Ibrance (Palbociclib)
Comments
-
Kaption - Well, I guess you're looking on the bright side with the weight loss, but what a way to do it! Hope they get the insurance debate worked out pronto!
0 -
Kaption wonderful that's not something more serious. What a relief you don't have to wonder over the weekend. DH did come in handy, huh! So you lost that bloating feeling? Due to the bad sinus infection? Wow what is there to say. BTW, what would be the name of that pill of the UTI if you don't mind, my sister has constant UTI's and doc prescribed Macrodentin 100 mg every day, for a month for sure. Kaption - regarding Humana, you should know awhile back they had negated my mother's medicine that she was taking for maybe 6yr, in the dosage that she needed. they wanted she should have like 10mg, instead of 50. Crazy, just because some bureaucrat decided, contrary to doctors orders. I wrote them a very nice letter, begging them to reconsider, saying that was the dosage she needed to be well to continue with her independent life and so on, asking them to reconsider, I got a fax number to send it to. And received a favorable response just a few days later. So besides the doctor sending info to them, maybe just maybe you would write also??
Jobur thx for sharing, so 2 ppl said so far that 3 mos would be appropriate, I was always pushing to do scanning soon, but this time I don't know why, I wanted to push it off. The tx now has not been too harsh, and Dani could really use a break, but I know that would be fooling ourselves. Probably will ask doc next week. Regarding Herc/Perj yes she was on it for a couple of months already, with Abraxane and there was much progression, last year she was on at least 6 different treatments, and it was not good. She had a biopsy done in Jan.15 sent to Foundation One, and that's when it was discovered that her HER2 status had changed. She was on Kadcyla (TDM1) also a fantastic tx,also new, but it did not do anything for her. We were begging the "then' Onco (it's a different one now) to do that biopsy already in the middle of 2014 because there was accelaration of lesion growth, until she took us seriously. Dani has pretty much been on almost every protocol already. So this Onco discussed with us maybe we try this one. I did speak to Pfizer and they say that it's used off label, but they don't have documentation of results yet. And so it goes.
Lynwood thx for the input on the scans, I will try to arrange it for the end of the month. It's so helpful to get input of what is the norm for other people.
0 -
Awesome news Monika,lovemaltese and Moissy!!!!! I am very happy for all of you!
Than you for understanding lalady1. I am finding myself to be very sensitive to my close friends behavior and am trying hard to see things clearly( meaning are they being insensitive or am I unrealistic at times). It was wonderful to hear my best friend tell me today that she is honored to take this special trip with me! This meant the world to me. Makes a girl fee loved and this was really what I was looking for the whole time!!!!!
0 -
Awesome news Monika,lovemaltese and Moissy!!!!! I am very happy for all of you!
Than you for understanding lalady1. I am finding myself to be very sensitive to my close friends behavior and am trying hard to see things clearly( meaning are they being insensitive or am I unrealistic at times). It was wonderful to hear my best friend tell me today that she is honored to take this special trip with me! This meant the world to me. Makes a girl fee loved and this was really what I was looking for the whole time!!!!!
0 -
Mom, the UTI medicine is methenamine hippurate. My urologist (who also has a Pharm D.) says it's an old medicine. You must be "clear" of any bacteria when you start taking it. It's not an antibiotics, but a anti-infective. So far it's working. I take 1gm twice a day. It's a large white pill and I believe it is the one that scratched or irritated my esophagus so, take with a whole glass of water
Btw, I've been having scans every 3 months so far too.
0 -
Hey Kaption very interesting thx so much, I'll pass it on to my sis, maybe it could help!
And thx about the scans, so on Monday I gotta get on it right away so she should be able to choose her schedule. Take care,
0 -
Well guys, I really hate to have to report this. My scan for my 1st 3 months of Ibrance showed significant size increases in both my lung and chest lymph node tumors. Luckily, they are still in those areas only, but man I was so saddened to hear that after all you guys have had such good scans! My onc said no more Ibrance and is working on approval of Xeloda with my insurance. Also, I am planning (with his help) to set up an appointment at MD Anderson in Houston to see what is available and just kinda do some investigating.
