@brutersmom Im on steroids and I too feel shaky inside. But it’s worse than “shaky”. It feels like a GIGANTIC overdose of caffeine. It’s very hard to describe just how unsettling the feeling is. It makes me feel like it’s a labor to breathe. And even though I’m exhausted, I can’t sleep. You would think that I’d be buzzing around cleaning but I’m too exhausted. Instead I’m sitting on the edge of my bed typing this while my clean sheets are balled up waiting for me to make up the bed. I too grapple with finding the right words to explain it to my doctor so I’m not going to be much help.
Rk2020 I remember that feeling of high dose steroids from my younger days when I would get sever asthma flairs following a virus. That was a horrible feeling. The first 24 hiurs i would get a lot done then I would be barely functional until I got down to a low does.Sending hugs.
I wonder if "over- tired wired" describes some of it. I know when you can't describe the symptom it
weakens the explanation.
Hope you both get a good night's sleep very soon- it really changes then scenery
Why are you on steroids? What kind of steroid? Route? How long? Are you on a gradual dose reduction schedule? Steroids terrify me, which is why I ask.
I don't have much to offer, but the type of symptoms associated with restless leg syndrome come to mind. Reading a description of that problem may give you some helpful descriptive words. Also emphasizing the negative affects on the your quality of life. Another thought…..do you think vibration would help? Growing up everyone in my family had a bed vibrator (~18 inch diameter disk) with a timer for under the mattress at the foot of the bed to help with falling asleep - it worked. There are newer options along this line of intervention. Hope you find relief. Please keep us informed.
Weninwe. My issue is a sever psychoneurological response to letrozole not common. I am just working though the side effects to obtain quality of life. I was off letrozole for a month and started on effexor. Effexor has helped me a lot. But still having some sleep issue. This is a letrozole issue. I was through this back and 2015 and quit meds. I can't help but feel like adding vibration to the mix would only make me want to pit mutual my fist through the mattrest.
NkB. I don't think your description as that far off. So far the suggestions that best fit are edgy, stimulated but exhausted, overtired and wired.
@weninwi To make a long story short, I was experiencing pain in numerous areas that we suspected were inflammation related. I was given a low dose of prednisone- 10 mg. I was told to start with 10 mg but that I could break in half if needed or double it if needed. 10 mg was a game changer. I felt amazing! I haven’t felt this pain free since 2019. Then after a few weeks, sleep became an issue. I tried 5 mg but that wasn’t enough to get rid of the pain. I tried 5 mg twice a day. That wasn’t enough. I tried weaning off completely but I was miserable in pain again. I think I felt even worse because I had gotten a taste of what pain free living was like. Then I tried taking in pm vs am (I know that sounds counterintuitive but the jitters take hours to set in). I’m going back to 10 mg at pm tonight and I see my MO tomorrow. When I was on chemo and Neulasta for early stage, I took a Medrol dose pak for bone pain. I don’t remember any side effects then but I was also taking Lorazapam before bed. And I think a dose pak is only 5 or 6 days.
Just wanted to share this article with everyone.
We have had a cool dry spring. I am a summer person. I have always love hot weather. I think my meds are about to change that attitude. 80 degrees outside the walk from I m my car to inside the gym cause a hot flash. Ugh. First one during the day since starting letrozole in January.
I have a UTI. Must I stop Ibrance whilst taking antibiotic? My abx is Cephalexin, generic for Keflex. Unfortunately I suffer from UTI's mostly due to MS. This is my second one since starting Ibrance 3 months ago.
Irish contact your care team.
Hi Brutersmom, I did give a call but they are super busy and haven't gotten back to me. It's almost time for Ibrance so I guess I'll skip it until Monday and call them again. Thanks
irishlove, what about contacting your pharmacist? I don’t know anything about drug interactions, but I am not sure why there would be a need to hold Ibrance while on an antibiotic. However, I think a pharmacist could answe your questions.
@divinemrsm What a great idea. Fortunately the MO office called and it is OK to use cephalaxen for UTI and IBRANCE.
Wanted to post new info I found out on IBRANCE. MO said it crosses the blood brain barrier.
Good to know Irishlove-I wasn't aware of that.
I saw on another thread that you had a dramatic shrinkage in your tumors in your first three cycles. From what I have seen on here, this is a really good sign that Ibrance might work for you long-term. This is only anectdotal, but it seems that those of us who had long runs on Ibrance responded quickly to the drug, while those with shorter runs-around two years, didn't see much shrinkage until 6 months on Ibrance. Hope it continues as a miracle drug for you.
I just need to vent. My Dr provided a medication to relax me so I can sleep. I have had a sever psychological reaction to Letrozle and it take 2 meds to control it. Medicare refuses to pay for one of them. They denied my appeal. It is a relatively inexpensive drug. Apparently having stage 4 cancer and other issues is not enough to get approved. I paid for a month's supply to try it and it has helped. I guess they would rather pay for more expensive drugs.🤬 I am
@brutersmom That is unreal. How infuriating. 🤬
brutersmom, vent away! Your frustration is understandable! Please see if there is another way you could get help in paying for the medicine that is working for you. Try checking with GoodRx to see if they have a coupon to get it for less. I did that with several meds I used to take and saved lots of money that way. The coupon is used in place of insurance. You could also talk to your doctor or doctor’s office. Tell them Medicare won’t pay. See if either the doctor can prescribe something similar which is covered by Medicare, or see if the doctor’s office knows if the company that makes the drug offers any financial assistance to pay for it. Good luck!
