I feel worse when I lay down at night. Does anyone feel the same? It feels better while moving around. My whole entire body aches. Any suggestions on what I should take for this joint pain? I have been on this treatment a little over a year.
I think it is getting worse instead of better.
Any suggestions?
Thanks,
Kelly
Liver Mets Dx: March 2018-Ibrance 125mg
Original Dx: Stage 1 - May 2002
stage 1 again: 10-2008
Gosh, Kelly001, I'm sorry for what you're going through! It might seem obvious, so forgive me, but some advil/motrin might take the edge off? Treat the symptoms to free up your mind...
Thank you. I do take Ibuprofen occ. It does help. I just do not want to take everyday.
Hi kelly: I also take Glucosamine Chondrointin 2xs day (too funny I gave it to my 11 yo black Labrador & he bounced around like a puppy for five more years; that was 20 years ago; I believe the first use was with horses or similar—I’m foggy on that.
I don’t know what the ‘MSM’ part or black cherry maybe I’ll add that next bottle.
Anyhow, I’ve been on I/L combo for 21 mos. & my first Mass Gen’l hospital MO never once mentioned glucos./chondrointin.!! The first thing my new Calif UCLA doc said was to take that. I believe it’s the Femara s/e not Ibrance and my 1st & 2nd said if ever too bad they can use Falsidex I think or other AI; but I’m too afraid to change the combo I’m on...if it ain’t brike🙏🤞🏻
Lastly, I do feel that being more active helps with that and other things; I use stationary recumbant bike even 10 mins 2-3 xs day helps. I just got a recumbant trike (3-wheeled); it’s wonderful & DH is adding electric to it somehow for hills! LOL; it’s a bit embarrassing as I’m only 54 yo; but I’ll get over that; first time in a bike in a year since I fell off my beach cruiser bycicle and I went 3.5 miles round trip; way more than the beach cruiser which had no gears! I slept like a baby and that combined with Glucosamine and sometimes Tylenol (not sure we can take Advil etc on these meds IL? ); but I’d say it’s improved things to 50%. I guess I kinda think that by keeping busy it sorta wills it away;
For me It’s the worst (I’ve told my docs I feel like I’m 90 yo since starting this; but grateful it’s not constant; could be worse; just praying combo keeps working for everyone; feel like days are numbered; but the UCLA doc says he was in 1st trial and personally knows a lady on Ibrance combo for “8+ years”) on week four when I’m off the Ibrance and a few days into the 1st week of cycle. I am on disability and find that helps cuz I do not sleep at night too well; but I can fall asleep between 1-4 with Ambien/Ativan until 10 ish; I’m toast if I try to get up earlier—I credit those who work with Stage 4; IK sometimes it’s for insurance reasons; but, Medicare is available and idk if they pay I/L or not?
Sorry to ramble. Nite all!
Lol 90. Me too. I feel the same. I do need to get more active too. That's great you are. I need a bike. Maybe I will get one. I think that would help me too.
I think I am about to file for my disability bc I still work some (very few hours a week) but it is getting tough on me. I just don't understand how disability works. I need to research more & just fill out for it and see what happens.
I am 48 but have worked most of my life but feel like it's time.
Thanks for your reply,
Kelly
Create a social security account online. It will tell you how much money you will collect if you go on SSDI at your age. They take the highest 10 years of earnings and have some sort of calculation going by that. As soon as you stop working, apply for SSDI. Being a stage iv is automatically approval for SSDI. File under compassionate allowance (with medical records showing you are stage iv) so that you get approved quicker. Realize though that from the date that SSDI considers you disabled (the day you stop working) that you do NOT GET PAID FOR THE FIRST FIVE MONTHS. So make sure you are able to live with no money coming in for five months. No way around it. I don't know why they do it but they do. Also, you will need health insurance because you have to be on SSDI for two years before you can get Medicare. That is another big expense that you need to look into.
About disability...we hired a consultant as several folks we knew were turned down.
