Ibrance (Palbociclib)
Comments
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Candy,
I think a second opinion is definitely in order. Personally I would just keep taking the Ibrance and ignore her order. You might want to consider using having a televisit with an MO from a NCCN center. You could use this visit to also discuss your issues with not being treated for your rheumatoid arthritis, etc. My oncologist, Dr. Lisa Flaum, at Northwestern is very good. She has many patients on Ibrance and is intelligent, caring and respectful. I know you have someone is St. Louis but wanted to offer Dr. Flaum as another possible resource. Let me know if you want her office number.
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Appt with MO in the office for next week, but cancelation for tomorrow so I jumped on that. I am writing out questions. Going to have medical journal articles printed out that discusses filgrastim and CDK use, and have clinical trial info about the 5days on/2 days off schedule. I am going to be factual. Deep breath before going in. I need to know where I stand going forward with this MO. I thought we did ok in the past, but something seems to have shifted these last few weeks. Gives orders and not willing to talk to me about reasons.
Do any of you have a nurse navigator in your MO offices? We do have that. Not anything else---Social Services, Palliative Care, Nutrition, etc.
I asked navigator if she could be a mediator of sorts to help facilitate the conversation. She said No. She said she would have to side with the doc and go with her recommendations as she is the physician.
Does this sound right?
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Chicagoan- I am thinking not only a second opinion but a change in MO altogether. I will see how it goes tomorrow. But I have to think of my future. Yes, I am an established patient already in St. Louis, but it is definitely going to be an inconvenience traveling 4 hours (2 hours one way) every whipstitch--- labs, injections, etc. Much more convenient this way being in the same small town. I will let you know if I need your MO's number. And, Yes, I am ignoring the order to stop the Ibrance---I will take it tomorrow morning with breakfast as usual. I have the meds in my cabinet. I will take them irregardless of her order to stop.
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Candy,
You might want to reach out to Goldie (who I think may be camping at this moment) -- from reading her posts, I've pieced together that she sees an oncologist who is quite a drive away, but in the interim has her labs and her shots locally. I don't know exactly how she works that out, and it could be different where she lives, but it sounds like it could be done.
If you are established in St. Louis, that would be the easiest for you since they already have your records. But I recently had a second opinion with another oncologist at Northwestern -- Dr. Massimo Christofanilli -- and they were able to pull down my medical records from my patient portal through some kind of a thing called Care Everywhere, or something like that. I didn't even have to send them. I don't know if you have to be on a certain "brand" of patient portal or what, but it was very easy.
I hope the appointment goes well. You are correct about the nadir and your numbers -- so I'm not really surprised that they were down when your blood was taken. This whole thing is screwy.
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I have MO labs drawn at PCP. Keeps everyone happy. Vampires are better there too.
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Bev and spookie must have been reading my mind. You could do blood and shots at PCP and do the drive once a month. You will have to accept that you are smarter or at least better informed than your current MO. Some doctors don't like to be questioned. For some reason, your posts always make me think the male nurse is a problem. Just a gut feeling. First, you need to calm down and, yes, I would ignore her orders.
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Well, my blood pressure is up reading about candy’s MO and nurse. The good thing is that I see your strength coming out, candy. You are looking out for yourself! Really, weigh travel to St. Louis against the worry, annoyance, and general crazy-making with your local MO. How important is “convenience” weighed against feeling you are in good hands with a possibly a better outcome, and the fact that the St. Louis MO may be able to connect you with resources in supportive care, palliative care, nutrition, etc. that you have no access to now? I think you might be able to work with your PCP to get some labs etc. done locally, and everyone is using teleheath platforms more these days.
It bothers me so much how that nurse severely limits your access to your MO, and your MO is fine with that. You have a terminal illness but you are not allowed to talk to the doctor? Really?
Maybe what has changed is that they are threatened by someone who knows a thing or two and is now asking questions. Consider not signing a general release of records that includes clinic notes to be sent to St. Louis. The current nurse or MO may have put something about how “troublesome” you are in their notes. You could release labs and scans, but get the most recent clinic notes for yourself, to preview then hand-carry or send.
