Ibrance (Palbociclib)
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nonahope- I had a bone marrow biopsy to diagnose my bone Mets and bone marrow Mets. It was done in the office and took about 20 minutes. I was lying on my stomach and they used local lidocaine. I felt mostly pressure- no pain. They had to push really hard because I had already had several infusions of Zometa over the years to try to prevent bone Mets- so hard bones. I was fine to drive home- DH was with me, but, I drove home easily.
Hope they pay for the xgeva- your Zometa experience sounds scary. It has caused me some mild kidney function issues and so they lowered the dose to 3.5 instead of 4 and my kidneys have recovered somewhat.
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Sandibeach, NEAD?!! Quite a fabulous set of letters to read under your name! Perhaps you should get cards printed to pass out at the cancer center. I can't think of any better Hope-Builder for new acquaintances. Congratulations!
Amarantha, do you not have a port-a-cath? I would stamp my foot and insist on getting one immediately. I have been in that position of getting multiple sticks and it's a horrible, helpless feeling....like a little kid except you can't cry. I kept asking to get the PET scan infusion in my port for years and they told me the liquid was too thick. Last time I had a nurse instead of a phlebotomist (sp?) and I asked again. She said I would have to have a Super-Port to do that. I asked how do you tell if you have a Super-Port and she said it would have a circle of raised bumps. Duh! I said, "Feel this." Yep, it's a Super-Port. One more unnecessary misery eliminated!
This is for those of you who have gained weight on hormone therapy and your doctors are skeptical that the meds caused it. In my experience and that of hundreds of friends, most women do gain weight. I've had a few friends whose doctors lectured them about their weight and told them to, "Push away from the table." I recommended that they fire those doctors and many did! Back when I took an AI with early stage BC, I was as active as I had ever been and watched my diet but still gained weight. I eat much less now while I'm on Ibrance/Arimidex....less active, yes.....but have steadily gained weight. Not a huge amount but I know it's because of the medicine. I'm not going to beat myself up about it. It is what it is.
For those of you who are new, I've decided to think of my pills this way: I take the Ibrance, Arimidex, aspirin, turmeric and Vitamin D together with my evening meal. I picture them grabbing hands and dancing their way through my system. They get the cancer cells to dancing so fast, they get downright dizzy, fall down and get flushed out through my GI tract. (So it's really all about the poop!) I find this much more satisfying than feeling like my body is at war killing bad cells. Call me crazy.
Happy Tuesday, my dancing friends!
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Hi Amarantha. Yes, NEAD means no evidence of active disease! I am the Captain of this ship for now..
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HI Pat, yes I have a port-a-cath, it was put in in 2013 for chemo, but the TEP people are apparently not set up to use it, or they are scared to contaminate it with radioactive material, or else it is not advanced enough a model ? I have asked the TEP people about it before. It was terribly painful and traumatic to put in, horrible horrible, horrible, and I do not want to go through that drama again ever, LOL.
SandiBeach, NEAD, stupefyingly fantastic, especially given where your mets were (kind of everywhere !) you must have been so scared and now feel so relieved. Wow. Thou givest me hope. I absolutely ADORE your visualization for the pills - sounds like the ballet Giselle, the wilis scene, I think I'll try
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The kind of port that can be used for all different things is called a Power Port. I like the super port idea, though. I've had a Power Port since dx. (Port put in July, 2014) I've kept it because the last time they had to use a vein, it was torture. That was the day I had the port put in. A male nurse stabbed me at least ten times and refused to go get someone else. Since every time I walk into MO's office, they draw blood, I kept my port. I want to be cremated with my port. I want to be buried with my port. The first tech to do a Pet scan said, "we only use a port as a last resort." I said, well, you are on your last resort. The tech I have had since then likes my port. He said, "I don't like digging around for a vein." Bad choice of words on his part but I get it. Me either. I got paperwork when my port was put in saying what kind it is. I carry a card in my wallet saying what kind of port it is. I don't leave home without it. Amarantha, you should do some research and find out what kind of port you have. It could be a Power Port, or even a super port.
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NKB...Thanks for the info on the biopsy. I figured if it was being done in the office, it can't be too bad. My sister insists on taking me. So, I told her she could drop me off and I'll call her when I'm ready to be picked up. My oncology facility is near a shopping mall, so she will be a happy camper -- she's a shopaholic!
