Ibrance (Palbociclib)
Comments
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Ciaci, beautiful photo! Congrats on walking up to the Parthenon, sounds like a most wonderful vay-cay and great that your husband is so encouraging!
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I'm pretty sure that the written symptom sheet is simply for the record and is not reviewed by my MO. However, he is diligent at prompting me to verbally express any concerns and questions that I may have and he will take his time to cover those to my satisfaction. So, it's not enough to write it down - speak up!
I'm currently working full time and trying to "muscle through" most of the discomfort, pain, and fatigue that I am dealing with. However, I'm starting to wonder if my stoic answers on the written sheet can be used against me in the future if/when I try to apply for disability. I'm thinking that I need to start being brutally honest on those written records. Any thoughts?
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Ciaci wonderful vacation. 7 MILES!
Tanya
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Leydi, if it were me, I wouldn’t go the stoic route. Why minimize what you are experiencing?
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It's always interesting to read of the differences we all encounter while dealing with Ibrance/mbc, like the different cancer centers, the way our meds arrive to us and pcp's vs oncs.
I go to both an onc and pcp. My onc is at a cancer center in a large, busy Pittsburgh hospital an hour away. I'm grateful for their intelligent, knowledgeable approach and am not quite sure I'd still be here had I gone to our local cancer center. And btw, my local gynecologist was the one who referred me to Pittsburgh, even tho he was affiliated with the local cancer center and I've always been puzzled and curious why he had more confidence I'd get the best treatment elsewhere. What did he know that he wasn't telling? The first year or two, I saw the onc every month, then was able to cut back to every three months.
I could tell my onc preferred addressing only cancer matters so I turned to my pcp for help with anxiety. And actually, the pcp's nurse practitioner is who I love the most. She is extremely calming, caring and very thorough. She was the one monitoring my vitamin d and worked with me to find the right antianxiety meds. And eventually I needed anti-cholesterol meds. Especially when first diagnosed, I very much appreciated the additional support of the pcp and np. They were concerned and helpful in a competent and non-emotional way, which I needed since my family was overly emotional at the time. The office is a quick drive to a nearby town; very low-key, far less hectic than bumper to bumper Pittsburgh traffic, can get in and out early in the morning so it doesn’t take up my whole da; I go twice a year. It helps having them close since the onc is an hour away.
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Ciaci, great picture! Also, about an earlier post, I'm going to put my two cents in. I ALWAYS ask for a signature to be required on my Ibrance delivery. If the package were stolen or dragged away and lost by my dog I would have to pay for the total amount of replacement and that's many thousands of dollars. My dog has destroyed packages once or twice, just not expensive ones like this. He's older and much calmer now but Murphy's Law says the one time I wasn't here to take the package safely inside is the time he'd decide to open it for me. Dangerous for him and my wallet.
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Ciaci, great picture. Thank you for the encouragement of the wonderful vacation!
Leydi, how close are you to asking for disability? Your doctor's office will have to fill out a form and they will ask questions about what you can do and how long you can stand, walk, bend over, etc. You are right to begin to think about this and what you can do before the pain starts, etc. I had to decide to be real about all of this as I tend to be stoic about a lot of things too. I am thankful I did as much as I fought going on disability. Decide what you really want and be honest to yourself. You are worth it!
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Does your onc show you images of your latest scans at your office appointments or just give you verbal/written info?
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hi Rosie - I have to ask my MO to sift through all the imaging results both the visual and the written and discuss each part piece by piece. I am grateful that he spends the time with me to make sure it all makes sense in my brain. Hugs
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Leydi,
I am now on SS Disability and long-term disability from my job. I found that being too stoic or upbeat on information that I gave to my doctors did hurt me with long-term disability from my job. I hate being negative but now I report fatigue, etc to my doctors so that it gets documented. The company that manages the disability for my job took my doctors notes and tried for several months to get me off disability. Fortunately (for this one thing) I am severely neutropenic so that makes a good argument for why I shouldn't work. So be careful what you put in writing or say to your doctor. It's my nature to be positive and to minimize symptoms but this almost caused a catastrophe for me.
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Rosie, my onc gives me a copy of the written scan report as it is my right if I request it, and discusses it with me. She usually discusses first and then gives me a copy afterwards after the nurse copies it.
Chicagoan, yes, the long-term disability company calls me for updates quarterly and is always trying to find a loophole. Last time they said they didn't have some retirement info from a previous employer and docked me pay until I acquired the necessary document. Had to be fault on their end of their initial advisor, but I had to do it anyway. Then they credited it back. I think they are finally convinced I won't be able to go back to work and they said they should be able to go to annual checks from here on. We'll see!
