Ibrance (Palbociclib)
Comments
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I live in Illinois and went in to my local Social Security office to meet with someone. When I said stage IV MBC they signed me up for disability with a 5 month wait. That was in November 2015.
Have the laws changed??
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You ladies are wonderful. Thank you for all your advise and sharing your own personal experiences.
Intolight- No I don't think my MO will give me a note. This past winter with the flu running rampant, my MO was giving me tips and advise to stay healthy and still work. He told me he wanted his patients to stay at work as much as possible. He said when we sit at home we can get depressed over our situation. I don't necessarily agree with him. If I didn't work full time, I could still work part time or do volunteer work to keep my mind busy. Also, the way I understand it, Illinois does not have a disability program. Go figure. Our state is in horrible shape financially.
Tanya- Insurance is a BIG issue. I don't know if Medicaid from my state would pay for my meds (esp Ibrance with the large cost). And would Phizer or American Cancer Society help? I would hate to give up my insurance and then find out I could not get my meds thru other means.
Penny-78- Yes I think I can schedule half day offs on the days I have MO appts. I would have to do that at least once a month for my injections of Lupron and Xgeva (given in the office). And plan CT scan every 3 months with half day off (getting off at 5pm I don't think the outpatient radiology dept would have appointments after 5pm). I guess if I stay healthy and stable once a month getting off early from work would be ok. My concern is if I need to be seen more often than once a month will my new boss and co-workers be ok with me being gone. Can they cover my work, would I get behind, or cause interruption in the job for everyone else. Now with working 3 days a week (12 hour shifts) I schedule my appointments on my days off and it doesn't effect my job. I am going to talk to my HR dept about ADA accommodations so I will be covered legally for taking off work due to my condition.
Switching gears-----
Do we still get yearly mammograms ( for the remaining breast with a unilateral mastectomy ) when we have MBC???? It is time for my yearly mammogram. I will ask my MO at my next appt in 2 weeks but I wanted to ask what you all do. And, if they find something, do we do all the regular things---biopsy, lumpectomy, mastectomy????
Thanks to all, you rock!!!
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I write-
I just saw your post. OMG. PM me and we can talk. If we live in the same state with the same diagnosis, we should be told the same thing.
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for social security disability, your medical records will be the determining factor. It doesn't matter if your doctor won't write a note. I think you should complete the application. The social security office will order your medical records and a decision will be made. With MBCyou should automatically qualify because you meet a “listing" of disability.
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Penny E & E are Exemestane and Everolimus. When I had a bone bc 21 months ago I was ER/PR + & HER-. I will need to have liquid biopsy to check what it is now as bone biopsy’s are nortoriasly difficult. Any thoughts or advice gratefully excepted. Hope you are doing ok
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Morning everyone! I have an infection which they are treating with novamoxin and doxycycline, so my MO has said to stay off the Ibrance till my meds are done
I am assuming this is the norm? They want my body to build up neutrophils which are at .6 as of yesterday.candy-6788 - I had my yearly mammogram on my remaining breast, it was clear (they told me right away), then my stage 4 was found the next month as a bone met on my hip...
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Chico, I’ve seen reference to those meds on other boards but I am less familiar with them. I asked about your PR status because ( as you probably know) postitive boften changes to negative at the point of metastasis. And there can be differences in best treatment (for example studies have shown that AIs are effective but Tamoxifen is NOT as much when PR status is negative).
I’d definitely ask your MO some very specific questions as fulvestrant does seem to be the pretty standard second line nowadays. Hopefully he/she will be able to explain solid thinking!
Please keep us posted
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Candy, my MO told me no mammogram - she said the PET scan I'm scheduled for in July will cover anything a mammogram would show.
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Candy, I pulled out my SSDI paperwork and quoting it here "By law, Social Security has a very strict definition of disability. To be found disabled: Your medical condition(s) must have lasted, or be expected to last, at least 1 year, or be expected to result in your death." Sorry, but the truth is you qualify, regardless of your ability and willingness to work. Now, because it is disability, you cannot both work (even part time) and be on SSDI. There is a 5 month waiting period, during which time you can't work and you will not receive benefits. It sucks, but that's the deal. I think there is a di minimis amount you can make once you start collecting of $840 a month. If you make more than that, you will be considered not disabled and will be kicked off the plan. It's not like regular social security where you can work and the worst that happens is your benefit is reduced. You lose you benefit and must reapply, wait that 5 months again, and start all over. You can apply on line and follow up with an in-person interview. Doctor does not sign anything. They will contact your insurance, verify your diagnosis, and that's it.