Amarantha...Sorry your port cannot be used for the scan. When I had my nuclear scan, they injected the radioactive material in my arm -- didn't use my port. But, I have good veins, so it wasn't a problem.
PatG....I like your "dancing pills"....!!
Have a great day, ladies.
Hope
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Janet...My port is a Power Port, too!
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I'm a nut...it IS a Power-Port! I do think I like Super better though!
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My experience with Power Port is not every clinic or hospital are equipped to access power port. Some hospital does have IV specialist to make sure your port access is correct, but maybe only one or two on duty at any time.
The imagine center, where the interventional radiologist put in the second power port for me, does not have personnel to access it for CT. They have to send me to the Cancer Center for port needle access before they can use the power port for CT contrast, and of course needle removal back to the Cancer infusion center. In one ER the nurse asked me what size and gauge of needle to use after acknowledging it is a power port. The nurse eventually put in a one and one-half inch instead of 3/4 inch, and in the hospital, after admitting me, nurse had to change the needle so it won't stick out too much.
So, carry your power port certificate with you is important (I took a picture of the certificate and save in my favorite album), you also have to know what size and gauge of needle to use, just in case the nurse is not well trained.
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Nonahope, sueprisingly my creatinine levels were low (they've always been), maybe a bit more so than usual because of how little I've been eating. I'm relieved on one side, but on the other side I'm left clueless as to what is causing the loss of appetite, how to treat it or when it will go away. It's making my life very difficult, but a lot of other aspects (like the horrible paresthesia I had, which was extending and intensifying) have improved since I got the calcium IV. Unfortunately, that may be contributing to my stomach issues (less than oral calcium but still).
I still feel pretty strongly against using Zometa again, this week has been hell.
Thanks for caring.
Also I'm very happy for the NEAD diagnosis I read of above and all of your success stories. I read every post but can't always answer to all of it, there are so many!
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Ceci...Well, I'm relieved that your creatinine level is OK. Maybe, you are just dehydrated which may be causing your lack of appetite? I'm just guessing, but I was severely dehydrated when I was going through this...let alone the elevated creatinine level. I hope you get some answers soon...you must be miserable.
Hope
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Nonahope I am quite miserable indeed. I was quite dehydrated but got 2 liters (in the morning and at night each, not one after the other) of solution flushed through my veins along with the calcium and potassium, so I shouldn't be dehydrated anymore? Although it is possible that my electrolites are still not high enough. Either way I have no idea whether hypocalcemia can cause loss of appetite (my levels raised but are still nowhere near normal), they'll check my levels again tomorrow and decide if I need more. Other than that maybe it's the medication and I need to wait for it to "wear off" but that could take forever, I can't spend another week without a real meal. I will ask my onco about appetite enhancers (if calcium doesn't fix this) although I've always heard terrible things about them but desperate times require desperate means I guess.
Again thank you.
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Ceci, idk how it is where you are, but the xgeva website has a copay card. If you have private and not govt ins, they wil pay all but $25. My copay is 10 percent, which is $800 so it's been very helpful.
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If I had such an awful reaction I would not do it again. If she is insistent tell her to shove it right up her arse. That is ridiculous.
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Faith...sorry you're feeling down from the result of your scan. I have osteoporosis everywhere. I already had it before I was diagnosed, but then I would have had cancer for about five years before I was diagnosed (Thanks Breastscreen Australia for your total incompetence...not). I don't have any problems arising from my monthly Denosumab injection. I don't know whether that's any help to you, though, except to say I know how worrying it is to know if we don't watch every step we take and take a tumble the outcome won't be a good one.
Ceci...if you really can't tolerate a medication discuss it with your MO. You can't go on like this. There is usually another option or something that helps you. I'm so sorry it's been such a bad week.
Amarantha...gee, I'm so sorry you had so much trouble with your veins. I hate that when they have to try all over the place. It takes a lot to hold your nerve knowing the vein will probably slide away or collapse and they'll have to try again. If only people knew what it's like on the inside of this disease but then again, I try not to tell anyone the horror stories in case they get a diagnosis and then I will have scared them. I'll be holding my breath, waiting for you to let us know the result of your PET scan. I really hope for the best for you, sending a hug and crossing my fingers. Isn't it nice when we get one of those lovely, handsome young men to look after us when we're being prepared for scans or all the other things we have to do? It makes my day to have a chat with someone young, fresh and healthy, especially when they treat me like a precious piece of porcelain. And why shouldn't we enjoy that sort of attention?