Devinemrsm. I am using a discount program. I am just angry that medicare refuses to pay $70. If I don't use the second med I don't sleep. My next alternative would be to move to fulvesterant which would cost over $2,000. There logic is stupid.
@chicagoan Why thank you so much for your information. I'll take anecdotal, superstition or any kind of luck with Ibrance! I first figured it was working after 2 months when the pleural effusion had dried up completely. But I didn't know till MO gave me the "miracle" news. Hoping to feel a bit better soon.
Chicagoland. My pleural effusion was gone in 4 weeks of starting letrozole I am doing really well except for drug side effects. My ca27 has dropped to 33. I am just wait for that 6 month test to know where everything is. July is 6 months. It is hard to wait.
brutersmom, does your pharmacist have any options for you? I've "heard" (AKA, I read it on the Internet, so it must be true) that some meds are cheaper WITHOUT insurance. It's so stupid. My Ibrance is going to cost a boatload when I start Medicare Part B. Cancer is stressful enough without having to take meds we can't afford!
I take Verzenio, not Ibrance, but the cost of that too is prohibitive for most. I was told that it's (Verzenio) actual cost is $13,000 a month and that with my Medicare Part D and supplement, my co-pay would have been something like $3,000 per month. Well that was all too much for me. My cancer facility automatically signed me up for something with the drug company where I currently get it for free. I started taking it in May, and they approved me through December at least. The income threshold to qualify was actually pretty high in my book - up around $75, 000 per year. Maybe they have something like this for Ibrance too. Check with your cancer center.
I thought my Ibrance was going to be a lot higher when I turned 65-up until that point, it was free to me with the co-pay card. It's turned out that it is only costing me $93/mo now-much less than I expected. I did talk to Pfizer prior to turning 65 to see if I could continue getting it free. There is some sort of program but my income was just a little bit too high. Certainly worth checking out.
Brutersmom-sounds like you've also had a good response to Ibrance. I'm surprised your scans are at six month intervals. Mine are now but initially I was scanned every three months to make sure it was working.
I've also heard from friends that drugs are cheap on GoodRx if you get a membership. I may have the name wrong.
My hospital pharmacy got me a $9000 grant to help pay for ibrance. Won't pay for all over it but I will be able to cover most of it. Next year medicare has an out of pocket cap. Chicagoan. I think the reason for 6 months is one because I responded so well to the meds and two because my only met is 2 cm x .3 cm in my lung plus pleural damage. Nothing else was found in my original catscans or bone scan. Plus my ca27 kept dropping and last month it dropped 40 points to normal. My lungs have been clear since March which the docs find surprising. One doc I saw while my regular oncologist is on vacation in April said she could not believe how clear I sounded. After 3 months.She would have to order a scan just to see what was going on. She was quite a character and very knowledgeable. Then she commented that I have the best educated oncologist on staff I will respect his time frame. LOL.
Did you know if you go into your profile setting you can turn on notifications for posts? I just discovered it. What I didn't figure out was how to add my picture which is what I went to do.
Hi folks. I caught up on your posts and wanted to add that Pifzer Patient Assistance program did approve me for Ibrance free of charge till end of December. I can't for the love of pete figure out why only till December as it was based on one's Income Tax Return (2022) and let's face it, we can't file 2023 until February when we receive 1099's, etc. Guess we all will figure it out come December.
@brutersmom, That's so darn infuriating insurance will not cover your needs. I keep fighting Humana for the drug, Amitiza. It works so well for Irritable Bowel Syndrome with Constipation for me. They will only approve Linzess, which makes my IBS-C actually worse. The GP keeps trying every 6 month appts. They also would not approve Kisquali as first line treatment for Stage 4 MBC. Who knows if they will as 2nd line treatment? I'm sorry you are in this struggle.. grrr…
Brutersmom, that is wonderful that you got the 9K to help with the Ibrance. Now, about the rest of the cost…
Irish, I’m glad Pfizer is helping you, too. The cost is astounding and I’m thankful I have not paid anything so far.
IrishLove. Everything in the medical world is based on the income of the year before. For me it is a good thing. So in 2023 they use 2022. In 2024 they will use 2023. I doubt I will qualify for anything. In 2022 we sold one of our rental units. That went on my 2023 taxes which raise my adjusted gross income to a very high number.
Sunshine99. I am not to worried about the rest of the costs. i have savings and IRA's I am just happy I am doing as well as I am.
A while back I shared an article with with my husband. He says he read it. That is a ?. I said that I would like to do somethings together while I am still in good shape and strong. His response was you worry to much about the future. That is all you focus on. You need to focus on today. He didn't seem interested in making plans. I don't have a lot of energy on these meds so doing things alone gets hard. He always wants to do stuff in the evening generally around 8 when i am done in for the day. I've thought about friends but I am not sure if any are much different then my husband. Just feeling misunderstood