As to your doctors opinion, this really hacks me off. He has no business telling anyone how they should live their life after a stage IV diagnosis. What you do, how you cope, is outside his pay grade. You have important, life-and-death decisions to make and you don't need to worry about whatever bar he's setting or somehow disappointing him because you want to de-stress, maybe get more exercise, improve your diet, or spend quality time with loved ones. Sorry, darling, I don't want to add to your burden but if you really love this MO have a frank talk with him. If you don't love him, find another. Sending you giant waves of support.
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Candy I hope you don't mind if I chime in here. I have to say I agree with Jaylea (as usual) about your doctor's opinion. He's made a sweeping generalisation. He has no idea how each and every one of us will react if we're not working. I, for one, would find it impossible to work yet I stay happy, I don't need anti depressants at all, I have plenty to keep me occupied and, like Jaylea, I believe that once we've been diagnosed as Stage IV we need time to work out our thoughts and feelings and sort out our end of life decisions. It's not morbid to do that last item. It's sensible. None of us knows what's ahead of us and we should be making the most of every day while we can. My choice is to have everything I want done written up and kept on a USB so that it's clear. I've sorted out my jewellery and I'm in the process of making sure whatever is left behind is left the way I want my loved ones to see it. Personally, I believe I have years before this is really necessary but I'm doing it gradually now as a just in case precaution and because I have a lot of days when I'm incapable of doing anything. It's also necessary that we do whatever we can to improve our quality of life and for me that means exercising as much as I can despite the bone mets and eating healthily, watching documentaries to improve my knowledge and writing my life story for my son to keep. A doctor simply has no right to tell you how to live your life at this stage. I agree with Jaylea, if you want to stay with this MO, tell him firmly what YOU want from him. It's your life, not his. Sorry, I did get on my soapbox a bit but I feel strongly about this.
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Jaylea and Leapfrog---
THANK YOU, THANK YOU !!!! And bless you. I don't know what I am going to do yet. I do like to work some. It gets me out of the house and occupies my mind. But part- time would be better, I think. I am the type of person, and always have been, that wants to give 110% at work. I want to meet my bosses and co-workers expectations. I don't want to be a "slacker". I am afraid that now, and esp. in my future, I will not be able to do that and everyone will think "it would be better if she wasn't here, she should just quit".
As far as my MO, he is leaving our area at the end of June. Yes he was a great MO---very knowledgeable, good bedside manner. Maybe he shouldn't have said the things he did about continuing to work. But when I called the Soc. Security Office for info, the woman there also said the same thing. She said if I can work, I should. She said most docs want their patients to continue their regular routine as long as possible. This seems to be the general consensus ( with people not going through it themselves ). Yes, we have a terminal diagnosis, but we must keep on keeping on. Very confusing issue-----keep on like nothing has changed, don't rock the boat by needing off work for appointments or if you are feeling fatigued. I will bring up the subject with my new MO, but I bet she has the same stance on it.
Insurance is another BIG factor. I think ( I will have to verify ) that I will not be 'bringing home' as much monthly if I go to SSD vs working. AND then I will have to pay for a private policy. So financially I would be worse off going on SSD.
Lots to think about. Not black and white issue.
But THANK YOU for the info and especially the concern for my situation. This group of women truly understands like no one else can. I thank God for you all. I couldn't go thru this without you. I don't really have anyone in my life I can talk to like this. My family (small as it is ) is really in denial about my diagnosis. I was always the strong one and I don't think they can see me in any other light. My future scares the shit out of me.
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Candy- It is a very hard thing to decide to go on disability. I get it. I am still working full-time and don't have the option to quit anytime soon. Our finances just can't take it, especially if I'm going to be gone anytime soon. I didn't buy life insurance before my initial diagnosis, and could never get it after that. However, there are definitely reasons to make the decision to go on disability. I'm waiting to pull that trigger once I know I'm running out of treatment options. If Ibrance works for me, then I may have years of being able to stay employed full-time. However, in the meantime, I'm definitely accepting the fact that I'm just not the same employee I was before diagnosis. Just like I'm not the same friend, wife, mother, etc. Everything has changed, and as much as I wish it didn't, it has. My priorities have totally shifted. I don't give my time to things that don't matter to me, or that aren't important to me. On the flip side, I'm spending lots of time focusing on my family and friends and creating fun memories and living in the moment. At work, I am lucky, because I work in a very flexible environment. But, I have to give myself the leeway to pass off projects I normally would have completed myself. I try to forgive myself when I'm too distracted with fighting with insurance companies and researching treatment options to focus completely on work. I just don't say "Yes, I'll take care of it" to things like I used to, because I have to allow time for my fatigue.
