Ibrance (Palbociclib)
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Took me awhile to find the Ibrance board. I'm so glad I did. My insurance company, just today, called and said they would not authorize the Ibrance. She indicated that there is a possibility that with a written order from my onc that it is necessary for me it may be approved. Of course, my luck - holiday weekend. Onc office closed. I haven't even started any treatments yet. 2 buck-shots to the butts starts on Wed 5/30. This is just B---S---. Don't we have enough to worry about without having a lifeline taken away from us? Is there any thing else out there that is comparable? I'm trying to stay calm and not to get too stressed over this. Nervous enough about the bone mets. You all are just great listeners and so knowledgeable. Don't really want to be here (as I'm sure we all feel that way), but at least we all can relate.
Hope you all have a good Holiday. Hugs !!!
crissy
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Crissy, your cancer clinic should be used to this by now and they know just how to word the letter to get you covered. It can all happen really fast and the Ibrance will be overnighted to you. In the meantime, the cancer clinic can also get a bottle of free Ibrance from their drug rep to get you started. Pfizer also has a program where they give the drug free to those not covered. There is also another similar drug, Verzenio and I think that manufacturer (Lilly) has a plan where you can get at least three months free. Please don't let yourself get stressed. Get your shots and know that there are people who do hormone drugs alone who have no disease progression. But, again, don't fret about that. Your doctor's office can handle this and waiting a few days won't hurt. I'll be down here in Memphis praying for you!
https://www.ibrance.com/?source=google&HBX_PK=s_ib...
https://www.verzenio.comLove from PatG
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Hi everyone, I've been taking a break from thinking about cancer. I was getting obsessed with researching and writing so I decided to put my head in the sand for a while and take my mind in other directions but as I had a PM from one of you gorgeous girls checking on me I thought I'd better pop in and say hello and let you know I'm fine. This is such a great group. Welcome to the newbies, you'll be glad you found this thread and all the support and knowledge you'll be given so generously. We care deeply for each other and there's never any criticism or judgement. It's a safe place.
I've signed up for an Open University short course called Science: Genetics and Health Issues. My course material hasn't arrived yet so I'm not sure how many hours I'll need to put into it or how my humanities based brain will cope with the challenge of a science based course but I needed a challenge.
I know from another thread that we've lost some of our members lately and I'm sending hugs to all. I'll try not to be AWOL for so long in future. I don't like to be unaware that any one of us is in trouble.
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Chrissy, Pat answered you so well and I just want to echo what she said. Call your onc office--they can help you. Don't fret about a few days as your hormone drugs will be working in the meantime. Hugs!
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WANDERING, ask your insurance company for help in finding a couple of clinics or oncology offices along the way on the trip - you don't need to find an actual doctor. My oncologist told me that if I wanted a vacation that interfered with my schedule, all I had to do was call my insurance company to find someone to inject it, and she'd arrange for the Xgeva (I was getting monthly shots at the time) to be sent there. Any lab can do the blood work, and have the results set back to your onc's office. She also recommended that my Ibrance be sent to the same place, for pickup, as well. And if my 3-month visit didn't coincide with the time I'd be back, we'd push it off a month - no need to be tethered to my onc's office!
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Hello Everyone. I don’t post often however I do follow daily and now need some advice. I have just completed 21 cycles of I/L plus monthly Xgeva. I have been having 3 monthly Ct scans & 6th monthly bone scans. At present I just have extensive bone mets to spine, ribs & sacrum however my last scan showed that I may have progression (a fairly well defined sclerotic lesion within the glenoid neck of right scapula). As I am on a trial in the U.K. my Onc is going to have the scan checked by another Radiologist. I have tolerated these meds very well with my main problem being hair loss and of course lots of aches and pain. My question is what next? I would be very grateful for any advice /suggestions.
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Ciaci: When you referred to the insurance company, were you talking about my secondary health insurance company (have Medicare as primary) or the prescription drug company?
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Candy- Working a new job is doable. I did go back to work for a few months last year and found it relatively easy to get up to speed with a new organization and the work itself. That said, I had no other responsibilities and got plenty of rest. The job lasted three months and I was happy to retire again when it ended. You will know what is best for you!
There are many 2nd line treatment options available! Bestbirds guide has great advice and it can help guide discussion with your MO.
Taking a break to await better wbc numbers has been okay so far. It’s hard to avoid worrying!
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Janky,
My wife takes maitake d extract, and at other times takes AHCC. Both are mushroom extract concentrates. I have no scientific before and after while on ibrance to back up any claim that the work, but they did work significantly to over double her neutrophil count after finishing chemo. Even years after her initial chemo her neutrophils were consistently low, but after only 3 weeks on various mushroom extracts, her neutrophils over doubled. She has continued without stop on various mushroom extracts since before starting xeloda and then ibrance. So I have no before and after to compare and say what its impact is on ibrance induced neutropenia, only the results we way at about 4 years out from finishing chemo.
If you are going to try a mushroom extract, look for a standardized extract, ie certified content of extracted active ingredient, and take the full recommended dose, as response is very much dose related. Also, too much is no good either, and begins to suppress some aspects of the immune system.
