Ibrance (Palbociclib)
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I read the whole bill and was actually shocked that they got an exception for ALS in there! But why on earth is that the only one?!?! I think a 24-month waiting period, for so many conditions, is horrifying.
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I wanted to post a Thank You to all who have supported me in my question of whether I should pursue Disability. I got to thinking. I called a friend last night and ask her opinion, and I ask you all your opinions, but I failed to ask God. Some of you will understand this, others will not. I did not ask my Lord and Savior what I should do. What is His will. So I asked Him today.
I would like to pursue the possibility of SSD. I don't want the headache of work anymore, I want to enjoy my life. I fear the next thing around the corner--TIA, stroke, or progression of cancer.
I plan on talking with my MO at next Monday's appt. And the process with HR--Short Term, Long Term Disability, and applying with Social Security-- will be a long, drawn out affair. But if God approves of this, the doors will open. If not, they will close.
Thank you all for reading my posts, responding to them, and please keep me in your prayers.
This is a big deal, a very big deal. I have worked since I was 15 years old, 35 years. Never without a job. And I would not even be thinking about quitting if the cancer had not come, then the TIA.
Thank you and HUGS to all.
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Hi, I have had 1 shot of lupron(april 30th) , 2 times I have gotten the Faslodex, take the letrozole every morning since April 30th and now started Ibrance last week. Next week I start Xgeva, get 2nd shot of Lupron, Faslodex (3rd time) ..my question is about Ibrance the pharmacist told me to take it with food which I was doing. I was taking it in the morning along with the Letrozole, 400mg of Magnesium Citrate, 4000 IU of Vit D3 and my probiotic. I switched though to taking the Ibrance at dinner because I didn't know if I should be taking it with all those other things (although the pharmacist said it should be ok). Can anyone tell me does it matter when I take it (I know take it same time every day) but is it better alone or with other meds or better with a bigger meal (like dinner?)
TIA
Nicole
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Hi NicholeRod.
Since Jan 2017, I have been taking my Ibrance/Letrozole in the morning, with food, plus my B complex, Citracal, Vitamin C, D3, and fish oil. I also take the second half of the fish oil and citracal at night before bedtime.
Since I drink coffee in the morning with half and half, I also take lactaid as I am lactose intolerant. This also helps with the Ibrance as it has lactose as an ingredient.
I was diagnosed with liver mets and I have no problems with this routine. My MO knows this and has no concerns.
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Tanya, I like the advice you gave Candy. Nicely stated.
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This is crazy and mean, one of the richest nations on earth, yet we push people to wait two years for medicare, causing many who deserve it to never even be able to collect it
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Candy, I was remiss in not suggesting that you pray and ask God for an answer. Forgive me. My faith plays a big part in all of my decisions. I also live in California which has an excellent state disability program (you might check Illinois). It kicked in immediately and covered me 60% for one year---enough to fill in the time until SSD kicked in. When I used up all of that (there is a max so check it!) I was able to access my long-term disability which was paid for by my employer. I didn't even know! See how God works! Sounds like the insurance part is the mountain that needs to be moved for you. I was fortunate in that I was able to spread out my employment using up all of my many sick and vacation days first. I worked just a few hours a day for a couple of months. Then I was able to switch over to my DH insurance. He happened to work for the same employer (a large university.) When he retires in August we will go through the mounds of paper to access Social Security. It shouldn't be this hard. I am finally beginning to think that National Health Insurance may not be so bad as we've been told all these years. My SIL can't afford the meds she needs and struggles needlessly everyday. It is criminal.
Nichole, you will find it doesn't matter when you take your Ibrance as long as you are consistent and take it with food, especially fatty food. I take mine at dinner because I am most consistent then and eat a good meal. I am not good with breakfast. You are wise to check to see if there are any interactions with other meds, but know you can't eat grapefruit or pomegranates. All of this should be in the literature if you need to recheck it. So much to learn and think about!
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sandibeach thanks.
Into the light and candi I forgot the prayer part. Yes I prayed on my knees begging for guidance before walking away from earning money. I started working at 14 as a “custodian” at a high school on summer break. I walked to work with my friend and was happy to go. I loved getting a paycheck for the first time. Didn’t love the scraping gum off the bottom of desks, scrubbing graffiti off of lockers. And cleaning blinds but the “real custodians” were kind to us and allowed us to drink coffee with them and eat pastries before starting. My two older sisters worked with the same youth program, but they worked in an air conditioned library.
Tanya
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Oh my ladies...I am having doubts.
I am going to try to post on the thread for Disability also, but those with SSD question....
The ESTIMATE on your Social Security Statement that says " If you become disabled today your payment would be ----". How accurate is that????? The amount on my statement is doable for me. I am single and my income is the only income. BUT if the real amount granted to me is smaller I will be hurting.