In my cancer center, they have a social worker whose job it is to help you work through some of the logistics of being a stage IV mbc patient. She knows all the ins and outs of talking to HR, applying for disability, getting medicare sorted out, etc. Maybe you have access to one too. I have talked to her and she advised me that I could qualify for disability immediately, if I wanted. I also have Short Term disability and Long Term disability that can bridge the gap until disability kicks in. One thing I totally agree on, is that you should take stock of what's important to you and focus on that. No one knows what it feels like to make these kind of decisions, until they are in our shoes. Unfortunately, our doctors try to tell us what's best, but they really can't know. Whatever you decide to do, just be kind to yourself and remember that you've got us to support you.
Missy
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Just curious how long any of ladies have been Ibrance and how quickly you see results. I just finished my first cycle (will start my second tomorrow). I have a doctor's appointment tomorrow (labs, etc.) so the results will determine if I go on the second round starting tomorrow. A have been on Faslodex for two years and Xgeva for 5 years. Diagnosed in September 2013. Bone mets only so far.
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Well I just started my Faslodex shots today and rec'd a binder full of info on my Ibrance which will come in soon once insurance approves. In my binder I rec'd, it says to wash clothes and bed linens sperately from everyone else. Does everyone else do this and I watch my grandson a few days a week. Is it gonna be ok to even watch him anymore. Seems like this Ibrance is some strong stuff.
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Well I just started my Faslodex shots today and rec'd a binder full of info on my Ibrance which will come in soon once insurance approves. In my binder I rec'd, it says to wash clothes and bed linens sperately from everyone else. Does everyone else do this and I watch my grandson a few days a week. Is it gonna be ok to even watch him anymore. Seems like this Ibrance is some strong stuff.
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Candy, you've gotten a lot of terrific advice above. Like you I would definitely miss working. To answer your earlier quesiton, there have probably been four or five times over the last 18 months where there has been something unexpected or out of sequence that has forced me to ned to miss or reschuedle at the last minute. (I've been very lucky -- I've never missed becasue I felt too sick.) I hope that your HR department can give you good advice!
Wandering, I *felt* better within four or five days -- though I'm not sure how much was the Ibrance, how much was the Anastrozol, or how much was simply timing -- i.e. that my first compression fracture was healing. I think on the scans the major improvement took places slowly and steadily over the first six months or so. Hope that helps!
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My laundry goes in with everything else. My DH uses Roundup on weeds and his clothes go in there as well :-) As if we don't have enough to worry about!
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Oh my goodness, Neogirl, No, I don't do that nor have I ever heard that recommendation before. I have been taking Ibrance for 22 months, and have not had any issues with "contaminated laundry." You should be fine watching your grandson. I watched my two grand daughters who are now 2 1/2 and 3 1/2 years old for most of those 22 months, and I stayed pretty darn healthy. Although Ibrance does cause decreased neutrophil and white blood counts, most of us do not experience infections. I have found that normal hygiene measures such as frequent hand washing and washing fruits and veggies before eating them are sufficient. I do carry disinfectant wipes and hand wipes, just in case. When I fly, I use the wipes to clean the tray table and arm rests. I have heard that they are often super-germy, and who wants to catch the flu or a cold, especially on vacation. I hope that Ibrance and Faslodex work well for you for many years.
Hugs and prayers from, Lynne
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50sgirl, you just took a load off my shoulders. I am so glad you I asked about the clothes washing and watching the grandkids. I was just thinking I just can't do anything anymore with that book they gave me with the 8 million side effects to watch for. I will get myself a small travel pack of wipes and just take it one day at a time.
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Hi Ibrance ladies,
Candy - Stopping work is a tough decision financially as well as health benefit loss.
I had stage 3 BC 13 years ago and was able to take off a year for treatment. Frankly at that time I didn’t know if I was going to live or die, sooner or later. This time I’m much older and stage 4 so as soon as I got the diagnosis I knew I was done with work and I wanted to focus on my relationship with the Creator, my family, and health.
Everyone’s decision is unique due to age, home life, finances etc. I only ask my Dr about medical things I chit chat with him because he’s very kind etc. he lost his wife to Bc a few years ago. I started working when I was 14 so no one could dare to tell me when I’ve had enough.
I’ve been on ibrance for 11 cycles. I’m hopeful for a cure and quality of life during this treatment.
I appreciate you all Leapfrog, Jaylea, 50’s Lynn, Penny78 your words will get me stop doing the no worries for the rest of your life dance and start getting paperwork in order. USB is a great idea for passwords etc.
Thank you all have a great day
Tanya
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Thank you ladies. I love you all.
