Ibrance (Palbociclib)
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SonyaS, I have Blue Cross Blue Shield and I also had taken Femara previously. They approved it for me. Having said that, I have been through a lengthy appeal with them about some radiation. Good luck with your appeal and PM me if you need any more info. Glad JFL can send you a letter.....wording is very important.
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To all, as of 5:00 p.m. yesterday GEHA was denying my coverage of Ibrance. My physician had a peer to peer review last week. My son called an acquaintance that is head of Southeastern Pfizer Oncological drugs yesterday. He said late yesterday that he was puzzled that I was unable to get approved if I had insurance. He said he had offered to follow my "case" with the specialty pharmacy. I was in the oncologist office this morning at 10 trying to decide on the next course of treatment when a nurse came in and said it had just been approved. So sad that this is our reality: when you have people investigating and calling and looking into your case it expedites things. Anyway, I have been approved for 100 mg as soon as my neutropenia releases its grip. I am thrilled. On the other hand, I have to have a plain x-ray of my right femur tomorrow to make sure that the bone marrow is not involve. If it is, then I need the rod inserted into the femur surgery... It is hard to believe because for the most part I feel great all the time. Nevertheless it is what it is and I do have a wonderful lady oncologist. Carolyn from Music City
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Bad news for me.My scan showed my liver tumors grew while on Ibrance. The largest grew a whole centimeter during the three cycles of the drug. I have an appointment tomorrow morning with my onc, and I expect he will put me on something else. I've never had chemo. It probably will be the beginning of that. I'm worried, of course,
I expected at least stability because my markers didn't go up much. He may even suggest a biopsy. Whole new territory
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Sandilee so sorry to hear that. Hoping that you get some answers when you have your appointment tomorrow and get on a drug that works for you. Since you've never had chemo you have lots of options. Maybe an oral chemo like Xeloda or Afinitor. Praying for you. Please keep us posted.
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Sandilee,
Oh shoot! I am disheartened that this drug wasn't the perfect one for you. Please let us know what your oncologist thoughts are.
*susan*
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sandilee, so very, very sorry!! I hope your next tx works beautifully and controls those lesions. Myra
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I'm sorry sandilee that it failed you. I hope your doctor finds something else that works. There are lots of options for you.
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Sandilee, I'm so sorry to hear that! Sending prayers and hugs, hoping the next one treats you better
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oh that sucks, Sandilee! Chemo is s drag, but it has a really good chance of knocking all of that shit out, and fast. Whatever treatment you decide upon, fingerscrossed for you.
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I am starting this drug regime on Saturday. I want it to work. My last 3 scans have bit been positive. Sending a prayer for yours and looking forward to the tips and tricks.
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car2tenn....what did the x-ray show? Hope you had good results.
Sandilee...whole new territory is right. So sorry you have to go through this. Sending a hug....
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Round 2-halfway and blood levels are still good. In fact, all of the important ones are within [barely] the normal range. Feeling lucky that I can tolerate this protocol. Now, I want to know if it is working.
*susan*
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Congratulations susan! I also have good counts and I'm feeling pretty good this round. Tired but it's manageable, sore feet but I'm getting used to it and some annoying skin issues in unmentionable places. Went to onc office today for lupron shot and a port flush, enjoyed chatting with the nurses and I was able to encourage another MBC patient. Had a good day. Tomorrow is my last day at my current job and I start a new one on Monday. Hoping things continue to go well. A little scary making a job change right now but the new job looks to be less stressful. Wishing everyone a restful night's sleep.
Celeste
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Sandilee,
So very sorry to hear of your progression, it is hard to move on from this drug since it was very tolerable, and it is always stressful to have to make a change, but I am praying that you find a treatment that you tolerate well and that will stop the progression.
I am still wondering if my progression occurred during the month I was on nothing (prior to going on Ibrance, while waiting to get approved) since my tumor markers actually improved while on the Ibrance (but scans after 4 cycles showed progression). I am meeting with another oncologist tomorrow to see what my options are at this point, will let you know if I learn anything helpful. I did chemo back in 2008 at Dana Farber, tolerated it pretty well back then, and the doctors continually monitored and adjusted it to lessen the side effects. Not sure if I want to do it again - just looking for some more quality time and need to find out what my best option is for that.
