Ibrance (Palbociclib)
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I guess my puny tumor marker numbers don't mean anything. I still get all excited when they drop two points. And I don't have any uptake numbers because I've never had any uptake. Boring but wonderful.
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Nkb, I have chosen not to have tumor markers done. From the time I was diagnosed in 1994, I've had many friends who lived their lives on roller coasters because of tumor marker tests. I just didn't (and don't) want to live with that anxiety. I sort of do this the Pat way!
[And thanks!]
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jaycee, no uptake....Huge!! We'll all take that kind of boring!
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Husband My tumour marker was over 900 when I started on Palbo. I had been on Letrozole for two months before i started Palbo at the beginning of February 2017. My tumour marker tumbled quickly down by around 100 or more every month until about May, by which time it was 390. I was very excited and decided my extensive bone mets would have regressed completely by the end of the year. I was naive and in denial, I admit but what I didn't expect was that in June the tumour marker went up to 520 and, since then it's been between 470 and 500 for the last four blood tests. I live in Australia and can only speak of TMs that, I think, are the same as the US but it gives you an idea. I don't get anxious about what my TM will be at every blood test otherwise I'd be living life around a blood test. What will be will be and I trust my oncologist.
I have bone mets in every bone from femur to skull, including the entire spine which is covered in tumours, every rib has a number of tumours, my sternum is covered in them, my bone scan shows nothing but black tumour spots in its entirety and there are many tumours in my skull, with some in the orbital bone of my left eye.
My oncologist tells me that my bone scan and CT scan in July shows stable disease and he seems to be happy with me. He says not to worry too much about TMs, that we only worry if it keeps going up and stays up. Scans seem to be the most accurate way of finding progression.
Because my neutropenia is now Grade 4 my dose of Palbo has been lowered to the 100mgm dose.
Hi all, I'll come back and read all your posts about this later.....
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Husband, my marker went up for whole 16 months of Ibrance/Faslodex, yet during that time 2 scans showed continued improvement. Prior to that my marker was always very predictive of what was going on. I have read many others say similar so I think there's something about Ibrance that is different when it comes to that blood test.
Hobbes, karma will get that woman. I think you should sew up a voodoo doll of her. Show it to her and say "look what I did while wasting your resources!"
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Nonahope I hope all is well with you and the anaemia isn't too bad. Mine hovers around 94 to 98 at each blood test. When it reached 90 one time I was told blood transfusions were just around the corner but my body behaved itself and got me out of that by hopping up a notch. I have a B12 shot every fortnight. Ouch, they hurt, but they do make me feel a little bit stronger.
Thinking of you and everyone else and sharing hugs all around
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Patgmc- You may be on to something with the no TMs done. My MO was hoping that the TMs would correlate with the Scans and I could have fewer scans. Time will tell. Maybe the liquid biopsies some day will be more useful.
Jaycee- I agree with you that the no uptake is the best news.
Leapfrog- While my ANC is not robust even on the 100 mg- I haven't gotten Stage 4 neutropenia. I still need 2 weeks off to get to ANC of 1.0 to restart the next dose. My MO is fine with that. Hope your bone mets start responding to meds soon.
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I'm with Pat on tumor markers, at diagnosis my TMs were low, but I have no idea what they are today. I know they monitor them, but I never ask, and they never tell. I figure its their job to worry about the numbers, they can tell me when they want me to worry.
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Nkb I've also always needed two weeks off to get to an ANC of 1.0 to restart but my ANC used to be slightly over 0.5 until my last cycle, which kept me in Grade 3 Neutropenia. It was when I dropped go 0.46 after the first week's break that I was classed as Grade 4. That's the protocol for the trial I'm on. After the second week I was 1.09. It will be interesting to see what my ANC is on the 17th now that I'm on the 100mgm dose instead of the 125mgm. I suspect there won't be a lot of difference, seeing I started this cycle so low.
I like to think that my bone mets are dying and that the jump up in the TM is the cells dying off. Apparently that can happen.
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Leapfrog- I suspect you are right. I started cycle 3 (100mg) after two weeks off at 1.0. After 3weeks on and 1 week off I was .9. So I thought after another week off I will be really great- no, I was 1.09. Yeah- that is the protocol on the palbo site as well re grade 4 neutropenia. I feel better on 100 mg- hope you will also.
