate it here... (((Hugs)))
0 -
Momall-I was told that I was stable while some progression was noted-I always thought stable meant it stayed the same?!? But in BC land stable is not really stable! Have you spoken to Dani's one about the brain scan results yet.
Sending hugs
Babs
0 -
Just got my Xeloda this morning, FINALLY, after all week of waiting on Humana to get off their arses!
Once CVS Specialty got a hold of it and the "ok", they were off and running. Deanna, I have never had the AI's or AL's or whatever those are. Not yet...just the two (Tamoxifen & Letrozole) as far as hormonal. I may be back to them eventually, but right now until he feels like we are more in control, he feels safer with Xeloda.
I did give my onc the "go ahead" to send a referral to MD Anderson and whatever paperwork they needed in an email last night. By 1:00 p.m. this afternoon, a lady was already calling me from MD Anderson to get more precise details of this horrible journey and we were to the part of making the appt and insurance when it all got messed up.
They are not contracted with my Humana HMOx, only the HMO Bronze plan. UGH!!! Anyway,.... I am waiting for my disability approval any day now and she said I should have Medicare when I get that and they do accept Medicare. So not totally out of they question, but it is just for now. I filed almost a year ago for my fibromyalgia since I am basically bedridden w/o pain meds and sometimes even w/pain meds. When I got the stage IV dx in Jan this year, my atty said it should speed this up to probably 2-3 months. Who knows.Momall, bless your heart. Do you ever sleep? You seem so on top of things and so busy! And so smart! (((HUG)))
Iwrite, sorry to hear about your vision. That really does suck. I hear ya! I had great vision until chemo. After the 2nd round of AC it started and went fast. I have "readers" all over the house!
0 -
Nicci, good luck with Xeloda! Please keep us apprised on how you're doing with it, as well as getting into MDAnderson. It's wonderful that they contacted you so quickly. I will pray that your disability comes through very fast now!
Just FYI (for future), A/I is short for aromatase inhibitor, of which letrazole (also known by brand name Femara) is one. There are two others -- Anastrazole (brand name Arimidex) and Aromasin. Just thought I'd clarify.
0 -
Thx Deanna! And thx for the clarification! LOL! I wasn't sure what I was talkin about!
0 -
Hello ladies.
It's been awhile since I posted. I haven't had the time to catch up with everyone's posts. I hope everyone is doing as well as can be expected.
I got back from my cruise two weeks ago I think. I don't know...ever since I got back I have been severely depressed. Crying multiple times per day. I just want to snap out of it. I went to paradise for 11 days and, although I usually have a hard time with back to reality...this time I can't seem to adjust to reality at all. I'm scared. I've never felt this way before. I just can't snap out of it.
It doesn't help that my onco suggested IV chemo. Toxol for 12 weeks.... Just to get my cancer under control. I have only been on ibrance/faslodex for 1 round plus 3 weeks into my 2nd round. My TM are through the roof. I don't know them off hand..but since I've been on the med combo CEA went down a little and the other two marker went up. I can remember that CA 27-29 went from around 1600 to 1800 and CA15-3 went up around 200 pts as well. But LDH went down. Liver enzymes went down. RBC and WBC and everything related to that is taking a beating. WBC seems to rebound but RBC does not. Maybe being tired all the time is the cause of my depression
Just wondering if I am doing the right thing by refusing IV chemo right now. I want to give this combo more time to work. What does everyone think? With my TMs climbing, should I do the taxol for 12 weeks? Or should I give this combo more time?
Liver MRI on the 19th and then PET scan after I finish my 3rd round. At least that is he plan if I have my way. We will see what doc says after the liver MRI. Also have TM blood work next Wednesday. That plays a role as well. Takes a week to get those results. So I guess I am all together in the waiting coaster. Just wish I could get out of this funk!
0 -
Welcome back, Sony, although I'm so sorry to hear about your depression and the recommendation for IV chemo. I don't recall if it's been mentioned here as much as in the FB Ibrance group, but women there have mentioned depression as an SE of Ibrance, so it makes sense to me if you normally feel a bit down after a vacation that Ibrance is exacerbating that for you this time.
