Ibrance (Palbociclib)
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Hollyli, just thought I'd jump in -- TIA is a Transient Ischemic Attack, sort of a mini-stroke (blood supply to the brain is stopped) that comes and goes quickly, so has no lasting effects on the brain tissue.
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Candy-678: I am not a disability expert by any means but I've been researching it pretty hard for myself and wanted to share a few findings with you.
1. Going part-time can be a huge mistake once you try to get disability as the SSDI check amount is largely based on past earnings. Work part-time, earn less, and benefits will be less. The estimate on your personal SS statement should be pretty accurate assuming their record of your past earnings is correct. You can find this on the same statement and compare to past tax return records.
2. As others have noted, metastatic breast cancer should make it easier to qualify and speed up the approval process. However, it is not guaranteed by any means. You'll need to be able to document why you can't work. You will absolutely need a doctor's support to get approval so be sure to get your MO on board before you apply. Most doctor's have very little understanding of disability eligibility and benefits.
3. If you have disability insurance through your employer, do NOT quit your job. Eligibility for the benefit ends when your employment does! However, you can't apply if you are still working. Sounds conflicting, right? The correct order of steps would be to go on sick leave or FMLA, maintain "employment" as long as possible, and apply as soon as your last day of actually working is behind you. SSDI is independent of your current employment status but does rely, as discussed above, on your past/recent earnings.
Edited to clarify: That last sentence isn't clear and could be misleading. You generally have to not be working to qualify for SSDI. I only meant that quitting your job wouldn't prevent you from being eligible for SSDI.
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Chiming in:
Novagirl-- Thanks for the chart. I am going to see if I can enlarge it with my computer. Eyes not what they used to be, hahaha. Then see what applies to me.
lissalou- Yeah scans can be frustrating. Each one has its own opinion of what is going on. I wish there was a scan that told things as they really are - 100%. But I guess nothing in life is 100%.
Hollyli202- Thanks Ciaci for clarifying TIA. Yes that is what it is. Yet again, the scans don't show the whole story. I had a CT of the brain and then an MRI of the brain when I went to ER with my symptoms. Both scans negative. But the neuro doc listened to my symptoms and said it sounds like a TIA and the scans wouldn't show anything unless there was injury to the brain. Also, cancer patients have a higher risk of blood clots and I have a history of a blood clot in 2017. So.... maybe a small clot that didn't cause lasting damage. Thus transient.
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Leydi-- I also have found out that past earnings will be reflected on my benefits now. I changed positions within the same organization when I was diagnosed and took a large pay cut (could not do my job anymore). That took effect in Jan 2018. I do believe if I wait to apply those larger earning years will drop off and the lesser years will be the majority and I will earn less in SSD. Another reason to try and apply now.
I have began discussions with my MO, but as I posted, she is reluctant for me to stop work. She doesn't want me " sitting at home all day" - her words. I plan on discussing further with her as time goes on. ----See timeline below.
Sorry for the long post. I copied my post from yesterday from the How Many Are Getting SSD Thread and pasted here.
I started the process with HR yesterday.
This is the timeline as I understand it:
IF approved to change intermittent FMLA (I had already) to continuous status---9 weeks left of FMLA and my sick time (must use sick time up before STD) THEN
IF approved for STD from employer-----17 weeks left at 50 % of pay I would apply for SSD at the beginning of STD THEN
IF approved for SSD----payment would start in 5 months (as protocol with Social Security) SO
I would have SSD totally in 8-9 months from now.
All IF's and they think I am truly disabled. May be denied at any level. My HR department commented that I could be denied.
Oh my. A marathon not a sprint. Just like the cancer.
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Cure-ious-that’s a great point! They have immune check point blockade listed in first line. I’ll ask my MO next month.
Melissa-I’m sorry you are dealing with the grey area of bone scans and monitoring. I’m new to this, I’ve only had one scan since starting MBC treatment so I don’t have much to add. I hope you get some answers.
Holly- that’s interesting about PARP being first line over Ibrance. Fingers crossed for your 3 month scans.
My MO said he would test me at time of progression to see if tumor is BRCAish. Then PARP would be a a treatment option later. This would be done with a liquid biopsy. I need to learn more about this.
Another “nugget” posted from patient advocate at ASCO: PI3CA mutation associated with nonresponse to anti-HER2 therapies.
I have PI3CA-I’m HER2 negative but I received Hercepton in a clinical trial when I was early stage to see if patients who had some HER2 receptors but were negative would benefit from Hercepton.