Personally, I recommend either maitake D extract or AHCC because both are well researched and available here in North America without prescription. Both have good research to tell you exactly how much is optimal to take.
For maitake D extract, mushroom wisdom is about the only brand, and is available in regular and 4x dosage. For AHCC, it is only made in one factory, so any reputable brand contains the exact same AHCC. You will need 5-6mg per kg of your body weight each day with maitake. That means a lot of drops of even the concentrated extract. For my wife, she takes 5 mg/kg daily, and that amounts to 37 drops twice a day to reach the target of 275mg per day for her body weight.
It costs around $3-4 per day. The price is about the same for both maitake D extract and AHCC.
About all I can say, is try it for 30 days and see if it makes any difference. The risk of harm is negligible.
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Husband11 - Thank you! That is what I am thinking - try it for 4 weeks and see how the neutrophils respond. I cannot imagine any really serious consequences after 4 weeks
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Candy, I was feeling punk earlier when I read your post and didn't think I was in the right frame of mind to answer, but realized that might be the point. I went on SSDI at dx because it was best for family finances, but also to eliminate stress. Of course you know what's best for you and your family, but do consider how much stress adds, well, stress to your physiology.
Chrissy, glad you found us. Patg has the goods and the links. When I was dx, my MO gave me the option of doing Femara alone and holding Ibrance as a 2nd line of treatment. Know that hormonal therapy alone is effective.
Chico, so sorry to hear of potential progression. Forgive my ignorance, but scapula is still bone? If so, and you're otherwise progression-free, I've read stories from others that have stubborn bone mets that get them radiated while staying on same treatment. When I had an early scare of progression to liver (turned out benign) I was headed for some type of taxol. There are many 2nd line options and as long as you have a good relationship with your MO you will find the right path. And of course we are right here for you every inch of the way.
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Good evening all,
It's Ramadhan for me so I've had some late nights lately. Not fasting of course but attending outings with family.
Tropa congrats on good results. Enjoy your happy day/weekend!!
Piggy I pray your surgery went well and you are healing well. I had a hysterectomy last year June 2nd. I was scheduled for ovary removal but it turned into something different.
Seaway happy dance with you for your good results.
Wandering I thought that maybe you could make arrangements in Alaska for the shots to be ordered at another ONC office similar to how dialysis patients travel and get treatment anywhere.
Peculiar girl I hope you feel better.
Cathy age and quality of life helped me with my decision to stop working. My job as a social worker was very stressful and the hours seemed like forever/unconventional. I still volunteer once a week but I knew that I didn't want to continue with the hectic demanding job schedule that I had.
Crissy please ask your doctor's office if they have samples. My doctor forgot to put the new perscription in for my order and I called and they told me to come in and I got a full bottle of Ibrance and it said on it sample. It won't hurt to ask.
Take Care All
Tanya
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Tanya, I was thinking about Ramadhan and wondering how health-challenged folks handle fasting. I love the spiritual reflection, but when chemo is involved, is there a work-around?
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Happy for your news Piggy! Thats a remarkable response and i hope it continues for years
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Jaylea thank you for responding. I have had 2 x radiotherapy in the past, but not to this area so I will ask my Onc about that. Although it is not causing any discomfort unlike the other areas. I really wander whether depending on where you have mets ie in my case bone if some 2nd line meds work better than others. Of course I am still hoping that it is not progression.
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Wandering, sorry for the late response - we went to a wedding in NYC yesterday, and between meeting up with friends and traveling into the city, it was an all-day affair! Can't believe I was up at 5 AM here!
I have Horizon Blue Cross, and I call them for help all the time; I'm assuming there's a patient services line at Medicare as well. Once they help you find a clinic/office that you can get the shots at, either they'll call the place, or give you the number to call to set it up. Then you can call the prescription company to make arrangements to have the stuff sent there. If you start with Medicare and explain what you're looking to do, I'm sure they can talk you through it. Good luck!
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Thanks to all of you who responded to my post. If anyone wishes to respond, please do. Also, How often do most of you see your MO? Is monthly doc visits the norm? I don't want my MO decreasing my office visits to accommodate my new job. My health is more important than the job.
Jaylea- The SSDI issue is driving me CRAZY. It is soooo confusing. I have posted about this before. I called my local Social Security Office and was told I did not qualify if I can hold down a job. I did tell them of the Stage 4 diagnosis and this didn't seem to matter. As long as I am ABLE to work, I must. I am single with no other income. And I have health insurance with my job. No job, no money, no insurance. They told me IF I did not work for 12 months, then I could apply. Who can live on no income for 1 year??? I wish I could get SSDI. Then I could work part-time, not full time. Or maybe do volunteer work. Less stress, less fatigue.
I will keep you all updated on my decision on the new job offer.
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Candy, as far as office visits, I see my MO every three months. I no longer get monthly Xgeva shots; since my bone met showed no uptake on the last scan, and the sclerotic lesion has completely healed, she switched me to a Prolia shot every six months (same drug, lower dose). I do still get blood work done monthly, on Day 15 of my Ibrance cycle (just a personal preference of my onc), but it's now just the genetic research part, not the usual WBC, RBC, platelets, etc part. That's now done every three months, at my MO visit.