Those that get SSD, was your payment about the same as the estimate????
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candy -678, I hope you find peace whatever your decide. I took early retirement and accepted a lower pension from my employer because it was paid early. I loved my job, but do not regret my decision. I live in the uk and we don't have to pay for our medical care [other than national insurance contributions while working] benefits payments are available if you need them. It must be incredibly difficult to second guess what 'may' happen in the future and make a decision. My thoughts are with you.
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Okay, not wanting to get political AT ALL - but if anyone has a reasonable Democratic congressman in their district, please try to get this bill a co-sponsor! King is a Republican, so therefore has ZERO chance of getting a healthcare-related bill advanced... I would try, but there are no congressmen in NJ willing to put their name up under a Republican's. Sad, but true.
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New drug granted Fast Track status for MBC.
https://www.onclive.com/web-exclusives/fda-grants-...
It's interesting to go back and read this from 2010 on the drug:
https://www.nejm.org/doi/full/10.1056/NEJMoa080869...Love from PatGMc
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Oh my..I just suffered a rib fracture by merely coughing, I will keep close watch on this fast tracked drug.
Thank you PatGMc
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Hi all - I've been absent for a bit.... no particular reason, just got really busy and then when I try to catch up I run out of time to read it all and then the same thing happens next time and then I get too lost to respond! So I'm just going to jump in and not worry about catching up. I do pray for all of my friends here and I think about you all so often.
Anyway - Candy, I'm so sorry to hear that you had that awful experience of a TIA. I hope you are able to figure out a way to stop working if that's what you feel you need. Work is a challenge with this disease but I do still value the distraction that it provides. And I'm not ready to figure out the financials. But others have done it and made it work.
Divine - I am also outside of Pittsburgh. I don't remember if I knew this about you or not but I go to the Hillman Cancer Center. I don't know where you are located (I am near the airport in Moon) but studies have shown that outcomes at NCI-recognized Cancer Center are indeed better. Hillman is an NCI-recognized center so it's really great that your gyn referred to the city (Although it is possible you are at AGH?)
I'll try to keep up from here!
Love to all,
Lauren
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Good evening all. I should be starting Ibrance/Fulvestrant sometime in the next week (lung nodule, intramammary and hilar nodes positive for cancer-trying to update dx). My DH retires from the military the end of August. When did folks feel settled on the medications? We have such a short time frame for starting and then switching treatment and moving our lives to our retirement home in SoCal. This has been whirlwind nightmare. Thanks for all comments.
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movingsoccermom— I was diagnosed in late february and started ibrance and faslodex in March. It's taken me about 3 cycles to get into a groove and have some sense of what to expect. For me that looks like: 2 appointments/mo. One for my faslodex injections. Be sure to check out the faslodex threads on here— it's two long duration shots with long needles into the buttocks, which for me is kind of an ordeal when it's happening and then the site pain after knocks me back for a few days. And it's taken me a while to figure out the tricks like taking your weight off the leg, massaging the site, etc. which can be helpful). My other appointment is blood draw, onco visit, and Lupron shot. The last week of the 21 day cycle on the ibrance is the hardest for me. Overall, I tend o have good energy in the mornings, and often need naps in the afternoon. I also have a burst of good energy after my rest week from ibrance. And I'm grateful for what I can get done in that window.
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My bottle just arrived today. Totally afraid. Horrible luck on Kadcyla. Finishing 10 radiation days next Tuesday and will start Ibrance shortly after. Have MBC metastasized to bone and bone marrow throughout body. This is hard. Makes first treatments 3 years ago look like walk in the park.
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NicoleRod, I wanted to ask how it is that you're on both Faslodex and Letrozole along with the Ibrance, Xgeva and Lupron. I've not heard of someone being on both of those. Did they discuss concerns with you that you'd use up both of those options so quixkly
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Just wanted to lend support on the disability question. I’ve been struggling too with this and in November went down to 60% time, with long term disability insurance helping to offset the reduction in income. I’d go out altogether if the health insurance could be worked out. I’d be eligible to pay both the portion I’m responsible for and what my employer pays - a cool $1900 a month - and I just haven’t figured out how to make that work.
It is frustrating to know that ALS has cut through the waiting red tape. It’s a devastating disease, and I’m sure it didn’t hurt that a great American male (Lou Gehrig) helped bring awareness to such high levels. Also, there are many more MBC patients so I’d think there are financial hurdles. That said, it’s effing ridiculous to tell someone who get a immediately approved for SSI that they have to wait on Medicare.