Hugs to everyone waiting for results or having a bad spell.... our angels are watching over us
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I'm wondering, is anyone having a bad time with Ibrance side effects ? It is my first treatment along with faslodex and Zometa and it is wiping me out. I am anemic and have no energy and constantly catch viruses and develop infections.
I do have a problem with my immune system and get a monthly infusion of gamma globulin to boost it. But, these illnesses last forever and wipe me out for days at a time
I dropped my dosage to 75 mgs halfway through this past month. But, Oncologist gave me one month off Ibrance with PET/CT scan in a few days. It seems my blood work was still very low.
I guess I'm hoping to hear there is a possibility I'll feel better soon. Any wisdom or advice
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Hi JFV. I am now off Ibrance for a couple of reasons but I did find it wiped me out, particularly at the end of the cycle and the week off. In my case, one of the reasons we stopped was low RBCs and low hemoglobin. It was interesting that my white count a neutrophils would recover between cycles at 100 mg but my red blood cells continued on a steady decline with each cycle. My hemoglobin has also been slow to come back. Even after two months off it’s still not in the normal range.
I still follow this thread as technically it was not a fail but I’m very interested in Abemaciclib. It doesn’t have the same impact on the blood. Unfortunately, not available in Canada yet.
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JFV- I feel less tired on the 100 mg dose-I did get some sort of virus on the plane back from Paris-didn't act like my typical cold since no congestion etc-but, the fatigue along with jet lag and restarting the Ibrance was very discouraging- now that the "virus" and jet lag are better I feel much better. I also find that I have forgotten what viruses did to me before cancer-they made me feel terrible then also! So, I think if you are sick along with the Ibrance it is pretty overwhelming fatigue which makes it hard to feel upbeat.
What is your HGB? Mine was very low when I started treatment and I got a blood transfusion- I am slowly able to make RBCs again, although I am still anemic- it is in a range that is acceptable for what I want to do. My MO said it takes a bit longer for the RBCs to respond (my bone marrow was heavily involved with cancer). I think that there is a wide range in what numbers worry MOs and also if you are "healthy" besides the cancer then your body can manage more low levels as it heals.
There is someone on the boards who takes 75 mg one week on and one off or something also-I always need 2 weeks off so far to get to the base level of ANC to restart.
You also may be better suited to the Abemaciclib than Ibrance-something to discuss with your MO.
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I just posted a bunch of info about co-pay grants on Lita's thread. PAN has money for MBC right now (rare). PAF has money for BC but not MBC. I posted the eligibility criteria for both foundations in case you think you don't qualify. You might. Most people do.
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Well, apparently Ibrance & Faslodex have failed me according to my scans yesterday. I meet with my MO early tomorrow morning to figure out the new plan. I really hate that I have to leave it after only 10 months b/c I really had no side effects to speak of. Hoping the next plan will be as easy as possible.
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nbnotes-I'm sorry to hear that! I hope you can find a drug that works better. I wonder about switching to Ribociclib or Abemaciclib? I know that Animal Crackers switched to a study that is Ribociclib and an oral SERD and so far so good after Ibrance failed. please post what you are switching to.
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nbnotes, I am sorry to hear this. I will be praying that your MO finds a new solution that works.
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As will I, nbnotes. Good luck, and please let us know what you decide to do. Saying a prayer for the best possible decision and options.
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nbnotes, we will anxiously await news on your new treatment and hope to hear how well it works. I'm thankful Ibrance worked for 10 months for you but know you must be anxious about the future. I will keep you in my prayers as you take this next step. Many good things are coming!
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Nancy..so sorry to hear this. Hope things move forward with another option.
Well...Suffice it to say...I wouldn't wish a bone marrow biopsy on anyone. It does hurt...like hell!! Don't anyone tell you any difference. The NP began the procedure. I just love her. She is so nice and caring, but I guess in this circumstance, she can't be too nice. Apparently, my bones are so soft that she couldn't get a good sample. So, had to call in the oncologist to finish the job. He did the job in 20 seconds....20 seconds of hell for me!! But, the deed was done. I told him I'm naming him The Mean Guy!! I have an appointment next Thursday to discuss results.