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Ciaci: Thanks for the reply. Hope you had a fun time at the wedding and with your friends. It's always nice to have something fun to look forward to. Right now we don't have any plans that would interfere with my oncology visits but I will certainly keep your suggestions in mind.
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Candy,
When I applied for SSDI they told me a stage 4 dx was an automatic approval of benefits.
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Neogirl-
The more I post about this, the more confused I get. As I last posted, the Social Security office told me if I can hold down a job I don't qualify. Even with MBC. They told me I would have to be without work for 12 months and have proof of inability to hold down a job. I cannot afford to not have a paycheck and health insurance for 12 months. And if I quit my job where is my "proof" that I cannot work. My MO will not vouch that I cannot work if I was working and I decided to quit. Bless you if your situation allowed you to receive benefits, but I don't think my situation will.
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Candy, I was going to suggest a note from your MO that you can't work, but I have just read your response. As soon as I got a note, I qualified for SSDI so I don't understand the year wait thing. I do not know what Illinois has, but CA has a great disability system. I qualified for that after only one week off work, at 60% of pay, so I would check the state disability plan if I were you. It is not full pay, but helps. But of course I also had a Drs note.
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Jaylea - No I don't fast. The elderly, sick or pregnant, traveler don't have to fast. If you get healthy again you can make up the fast but in my case Stage IV I won't. I need all the nutrition I can get during the day. I'm always anemic. My blood counts are usually low after the 21 day cycle and I spend the 7 days trying to eat greens and vitamins, etc. to get back to some semblance of normal and then repeat.
Candy 678 when I contacted social security I told them that I stopped working and that I was diagnosed with Stage IV. It was literally a day or two after I stopped working. I had to wait 6 months before my benefits started. They contacted the doctor for verification. I did have a lean 7 months because it was 6 months and then wait a month before SSDI pays you. I hope this is helpful. As far as insurance I don't know what you'd be eligible for without an income. Would phizer pay or American Cancer Soc.?
Have a good day everyone
Tanya
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Candy; I know Canada is not the US so this is just my experience. While I was working and taking herceptin treatments following the surgery, AC Taxol, and radiation treatments I had a TIA and an MRI showed I had also had a lacunar stroke at some point. Working for a bank they did not want me anywhere near clients advising them on their investments so the human resource department worked very hard with the company insurer to provide me with long term disability. By the way I had no long term effects from it. Once the government started contributing their portion I was welcomed with open arms and received it until I turned 65. I am only suggesting that it really depends on the nature of your work in some cases. I have a friend in much the same position with kidney issues. She will have been on long term benefits for about 15 years. As a single parent I do know the stress of being the principal bread earner and I wish you all the best in figuring out your situation.
Cathy
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Congratulations, Piggy99. That's wonderful news.
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Candy, the women here have already given you terrific advice. I don't know if what I can add will be helpful. But anyway (there's a story here I won't go into,) I reduced my hours from 2/3 time to 1/3 time following my diagnosis. For the first few weeks, I was initially unsure whether I'd be able to handle even that. But here I am 19 months later it's ended up being totally doable. I could definitely handle more. We have two kids, and could really use the money, and there are times I'm tempted to feel regret. But as many have said, I'm just SO grateful to be doing so well, I keep focusing on that. FYI my appointments, except for scans every four or five months, and once or twice when my counts have been low and I've needed to go back for a re-test, are on a very regular schedule -- every 28 days. I'm lucky becasue my job gives me a ton of flexibilty so it's seldom been a problem. Perhaps my DH's experience offers some ideas? He has actually come with me for every visit since my diagnosis. He schedules half personal or vacation days in advance and has found it managable to be with me. Can you do that at your company? Schedule regular half-days off?
Chico, I've read here and elsewhere that fulvestrant can be a very effective second line. I read one blog post where a woman is 3 years out on that as her second line (she also is bone only). There are many other promising treatments now in trial. One is to add a different CDK4/6 inhibitor to the fulvestrant. Last summer there as a false alarm that I'd had a progression and I was lined up to join that trial. And there are other inhibitors targeting other suspected metastasis pathways also now in trail. Don't lose hope!
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Peculiar Girl, are you doing ok?
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Hi Penny-78, nice to meet you and thank you for your response. I must say that Fulvestrant is what I currently have in my sites however ONC’s are suggesting E&E (A&A) which I would rather leave for later. Because I found L/I easy I hoped to stay with it for a bit longer however if there is progression it would be nice to keep with the “easier” drugs for a bit in the hope of something more exiting being announced or at least to leave the heavy guns for a battle further down the line. A number of people have suggested Tamoxifen but my Onc said that as I was on it for 5 years from original BC Dx in 2004 that it probably won’t work.
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Candy, I just read your later post where you explained more or your situation. Sorry I realize that my response above was probably not helpful. :-
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Chico, nice to meet you too. Sorry what does E&E stand for? Also are you PR+ or PR-
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