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BlueGirlRedState: thanks for the reply. I will try to remember my question for my next MO app
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Candy, another vote for local blood draws and 1 time a month onc visit - I live on an island and ferry to Seattle for appts. I often have my blood work in my local community (my onc sends the order in). Much easier than me traveling into the city for every blood test. It's not that far but driving on and off and to the cancer center it's an hour total plus the wait time for the boat. Covid has restricted the ferries to running 1/2 as often which means I am often an hour early for appts so it does take me over 2 hours to get there and sometimes the same on the way back.
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Yet again I have hijacked this Thread with my saga. But, yet again, you all have come to my aid.
I am going to try to stay calm in the appt tomorrow. I have my questions written out. I have my resources printed out to show the doc to back up my points.
I am going to let her start the conversation and listen to the reasoning she gives for what she is doing.
But then I am going to calmly (I hope) tell my concerns and my questions.
I hope we can resolve our issues and get on better footing with our relationship for going forward. But if we cannot, then I need to move forward with changing docs. Maybe I can schedule labs locally. But Port Flush and injections would be done with new MO I guess-- travel. And of course scans with new MO.
Jaycee- Maybe male nurse is kind of a problem. Not real friendly and doesn't seem to want to go out of his way to do anything. Just follow docs orders and not do any excess work.
Shetland- I always think that I am "stable" and so many other patients are really sick and need the MO's time more than I do. I am doing good for now. So give the time to the ones that need it. Good thinking about the clinical notes. Yes, I am sure, I am labeled as "troublesome" or "non-compliant" (refused shot #2 of Zarxio). Don't want that info in the new MO's hands.
I will post an update tomorrow.
Thank you all.
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Has anyone heard from RadagastRabbit? She had called her MO the other day because her pharmacy had denied her claim for Ibance and she was fearful that it was bc of progression. I am worried about her and hope that she is doing okay.
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Hello Candy. I will be thinking of you today as you meet with your MO regarding Ibrance dosing.
There are two things that I have noticed about your posts.
1. You are under tremendous stress
2. There is no trust between you and your oncology team.
You cannot move forward with your treatment plan and give yourself some rest and peace.
This is about your precious life. If your appointment is disappointing, please leave that practice. It is not a good fit for you and you deserve a good working relationship with your MO. You have stage IV cancer..your time is valuable.
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Thank you Sandi. I too feel the stress and lack of trust. I was thinking this morning.... I always want to not burn bridges. When I "retired" from my job due to the cancer, I left on good terms. I worked there 26 years and wanted a good ending in case I ever wanted to come back....hahaha, not going back with Stage 4, who am I kidding. Then I was doing a volunteer position in my church before COVID. Now I am not going to do that due to COVID. So I typed a letter to the Church Board stepping down from the position. Yet again, not burning bridge in case I want to go back to it later.
So this decision is a hard one. Do I leave my local MO and travel not knowing how sick I will get in the future. Will I be able to handle the travel later on? Will I burn the local bridge and cannot come back when I get sicker? I am alone in this "journey". So I will have to feel well enough to drive the trip myself--- no one to drive or go with me even. So the choices I make now will effect my future as I get worse with the cancer.
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Hi Candy. I didn't realize you didn't have other oncology practices nearby.
I remember another BCO member, Grannax2, who had to "fire" an oncologist and also lives alone. She ended up with a good MO and she advocates for herself, esp regarding targeted liver txs, such as Y90. But maybe she didn't have to travel far to find a new MO.
Whatever you decide, I feel you will find peace as you have spoken for yourself and made your appt about YOU.
Good for you.