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Well I need to give you all an update from here. Something unexpected happened this weekend. I was scheduled to work Saturday. I was up early, ate breakfast and took my meds, and was in "the zone" getting ready for the work day. I turned to put up my breakfast dishes and everything looked funny---like my eyes were not working together. I wear glasses and you know how things look if your glasses are not on straight. Floor wavy and kind of dizzying and nauseous. Then I noticed my Left cheek felt pins and needles like. I went to the ER and was admitted. After several tests---I told them of the MBC and my concern of Brain mets vs stroke--they wanted to keep me overnight for observation. The MRI was clear for mets. The neurologist diagnosed it as TIA- a mini stroke. He said cancer patients are prone to blood clots---I knew that and have had a clot around the Port at the beginning of this journey. My blood pressure is always borderline high, so we started a blood pressure pill. And he wanted to start a blood thinner, but needs the ok from the MO first. So now I am on a blood pressure pill and maybe starting a blood thinner.
I physically feel fine now, but mentally not so well. MBC AND NOW TIA !!!!! I may never have any more issues with strokes OR the big one could take me out.
I was scheduled to work today-Monday- but I called in. I just couldn't deal with work today.
I too am thinking "Is this the time to apply for Social Security Disability". I have thought about it before, and questioned some on this site about it. But how do you know when is the time. I may never have another issue with strokes, but who knows. Do I wait for the next one, or progression of the cancer, and then say " It is time".
I am also looking into talking with a counselor about depression. And may ask my doc for some meds.
I am getting to the end of my rope. I am trying to stay strong, but it is getting hard. I started crying when the nurse gave me my discharge papers. She was reviewing the signs of stroke and said to call 911 if I had any of the symptoms.
I am 48 years old.
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Shocking and scary, Candy!! You are amazingly strong and brave, and its unfortunate as hell that you have to be..
There is legislation to remove the waiting period before medicare kicks in and the waiting for social security disability, so hopefully that passes soon.
And you are young, you need this cancer to be gone, immunotherapy has to kick in soon.
My only advice is to compartmentalize your problems, so you can study and resolve each one separately, don't let them coalesce into a big snowball that just takes you out.
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Candy, I am so sorry to hear about this latest scare of yours. Only you can decide when work is too much for you. I am older (66) so the disability question was not as difficult, but for me it was the right one. I too had a similar vision incident a couple of months ago although with no accompanying tingling anywhere, so when mine cleared after a couple of minutes I just went on with my day. I occasionally get blurred vision that both my onc and optometrist determined was meds related so I assumed it was more of the same but I wonder if it was a TIA and I was dumb not to go in. You were wise to get it checked out--always best. I decided at the time if it happened again I would go to the ER, but it hasn't. I don't have brain mets so I don't have that fear, and I have to I wonder if it is yet another side effect for me since I have been on I/L for 3 years now. I totally get the depression and crying thing. Walking helps me best, and I am fortunate that I can walk on level ground here by the beach which is my happy place. I will pray that you will find your answers and a place of calm. Chris
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Cure-ious--- I am wanting that legislation to pass, soon. I don't know much about how things move in our government. I know the proposal has been made and is in the House and Senate, but when should they vote on it?? What is the normal time frame for moving a Bill through Congress?? Will we see an answer--passed or not---in 2019??? That Bill passing would help me make my decision.
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DivineMrsM: Thank you. Of course you are right. I think my tendency to minimize my symptoms/suffering is a way of mentally coping with it. Maybe I'm trying to convince MYSELF that it is not too bad?
IntoLight: You ask a very good question. I have no idea how close I am to applying for disability. Some days I feel pretty good and it seems a long ways off; other days I'm miserable and wondering why I am still trying to work. I am the only source of income and insurance benefits for my family of four so that sways me to keep going as long as I can. Thank you for your kind words.
Chicagoan: I appreciate your tale of caution. That is exactly the sort of thing that concerns me. I've been reading my private disability policy from my job and trying to figure out how it works. I can't apply until I have already stopped working, which seems so risky, as it can be delayed or even rejected. I only have long-term disability so would be depending on my sick/vacation time to hold me over for the first 90 days. I'm also part of a "sick leave pool" that I've been contributing hours to for the last 20 years which should allow me to pull several more weeks worth of hours out of the pool once I use up my own sick/vacation time. However, I would have to apply for the withdrawal and a committee would have to approve it. No idea how often they approve/deny the applications.
