Ibrance (Palbociclib)
Comments
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Joy, I'm a whizz with spreadsheets so if everyone thinks it's a good plan, I'd be glad to do one. What does everyone think? I'm still waiting for what's happening with my Ibrance. So far MO's office have given me samples. I have a medicare advantage plan so as long as my foundation comes through for $5000, that would be enough to take me in and out of the donut hole.
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Well here is the irony, my Ibrance has been "free" via my Cigna PPO. I now have an oversupply of Ibrance including a bottle @125mg that I will never use, along with a bonus @100mg. Is there a legal method for donating it to your clinic, then your Dr could give it to you. Thoughts? None of us should be without meds. So much $.
sigh
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Did you have tumor marker bloodwork prior to your first scans? My onc, for some reason, did them this week after one round of Ibrance and they were up from 90 to 150. She said that it takes Ibrance up to 3 months to start working so I can't decide if I should be concerned about that jump or not!
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I've just finished round 2 of ibrance. The great news is that the main tumor has shrunk over 3 cm and is continuing to shrink. The others are not measurable without a Ct scan and since we have one to watch we're currently opting out of it. My biggest concern is that my immune system is down in all areas. The neutrophils are .8, lymphoites are low and white blood counts down as well. I'm on weekly blood work and last Friday's results dropped. I just started my week off and go for blood work again Friday and see the doctor the following Friday. I'm taking beta glucan, vitamin d and vitamin c. I'm very underweight as well because of priortreatment and difficultyeating. What are other things that you do to raise your immune system? I really don't want to have to stop it since it's working. Any advice appreciated.
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After one round of Ibrance my CA blood work is up from 90 to 150. Onc says it's too early too worry about it not working. So why did she do the blood work? Makes me worry it's not working. Did you have blood work before 3 month scans?
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Nana. I understand the recommendation is to do blood tests 2 weeks after starting Ibrance. This is to make sure you are not reacting adversely to it. I had bloods checked at 2 weeks, then 5 weeks after that. My WBC went down from around 7-8 to 3.0 then 2.8. I think its below 1 that they worry.
Cjctoo: I'm not sure about the level of Neutrophils, mine are 1.5 down form being around 5-6 normally.
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Scwilly, thank you. That's where the blood work confuses me. White blood counts down to 2.3 and their range shows 3.6 as the low end so I'm glad to know the number to watch for. The neutrophil low end shows 1.8 and I'm at .8. I obviously need to ask more questions next visit
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I had to get another grant because the one I had ended. Have been on Ibrance 1 year. The compound pharmacy rep was able to get assistance with Patient Advocate Foundation called Co-Pay Relief in Hampton, VA. Hope this helps.0
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I have Amerihealh insurance and my husband has Keystone Health Plan East. We both have Express Scripts for drug coverage. My Ibrance costs me $25 a month through Acredo specialty pharmacy.
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Joyner and Cive....I'm in for the spread sheet.
Lynnwood, I have Accredo speciality pharmacy as well and Ibrance costs me $70.53 a month with Pfizer co-pay of 10.00. I asked Accredo where they came up with $70.53 and no one can answer that so far.
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I have Kaiser Permanente, a managed care HMO. They have their own pharmacies. Costs me $150 ( for specialised drugs my copay is 30%,up to max of $150) I'm hoping to get back $140 from Pfizer scheme which lasts until end iod 2017. I'm just submitting a claim form from (Pfizer Copay One - Ibrance so cross-fingers it works.
Sarah
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As we personally celebrate the game changing miracle of our Ibrance, it's good to learn and be encouraged by what's happening in labs right now:
This is a message from one of my BC survivor friends who is a researcher at St. Jude Children's Research Hospital. While I don't usually think of getting rid of this cancer in violent terms, I have to admit I like the sound of a "radiolabeled-immunological warhead":
"Pat, you would have loved the seminar I attended today at St. Jude. Young researcher from Hunt College in NY that works with the doctors at Sloan-Kettering. He has engineered antibodies that "dock" in the most advantageous binding regions of tumors to allow binding with an engineered radiolabeled-immunological warhead that can be administered several days after the antibody so there is optimum binding at the tumor site and less "free" radiolabeled material to migrate to typical areas like the kidney or liver. The PET scans using this technique in mice for colorectal and pancreatic tumors was phenomenal and he has mice 240+ days old with no re-occurence. He is partnering with another researcher now to test these tools in larger mammals which would better represent human systems. One of the best talks I've attended here and I was on the edge of my seat the entire hour. Progress is being made!"
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Thank you Pat, as always, for your nuggets of relevant research. That warhead metaphor is a bit much. We can borrow some passive aggressive metaphores from the Yogic tradition ... the antibodies are tiny little particles of golden light that bind with the the cancer and transform it from darkness into pure love.
Whatever is going on, lets hope it works in humans.
>Z<
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nana and cdctoo,
I have had tumor markers drawn every 4 wks since starting Ibrance/Femara. Tumor markers are variable from person to person. I think most MOs look for how they trend. The more data you have the better; mine have also flared up and then gone down. They can also rise in the beginning when deteriorating tumors dump them into the blood stream.