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Candy678, I am in a very similar position and I did post a week or so ago about the value of second opinions. I do not completely trust my local oncologist and so once or twice a year my DH and I drive five hours one way to a larger cancer institute and it has been worth it for me. Actually now I consider the oncologist at the out of town institute my main oncologist and he will drive my treatment plan. However, it is not practical to drive that far for routine labs, injections, etc. This is working out for me and the local, oncologist does consult with the other oncologist. I also had to have a very direct talk with my local oncologist, it was not easy but had to be done. I think the main problem locally is the oncologist is way too busy and she does not really spend the time she needs to on patients and the result is that important medical information is overlooked. You deserve and need to get the best possible treatment and a big part of that is trust and good communication with your oncologist. But letting you know that it is working for me to have two oncologists. Good luck to you in getting what you need and want.0
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Good morning all, and to Candy: I'm so sorry for the stress you're going through. I understand your concern about switching onc. Mine is at a local hospital but I saw one that I liked 2 hours away but wonder how difficult it would be to see her as I get sicker. I have supportive friends and family who would help me get there but I think about how much I'll need them as time goes on. I go in today to get the results of my scan and see if I stay on Ibrance. It's nerve wracking. I also get my Herceptin/Perjeta for my other Stage 4. I'm on medical leave from my part time work too due to Covid, not sure what will become of my job. So sorry you feel alone on your journey. Isn't it good to have this group here? I'm off to my appt now. Thinking of you.
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Hi all, semi update but not really. I've been running around like a chicken with my head cutoff. So I've left 3 phone messages for my MO and emailed her on the patient portal with no reply after calling and receiving an initial reply from her nurse who took down information. After going Thursday afternoon, Friday, all damn weekend and no call monday morning I left another message for my MO on the portal and then I called Optumrx formerly BriovaRX to ask them myself about the letter and what was reported to make them send me that letter. Here is what I found out.
Optum told me that when reporting my status recently with them, my MO had answered "yes" to the question " shown evidence of progression of disease while on Ibrance". So I messaged my MO after this Revelation. Was my MO waiting to tell me I progressed until my July 8th appt? Because absolutely no one has called to placate me and say "oh no that was a mistake we are fixing it" " you haven't progressed". I gotta say it's a pretty shitty (pardon my French way to find out about progression).
Regarding the Ibrance, the prescription was bumped to my the provider I use for my regular prescriptions, walmart. They are saying I can have Ibrance but insurance isn't going to pay for it and i would need to pay full out of pocket cost for it. No way can I or really anyone ever do that.
Im overall frustrated and feel the silence is to protect themselves until my in person visit. I don't have the means to switch MOs and I really really like my MO, I've never encountered this problem before with her or the group practice in general. It's like ever since Covid hit I can't get a hold of anyone and it's hard to get prescription refills or even a courtesy call now so I don't have to wait 2 weeks to find out what the hell is going on. In the meantime I do have cycle 8 and am taking it, i had called the prescription in early before cycle 7 was over. What the heck do I have to lose taking what I have. I'd like to march into my oncologists office and demand to know what's going on. But my cancer center doesn't allow people to just walk in, you must have an appt, must wait in your car when you get there, call them to let them know your there, wait for them to call you back, get met by a nurse at the entrance and escorted directly to the lab or patient room, no waiting room policy. Total BS. I can't stand this covid crap and I can't stand this cancer crap.
Candy, I really really feel and understand your frustration.
I wish I could better advocate for myself but I'm torn, my mother in law has a biopsy Friday for possible return of breast cancer. Thought it was 1 mass that was found during mammogram, its 2. She only did mastectomy first time around for stage 0 DCIS hormone receptor positive 3 years ago, suspicious masses are in the right breast now. Whole slew of other things on the mind. I'm just plain worn out, with everything but I'm still trying.
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Rabbit, that is just INSANE. I was going to post "where is rabbit" like Bev did soon. It seems like this has been FOREVER since this started. You need to call MO's office and stay on the phone until someone hears you. Yelling is allowed. Crying when desperate. If all else fails, drive over there, sit in the car, do their protocol, and yell at each person you see. You cannot wait another two weeks to find out what is going on. You cannot. Where do you live? Remind me not to move there.
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I can't believe what is happening with Candy and Miss Rabbit. It's terrible when some doctors treat us like numbers instead of taking our feelings into account. I'll be keeping both of you in my thoughts and prayers.
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Home from MO appt and wanted to post as it is still fresh in my mind...
MO was nice, but said that she is very busy and cannot always see me for appt. I am to follow the orders she gives to her nurse to give to me. I cannot always say No to the nurse and that I want to speak to MO myself.
She said I am having toxicity to Ibrance. And that it can have a cumulative effect--now ANC and WBC, later maybe platelets or RBC's. That if I refuse the Neupogen shots she has no other way to build up the WBC's except to hold the Ibrance.