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Faithiebabie, I know it can be daunting to start on this drug, but so many of us have had positive results, especially with bone mets. I say all the time (literally, LOL - if you check my history, you'll probably find it every few pages!!), that if I had known what my results would be, I would have danced around the kitchen after taking my first dose, instead of bursting into ears. I had a bone met on my spine, that they told me they couldn't radiate because of its position. Six months after starting the ibrance, it was gone. Not smaller, gone. And a nearby lesion? Healed. Completely. Now, I'm not saying everyone has the same results, but it's a whole lot easier to have a positive attitude when there's proven results! I'm starting cycle 25 next week, and I've been NEAD since cycle 6, with no noticeable side effects but fatigue.
Wishing you an easy journey!!!
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Welcome to Breastcancer.org, Faithiebabie! We're so glad you've joined our community, and we know you'll find great support and encouragement here. Please, let us know if you need any help from us, Mods, we¡re always here!
Best wishes,
The Mods
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Jensgotthis which 2 drugs at the same time are you referring to? The Letrozole and Faslodex? No she didn't I will ask her about that. I think the nurse that came in before the doctor and mentioned something about not usually doing something together but then the doctor came in and said she was going to do both. My husband remembered the visit better than me...lol he said she said something about that she wants to go at this with all of it. I love that she is aggressive.
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Thank you Jenny!
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Pat, great, they are finally pushing forward to fastrack a SERD! The field has been raving about these new drugs forever but we never hear about them. The FDA fast-tracking this should add some punch to the headlines of ASCO meeting this weekend
And then that brings up Nicole having both Faslodex and Femara with Ibrance, interesting. There were reports recently that adding Faslodex to an AI gives better results and improves overall survival, but because the study was done in the days before Ibrance, it is no longer relevant- no doubt it would do even better in a 3-way combo, but nobody is going to pay for a trial to test that. I wondered why they don't just add on Faslodex when we get progression from Ibrance-Femara, why drop the Femara, its still working on lots of mets, just not on the new spots that appear...
One could worry it takes you through the anti-estrogens too fast, but now we have SERDs and these other Faslodex combinations that are effective even for those who were previously on Faslodex, that's probably not an issue.
The bigger problem is really the injections, how many years we want to be injected in the butt every month. So, the FDA fast-tracking this SERD, which is pill form and more effective than Faslodex, is great news!!!
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oh my goodness I would love to not get the Faslodex needles in the butt if I don’t have to. Please let this pill form become a reality ASAP!!!
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Cure-ious...I just remembered at one of my MO appointments about 4 weeks ago I asked her if it was true that "grade 3 cancers respond best to chemo and so if this doesn't work chemo might be good" and she said "Nicole you are no where near chemo yet and there are new drugs coming out all the time, and right now there is a drug awaiting approval that is be a game changer!" I wonder if it's the same one you are talking about!!!
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LaurenH, good to hear from you. Someone ( Jaycee?) had been asking if we’d heard from you. Glad to hear you’re busy
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Anyone on Ibrance and letrozole and not gain weight? This combo appears to be my starting point, which is hugely discouraging since my experience with Arimidex was an EPIC failure.
Thanks all!
PS. Have not figured out how to update my dx. IDC recurrence in the incision, mets to left lung, intramammary and hilar lymph nodes.
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Anyone have headaches and neck pain from Ibrance? I am not a headache person...today a headache started it feels like it starts at the base of my skull and and radiates over the whole top to the front. I don't want to jump the gun asking on the first headache but it's a pretty bad one I just didn't hear of that being a common side effect?
I am so afraid its from Ibrance.... I am only like 9 or 10 days in.
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movingsoccermom I have not gained any weight on I/L. Maybe I am fortunate? 🤷🏽♀️ I did lose a lot of weight when I was first diagnosed due to stress and grief and depression. I do exercise quite a bit (not that that always matters) but I try to take very good care of my body with diet and exercise...so maybe that is helping me?
Nicolerod: I did get some bad headaches when I first started treatments. And I am not a headache person. I had all types of strange aches and pains initially. I also have been on Lupron and Xygeva from the get go. So I couldn’t tell what was causing what. I would take Tylenol for the headaches and it did seem to help somewhat. The headaches could last a couple days for me before calming down. Now I’ve been on these treatments for over 2 years and the headaches are far and few between. Very rare that I get one now, and Tylenol or Advil always helps. Also drinking lots n lots of water. If I start getting a headache, it usually means I’m dehydrated. With Ibrance we need to drink extra water, to help with the toxicity load on the body.
One weird thing that I find that is new since being on these treatments is that if I push myself too hard or move too fast (like getting overly stressed or anxious), or trying to do more than I can handle, I will start to feel a headache coming on. It is like my body is signaling me to slow down, have some tea or water, and be calm.
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