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Candy, I had a TIA about six years ago - four years before MBC raised its ugly head. I was sitting at work, on the phone, and realized I wasn't making any sense. I could think perfectly clearly, but the wrong words were coming out! I was trying to say "We need the doctor's authorization" and I kept saying "Four chair is yes grace", over and over. I hung up and turned to see my husband's face (we worked together in our pharmacy), and he was white as a sheet. I started to cry, and he had one of the delivery guys take me to the ER (in NJ, a pharmacist can't leave the premises without shutting down the store). By the time I got there, I felt fine, was talking normally, but was obviously shaken up. My scans (CT and MRI) came out normal as well, and that's when the doc diagnosed the TIA. I haven't had one since, knock on wood, but whenever I can't think of a word (much more common now with the Ibrance and Letrozole!), I have an instant of panic...
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Hollyli1202: Thanks for asking about my scan from yesterday. I see my MO tommorow with results. My online chart loaded my liver panel and metabolic results from lab but tumor marker and scan results aren't on yet. Last time my markers went from 13 to 15.4 so I'm nervous about that and they saw a slight but not "significantly" enlarged node. If this is the visit when she tells me I/L has failed I wish I knew more about what to ask her. My tumor has shrunk some I think ,but throughout my treatment my nipple has become inverted. Has that happened to anyone? And does anyone feel little tingly twinges in their tumor area from treatment?
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Elenas, I also had a slight enlargement two scans ago, but my last one showed an improvement. I interpret it all as they ebb and flow as the Ibrance works. Instead, look for a trend that it keeps growing and my MO agrees. Then discuss new treatment. We do discuss next steps if and when, but not to a great extent as new meds are being developed rapidly. I get twinges in odd places and they come and go.
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When I discussed my last Pet scan with my MO last week, she said she looks for a 20% increase in size. My one largest lung nodule has gone from 7 mm to 8 mm to 9 mm in the last three scans. She said SUV values are too unreliable and hard to pin down to use. I do Pet scans every four months. She said if the nodule went from 1 cm to 1.2 cm between scans, she would consider treatment changes. That would be a 20% increase. I think she is just humoring me. Good.
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Jaycee 7-8 mm is extremely small...I’m surprised they could even detect it....
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Thanks for the feedback. I love this forum. I would miss it here, if no longer on Ibrance. As much as,I hate the commercials for it, I'm grateful for the past couple years on this med.
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Exactly, Frisky. I think there is a lot of punting going on. Case in point: at the end off this most recent scan, the reader mentioned my preexisting rib fractures. Only thing is, I've never had any rib fractures. Do they just make stuff up? I had a abdominal/pelvic CT years ago that said I must have had a hysterectomy. Nope.
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Jaycee you crack me up...these inconsistencies are the stuff of comedies...like the romps on the I love Lucy Show...
It only confirms that we have to be diligent and protect ourselves....cancer care is a mad house....
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Hi ladies just got back from MO appointment. So first blood work since on Ibrance...yup I was low... 8 or 800. They are going to reduce the dose. She is letting me finish the 5 pills I have left on this first cycle and then having the blood checked 2 days before I start new cycle of lower dose then we will check it again July 3rd at my next visit with her. I got my first shot of Xgeva today....I think I can taste that??? I am going to go over and post in the Xgeva thread. She told me not to be disappointed that the Ibrance does it gonna be a little lower it will still fight the cancer same way. So that did make me feel better. She also said that after 1 month on the xgeva if the bone bet in my hip is still giving me pain we can radiate it but she wants to give that a chance to do something. I was happy though she is not gonna do Xgeva every month but every 3 months.
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NicoleRod, I dropped to 100 mg after first cycle due to low ANC and platelets. I am on cycle 32 and doing fine!
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same here. I dropped to 100mg maybe after 2nd cycle? Started cycle 27 this past Monday. My ANCs have been pretty steadily around 1.0/1000. But there was a dip in the beginning that caused them to lower me from 125 to 100mg, which I’ve been tolerating quite well minus some momentshere and there
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So I spoke with a nurse about why all of these spots on my spine showed up on the mri but not the pet scan i had a month earlier. She said pet scans show soft tissue (organ) involvement better and mri's are better for showing bone involvement. So if i have only ever had bone involvement why are we just now doing an mri? She said i would have to ask my mo at my next appointment. As far as odd reports, it was mentioned in one report that my left breast was absent due to mastectomy. Since I have my left breast and never had a mastectomy this was obviously incorrect. It worries me at times if these people really know what their doing.
Melissa
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My MO says she always look for the indications of my bilateral implants and port to confirm they are reading the right patient! She is too funny, but knows mistakes are a reality.