As far as how long Ibrance takes to work... from everything I've read and seen both here and in the FB group, Ibrance more frequently than not takes more than a month -- sometimes up to 6 months -- to make an impact on TMs, during which time it's not unusual for them to climb. In addition, some women have had improved scans in spite of TMs that have never made a turnaround. I can't recall... are your mets bone only or elsewhere? If bone only, I think I would personally lean towards giving it more time to work. But if you already have liver mets (sorry, I can't recall), I think that might change my thinking, because from what I've observed, some (but not all) women with liver mets don't do as well on Ibrance as those with bone mets only. But please keep in mind this is just my non-medical-degreed opinion based on observation, and might not apply to you. I'm so sorry you're in this tough place, but that's why it's so important to have an onc you trust to guide you.
0 -
Hi Sonya, I'm so sorry for this tough spot you are in. I would personally want the scan information before making the decision. i thought sure I was headed for treatment change a month ago-because of TMs, but after the scan all seemed more stable. But, as with Deann's observation, I am bone mets only.
Do you have an option of getting a second opinion?
Hugs and prayers for clarity and feeling our support.
0 -
Kathryn I just read back on this thread and saw your great results! So happy for you!!
Bab
0 -
Lovely Sonya - I was hoping you would have better news after your cruise. Very sorry to read you are being advised to switch to Taxol - did you have IV chemo previously? I had 6 rounds of taxol in 2013 and can assure you it's a tough regime - and you will lose your hair (unless you try cold-caps, which I can PM you about). You are only 40 with 2 young children and a lot on your mind, I would get a second opinion asap. My UCLA onc who was part of the Ibrance trials told me he had several ladies come in after their onc took them off Ibrance too early (generally at round 2). His opinion is that best results for ibrance/fas are seen in later rounds - (up to 6). You may also benefit from some kind of anti-depressants to help with crying/anxiety, so please discuss this with your MO. Your PET scan planned for end of round 3 may be a better indicator than TM - (see Pam's earlier post). If you chose to continue on ibrance/fas a few more months that is your decision and no one else's. Taxol is always an option, but IV meds are not like shots or pills. We are here for you - sending you a gentle hug (()).
0 -
Sonya if you are doing the scans soon then why not wait? You would then have a more clear picture.And why should you have to wait a wk for blood results. It does not make any sense. They could have it the next day for sure. You could maybe try telling dear Onco that you would like to have the BT results the next day when they should have them, and then talk it over with them.
YOU are all so awesome, Babs yeah - stable should mean something right??
Even Onco, was hesitant how to tell me, well there is stability but there are NEW lesions and some(many) old did not change(which I could understand that is supposed to be good, but WE don't like that). And wait, I am gonna call that Rads place tom and spk to the BIG guy there, in a nice way, BUT I do wanna tell him that people waiting anxiously for results after such a difficult test as Pet/CT, I for one expected more details in the report. I don't care that THEY know, I know Onco called him, and got the info from them, he did not look at the CD, and I (we the patient) wanna have more control and have more details, using words as a LARGE met, there is suggestive increase of activity in the thoracic...I wanna know what kind of suggestive, while they are looking at it, they could and should measure it, and give me some numbers, this was across the whole report, very few real numbers, and on the Pet/CT of such an extensive mets(as they say), how come I only have one SUV??? I am more angry now than on Friday, does it make any sense. I think these things cost a lot of money, and they should do their work, and not be lazy by just saying comparing to last time. Then reidentified in the skull, but not numbers. (only on the MRI). I am very upset.
Deanna you were so on target in understanding the relationship. Yes, he tries, and wants to help. Anyway, a yr ago, I sent all info to MDA and a rep called and told me that she would have to be off meds before they see her. Does that make any sense? I even asked for someone Dr. Hobatagyi(something like that).
Does anyone know something about Univ of PA? Someone was mentioning this name, they said they could help us get there...Dani is so sad that there is only some betterment, and she doesn't even know about the new lesions, i could not bring myself to tell her, was bad enough telling her that there is plenty there still.
Onco says we should stick with Ibr/Letr plus something he will come up with. So he mentioned this Xofigo but I am reading about it, and they say to be careful bcs it's radium...so she has little ones at home, could she have this? Hmm not so happy.