Hope
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For those in the Boston area (Dana Farber) considering second-line treatment, there is a clinical trial set up for those progressing after Femara/Ibrance,
this trial compares Faslodex alone or with Ibrance and Avelumab (a checkpoint-type) immunotherapy drug/antibody
https://clinicaltrials.gov/ct2/show/NCT03147287
it is interesting that prior failure while on Ibrance does not disqualify for the trial
PS Does not have to be secondline, can be later in sequence
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JFV...this is my ninth cycle on Ibrance with Letrozole. I was dropped from the 125mgm dose to the 100mgm dose the cycle before this one because of extremely low neutrophil counts every cycle. I have to have three weeks on and two weeks off because of low blood levels of everything. To reassure you, I'd say that yes, at first, the side effects were very noticeable but, as time has gone by, I've worked a few things out and have got used to it. I definitely feel very fatigued by the last week of taking Ibrance and during the break but I pick up after a few days back on it. I'm a lot better since I've been on the 100mgm dose but, as I'm on a trial, protocol dictated that my dose couldn't be dropped to the 100mgm dose until my neutrophils were less than .5 at my blood test after a one week break, even though it was only just above that previously. After a second week off it, my neutrophils are still only slightly over 1 so my immune status is always low. To avoid catching viruses and infections I wear a mask when I go for my blood test and to the cancer centre and if I go anywhere else, which I rarely do, on my oncologist's advice. I watch my skin closely and if I get a witlow (I think they're called? those little bits of sharp skin that stick out at the side of your fingernail?) they soon get infected. I've started a new idea lately to deal with that. I have a small, wide necked bottle that used to have vitamins in it and I fill it with Dettol and I hold my fingertip in that twice a day for about a minute. It's magic!
When the fatigue hits, it's like a brick wall and there really is nothing for it but to rest as much as you can to avoid stressing your immune system any further, and stressing your whole body, in my opinion.
For mouth soreness, Gelclair is fantastic. I assume you'd get it in the USA. You can get it in Australia and the UK. It comes in a sachet and you can get two treatments out of one sachet - a good idea because it's not cheap but wow, does it work! I save it for when the soreness is really bad and stopping me from eating.
I think you get used to the side effects. After a while they become just a part of normal life. I just tell myself that side effects mean it's working. Whether that's rational or not, it probably isn't but I run with that rather than dwelling on remembering how I used to feel about 100 years ago when I was well. It feels like 100 years, anyway. The main thing is, it's now one year since my diagnosis, mastectomy and starting on Letrozole and it will be one year at the end of January since I started on Ibrance and I'm feeling sooo much better now than I did then.
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Janet, I just got approved for a grant from PAN. My MOs office did all the work and only told me that they had found foundation money, so when PAN sent me a survey I didn't know who they were.
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Cive, my first grant from PAN was totally handled by my MO's office, too. After that, I was on my own. I knew they would help if I needed them, though. My second grant was from a different foundation (PAF) because when my first one ran out, PAN didn't have any funds for MBC.
I just found out some new info on the grants yesterday. I called PAN when I saw they had funds for MBC. (My second grant has just run out.) PAN said I could "renew" my original grant. The grant would be for $5400. (That is the amount they are giving right now.) The problem is that the grants run for a year (you can only use it during that one year period) and my "renewal" would start when my first grant ran out in April 2017 and run to April 2018. It would not start now, Nov. 2017. I was pretty surprised because that doesn't make any sense. I was thinking I would not be able to use the $5400 by April. Then I remembered the donut hole. (Where the donut hole falls depends on your drug insurance.) The first month you use a grant (if you haven't dropped through the donut hole yet) and any time it gets used in January, it gets hit for a much larger amount. My co-pay for Ibrance is usually $563. In Jan, it will be about $3000 to drop through the donut hole and go back to $563. I will come pretty close to using up the new grant by April. I have a few messages in to PAN trying to verify that the info I got yesterday on the phone is correct.
I know this is all confusing and difficult (some didn't get through it or are bleary-eyed by now) but I'm a numbers person and it is really important to me to know I can pay for this drug that is keeping me alive.
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Thank you leapfrog. You inspire me. I am hoping things will improve soon for me. I get a scan and bloodwork on Monday. Then I guess I will know if I will be continuing on Ibrance. I did find out one unexpected source of my dizziness problem. I went to an ENT because I am losing hearing in one ear. Turns out I have been grinding my teeth at night. That inflamed a nerve and muscles and joint. All of that can cause hearing loss and dizziness. I am trying to wear a bight plate at night to improve my SEs
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