As far as your WBC counts, they will be lowest just after you finish the 3 wks of Ibrance. The general rule is that Ibrance will not be restarted until you have an ANC(absolute neutrophil count) of 1.0. You may just take a week off until they rebound. Most of us have had to do this. This is the expected result of taking the Ibrance. Generally infection due to low WBC while taking Ibrance doesn't seem to be a problem.
Hang in there, you will get the rhythm of this down. It's hard at first to know what to expect. Cheers! MJH
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nana and cdctoo,
I have had tumor markers drawn every 4 wks since starting Ibrance/Femara. Tumor markers are variable from person to person. I think most MOs look for how they trend. The more data you have the better; mine have also flared up and then gone down. They can also rise in the beginning when deteriorating tumors dump them into the blood stream.
As far as your WBC counts, they will be lowest just after you finish the 3 wks of Ibrance. The general rule is that Ibrance will not be restarted until you have an ANC(absolute neutrophil count) of 1.0. You may just take a week off until they rebound. Most of us have had to do this. This is the expected result of taking the Ibrance. Generally infection due to low WBC while taking Ibrance doesn't seem to be a problem.
Hang in there, you will get the rhythm of this down. It's hard at first to know what to expect. Cheers! MJH
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I like the idea of a spread sheet but I think it needs to be divided between those of us on Medicare and those with employer based insurance and also those who are self insured or using the affordable health care act.
I'm on Medicare with a BC/BS supplement and a part D drug insurance plan from Silverscript. Last year, the speciality pharmacy connected to my drug plan found a charitable grant from a foundation for me and I didn't pay anything for it. The grant expired after 12 months and there was no more money there. So then, my pharmacy helped me apply for the Pfizer patient assistance plan and once again the Ibrance is free until the end of this year assuming I'm still on it.
. I'm hoping it pays for many more years!! We want to stay on this train for a long time.Faith
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[Repeating some things already posted in bone met thread, but I do have a specific question for this group]
I got my PET scan report back, already. The result are good. If this report is to be believed, things have improved since December. This is strange since I was stable from July 2016 to December 2016. I improved in the last 4 months? Either the changes I made to my complementary regime in January are working, or scans are imprecise, or Ibrance can take a year to kick in and the original response I got last spring was from letrozol. I am willing to believe any of these reasons.
I have no hyper-metabolic lesions at all, anywhere, except my sternum. All the weird lymph nodes that have been lighting up and disappearing in these reports have resolved, suggesting they were inflammation not cancer. (Someone somewhere was asking whether inflammation in lymph shows up in PET scans. It does.)
There is no hypermetabolic activity in my breasts, armpit lymph nodes or live. My liver had 7 ~1cm lesions nodes originally. Radiologist believed he saw some un measurable residual mets in December. Everything in my abdomen and my pelvis looked normal to this radiologist. So, yay.
The only thing that got his attention was the sternum:
Sclerotic focus in the sternum, maximal SUV 2.9 (2.0 on Dec 15, 2016 and 2.5 on Apr 06, 2016).
I posted a question about this on the bone met forum, but for the moment I am going to ignore the radiologist and call that sternum lesion either stable or an artifact of the PET scan. My understanding is that PET scans are not reliable at evaluating bones at the surface. I have half a mind to have that bugger in my sternum biopsied just to know, once and for all, what it is.
I'll close with the funny part:
Development of a small focus of fat infiltration and mild hypermetabolism in the subdermal fat of the right buttock. An inflammatory process is favored. Has the patient received injections in this location?
Has the patient recieved injections in this location? Like duh!
Apparently my ovarian suppression shots to my butt, i think it is zoladex, is causing inflammation. Anyone else get this? If it is not the shots, then I have cancer in my butt fat, but that doesn't happen. Again if anyone wants proof that inflammation presents as hypermetabolic activity in PET scans, there you have it.
So, 16 months into this fiasco and doing well. Thank you all.
>Z<
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Great news, Z! Congratulations! So funny about the butt fat thing....
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Cive, I would love for you to do a spreadsheet of costs. Faith's idea about dividing it up seems a good one.
I'm on Medicare with an Anthem supplement and a drug insurance plan from Silverscript.
My Ibrance costs $3048 (I think) for the first month and then $558/month thereafter for the remainder of the year. Then it goes back up to $3048 for the first month of the next year and again drops to $558/month, and so on. Unless the price changes, I guess. My understanding is that the "approved" cost is $11,456/month (for 21 tablets!).
It would be nice to understand why some of us pay such varying prices. I saw another contributor who seemed to have insurance similar to mine who seemed to be paying a different price.
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I know doctors agree to take a certain payment when they sign on with different insurance companies. They can bill for whatever they want but are contracted to only receive what they agreed to. Maybe phamacys are the same way.
On a positive note my platelets were 316 yesterday 😊That's the highest they have ever been
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On to the spreadsheet. My plan is to show cost and use the alphabet to denote a key that will apply to the different insurance plans.