I have really enjoyed chatting (mostly reading!) with all of you and now I guess I will be off to the Xeloda board?
0 -
NicciJ,
I am so sorry to hear your news. I'm sure you're feeling sad and afraid tonight and I hope you have someone to be with and talk to while you consider what is next. That's wonderful that you live near a world class cancer center like MD Anderson and can find out all the options that may be available to you. Just remember that even though this combo failed you, the next tx may be just the thing for you and work better than you can imagine right now. Sending hugs and positive thoughts.
Jo
0 -
Oh, Nicci, I'm so sorry. It's just so frustrating that no one drug works for everyone. I can imagine how disappointed you are, but I think getting a second opinion at MDAnderson is a very wise thing to do. Please come back and let us know what they tell you and how you're doing with Xeloda. You know, there have been several women here who were in your situation who are now doing great on Xeloda. Hopefully, that will be your experience as well! (((Hugs))) Deanna
0 -
Thanks you guys. You know, I think I'm still in some kind of shock. I think "not working at all" was not even an option in my mind about this drug so I'm a little bit blown away here.
Thanks for letting me know that, Deanna. I didn't know there was anyone that had been in my shoes and now doing well on Xeloda.
And yes, frustrating. Really hard to hold on to faith. Gettin really, really hard. Not giving up though.
0 -
Oh, Nicci,so sorry that this tx wasn't helpful. Ditto to what Deanna and jobur have said. Sounds like you have some good resources to investigate to find that treatment that is right for you. Yes, please drop back in and let us know what and how you are doing. Hugs and prayers!
0 -
Nicci. I know how you feel. Ibrance/letrozole didn't work for me. Then I went on GDC0810 which also didn't work and boy was I down, upset and discouraged!!! My next txt was Xeloda which has knocked back my mets significantly. So hang in!!!! Going to MD Anderson is a great idea. In between on my treatment I switched from a local cancer center to Memorial Sloan Kettering. I'm hoping Xeloda brings you to Ned!
Babs
0 -
Nicci - I'm so sorry to hear that Ibrance didn't do enough. I
have lurked on several other threads -Xeloda and others, and it is amazing to me that some women can have no response on one drug and then go on to have great success with a later one --as Babs did. You have every reason to believe that the next treatment can be very effective for you. Hope you check out some of those other threads. Sending warm wishes and a hug your way.0 -
LovesMaltese, healing bones--fantastic!
Moissy, I'm glad your recent labs were good. This stuff is nerve-wracking.
Whorunewayz, welcome.
Kaption, it just fries me that you have to suffer while insurance company bean counters mess around.
NicciJ, Ugh. I'm sorry. Was Ibrance + letrozole your first stage iv treatment, and xeloda will be your second? I'm curious to know if your doctor discussed a different hormonal therapy vs. xeloda. I would like to understand this subject better as I have a feeling I may be heading for a change soon.
My update: TMs went down a bit. They are still higher than they have been, though in normal range. So just waiting for the next blood test. Ambiguous scan and some symptoms still have me worried. Onc says faslodex would be next.
0 -
Shetlandpony, Thanks. These side issues (bladder and sinus infection, and now esophagus ) drive me crazy. But, my swallowing is slowly healing on its own. It is annoying that Humana won't cover what a doctor prescribes!
I'm sort of in the same spot as you, but scans were stable enough (some spots bigger, some smaller) and last TM stable enough to go 3 more months. But, my next treatment will be Faslodex. I'm with you on understanding when the hormone treatment is changed vswhen the chemo/targeted therapy is changed.
0 -
Thank you, all of you. Your kind words really are sooo uplifting, I can't begin to tell you how much. I am so thankful to have found out about this discussion board! There is really NO ONE that I can talk to that really understands what I am going through, but you guys. What a blessing!
