Ibrance (Palbociclib)
Comments
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Hello -
LovefromPhilly - per your question - stopping Xgeva was not by choice, after 2 years of monthly shots and then every 6 months the Doctor got worried about possible side affects. I felt the Xgeva helped, Oh Well.
JoynerL - per your question - only have Bone Mets - extensive throughout skeleton, little progression in the first 3 months, then things leveled off and are stable for now. Going month by month.
Take care all !!
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Started Xeloda (3 500 mg pills in AM and another 3 at night, 7 days on/7 days off) yesterday. Fingers crossed. I have ever cream and unguent known to man on hand...
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Hi Joyner, can you remind me again why your MO went directly to the chemo Xeloda instead of an Afinitor combo?
I know you talked about it, just can't remember. Blame the meds.
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Wow, Joyner, that seems like a lot. Is that the normal starting dose for Xeloda? At least with the separate 500 mg pills, it would be easy to reduce. My mind goes there immediately. Is the MO at MSK still involved?
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SouthJersey, I had six months of the Xgeva shots, then my doc switched to Prolia, one shot every six months. It's the same ingredient as the Xgeva, just a much lower dose... maybe your doc would consider that?
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Janet, yes, I understand that that is the normal dose. However, the manufacturer recommends 14 days on and 7 days off at that dosage. Sloan-Kettering did a study which indicated that the second 7 days did no good for cancer control and made the side effects considerably worse. My MO would have started me at the 14 / 7 but was pleased to see that doctor Sanford recommended 7/7. Thus, we're going with that dosage schedule.
Sandibeach, yes, Dr Rachael Sanford at Sloan-Kettering was involved. My own MO had suggested that I go next with AA but said that he'd be very interested to hear what Sloan-Kettering advised. Dr Sanford suggested that I could go one of three ways: xeloda, AA, or Verzenio. She leaned toward the xeloda. She suggested that after 2 - 3 months I do a scan to check effectiveness. she also suggested that I remain on this regimen for at least six months, unless the side effects were such that I could not stand it. She noted that after six months, if the side effects made me inclined to try something different, I could then go either with the AA or with the Verzenio. each of us has such different details in our situations, and something in mine may have pushed her toward xeloda. I have extensive bone Mets throughout both skeleton and bone marrow.
I know that Grannax is really struggling with AA.
I had the distinct impression that it was rather a toss-up. My MO, who is head of a Cancer institute in Richmond Virginia, commented that if he asked 60 oncs whether they'd go with AA or Xeloda under my circumstances, he'd expect 20 to suggest Xeloda, 20 the AA, and the other 22 say they didn't have a preference. He didn't mention the verzenio option, and I didn't think to ask why not.
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Ironic that those two rogue MO's would sneak into the undecided group. I know, I know. Probably a typo. Just having fun.
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I get Faslodex shots (2 - 250 ml each) one in each cheek every 4 weeks. Anyone get the same dosage but longer between shots. I feel tethered to the doctor and cannot be gone longer than 4 weeks. Also, the site where I get shots itches LIKE CRAZY for about two days. The nurses put band aids on the site. Before I take the band aids off I soak the site with a warm water rag but that doesn't seem to help. I have also put different salves on the site after taking the band aids off but without any help. Small complaint compared to others but a pain.
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Wandering, maybe you are allergic to the band aids. My onc nurse puts them on my port after access and I have started getting itching there soon after. Maybe gauze with tape instead? Or maybe it's just the shots.
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Hi. Two or possibly three mos ago I had my first tumor marker blood test. The reading came out as just 19 and the nurse said she didn't think these markers would be good for my cancer. I have a tumor in my breast, mets in lungs and in bones. Been on Ful/Ibrance little over three mos. So anyway, last week, they did do another marker test, it was 50. Could this be a tumor flare? Although, the numbers aren't very high for my amount of cancer. Trying to think positive about results, but I realize that more than likely it means nothing. Thanks
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Janet, tee-hee....that was supposed to have said "20 to"...but I must say, I much prefer the rogue MOs.
Wandering, are you doing the Claratin (or the generic Loratadin) one tablet each day for 2 days before shot, one day of, and one daily for 2 days after? That has helped so many with general issues with Faslodex. Maybe it would help with itching, too??