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Penny-78, thanks so much for asking!! My MO sent me for a CT scan this morning to rule out a blood clot. I'm just waiting to hear from him - although I'm fairly certain it's a rib thing.
Kathy
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neogirl: I agree with the other comments about washing clothes separately. I did not receive any information (binder?) with my Ibrance. You might want to read through the information about it on the Ibrance website but I don't think you will find any laundry information. I have been on Faslodex for two years. I have developed a few tips over the years: get the shots one at a time - this gives you a chance to relax the buttock that's being infused by putting your weight on the "off" side. Since the site bleeds a bit my nurse always puts on a band aid. I take that off when I get home (soak spot with warm water - bath? or wash rag). After the band aid is removed, I put a dab of lotion on the spot - mine tends to itch - I think from the band aid more than the shot. I assume the Faslodex has worked for me pretty well. My tumor marker rose the last couple months which is why my oncologist put me on the Ibrance. Best wishes - sending you positive thoughts.
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Needing help with this and not sure if I should start a new topic or is this the place?
So I have just come home from my 1 year radiation followup and because I have small, not too invasive, headaches I will be going for a head/brain scan - what happens? I have not yet had a chance to check with Dr. Google
figured some of you would have better information for sure!! I have searched on this site for a Brain/Head scan thread but nothing is coming up...thank you for your info! On a more positive note, my April 25 ct scan showed potential cyst (not tumour) on my left ovary, had the pelvic ultrasound done this morning and my regular GP just called to tell me there are 3 cysts on my left ovary and 1 on my right ovary, so I will go back in 1 year for a followup! 0 -
Janky; As someone who has had ovarian cancer, I would advise you to get the TM CA125 say every 3 months just as a safeguard. The symptoms are very vague. I have had headaches and follow-up scans for them....MRI's. In my case I was found to have had a lacunar stroke and no mets. As I have had no long term effects from the stroke and no additional strokes and remain on medication over the last 10+ years, to me this was a positive result. My bc at that time was her2+ which increased the odds of mets.
My best wishes,
Cathy
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Neogirl, my 2 year-old Granddaughter lives with me and I have never had a problem with washing clothes together, etc. I am careful about the toilet as she just completed her potty-training (yay!). You did get me thinking about the face she is sick a lot, but we have always chalked it up to daycare. My DD also lives with us but takes her to daycare because I don't have the energy to watch her everyday. I have been on IL for 2 years, so her entire life.
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Janky, hope you're responding well to infection meds so you can jump back into treatment soon. As to head/brain scan info, there is a forum for brain mets called something like "how are people with brain mets doing". And our friend Lita (Lita57) is generous with her knowledge so you can PM her. Good luck with that and keep us posted.
Candy, you've got a great handle on your situation and are approaching this clear-eyed and armed with facts, so whatever decision you make is the right one. We're right here with you.
I'll make one more point on the SSDI deal and then climb down off my soapbox and join Tanya in the 'don't worry be happy' dance. I had a wonderful career, started a consulting business and loved, loved my work and clients when I was diagnosed. The decision point for me going on SSDI and giving up my beloved work was that should I pass before age 62, my spouse would receive a large percentage (70%-80%) of my benefit when he turns 60. But I had the luxury of having health insurance through DH. Health insurance trumps all other considerations.
Sending prayers of strength to all you warrior spirits today.
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Dear Ibrance sisters, I had to laugh out loud at the prospect of us doing our laundry separately while living in the land of Great Fatigue. I'm doing well to change my sheets at all, aren't you? I didn't hear about the hand-washing after touching the capsules until I was months into this so I've just never bothered to start that new thing. I keep thinking that if this stuff is so dangerous, why on earth are we swallowing it??
I have one other thing to mention tonight. My dear friend and fellow breast cancer survivor (20 years) and colon cancer survivor (about 5 years) was found dead in her home today. Cindy had an infection in her leg and I've been trying to get her to see a doctor for weeks, finally threatening to call 911 myself to take her to the ER. She just wouldn't go. I remember our fears way back in the Nineties about dying from cancer. Neither of us really expected to last this long but she lived to be 66 and here I am at 68. We both have had a pretty good ride. Tonight I'm thankful Cindy's in Heaven with her mother where she'll have no more anxiety, no more pain. I know we'll all one day get there but for now, we just keep on having the best days we can. I'm praying for all of you that tomorrow will be good.
Love, love from PatG
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Pat, I am so sorry for the loss of your friend. I lost two dear friends in the past 4 months due to cancer--one just last week--it is so hard! Yes, we need to enjoy the days we have the best way we can, and hold on tight to the ones we love!
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sorry to hear about your loss pat g.
Tanya
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