Z, the sternum lights up because of that ice cream sandwich you ate (remember you admitted it). All of my bone mets are sclerotic and just about everywhere on my skeleton and I just don't worry about them much. Sclerotic means bone building, so it's unlikely to cause a fracture. I believe my MO is changing my Ageva shots to every three months rather than the every other month I'm on now.
Funny about the butt thing, can you imagine after two years of Faslodex what kind of lumpy butt shots on CT or PET.
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go Diana go!! Keep on the road to feeling great. You so deserve it. Thinking of you all always ! ~M~
I just checked my information for my ibrance and it costs $11,384.00 for 21 capsules in a 28 blister pack which obviously the last 7 are empty. My Medicare picks up the bulk and then Cigna secondary picks up the rest. I haven't paid a dime for the ibrance and I get it from the diplomat speciality pharmacy in Michigan. They deliver It to my house ups. I have to be approved each year and my doctor has to request authorization, each year I have to renew. I have been on the ibrance for six months now and ready to scan. Holding breath all week I am sure. I noticed Z got her results darn fast usually I have to wait a week for mine. That drives me crazy! Have a good day everyone and a pain free weekend ! ~M ~
DH caught a mean cold this week while he was at our other house (that is where he works during the week and then travels home the weekends to be with me and the kids ) and I don't know if he is going to come home this week, because he doesn't want me to get sick. My blood work is Wednesday and I don't want to have it be bad from getting another cold! Also getting that awful XGeva shot which I hate. Gives me a shitty head ache and body aches for two days. I'm thinking 20 Claritin and Aleve coming my way. Ugh!! It's always something to either scan or remove from my body like blood, a breast, throw in some lymph nodes. No big deal oh and while your at it take my tumor from my liver please oh and my ovaries. Clearly they wont be needed anymore.
Cancer is maddening. You ladies are strong you give me hope. Thank you! ~M ~
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Micmel, I need to figure out the difference between my Anthem and your Cigna coverage. I'm getting clobbered with the $3048 (one time) and 11 payments of $558. Free would be GREAT! My Ibrance comes in a bottle rather than in a blister pack, for some reason.
Does Claritin not help protect you from the Xgeva? That's too bad. Yuck.
My scans (first) are in two weeks. Nervous.
Cive, all of my bone mets (only mets so far) are sclerotic and scattered throughout my skeleton, too. Just started my 3rd course of Ibrance. Were you able to tell much (or any) change on your first set of scans? My onc said that because of the "sclerotic foci", it may be hard to read a difference from the first set of scans whenn I was diagnosed.
Diana, well done!!
Hugs to all...
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Z- Forty nine hallelujahs for your great scan!!!
Dianarose-LOVING that platelet number!!!
MJH
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Z, wonderful news on your scan results. Let's keep these going for a long time. What is it about butts? While my scan was also good, there was an area in the rectum that lit up. I quote
"There is increased FDG metabolism in the region of the rectum which may be physiologic. Maximum SUV of 4.3. Clinical correlation is recommended."
So my MO says this cancer doesn't go to the rectum. We both think this is due to my ongoing problem with constipation and straining causing hemorrhoids." Sorry for TMI. I just think it's really funny that we both have a problem with our butts.
I didn't know how important it was to remain very quiet and still for the hour before the scan while the contrast is moving through your system. The tech told me to not even talk on the phone because using those muscles and throat will cause things to light up. Who knew? So I guess passing gas is a no no. LOL !!
So folks, that's your laugh for the day.
Faith
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Holy cow on holding still before the scans....that's the sort of stuff that you learn on this site that you might NOT be told at the facility. I will be frozen into position!!
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Joyner, you don't have to be exactly frozen, just be still as much as possible. I was allowed to use the bathroom which is good, since they want you to drink so much water.
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Thanks so much, Faith...great advice.
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joy ~ it does help a lot yes, but I just hate those shots. Two days after and I still seem to feel foggy. I hate going to the infusion center, too many smells i absolutely hate! It's like a haunted place I never wanted to go. But was forced to! It sounds like everyone's medication costs are all over the place. That doesn't sound too cool to me. It's not like we have choice to take it or not. It's our life line for Christmas sakes. Grrrr. Hugs to all. Hope weekend is good! ~M~
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Zarovka, my MO only orders bone and CT scans so I cannot compare to your PET scans. But there has been an ongoing question whether or not I had mets to T12. My MO says no mets, she suspects healing injury not from cancer. But radiologists have read from "no boney mets" Oct 2016 and Jan 3 2017 to "treated boney mets with healing response" March 2017?. So what will I do? Nothing. Just continue with my Ibrance/Letrozole.
I have taken one month of reduced Ibrance @100mg (due to continued low platelets -under 60K) and my CA 15.3 dropped 12 points to 55. Yup, I will take that. My platelets are still low on week 4 (77K), but no changes will be made to decrease dosage further.
Wonderful news to all those who have shared positive results. Keeps me going when I have bad days.
Dianarose - can I have some of your platelets?
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