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Hobbes, omg that woman!! Apologies in advance but this is definitely a situation where I would have no problem telling to her 'go f#ck yourself! How could someone say something so cruel. Wait until see finds herself or a family member in need of life saving drugs. Make sure you don't sit near her next time!
Grannax- i got a mosquito bite on my forehead in july which turned into cellulitis and started spreading towards my eyes. Ended up in hospital but the antibiotics worked very fast. Cleared in a couple of days. Finished the course and it didn't interrupt my ibrance. Hope all goes well and it clears quickly,
Nonahope- great result!! Jaycee also great news! Toasting you both.
Pat Mcg. What a spectacular result! Especially with widespread bone mets. Gives us all hope. Also you were ned for 4 years. Remarkable response. You give me Hope and I love your attitude!
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Nkb, my tumor markers don't provide any diagnostic information at all. They're always low, below 20, regardless of the situation. I had wished that they "worked", but maybe that's not so bad after all....one less thing to cause anxiety! I just wait for scans now.
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Good morning...
I went yesterday for my blood work to check my anemia....5 vials??? I hope it's nothing that B-12 can't fix. I've been on the anemic side since my first bout with BC and chemo in 2010. I don't really have any symptoms that I'm aware of...this has me a bit worried.
For those of you on X-Geva, what are your side effects? My onco hopes to start me on it next month, once he gets approval from insurance. Apparently, it is a very costly drug? He didn't think that would be a problem, since I had such a problem with Zometa.
I asked my onco about tumor markers. He claims they are not reliable so doesn't check them. At least, he hasn't so far.
Have a good weekend, ladies.
Hope
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The only side effect I've had with the Xgeva itself (3 months, so far) is a little drowsiness for the afternoon. I get my shots midday on a Tuesday, so I take Claritin on Sunday, Monday, and Tuesday mornings, then Wednesday and Thursday mornings as well.
Advice: make sure the vial isn't cold. My first shot hurt soooooooo badly, because the nurse used it right out of the fridge. It's such a tiny vial, it only takes ten minutes to come to room temperature.
As for cost, my insurance company pays $4800 per injection.
Hope you get your approval with no problems, and the Xgeva works for you!!
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Hope, I have no SE with XGEVA at all. I've been on it every month for 5 years. The first one I had made me extremely tired that night and the next day but after that I guess my body got used to it. You might want to go the Amgen website for the copay card. My hosp charges $8000+ for the shot and my copay is 10 percent. They pay for all but $25 of my cost and since it's the first bill I get every year they also pay my $1000 copay! After they pay for 2 of them my out of pocket is met for the year so it's not too much of a hassle.
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Lillymillie. Did you have fever with your cellulitis? I went to my MO yesterday. She confirmed that it is cellulitis. But, because I only have 99.2 temp she didn't put me in the hospital. The plan is to stay on dosepack of prednisone and on cephalexin. If it gets any worse, spreads or I have fever of 100.5 I am to go to ER. My face is red all around my eye, forehead, cheeks and lots of swelling. Now I've noticed some redness on my neck. I'm not sure what to do.
The good news is that she's giving me a break from Ibrance and femoral. Yay.
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Nonahope-I've never had any side effects from Xgeva-hope that you won't either. For me it's just a quick shot and then I'm on my way.
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Thanks to all of your input about X-Geva. My next question is, what does the Claritin do? I've never taken any kind of allergy medication...isn't that what Claritin is? I like hearing "no side effects"...but, not so much the cost of this drug....WOW! If my insurance doesn't cover it, then there will have to be another plan. I had to have Neulasta injections after my chemo with my first bout of BC and those $5,000 injections were covered. I hope and pray X-Geva will be the same.
Grannax...glad they found out that it was cellulitis and hope the treatment works quickly!!
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Grannax, I hope this won't happen to you but wanted to warn you that high doses of steroids can make you feel really depressed. That feeling goes away as quickly as it comes but it's helpful to know what's happening. I pray you're back to normal soon.
nonahope, my fatigue increases for two days after the XGeva shot. The medicine plus the clinic's charge for delivery add up to $5500. I have Medicare and a supplement and it is covered at 100%. I remember my onc saying the fact that I'd had a negative reaction to a bisphosphonate in the past would make it easier to get it approved. I've been getting it for a year and have never heard that there's a problem. I get the shot in my stomach fat and, after having 9 in the same spot, became numb there. I have switched to the other side and will now go back and forth. It's not one of those shots that takes a long time to inject. Good luck!