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Wandering, I am on the same dosage & schedule as you. I too think you may be having a reaction to the bandaid. I take them off within half an hour as I get itchy from some of the adhesives. Maybe get gauze & paper tape like jaycee suggests.
Snooky, I had my TM's go up for the first 3 months on Ibrance. My MO suggests that it is the cancer cells sloughing off into our blood causing an increase for a short period of time.
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Thanks GG27 for answering. That makes me feel better (Hugs)
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I know how freaked out I was when mine went up right after starting.
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well, it's not really treating me right. The Ful/Ib has shrunk my primary tumor and has shrunk my auxillary node but, I have more lung nodules and possibly more bone mets. I'm just now in my 4th mo. and most people on these boards are saying it takes longer. But my Onc wants to change out to Zeloda after another biopsy (next week) to check and see if I'm still E+ P+ and Ned-. The worse thing about all of this is not knowing and waiting. You've been going through this a long time honey, (I'm a lot older than you) I really feel for you and all the young women on these boards. I wonder where you get the strength. God Bless
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Joyner that sounds like a lot of pills. I just posted on AA. Yes still struggling but better today. PTL
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Thanks ladies for the replies about the itching. I think I am going to bring some small round band aids on my next doctor visit and see if they stop the itching. If they do, then I can determine the "doctor" band aids are the culprits. They are big so if it's the adhesive then my band aids will minimize the problem since they are small. It could just be the Faslodex but I don't see lots of comments about that.
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Wandering; I am allergic to latex and I think it's pretty common. Just tell them you are too next time and they will give you different bandages and you can check it out. During my operations I am in a totally latex free room. Trust me itching and within a day or so horrible blisters then it just gets worse. Give it a try, nothing to lose. Take care.
Cathy
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Snooky, I would really push to wait on changing treatment. My MO, she really is terrific, is loathe to change too quickly, she wants to wring every single treatment out to make sure I don't run out of lines. She told me 3-6 months before you start to see improvements in scans. I understand that they want to do a biopsy to make sure your tumour hasn't changed status, but otherwise, I would hold the course til next scans in another 3 months. Just my humble opinion, for what that's worth!
I would love to tell you that all this waiting & wondering gets easier, but it doesn't. We hold our breathe after every scan til the next one. But in the meantime, we have as much fun as we can stand. try not to worry too much, hugs to you.
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Joyner - Thanks for sharing your xeloda plan I hope it is super easy on you at the 7/7 dosage lol, Jaycee, I caught that 22, also. Grannax - glad to see you are doing a bit better!
So Faslodex and band aids - I have told them to just stop putting the bandaids on entirely. I don’t bleed that much after it and I would prefer just wash my blood stained underpants.
I get itchy from them for sure but a couple months ago, I ripped my skin right off (in the shape of the band aid) when removing it in one side and MAN, that HURT!! It took more than 2 weeks to heal, I was all worried about it getting infected, it hurt when I showered, just a huge annoying mess! So no more band aids for me!
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JoynerL- watching your response. I don't know if anyone else is doing the 7/7 protocol or not. I didn't ask my MO what her protocol was.
I haven't decided on what treatment to do- looking for some good stories about Affinitor - I may post a question about that.
I did keep my hair appointment for cut and color -but, progression always makes me feel a little less worthy for some reason to use resources.
Wandering- I had two itchy, purple rash/lump reactions in my 20 or so Faslodex shots. Interesting that it was the same nurse each time, never happened with any of the other nurses. The first time she pushed the meds pretty hard and fast, the second time months later she didn't. in trying to figure out the cause, the head nurse told me there is a lock or something in the needle to prevent leakage as they withdraw. I put it down to technique with that nurse. I massage the area right after each shot and do some stair climbing to use the muscles to help it distribute, I also take Zyrtec daily for allergies. Hope it never happens again to you.