The insurance aspect is even more confusing. I can stay on the health insurance while I'm using sick/vacation time but once on disability, I would have to pay a LOT more to use COBRA benefits. It is not very affordable but I can hardly go without insurance at this point. There's a weird twist in my benefit description that if I am determined to be totally disabled when my plan coverage ends, my benefits for covered services that are directly related to the disability would continue to be paid AT NO COST TO ME for a maximum period of 12 months. The two catches are that no health care that is not directly related to the disability would be covered and that COBRA would not be available to me at the end of the 12 months. So, that seems risky too! Would I be constantly having to prove that any treatment was directly related to the disability? What about treatment for the side effects caused by treatment of the disability? Argh!
Finally, I haven't been asking lots of questions of HR because I haven't told my employer about the cancer having metastasized. The paperwork avalanche for FMLA for the initial cancer diagnosis and treatment was such a pain that I'm wanting to avoid official notification as long as possible.
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Candy - Your incident sounds very scary but you are to be commended for taking immediate action and heading to the ER. I wanted to reassure you that adding a blood thinner is unlikely to cause you any additional issues/side effects. I've been on Eliquis for the last few years after a small lung embolism. My MO said that cancer patients are more prone to blood clots and that some of the treatments add risk as well. He said that the benefits of me staying on the half-dose pills for the long-term outweighed the risks. I have had no issues with extra bruising or bleeding. The meds have to stop for a few days before any surgeries but that is about it. Good luck!
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thats creepy, candy. I hadnt heard of a connection between mbc and tia's. I wish I could do more for you than just pray.
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Candy, I’m glad you got to the ER and had yourself checked out. Those symptoms would scare me too. Going on disability is a big decision. Is there a chance to take off some more days to gather your thoughts (and fully recover)? I sometimes find myself flip flopping over important decisions and doubting myself. It helps to mull things over and get advice from trusted friends or family (if you want to share this much).
My questions to you would be, how much do you like your job? Would you be happy/sad/both if you were to leave it? Could you manage financially without the job? Can you see yourself enjoying being at home more?
I’m 59 and retired 2 years ago. It was a long range plan for me and I was mentally ready and very happy to give up the stress. I’m not sure I could still be handling my job now with my brain fog and increased fatigue, but being home it’s not terrible. I’ve heard the effects are cumulative, so I give you a lot of credit for working this long.
Sleep well tonight, be gentle with yourself.
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Thanks all for the well wishes and prayers. I need prayers so much right now.
Rosie-- I would have no regrets leaving my job. When I was diagnosed with MBC, my position in the company changed. I took a HUGE pay cut and am doing a job now I don't enjoy with a new group of people I don't like. My "career" is over. I am concerned about the finances. I looked into the Social Security Disability payment on the online Social Security Website and the payment I would receive is comparable to what I make working this job full time. The insurance issue is the biggest hurdle-- either Private Policy or COBRA until Medicare kicks in in 2 years. That is why I need Congress to move that Bill along into Law. I was discharged from the hospital on Sunday afternoon. I was scheduled to work Monday, but called in and didn't go. I work again this Thurs and Friday. I plan on going to work then.
My plan is to talk candidly with my MO at next Monday's appt. Get her views, in light of the new TIA. My previous MO, when I was first diagnosed, wanted me to continue to work. He said patients that continued their lives as normally as possible did better long term. That was in Sept 2017. Now I am 1 1/2 years into this, and still 'stable' on scans. BUT now with a TIA. Will I never have another mini stroke or will I have more small ones OR a big stroke???? Do I go ahead with Disability now or wait for the next issue to come up????
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Candy,
So glad you went immediately to the ER and got things figured out. Forgive me if you have already answered this but have you actually talked to your HR department about your disability benefits? Mine were better than I expected/assumed, so once I made the call it was a relief. I practically cried knowing that it would be feasible for me to go on disability. It might be possible that you will be covered for health insurance during a period of short-term, and then long-term disability. Since you work at a fairly large organization, I would be surprised if you had no health care coverage at all for the two year wait for Medicare. Just my 2 cents. It really sounds like you would be better off going on disability if you can swing it. We don't want you having any more of those TIA's. It was amazing to me how much better I felt once the pressure of work was taken off of my shoulders. I don't think I would be doing as well as I am if I had continued to work in my stressful job. Best wishes to you.
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Candy 678 we all have different circumstances, ages, health and finance. When I was diagnosed stage 3 in 2003 I took off for a year for treatment. I was on disability and I worked for the county. Amazingly through a sick time pool and other acts of kindness I was able to make it financially. The treatment back then was very strong chemo radiation etc. it would’ve been near impossible to work.
Stage 4 I was 61 and running a 501c3 super stressful and intense position. I also worked a per diem counseling job simultaneously. I quit the 2nd job immediately even before the diagnosis. I wasted no time when I got my diagnosis even though I didn’t really feel “as sick as before”, I applied for disability. Then I had to wait 6 months before I received a check. Lean times for sure and I hope you don’t have to go through that period of waiting.