When I talked about the evidence of not using the Neupogen with the CDK's she really didn't address that. Later she said she would note in my chart that I don't want Neupogen in the future.
When I asked about the schedule change--- on 2 weeks/off 2 weeks or the clinical trial from Wash U of on 5 days/ off 2 days--- she said she cannot do anything except the approved schedule of on 3 weeks/ off 1 week. So she is not open to schedule change.
When I asked about moving to another CDK 4/6 inhibitor---Verzenio with more GI issues versus neutropenia--- she said cannot change to another med in same class. Insurance would not approve and it is not the way it is done. If you leave a class of drug you cannot go back or use another med in that class.
She said I need to stop stressing and stop reading Dr. Google. She didn't look at the articles I had in my hand.
Then she said that I should be happy my scans are stable. Acted like I was looking for a change in treatment. "In oncology it is good not to make changes" but then she said sometimes we have to change treatments due to something other than progression---toxicity.
My head is spinning. Stuff I read here is opposite from what she is telling me.
elenas401- Hope your appt goes well. I do not have family or friend support (as far as going with me to appts). They ask about me, but do not offer rides.
Rabbit- Oh my Gosh. Bless you. What can I say? This is reprehensible. Keep calling them.
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Got a call in the middle of the afternoon from the MO office - yet another registrar I haven't met must have been issued my file. At any rate, scans were in and she was calling so that I didn't have to show up in person tomorrow (and likely wait around). Apparently the spots in my spine and pelvis have almost completely resolved- either disappeared or barely showing. They were really very pleased with the response to the I/L, and based on the MRI my only back pain issue is due to the ongoing stenosis (big deal, its been there for four goddamn years. I just have to lift more weights and Ill feel fine, works every time), which leads me to believe the other issues are drug-related.
The only kicker is that while the bones are vastly improved the boob tumor hasn't changed one goddamn bit! WTF! I could swear it had just based on the fact that it is clearly smaller now than it was (fits in bras like it hadn't been, Its now smaller than the other side and mine were made to order 20 years ago.). How does that work?
Now I just have to run in tomorrow to pick up my meds and they are issuing me two months supply, so the only trips I have to make are for injections. My bloods rebounded really well this month as I tested at 1.3 after only 5 days off, and the only thing I have done differently is a) consistently drink a ton of water in the mornings and b) eating a bit better as I love cooking in this kitchen. Although all of that is balanced by c) drinking a bit more alcohol.
Next steps - we need to sort out staying in our current flat beyond August, and then I think I will start shopping around for a private provider I can gel with who I speak to exclusively. NHS is gonna be slammed and I'd really rather get settled in with a new MO and team before that happens.
Its a billion degrees here so I am going to go up to the corner store and get a popsicle to celebrate.
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Rabbit, the way you are being treated is disgraceful! I think the same as Jaycee.
I am usually quite a calm, non -confrontational person , but I was having trouble with a utility company and getting utterly nowhere until I got some person on the phone and told them they had a very stressed, middle aged woman who was on the edge ,who was close to losing it and would probably end up screaming and not be able to stop!! I was and I think they could hear my desperation. The situation was resolved within 24 hours.
I know covid 19 is making it difficult for health workers but you deserve be treated with care and respect and not be left in limbo for 2 more weeks.
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Rabbit, so sorry for your ordeal. You shouldn't have to go through that. Really hope things improve.
I just got done with my appointment. Was hoping for better news. My Ca-15 crept up to 26. The tumor in my right breast and lymph nodes on right are larger. So she's taking me off Letrozole and I'll get Faslodex shots and continue Ibrance for now. Has anyone else had this change in treatment ? Nothing else showed up on the scan except in my breast and lymph nodes. My Herceptin/Perjeta will continue for the separate cancer in my left breast even though the lymph nodes there were slightly bigger. Was very disappointed but not surprised after 3 1/2 years on I/L. Hoping to hear something positive from someone n.v e on Faslodex after Femara. Thanks
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candy, I am sitting here seething on your behalf. Oh my, your oncologist may be a nice person but professionally - he/she stinks! It's your body and mind and you are being reasonable in questioning them about options. It really does seem you need a second opinion, even if its only for one appointment however difficult that may be. Sending a big digital hug.