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As I’ve read the last number of posts I am happy there is discussion of a variety of options when there is progression - I know still terrifying and not a cure. At my last MO appointment she mentioned a new drug that will likely get approval this year that looks promising. She heard about it at the bc conference in San Antonio. I did not memorize the name, I could ask again. I guess we keep hoping there will continue to be a new one to keep us stable. Right now I’ve been stable on Ibrance/letrozole for eighteen months with news scans the beginning of February. I don’t know what to think of the TM - mine went down considerably right away with treatment and then remained stable but then started to go up even though the last scan was good and even showed shrinkage of lung mets. I was doing the TM every month but my MO and I decided to just do them every three months, causes too much anxiety if it goes up and she doesn’t change treatment based on just the TM. I try not to worry about it too much. Also if I’m feeling good I think the meds must be working. Wishing you all good scans, news, hugs and love.0
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Nkb, yes, a lot of people are on the 7/7, but I see that on the "All About Xeloda" string.
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Snooky, so sorry to hear you're stuck on that 'do not pass go' square. But I'm glad to hear your MO is retesting your tumor. A previous Ibrance-dancer named Amarantha was so disappointed that this treatment wasn't working. Then discovered her cancer had changed. She's on a different treatment and doing well.
Joyner and Grannax, I'll be very interested to hear how your new treatments go and how you're doing.
Nkb, I'm constantly doing math in my head. Does it make sense to make such-and-such purchase? Will I be around to get my money's worth? Should my DH take early social security? I can hear Pat's reminder that none of has an expiration date, but at heart I'm a frugal Celt! Good on you for keeping that hair appointment.
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Nkb,
Here's how I see the hair thing...I was considering going to coloring my own in the past 6 months...my mom always did hers to save money. Husband and I are having to look for ways to conserve money since he retired to help me and my income is reducing slowly but surely.
Then one day, I was in a really practical upbeat mindset and realized this: I am going to have this hair that I can cut and color only so much longer. Once I lose it, from inevitable chemo, I won't have the opportunity to do anything with it. I WILL CONTINUE CUTTING AND COLORING AS LONG AS I CAN AND ENJOY EVERY MOMENT OF IT
I have to look elsewhere to conserve money. Even a "bad hair day" with my own hair is a good day.
Each of us has to come to terms with these things as we continue on our journey. Hoping another perspective helps. If nothing else but to laugh at it.
Gumdoctor
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Gumdoctor, just a thought - my mom used to go to cosmetology schools and had her hair done by students. She said they’re always learning the newest stuff. She was a beautician back in the 60’s and 70’s when the beauty shops were filled with smoke (from smokers) and chemicals from all the perms and other treatments. When I smell a perm it takes me back to my childhood. Blech
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Jaylea, Yes, I've read about Amarantha's journey. Gosh, I love that women her spirit and zest for life is contagious. I do see the need for another biopsy. Just for the last few weeks stress of tests, stress of changing ONC and of not knowing anything has really gotten to me. You see I don't do stress well. It's been the bain of my existance. Due to some deep early childhood trauma, I've had clinical depression, panic attacks and OCD for over 40 yrs. I do best with a nice homebodish peaceful existance. Huh, try having that with cancer.
Anyway, all the tools that I've learned in the past to just cope with day to day life are definitely helping with this.
Thanks for your reply.
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grannax- i’m glad that you are feeling a little better. i hope the side effects wear off before your debut and so you are able to enjoy new york.
i am currently in the hospital with blood clots in all places my bottom. while in the emergency room the doctor said one but as i listen to doctors and nurses talk it appears that i have a couple of them. they have me on pertussis and they are trying to figure out the right blood thinner for me. imagine i came in thinking it was just a strained muscle! you know being at home with little to no symptoms i’m fine emotionally but now with the blood clots and being in the hospital all the emotions are running crazy.
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Oh Holmes13, I am so sorry to hear about blood clots and being in the hospital. A stressful time for sure, we will all be pulling for you and thinking about you. Wishing you a speedy recovery. Please keep us updated.
Go get your hair done ladies - it’s worth it! I have straight hair and definitely seemed to be thinning, finding hair everywhere, so I cut it to chin length ( took about 3-4 inches off) and it does look and feel better. Only bummer is it’s now to short to pull back in a ponytail. I also do partial highlights which is close to natural hair color so I only need it a few times per year. Cracked me up how many people at the cancer center noticed my hair cut. If it makes you feel better go do it
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Holmes - Will be thinking of you and praying you get to leave very soon with an all-clear on those clots.
Gumdoctor
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