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Hope,
I am at a loss to understand how people know what drug is causing what side effect when we take multiple drugs. I know I can't.
My Xgeva shots show up on my Blue Cross statement for $6500. All covered. In my experience, doctors rarely order something that will not be covered. They know what insurance you have and what they cover. They may have to jump through a few hoops if your insurance balks but they get it done. At least mine do. Unfortunately, my gyn who jumped through about ten hoops to get the last drug I needed is retiring. I just got the letter. I am crushed. I've been with her for over twenty years and she is the best. One of those doctors who acts like a regular person.
I agree. Get the Xgeva in the belly. Quick and painless. Warm it up yourself. My nurse just hands it to me and says, "you know what to do."
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Hope, someone on this site months ago suggested the Claratin two days before both Faslodex and Xgeva, on the day of the shot, and for the two days following, and it's really helped me. I had some pain with the first Faslodex shots but really haven't since using the Claratin plan. I know that some take it daily, and I have chosen to do that (I don't have allergies, either). Don't know what's working, but I don't have a hard time with either shot. You really need to have the Xgeva warmed, as others have said. My insurance pays the entire cost for the Xgeva and Faslodex. The Ibrance is costing me about $10K/year.
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Nkb my side effects have been less on the 100mgm dose of Palbo. I had more energy for the first two weeks most definitely and fewer problems with mouth ulcers, cold sores and sore gums. I finish this 3 week cycle on Tuesday and my mouth issues are only just giving me real problems now. My onc recommended Gelclair for it and it does help....tip for anyone with gum problems!
Can someone tell me what Xgeva is? Maybe it has a different name in Australia. Is it for strengthening bones
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Leapfrog, yes, Xgeva is for strengthening bones.
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Leapfrog- Xgeva is denosumab (120 mg) the other brand name for it is Prolia (60 mg used for osteoporosis usually) this drug is used for bone mets or severe hypercalcemia- it reduces bone resorption and bone turnover and inhibiting tumor growth (RANKL inhibitor). The other drug often used in bone mets often is Zometa (Zoledronic acid)
I had no mouth sores on the 100 mg. On the 125 mg I had severe pain with swallowing- none of that on the 100 mg.
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Here is my cancer marker graph. I took Ibrance from January 2016 through September 2017 when new lesions were found in my liver.
I had significant reduction in tumor load in April 2016. I had another significant drop in the spring of 2017 which got me almost to NED. Then I had two new lesions in September 2017. I believe that CA 15-3 27.29 were mostly a negative indicator, rising when tumors were dying. However, as NKB says, the studies I have read show that the these markers are not predictive of progression, or lack of progression when they are below 50. This was true in my case. Certainly we need to ignore changes of +/- 25%.
Interestingly, none of my doctors, alternative or otherwise, wanted to monitor CEA. I checked the box for CEA myself after I got the signed order. (There are proactive patients and there are bad patients, not sure where I fall).
In my case, Ibrance took care of the original cancer almost completely but it appears that the cancer has evolved around the treatment.
>Z<
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Ha! That’s funny Z. I was also “proactive” at one point, ticking the box for 15-3. My oncologist has not been monitoring this but, interestingly, referred to it at one point.
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Z- Will be interesting to see if your CEA levels drop as a result of your NK therapy in Japan- also, will they be doing any scans to check for improvement, or is the time too short?
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Z I am definitely going to remember that idea! My onc won't check anything I ask, even vit d, except one time. I was experimenting with how much I should take to stay at a certain level, but after one test he said they were good so I don't need another. I was taking 10000/day so I wanted to do a little keeping track and maybe reduce or increase. He is a piece of work sometimes.
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Sadiesservant that's funny that he didn't order it but refered to the results. My onc is scatter brained and depends on his nurse to help with computer stuff and remind him of things, so he would never catch on if I did that.
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My PCP decided I needed to go to the ER, so here I am in the hospital. It feels really strange to be here with no pain and no fever. ER doc said it might only be a day or two. I'm on Rocephin IV. My face still looks terrible. Very red! I hope the redness all goes away soon. I'm also off of the steroids.
This is the weirdest case of cellulitis I've ever heard of. I'd rather be home with my cat.😻
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