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Melissa, I'm right there with you. I have noticed all sorts of weird things on my scans, which I just started doing again this past year. So on some scans, they say "uterus may be absent" -- duh, I had a hysterectomy in 2006. On some they say I "may" have had abdominal surgery -- guess they haven't read about my tram flap in my medical records? But my favorite is that years ago, I had a scan (maybe in 2007 or so?) and my internist at the time freaked out because two things showed up: 1) a gall stone and 2) a hemangioma or calcified disc (no one knew which) in my thoracic spine. My last scan before 2018 was in 2008, and both things were visible and reported. Now, we all know that the machines are much more sensitive now from 10 years ago. It took until May of this year, after I'd had numerous CT scans, PET scans, nuclear bone scans and God know what else that these things finally showed up again on a scan report. Clearly they didn't go away in those years, because they are still there. But who was reading these scans and not seeing them and then, all of a sudden, they are there? Does not inspire high confidence.
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Ok is there an Xgeva thread?? I cannot find it?? If not let me know so I can ask some questions here.
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Melissa-I had a similar mistake on my scan. The scan referred to a lumpectomy which I have never had. I insisted on the report being corrected-it took quite a few attempts to get it straightened out. As you say-it doesn't give you a lot of confidence in how well they are being read or compared to prior scans.
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Ciaci--- Scary isn't it. I hope I never have another. I have not had any more visual issues, but have had some numbness/tingling to the same side of the face off and on.
About the scans--- My CT in January showed an area of "artifact". You all probably remember me posting about my concern. Jaycee-- you loved the word "artifact" remember. Hahahaha. Well when I had the next CT 3 months later I asked my MO to have radiologist double check that area of concern. The MO said not to worry because they always compare last CT to current CT. She said the radiologist is liable for the report and he/she will make sure there is no new lesions. So.... if that is true....then how can they show these issues you have mentioned---Jaycee's hysterectomy she hasn't had. LOL.
Now for a rant---- Is disability a 4 letter word or what??!!!!!! Let me explain. I went to my PCP today for follow up of hospitalization for TIA (mini stroke). We were discussing my lipid labs (cholesterol not bad, but HDL and LDL need work), my carotid doppler results, my blood pressure readings (I have been checking blood pressure at home and keeping a log), etc. I mentioned I am off work right now (FMLA) and thinking about SSD. OH MY GOSH !!!!!! He sarcastically said " You will be denied". I am getting tired of hearing that so I in a clipped tone said " I am not applying because I had a TIA. I have Stage 4 cancer, autoimmune issues (of course he knows about that), and now a TIA". And I said, " I have been researching SSD and they do have a Compassionate Allowance Program for MBC women". There was an awkward silence and then we continued on with the appointment. At the end of the visit I approached the SSD subject again. I said "If I do apply for SSD and they contact you....He jumped in and said " They will request records, not ask my opinion". OOOKKKAAAYYY.
So my HR dept thinks I will be denied, my PCP thinks so too, and my MO thinks I will be 'sitting around home all day' and doesn't want me to apply. At least I know you all have my back.
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Sometimes you have to get a lawyer to help you get approved. They specialize in this field.
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NicoleRod, lots of us here have had experience with Xgeva, and would be happy to answer any questions.
First and foremost, take Claritin (loratadine) for five days - 2 days before, the day of the shot, and 2 days after. You'll be amazed at the difference in how you feel! Apparently, the Xgeva (and Prolia: same med, different strength) releases histamine, and the Loratadine is an anti-histamine. Secondly, don't buy a small-count Loratadine at, say, Walgreens. So expensive - I paid $8 for 10 tablets, then felt like I got a bargain, paying $15 for 30 tablets! Then I got smart, and bought a 365-count bottle at Costco Wholesale Club for $11 !!!!!!!
I was on Xgeva monthly for six months, then switched to Prolia, once every six months.
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OMG CIACI!!!! I did happen to take a claritan D today after my shot..however, I took it about an hour after the shot (I took it because my post nasal drip was bad) but I was so itchy and had some what feels like hives. I have been though having this allergic reaction on and off for the past year (long before I was re diagnosed) they think its a reaction to something I am eating but we cannot figure out what!!! We thought a gluten sensitivity which effects skin, not to be confused with a gluten intolerance which effects stomach, its called dermatitis heproformis and it cause itchy bumps on your elbows, knees and butt cheeks and that is primarily where I have them. They knew it wasn't a bug or mite because my husband doesn't have them and it's been a year and half plus I had skin samples taken from dermatologists and they all said it's nothing contagious it's something I am ingesting. However I was allergy tested for everything all came up negative, and I came up negative for the Dermatitis Heproformis as well. Anyway today after the shots I was ITCHING LIKE CRAZY!!!! I came home and took a hydroxyzine (anti histamine) and I was sooo thirsty I drank like 50 oz of water. Now I have a headache .... I also had a medicine-y taste in my mouth.
So I will be sure to take Claritan D tomorrow too!