One of the many books that I am reading now is, "Fighting cancer with hope and knowledge" from Richard Frank. He explains a lot about treatments. I feel very responsible, that I could give the ok for a treatment or not. Does one go back to a tx that did not work, but try it anew with the mixture of Ibr/Letr.? The question is how long can one afford to see a nice amount of change?
Doc said something that I thought was weird, that bone mets don't go away, you can't eradicate all of it. She is far from "all of it" but does it makes sense what he is saying?
K, I gotta go back to my homework. Thank you all so much for being such good friends.
0 -
thank you for all of the replies ladies.
Deanna...I was starting to feel like it was the ibrance causing the depression. I think it may be because it lowers RBC and everything associated with it and when you feel run down and tired it makes you depressed. I know exercise would help but with the bone mets o can't do it. My hips are pretty bad. I miss exercising. I also have mets to the liver. I am not sure how long I should stay on the ibrance/fas. I don't want to make a mistake and not do the chemo. I will for sure wait till the PET scan in May. Thank you for your kind words.
kaption. I really do feel like I should wait for all scans to come in. When I was on afinitor and Aromasin my TMs went up for a few months and then I had a clear scan. The waiting is so hard! I do have contact with a few Drs for a second opinion. One from Duke and one from Yale. I need to send them an email.
Lalady. It is so hard to come back from paradise to all of this crap! I did sonic chemo. When I was first diagnosed I did 4 round of A/C. The RED DEVIL. I didn't tolerate it well at all. I am deathly afraid of IV chemo. My onco makes it seem like 12 rounds of taxol will be tolerated well. I am trying to avoid it. You're right. It is my choice of I want to stay on ibrance. I want to give it a fair try. I'm just scared. I don't want to make the wrong decision.
Momallthetime. You're right. I am going to wait for scans and then make a decision. I may even decide to stay on the ibrance against what he says. IV chemo just beats your body up too much. I want to have quality of life. When I go in for normal blood work, I get results the next day. But when they test for all three tumor markers it takes a full week for results. Anyone else get them quicker? The week wait is torture.
Thanks so much for the support. I am considering an antidepressant. I was prescribed one months ago and it just sits here. I'm afraid to take it. I do take anti anxiety. It help a bit. But most of the time I just feel sad and angry and scared. And a lot of anxiety. It's no way to live. I try to be happy but it's hard.
0 -
Sonya yes, we get the TM's the next day just like the BT, I see no reason otherwise. It's weird. Are you in a major city? What's the reason? It's not like a culture that it has to sit, but i did hear of very long waits for a lot of things. It's worth to ask maybe. And how about taking something to help with anxiety. It's very normal. I take something to help me sleep, and anxiety too sometimes. Of course you are angry. Why should you not be. Maybe you could write things down, like a book, and it would at least give you a place where to vent some of your frustration. Yoga is also a good thing.
0 -
Sonya, I also get my TM results the next day. I just call the office and the girls tell me over the phone.
0 -
Lynwood I are you from PA? I am looking for info on the Univ of PA. Someone I know has a way to push us in, or at least send papers for opinion, so I am trying to find out who is familiar with them.
0 -
momallthetime. I live about 30 min from DC and live in an area with a major hospital system called INOVA. I need to ask why it takes so long to get TMs. I thought that was just standard.
I actually do write things down. It does help. Maybe I need to do it more often. I also share it all with the world and it helps to feel the support. I have a caring bridge page and also a public Facebook page. The support I get is helpful. It's also helpful to be able to explain everything at once to keep everyone in the loop.
I am going to ask if the antidepressant I was prescribed months ago(lexapro) is safe to take with ibrance/fas. And if it is I need to start it. Can't go on like this. I don't feel like myslef at all.
0 -
Hi Sonya - I'm glad you had a wonderful vacation. You've already received some great info from others. It does seem that it takes Ibrance longer to work for some women, and tumor markers can also go up before they go down because of sometimes measuring additional dead cancer cells in the blood that may have been killed by treatment.
So I can fully understand your reluctance to change treatment so quickly. I would feel the same way. As Deanna said, your doc may be wanting to put the brakes on the liver mets, however, which could possibly allow you to then return to Ibrance once things have been slowed. I hope your scans will give some more definite info so you and your onc can both feel you are taking a good path forward.