Babs, not sure what GDC0810 is...hormonal as well? Thank you for your story. You are giving me some hope! Do you still deal with Mem Sloan Kett? I go to Texas Oncology right now, and from what I understand is that they are on the same level as Cancer Centers of America (because I also entertained that idea as well). MD Anderson is supposed to be a level above TX Oncology and CCA. So I would like to hear what they have to say. And my oncologist, thank God, is all for it! He thinks its a great idea!
Shetland, yes, after chemo, surgeries,& radiation...and thinking all was good, I started my 10 yrs of Tamoxifen. Within 2 mos (I think it was Feb), 2 places showed up on my lungs, but in such a way my onc said it could possibly be radiation burns. We kept doing scans to closely watch and never any change until Nov. So anyway, he said obviously hormonal treatment is not "cutting it" for me so we need to move on to chemo.
He mentioned something about Faslodex, shots, lots of chemo options, etc. So maybe what he was saying if this didn't get approved or if this didn't work we would do Faslodex next?? Hell, I really don't know. I was off thinking about needing to get my will done for real this time and what is my daughter going to do without me, while my mom was choking back tears and trying think of questions we knew we would want to ask later. I know if I don't get some kind of result from this Xeloda, I am really going to freak out. I haven't gotten upset yet over this, one because like I said I still feel a little bit shocked still and two, if I fall apart my mom and daughter are really gonna lose it.
Moissy, I'm a bit of a lurker too! Ha! I did go to the Xeloda thread to say hi, but I think I will lurk a bit and read.
Kaption, have you been on Xeloda yet? Oh, and I hear ya on the ins...I got Humana too! So I feel your pain!!
0 -
NicciJ, I have not been on Xeloda.
So glad you are seeking more information. It helps all of us.
I was paging back on this discussion board and realized I post more often than I thought. This group has helped me so much. I tried a local support group (all types of metastatic cancers) but that group just wasn't what I needed. They tended to be angry and not as hopeful as I'm finding here. Guess I'm trying to say THANK YOU to a group that supports and provides hope. You ladies are exactly what I need
0 -
Hi Ladies,
I am mostly a lurker but do post occasionally. I too would like to say how great you ladies are. Even if I mostly read...you all give me hope and inspiration!
Nicci, I am confused why your onco is saying Xeloda is next for you. My onco told me that just bc you fail letrozole... Doesnt mean faslodex would not work for you or the AA combo. My onco also said she has patients that failed letrozole and then got 2 years out of faslodex. Im sure MD Anderson can help with this. I wish I could get thier opinion but my insurance will not cover it.
Also want to tell anyone who has mets in their chest about my experience with proton therapy. I had 2 places in my chest that were pretty active. Suv was about 8.1 and 9.3. I asked the onco I had at the time.....who was pushing chemo...if I could do proton therapy. There was a proton center right next to my condo. He flat out said no it will not work. I decided to go straight to the proton center and speak to them on my own. Long story short....they treated my chest for 6 weeks. It completely resolved the chest mets and have been clear for a year. I have 4 lung nodules that have been stable and have very low suv. My proton Dr has an interventional Radiologist doing a biopsy on wed. He said after The radiologist gets the biopsy he can go back in and freeze it. Once my proton doctor has a confirmed diagnosis of cancer he can treat the remaining nodules with proton Therapy. My Proton doctor has been a blessing. He has done more for me than any of the oncologistsI have had. He really Cares!! I realize that this is not a cure but I believe it has definitely brought me time.
Everyone have a great day
0 -
GDC 0810 is an estrogen receptor degenerator. Since my ca is so highly estrogen and progesterone positive my MO went at it through AIs at first Then Ibrance/letrizole and Gdc 0810. But they didn't work so Xeloda was my next stop.