If you have stage iv breast cancer, that is an automatic approval and you can get approved within two weeks if you file as a compassionate allowance, but again the first five months are unpaid. Yes, it can be very hard to get SSDI otherwise. If you have stage iv, you do NOT need a consultant. It's automatic approval. Just go to your local SS office, have your medical records which show you have stage iv breast cancer and tell them you want to file under compassionate allowance and within two weeks you would get approval letter. You do have to stop working though bc if you work, SSDI will consider that you are not disabled if you can work. I had a friend's husband who was denied after he fell from a contracting job. He had to get metal rods in his spine, etc. but he was denied bc they felt he could get a desk job. You usually have to get denied twice before an attorney will take your case bc they get paid based on any back pay you get to the maximum of $6,000. It can take long. Finally, it went before a Judge after a year and a half, and the Judge was so angry that he was not approved (with metal rods in his spin and all) that he gave him back pay from the date of his accident which came to close to $90,000 but this was after a year and a half of them also being broke and losing their home. Another friend's husband had a heart attack. He was denied twice by SSDI. My friend was supporting the whole family on on one salary. Finally his hearing date came (over a year later in NY) and their attorney said he would for sure get back pay which they hoped for since they were in debt. The Judge ruled that he could get SSDI going forward but refused to issue any back pay at all so on top of that, now they had to pay the attorney $6,000. Best of luck.
So I am confused I make under the SGA limit. I work very little bc that is all I can handle.
"In 2019, the SGA limit is $1,220 per month." If you make less than that, you can apply. If you make even $10 over that, you cannot apply for SSDI bc than they will say that you can do a "substantial amount of work." Apply asap if you are stage iv under compassionate allowance. You should get approval within two weeks, but it still you do not get paid for the first five months. You do not need an attorney if you are stage iv. Just bring your medical records and a letter from your onco and that should suffice. There is an unpaid waiting period. The sooner you apply, the sooner the clock will start ticking. Since you are still working, even though under the SGA limit, I doubt you will get any backpay since they will go by the day you are filing. Best of luck.
Thank you. I am Stage 4. I am thinking of doing this soon. My body says I can't do what I used to.😢
You can create a social security gov account online. It will tell you how much you will be getting a month. Like I said, they will go by the day you file and its five months unpaid first so make sure you have enough to get by. You should create the account online but if you are stage iv, its an automatic approval. Just have your records, so to your local SS office and let them know you are filing for SSDI under compassionate allowance. Your body lets you know when it is time. Also, you need to have medical insurance which I assume you have already. Many people usually, even if warranted, get disapproved for SSDI so we are "lucky" in the sense that we get automatic approval. Wish you the best going forward.
Ps I also agree 1st thing in morning is worst; I bought an adjustable “Bob-opedic” bed (they are like a hospital bed) which helps me get in & outta bed & hope someday for lift chair in living room! I had 6 surgeries related to Stage 1 BM w/tram flap reconstruction in 2010–so it’s not all from I/L convo for me. I also had crazy bad arthritis about 5 Yrs prior to 2017 METS DX.
One more suggestion: Epsom salt baths are amazing as well as gentle yoga for cancer patients and trying to get into mindfulness. Sometimes I splurge for 90 minute massage; actually I wish insurance would cover that; I’d have one 2xs a week or more! But Epsom bath for me is close to the relaxation of massage, yoga and/or mindfulness.
Hope I’m not too confusing; it’s bout 2 AM here!
Epsom salt I will get some. I forgot about a good soak would be good. Also, I too has several surgeries in 2002 due to my LMast.+ Tram Flap.
Thanks for your reply,
Kelly
PS We have all been through so much!😢
Thank you. I will def. Look into it as i need something.
I'm very achy in the morning. Once I start moving I feel better.
I think any activity helps. I walk or use my treadmill.
Exercise is key. I purchased a Euro shaper that has helped with blood flow and I do exerting that almost every night after work. I also walk and have recumbent bike that I use on weekends. I’m on I/F and so far my complaint is the week off. Sleeping is difficult and I’m more tired. I also recommend Tumeric with black pepper. It’s an anti inflammatory and I feel it really helps with inflammation. I’ve read a lot about it. I take many supplements for my immune system and they seem to help keep me healthy., Hope this helps, best of luck.
I have RA and the inhibitor and Ibrance combo has continued to worsen my condition. I've had to stop the inhibitor, but the damage is done. My Oncologists's assistant prescribed an anti inflammatory but it hurt my stomach so badly that I was sick for days. So now I'm labeled "a challenge ". I'm not sure what the next step is. I'm trying to take the inhibitor every other day, but at night my joints ache so badly that I can't get comfortable. CBD oil helps.
Thanks. I am going to start supplements too & excercise more too.
Kelly, I was on Celebrex for arthritis before I was diagnosed with cancer and when I had to go off it for several days before procedures or whatever, I could really feel the difference in places I'd never had a problem with before. It is an Rx med but you should be talking with your onc about how severe this side effect is for you anyway. If you are going to stay on these meds, ask about Celebrex for your joints.
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