I hope you are able to stay on Ibrance, but just wanted to throw one other thing out there for you if it helps. As I understand it, (someone please correct me, if I'm wrong), IV chemo drugs for Stage IV are not usually given in the same dosages as what some of us had for early stage treatment, when the goal is to try to "slash and burn" everything. For Stage IV, as I understand, IV chemos are usually given in smaller dosages to minimize side effects to the extent possible while still keeping disease stable and fighting progression. Some side effects are inevitable, but they may be less than you anticipate if you had early stage chemo. Here's a link to the Stage IV Taxol thread if you would be interested in reading some of their experiences with Taxol.
Weekly Taxol thread for Stage IV
BTW, it takes me two days to get my TM results. My primary labs done at the hospital are available same day--some in under an hour, but the TMs are sent to an outside lab, so takes slightly longer.
Wishing you well, Sonya, and I hope you get some good info from your scans!
0 -
Mom, I am familiar with U Penn but have not gone there for treatment. Their reputation is excellent! My best friends daughter is a chemo nurse there. My friend Helen hasovarian cancer and went there for a second opinion and was very impressed. They worked with her local onc and searched for clinical trials for her.
0 -
MomATT, I know someone who has an "in" at U Penn. I will ask her if she can help, and if so, I will put you in touch with her. I'll email her right now, although I also think Carol's Dana Farber offer is well worth considering. She and I often compare notes, and her onc reminds me a lot of my onc @ ULCA, to the point that just hearing about her makes me think she'd be a great fit for Dani.
PS ~ Heard back from my friend immediately, and she seconded the recommendation for DF. I see someone on the Bone Mets thread goes to U Penn, so I'm glad she can possibly help you get in there, if that's your first choice. Sorry, I couldn't help afterall.
0 -
My blood work is drawn an hour before my visit with MO. I get the TM results during office visit with her an hour later. Love that about Dana. But xgeva shot is PITA. They have to order at the pharmacy to send up after they see blood work. Pharmacy is so slow that I wait sometimes 90 minutes. I now am going to outsmart them. I will check in for shot before I see onco in hopes it can be ready when I'm done with onco visit.0
-
I need help and don't know where else to turn! I was told in January that my rib was fractured (not displaced). I've just finished up 10 rad treatments to help with healing and pain and am not getting any relief. The RO told me that he could only help me with the tumor....nothing he could do about the rib..."just keep taking your pain meds", he said. Meds are not touching this pain! It is getting worse everyday. I can't take a deep breath and heaven help if I have to cough. Its like a hot knife is being jammed in me repeatedly. With each breath, I can feel the rib popping...I'm not sure how else to describe it....
Does anybody have any suggestions at all??? Please share if you do...I am miserable
Much thanks to all of you!
0 -
Mas- I have been where you are. It took weeks and weeks after the radiation was done for them to feel better. Don't forget that even though you just finished rads, the radiation is still doing some work for at least another week- After rads it takes another 6 weeks to really heal. I am healed there but they always ache. RO told me I am always going to feel some sort of soreness there. I have read some cases that they can remove the rib. I just promise it gets better. I could not lay on my side and when I lifted up my arm I would get pain referred pain in my back from it. I swore when I sneezed I would break it over again. I still get that pit in my stomach when I have to sneeze. Liquid Advil was the best pain med and I took 400mg every 8 hours religiously. Hope this helps!0
-
Good afternoon,
I don't know if I answered the questions you all asked.. My oncologist has no answers about the pain that continues, but it isn't showing up on scans so I'll take that (and some ibuprofen.)
Tumor markers looked good and I had follow up labs today to see if my numbers went up enough to start the Ibrance again after a two week break. Hoping to know tomorrow. My doc did move me down to 100mg of Ibrance due to side effects with 125 mg. I would like to stay on the 100mg dose since it seems to be helping.
Busy spring here with volunteer things. It's exhausting, but I refuse to give up having a life. At this point the plan is to put on waders and scoop up some larvae from the local streams in the next few weeks. It's one way to test the quality of the water going into our reservoirs that provide all our drinking water. Between that and putting in a larger garden my goal is to have zero time to think about cancer beyond taking meds and eating well. I do plan to continue pulling for the lovely folks on these boards!
Question...is it okay to drink grapefruit juice during the week you are off the Ibrance? I'd really like to drink a Fresca...