My other question is how much calcium supplement do you all take and does anyone take it in pill form? I don't want it with magnesium or Vitamin D3 though because I already take those.
Nicole
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Nicolerod, I take citracal, slow release, 1200 total, per day..one tablet each in morning and evening. Take with food. I think the kidneys clear anything excess over 600 mg, that is why I divide dose.
I am on prolia shot every 6 months. I have osteoporosis, worsened because of letrozole. I had a questionable T12 met when I was treated for liver mets, but since it was sclerotic (healing), it didn't change the course of treatment.
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candy- what’s odd about this disability stuff is my MO and the radiation oncologist begged me to retire. Perhaps they thought my prognosis was poor- but, my MO told me he wanted me to do something else with my time left on earth and I was stage III C- not metastatic. He told me he would retire at 60 ( and he did) having seen far too many people with cancer who Worked too long and got very little timeto enjoy retirement. Go figure - your people sound mean- I live in California and someone told me here that stage 4 cancer automatically qualifies you for disability- I didn’t ask the details at the time.
I applied for regular SS at age 62 ( not metastatic yet) and the worker said why are you applying early and your spouse isn’t in a very judgemental way. I said I have cancer, he doesn’t - that stopped that inquiry. That’s the only time I played the cancer card- but, WTF with some of these people! I am sorry you have to fight for this and hope you get what you need as soon as possible.
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Hi ladies. Had my regular appointment yesterday (every 4 weeks). My tumor market decreased to 64. I know many oncologists don't use TM's as an indicator but mine does so I keep track of that. Not ready for the IBrance dance but close. My regular oncologist was on vacation (drinking wine in Italy?). The substitute doctor discussed my creatine number with me (asked who my kidney doctor was - don't have one). I told him I take Advil for mild pain - he recommended Tylenol instead. My regular oncologist has never discussed that with me. The number isn't really high - just varies between the normal range and slightly high. PS: I have been on Xgeva for several years and don't have any side effects that I have noticed. Get that shot every 3 months and Faslodex every 4 weeks.
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NkB, yes, I qualified for CA state disability immediately with my dx. I received 60% of my pay but there is a limit so once you reach that, it rolls you over to SSDI. I think it was 2years but can’t remember how long or how much. If you use the online website foe CA disability (EDD).it will tell you. I was told that CA is one of the best states for that. It was easy.
Wandering, I was told to only take a Tylenol...no Advil. My creatine has stayed stable and I had liver Mets plus bone Mets.
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About the mistakes made by doctors, radiologists included, I try to remember that somebody had to graduate at the bottom of the class in medical school! I also imagine that many of the doctors are overworked and sometimes confuse patients' scans. None of this is an excuse as so much hangs on their accuracy. It just is what it is and we have to pay very close attention, calling out the errors. One friend of mine was told a few months ago that her scan showed her cancer was much worse and they should discuss hospice and calling in her children. It sounded outrageous to her that she could have progressed so rapidly. Then when her path report came up online it said she actually was somewhat better......(drum roll).....the doctor's report belonged to another patient! He's a really good doctor and she had been with him for more than a decade but she just couldn't continue in his care after that so she has moved on. She switched doctors within the same practice so all her auxiliary people are the same.
About the TIA: My opthalmologist feels certain I had one while on chemo in 1994. He said that it's like "looking for footprints after snow has melted" when there is no permanent damage to the brain. I did have some vision changes that were permanent but nothing awful. Here we are 25 years later and I've had lots more chemo - nothing else has happened.
About calcium supplements: Since I don't like adding more pills, my oncologist said he bet I could get enough calcium from the Tums I was taking for the Ibrance/AI indigestion. He was right! I stay on the high end of the chart with no supplements.
About XGeva: I've been on it monthly since September, 2016 but I asked to start taking less. After skipping one month I had an interesting change. Some of the aches I thought were from the AI or Ibrance have subsided. One especially annoying one was along my ribs on both sides and hurt when I reached around to wipe myself (WTMI!). Not feeling that at all now!
About retirement: I've learned that some doctors have spent their entire lives on a schedule and can't imagine that you could be happy without doing the same. Mine says he can never retire because he's afraid he wouldn't do anything even though he has many interests. It makes me sad for him. Pray about this decision and do what you have peace about.
Please pray for me as I consider taking at least a month off treatment. (Started Ibrance/Arimidex/XGeva in September-October, 2016.) I'll get scan results on Monday and I'm trying to decide if I should take a break whether things look better or worse. My granddaughter is spending two days a week with us while school is out and I just want to have the energy and lack of nausea to enjoy the time with her. She's an artist too so I want very much to jump in and paint 'til we drop!
I hope you all have a great week-end doing what makes you happy!
Love from PatGMc
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