I don’t regret staying home at all. I’ve worked all my life giving my best to my career. I know it’s time for me to take care of myself and spend this time with my family and friends. Sometimes I dabble in things I like, or not. I have a choice to sleep in when ibrance is causing me fatigue.
I have had some feelings of wanting to be productive and have channeled it into other things. The big difference is that days that I’m feeling good I do what I want. I plan vacations, staycations, and don’t have to worry about vacation time etc. I try to budget my energy for what I want to do the most and when I put it in that context I never choose go to work
I hope that you will see through the workforce dilemma and choose what’s best for you.
Much love, encouragement and support for whatever decision you make.
Tanya
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Chicagoan--- I have talked with HR. I would need to use up my current vacation/sick time first. But, I think I would need FMLA to do that or I would violate my company's attendance policy and be fired if I just call in sick a lot to use up the time. Once the vaca/sick time is gone, then I could do short term disability through the company. That is for 3 months with 50% pay and health insurance still. Then we would go to long-term disability. That is 50% pay BUT NO HEALTH INSURANCE WHATSOEVER. If I understand it all correctly, the SSD payment would be more than the long term disability from the company. So it would be wise to go the SSD way after the short term disability 3 month option. So I would have a 2 month time of NO pay from the end of short term disability and when SSD payments start. And no insurance after the 3 month short term disability window.
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Candy,
I get both long-term disability from my company and SSD. The long-term disability kicked in after 90 days of not working. Once the SSD began, the long-term disability payment was reduced by the amount I receive from Social Security. Maybe you also could get both? The amount I receive now for long-term disability is small but it still helps. In your case, it might help bridge the gap until the SSD payments start. That's a drag about your health insurance which I'm sure will be a big impact on your decision. As Tanya says, we are here to support you in whatever you decide is best for you.
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Thank you Chicagoan and others for having my back. I am leaning toward the decision to start the process for disability. I have an appt with my MO next Monday and I am going to have a frank conversation with her. This TIA has made me think it is time. I may not have another and I may be cancer "stable" for a long time. Or things could go south fast--stroke or progression. And I fear that I will not be in my right mind to sort through all this paperwork and processes if I wait until things go south. I am single and figuring all this out is solely on me. I hope I am not making a mistake. I will continue to reason it out this week. Cannot do anything until MO visit Monday, so time to change my mind.
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Candy;
When I was 55 I also had a TIA. I was then fighting stage 3C her2+ bc. I was referred to a neurologist who put me on a blood thinner, heart med's and an anti-cholesterol. I didn't have high cholesterol but my TIA was a lacunar which is in your head and they want the least amount to build there. I am now 70, still on the same medication and have not had another. Prior to having the TIA (which happened in IKEA of all places...numb arm and confusion) I had had a brain MRI to check for brain mets and they found I had had a stroke at some point. At that time they just had me take aspirin.....after the TIA they decided to take things more seriously. Oh and I also lost my drivers license for 6 months and had to go through all the tests you take when you have a stroke before they would give it back. I live in Ontario, Canada and apparently that's the law. I was a single parent with one child still at home but worked in the financial services industry. As soon as it was known I had a stroke they very quickly offered me disability....worried I would make mistakes which given my chemo brain I'm quite sure was a good idea. I have never regretted retiring and have certainly enjoyed the lack of stress. Money is tight but I manage and of course am very lucky living in Canada I have no health or drug costs to worry about and am covered by my firm for any extras.
Best wishes to all,
Cathy
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I'm sorry to say the prospects for the bill changing the SS Disability law do not look good.
See below:
https://www.govtrack.us/congress/bills/116/hr2178
The system has always been appalling to me, putting many in an impossible situation.
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Ooh ladies, the fight ...and it is just that...for retiring, or stopping work. I’m in a similar situation, not quite yet done at 54 but getting the financial ducks in a row in the next few months and the employer protocol. It is just exhausting ....
I will retire...and that is how I frame it...not giving work up because of ill health, even if that is the actual truth!
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PatgMc----- Thanks for the post and link, but WHAT THE HELL. 5% chance of passing !!!!!!!!!!! What the **** is wrong with those Congressman/women????!!!!!!! I hope they get MBC----serves them right. Wait, they are rich and have healthcare so this would not effect them.
Can we --- our community of women/men --- do anything to change their minds?? They are supposed to work for us.
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Candy, google the email addresses of your Representatives or call them. I do this a lot.
They will only go out on a limb for things that will help them get elected again. The other reason they support bills is because they've been lobbied and there are no lobbyists for sick people, unfortunately.
Love from PatGMc
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