Hang in there ladies!
0 -
Kathryn, you may get mixed opinions, but I'd stay away from grapefuit juice, period. As long as there is any Ibrance in your system, it can make you quite sick.
Masonsmawmaw, have you had any imaging of your rib since January? I haven't had RT for mets, so can't comment on the lingering effect Carol and others know about, but the fact that it keeps popping in that area might make me ask for some sort of imaging (maybe an MRI?) to see what's going on with it at this point -- that is if it will image clearly so soon after RT (not sure).
0 -
Moissy. Thank you for the advice and for the link to the taxol group. I have heard that abraxane is better tolerated than taxol. I really would like for my oncologist to give ibrance the full 6 months. I guess it all depends on what my liver MRI and PET scan say.
It's good to know that possibly the dose would be less than for someone with out mets. Of course I would like to keep my hair, but it's not the first thing on my list. I would love to be functional. Summer is my favorite season. I would hate to have it ruined by 12 weeks of hell. That would really put me into a downward spiral.
I made the mistake last summer of not listening to my onco. I don't want to repeat the same mistake. I only had bone mets at the time and they were progressing and TMs were going higher and higher and he wanted me to start Afinitor/Aromasin. I wanted to enjoy my summer and I was really scared to start the "chemo" pill. So I put it off all summer and in September the cancer moved to my liver. Not sure if I will ever forgive myself for that one. Guess I should listen to my doc so that I'm here to enjoy next summer.
0 -
Sonya -Don't be too hard on yourself about last summer. There's a good chance that those dang cells had already decided to set up housekeeping in your liver and may have just been too small to be seen on your scans. So there's a chance your treatment switch may not have prevented the move if they had already migrated. Just another one of the many "we'll never knows." We all make the best decisions we can based on what we know and what we feel, and don't look back. Hope your scans are stable and you can continue on this protocol for awhile.
0 -
Moissy. Thank you! Sometimes it's hard through this process not to blame yourself at some point. Or blame your doctor for not doing certain things. Before I was diagnosed with mets I had a lump in my auxiliary...right on the side where my BC was. I ended chemo in May and discovered it in October. My onco said it was scar tissue. I should have gone to my breast surgeon or insisted on an MRI. My gut told me it was something and I ignored it. 9 months later the lump was discovered to be a reoccurrence and I had innumerable tumors in my bones. Our guts are always right. I believe it is how God communicates with us. Sometimes it gets confusing and you can't figure out who to listen to...your gut, your mind or your doctor.
0 -
Masonsma so sorry you are in such a agony. I was gonna mention exactly what Deanna mentioned about scans, any possibility? It takes sometime to things to settle down, I just can't tell you off hand if your pain is related to that or it's something more. Feel better quick!
Deanna aww you guys, I gotta go read the bones thread to know about the connection. Thx so much, yes, Carol was in touch with me. Bless her. Bless you.
Also, LovesM yep, you gotta learn to beat the system. Insane how they can't figure things out.
Lynwood thanks a lot, it's great to know.
Today, we had another surprise NP sent me an email, that doc decided that Dani should stay on the Ibrance/Letrozole ONLY!! What?? Yeah, we will have a convo tomorrow morning, I convinced Dani to be on the phone on a conference, we gotta get this thing straightened out. What really is making my head spin, is the fact that if the PET is correct, then the Ibrance which is guided to HER2- ppl is working on Her2+. And all the good stuff for HER2+ was not working on Dani. That is really strange. Unless nothing is what it is. The biopsy was double checked bu a different source in Sloan, and then another biopsy this year confirmed status, so that's insane.
I am thinking of Dr Robert Nagourney also, he has a different take on the cells, something like they don't proliferate really it's more that those that stay are because the don't die. He takes a sample of the tumor and tries all options to see what really works for that person. Did anyone here of him, he is in CA. Maybe it's worth a phone call.
So that was my update, thanks immensely for being here. I honestly get strength from you.
I did read once awhile back, Deanna maybe you would know, someone mentioned how most drugs don't break the brain barrier, but only one certain one, does anyone know what I am talking about, I will search anyway, but I figure I will post here too.
P.S. Sorry for you gals, I am posting again in the bones thread, just a warning xoxo
0