Prayed for everyone at mass today, you are all in my thoughts and prayers.
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Celeste,
Yes.... that skin stuff. It is happening.... the feet, the hands, the mouth, the nose, the personal areas, I am just learning how to deal. This is all such a moving target, isn't it? What a huge thing to change jobs at this point. I really hope that this new job is perfect for you. It is exciting!
*susan*
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So sorry Sandilee! Hope you find something you can get excited about.
Good to hear everyone else is still doing well. I wanted to pass along that moving to Faslodex and Ibrance is an option and shouldn't have a big issue with insurance approval. That said, I failed Faslodex a couple of years ago. I'm being told my best option is chemo because of the bulk of disease and how fast it is progressing right now. It's not what I wanted to hear, but it is what it is. I'm still waiting for a 2nd opinion, but it's looking like weekly Gemzar.
Good night Ibranceland
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Hope, I'm new to the message boards and I know you started this thread. Thank you. I'm sorry Ibrance didn't work for you, and that you'll be starting chemo again. Hormone therapy and Ibrance can make life almost feel normal but chemo is another story. You certainly know what to expect and I'm sure that feels discouraging to you. Please remember that you've conquered the chemo monster before and you will again. Don't give up hope, Hope. You're obviously a strong and loving woman and I'm sure you have family and friends to support you. Draw on that support and let them be strong for you. This is a horrible disease we have, there is no relief from it and that fact can be a heavy burden. Let others help you carry it right now. I hate what this disease has done and will do to our bodies but what it can do to our mental/emotional wellbeing is even worse. Guard against that by surrounding yourself with those who love you. That includes a bunch of strangers on these message boards.. I'm crying for you and me and all of us with MBC right now because we are so full of hurt but my tears are full of hope for a better tomorrow too. I wish you a good day today. I hope you get moments to smile and even laugh, forgetting about BC for a while.
Celeste
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Hey ladies,
Start cycle 2 today. Bloodwork results were shared with me and my WBC and platelets were low but not low enough to change dosage or put me on hold till they rebounded. Felt pretty good on my 7 day break until the last 2 days. I am a little perturbed with the facility I am going to because it is always something when I go. I never get to see my onc because she is in such high demandand you have to book with her 2 months in advance... That is absolutely absurd to me... I always see a CRNP... Oh and you ladies always talk about tumor markers... Which has never been discussed or ordered. Found out yesterday that a baseline work up was never done..then I was left waiting 45 minutes past my appt time. As far as side effects, fatigue from the Ibrance.. Joint pain in my right hand and knee from the Letrozole, and all the menopausal fun from the Zoladex shot...those symptoms are the worse for me... Night sweats, hot flashes and headaches that never go away! I know this could be a thousand times worse and I try not to complain but this has been a hard adjustment for me... Living life as a what I thought was very healthy 36 year old and loving life to now trying to find the mental strength to do those things. I try to leave the house looking like I have it together, but mentally it is a struggle. Doing my best to stay positive. My support team is soo positive and so convinced that I will "beat" this...and who knows maybe I will, but I don't think they fully understand even when I explain it to them what this diagnosis means. Either that or they are in denial. Praying for peace with all of this. Almost 2 months since my diagnosis and I still struggle daily.
Monika
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Hope, I can't express my sadness and want to give you the tightest hugs I can send! We all know this disease is awful, no matter what the idiotic media says or the glimmers of hope these new drugs give us for just a few additional months of QOL. I wish you all the best with your next tx and please G-d let it kick cancers butt.
Monika, you must insist on seeing a doc and make sure all the correct tests are being completed. We are our only advocates. No one else can demand what you can. No one else but you can demand these things be done. It is wonderful you have a loving support group. Count that as one of your biggest blessings. Two months into dx is nothing. I am just one year in, and I am finding it harder to accept. MO wants me to start anti-depressants. Starting to think it is a good idea, I can't live crying all the time. Tried really hard putting on a happy face, not working anymore.