Sondra, great news for you, well worth celebrating with a 'popsicle' and a little Ibrance dance.
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Candy, I know I don't take Ibrance but have an opinion about the MO. Since you have just been given conflicting messages about taking it and then not taking it, put your foot down that you need to hear from them before monday or at least from another MO with access to your chart. It is too confusing for you and they need to straighten it out, worst comes to worst and you do not hear from them, I would consider taking them on whatever your schedule is. You could also tell the nurse if you decide to do that.
I am sorry you are so stressed out with conflicting information given to you and hugs. I'll go back to the normal thread now.
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Sondra--- Happy Ibrance Dance for you. Celebrate with that popsicle.
elenas-- Good run with I/L. Hope Faslodex/ Ibrance does just as well.
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Candy,
Wow, that sounds like a fun doc's appointment! And she seems very unyielding. As to what she can and cannot do, it sounds like she is very by the book (so is my own MO). (Not for anything, but look at this article -- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58381...
where they talk about giving 125 every other day -- that's one method I hadn't seen before.
Once you settle down you may want to contact the other doc who has your stuff -- and perhaps you can do a call with that person rather than having to drive two hours each way. I don't know if your doc will take too kindly to a "second opinion" on all of this, but it seems that you need to do that at this point? Good luck in sorting all of this out. It's a tough situation, given that she's the only game in your town.
Rabbit,
You, too, have been through the wringer recently with your MO. What the heck is going on? I hope that you can get some answers sooner than two weeks from now. That's just cruel to make you wait. From what you've written, though, it does sound like there's something weird going on with your insurance rather than with your doc. But who can tell? Good luck.
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Spookie, Candy, Rabbit -
it sounds like the system is treating you like S#@*&%. I always want to scream when I'm told that insurance seems to deal the cards on treatment. It gets even more frustrating when DRs won't discuss your questions. I've seldom encountered that, but sometimes wonder if I am getting the care I need, second opinions, and where to go. If I went somewhere else would treatment be any different, and would labs etc get complicated? I did learn recently that asking "a lot" of questions might get the visit coded differently, as an extended visit, and have a slightly higher charge.
Candy and Rabbit - you should request your records, including DR notes etc - is there a reason they changed treatment plans but didn't tell you?
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Hi Candy! I work at a university affiliated cancer center with specialist MOs (as opposed to generalists).
We have a ton of patients who travel to us for a consult and then get the recommended treatment locally. I think it is often a relief for the local onc to have the specialist onc make all the decisions and be a resource for any questions. There is no way that any MO can keep up to date on all cancer treatments and protocols for every cancer type. It would also be unreasonable for the generalist to not implement the specialist's plan.
Get the second opinion at a university affiliated research cancer institute and do so unapologetically.
Leigh
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Love you guys!!!!!!!
BevJen- I printed the article you posted the link to. For future reference. My MO said I need to quit reading "Dr. Google". These are reputable sites we are posting and I am copying, not Dr. Google. As far as second opinion, I didn't post about that (sorry, forgot) but we did discuss that today. My MO said I had a second opinion at the beginning of my diagnosis--when I was with previous MO in that office (he moved and I was switched to her). I said "Yes that was 2 1/2 years ago" (not been back to that MO again). She said she would not be offended with another second opinion from them now. So I placed a call to that office--- St. Louis-- when I got home. Waiting on call back to see what I need to do to make appt since not seen in 2 1/2 years. Just want to review everything and feel out that MO--will she be the type to think outside the box. I have only met her once and I was a newbe--and shellshocked with the diagnosis. Now I can look at her thru a different set of eyes. BevJen- You said your MO is by-the-book too. Any issues with that yet?
BlueGirl- I am worried about just that---traveling and getting another by-the-book MO who doesn't want to think outside the box. Then traveling and same situation.
Leigh- Interesting. I am thinking all or nothing. Stay local OR go elsewhere. But if primary MO can be university MO and still get treatment local, that would be WONDERFUL. I wonder if my MO would be willing to do that. May be kind of awkward if I change from her to university MO and then she still has to do treatments and see me locally.
Edited to add--Call from St. Louis doc as I was typing. Appt July 13.
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