Babs
0 -
Babs, this disease is so unpredictable. I remember when I was first diagnosed 18 years ago in upstate NY ( back then saw someone who is now a very famous MD at Northwestern University Dr. Seema Kahn) told me that I would die of something other than BC. After 18 years back it came and not in my breast either. Just straight to my bones. I was ER/PR positive back in 1997- was on tamoxifan for 5 years and then femara for 5 years after I did all the chemo/rad protocol. What I bet they will have in future treatments is never to come off of the blockers ever.
I had two bone biopsies done in October and November 2015 and both said triple neg. As the story goes, new Dana Farber MO said she didn't buy it as when they break down the bone by calcifying it-and it can loose the ER/PR status. Even my RO said I probably was very weak ER/PR pos but the protocol I am on now is working.. so go figure... It just does not make sense... does it? So in my case the cells hung out somewhere for 18 years before they decided to become active.. and not back in my breast. I have completed genetic tests and carry zip for any of this. My grandmother died in 1960 of bone cancer but was NOT diagnosed with BC back then. There is something that triggers this.. some gene somewhere... I think diet and environment add to the chances. So I am giving the vegan diet a shot. No one else in my family has ever had BC in any of the generations except maybe my grandmother.
What does makes sense is that we are going to figure this out... I pray that MBC is as simple as treating someone with high blood pressure or diabetes in the very near future. Most important is to get to a good BC center if you can.
Carol
0 -
Hi rpoole, I think he is saying that since the Tamoxifen and Femara have not worked so far, he wants to do chemo to stop the progression and hopefully shrink these tumors. Then go back and try the Faslodex possibly? I think. I was really upset so I'm not sure what my brain heard correctly. I will definitely check into the proton process though! That is news to me, thanks! And not sure just yet about my insurance and MD Anderson either. But that is my plan, providing they accept it. At least see what they suggest.
0 -
nicci,
That does make sense to me now. I hope you get to talk to MD Anderson. Its always nice to get a different perspective!
0 -
rpoole, I had never heard of proton therapy, just did a quick google and found the information very interesting. Thanks!
Babs. Thanks for coming back to visit and bringing some positive news regarding Xeloda. Glad to hear it is working for you and hope it continues. Good luck with the switch to Memorial Sloan Kettering too! It must be wonderful to be going to a major cancer center, wish you all the best.
0 -
Nicci, have you contacted MD Aderson for second opinion yet? Do you know you can self refer to MDA? Just call or contact them online. My onc recommended me for second opinion in MDA. Her nurse made referral contact when I left the onc's office. Before I drove back to my office(less than 30 min), MDA already called me. However, to meet with a onc there took another month wait for an opening. So if you haven't contacted MDA, do it soon. They will tell you if your insurance will cover or not.
0 -
Thx rpoole. I looked up the proton therapy as well. MD Anderson provides it and also Texas Oncology(!!), where I go, has an entire location dedicated to proton therapy in Irving, TX. They have never mentioned this as an option for me...so I have a lot of questions to ask when I go back on friday.
0 -
Hi cling! No, I haven't contacted them yet. Yes, I heard you could do that but my onc said they could make the appointment for me so I thought maybe that would be better? May get me in sooner? Where in Texas are you from, if you don't mind me being nosy?
0 -
Nicci, the reason why they dont mention proton therapy is bc its not the standard of care. My onco at the time told me no and it wouldnt work. Thats why I sought it out on my own. Perfect example of why you must be your own advocate. I went to Provision Proton Center in Knoxville. My insurance wouldnt pay, but they treated me anyway. My Dr there told me that more than half of the patients coming through there....get treated free because their insurance won't pay! He said he expects within five years it'll be a standard treatment and insurances will be on board. I Still follow up with my Dr there and he is on top of it. He is being more poactive than any of my oncs have been. I just dearly love him!!! If you decide to seek it out.....i will be here for any questions you have!
0 -
jobur, if you have any questions about proton, feel free to ask!
0 -
if anyone is interested....here is the link for my personal proton story..
0 -
Thanks Jobur-I like to check on this thread-you all were terrific while I was here and I want to make sure you're all doing well!
Babs
0