Hugs to all. Myra
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Hope I know that this isn't what you wanted to hear. Just want to give you a big cyber hug and let you know that we are all thinking of you and hope that Gemzar kicks cancer's butt. In the scheme of chemo drugs, Gemzar is probably one of the easier ones to tolerate. I did not have success on Gemzar but another patient of my onc's had regression and was stable for over a year with minimal side effects. And the good news with Gemzar is that you don't lose your hair and no neuropathy as with many other drugs. Constipation was the main side effect that I had and you can deal with that easier than other side effects.
What is happening with the Androgen receptor testing? Is that an option at this point or something for later? Did you get the results of all of your testing? Also do you have the second opinion scheduled?
Praying for all of us. Yes, I agree with Myra. The anxiety of this disease is awful. I feel like I live from test to test.
Have a peaceful and pain free day everyone?
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Thanks for the well wishes, it does mean a lot to me. I'm still pursuing AR testing, but being told going that avenue right now is not advised because I need something faster acting. I will probably need a new biopsy for the AR testing. I want that anyway because I'd also like to have chemo sensitivity and gene testing done. hoping to know more on that soon. Soon, hopefully
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Mdilllard04 - Monika, I feel for you with your issues with your medical team and care - I won't share my long sad story in that regard, but want to say that it took me 3 changes of oncologists to find not only excellent care but oncologists that care about me, spend time with me, answer my questions, laugh and cry with me. And it makes all the difference to maintaining hope and keeping cancer life in perspective. For many reasons you may want to try to resolve your issues with your present team, but if not possible, hopefully you will get 2nd, 3rd or more opinions until you find providers who will treat you well. You are in an area of the country where I assume you have many choices, at least I hope so. So good that you have strong family support - I think it is hard for anyone not going through this to fully understand the impact it has on us - I don't think I did - sometimes I wish I knew what I know now when my father was going through this - I could have been so much more support for him.
I have found the "struggle" waxes and wanes, but medical care you trust is an important part of the journey, Blessings and hugs to you. Susie
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Hope: I'm so sorry that Ibrance have failed you. I'm hoping that the next treatment will give you many years.I've had cancer since 2001 and stage 4 since 2013. There's hope for us with all the drugs that's constantly coming down the pipeline. We just have to keep trying them until we find the ones that gives us more time . Just hang in there and stand on your name (Hope)
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Thank you Macal! I'm trying to remember how excited I got when I heard Ibrance had just been approved by the FDA. I remember all the promise it held for me and all that bundled up hope propelled me through the spring and allowed me to live life to the fullest. I'm looking for that again!
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Hope...I pray that you find something that works!! I am very thankful you started this thread because I one have learned so much and two have no one walking around in my present life who is fighting the fight that we are battling. You ladies are truly the only people I have that really "get it." Be strong Hope!!! Praying for and with you!!!
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So my onc is starting me on Xeloda next week. He gave me a choice between this oral or an IV chemo, so I hope I made the right decision. The side effects sound pretty yucky.
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Sandilee good luck with Xeloda. I was on Xeloda for almost a year. I did not find the side effects terrible at all. I had some GI issues in the beginning but they got better after the first month or so. Also no hair loss and no neuropathy. You have to watch for the hand/food syndrome, but I didn't find it too terrible. Just remember to use cream all the time on your hands and feet. My oncs office had given me the cream. I can't recall that name of it, but I'm sure they would know.
Sending you positive energy for a long run with Xeloda. Please let us know how you are doing.0 -
Sending everyone {{{{hugs}}}} today.
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Hope and Sandilee, wishing you great results with the chemos and better than expected with the side effects, too (and Sandilee, I would have picked the oral, too, if for no other reason than to avoid precious hours with infusions).
Monika, I agree with the others above, your care sounds a little haphazard, do the nurses and onc communicate well? I understand (I think we all do) how hard it is to get used to news like this. I know I was so afraid and practically dazed. There are still ups and downs, but it does get a lot easier in time. Be genlte with yourself.
I have a little good news for the evening--after just over 2 weeks off, my neutrophils are back over 1000 (just barely, but it counts) so I cracked open the bottle of 75mgs and I'm back on Ibrane (woot!).
Have a great evening, everyone, and here's to all of us having great weekends!
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The vivid dreams are real ! Mine had celebrities in it and became incorporated with my real life , real time !
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