Ibrance (Palbociclib)
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Grannax...keep us posted!!!
A [long] recap:
On November 26th, I was admitted to the hospital with hypercalcemia and acute renal insufficiency. Onc told me that I had been at risk of organ failure as a result of that situation. 5 days of treatment got that under control, and the only explanation so far for the apparently sudden elevated calcium is the breast cancer. Parathyroid eliminated as possible cause. It is possible, per urologist, that an undetected kidney stone caused the renal issue, but no way to be sure. Stent inserted during hospital stay and to be removed on the 26th, along with an exploration of the general renal system at the same time.
My onc called yesterday with results from my bone biopsy of last week. He has again pronounced my situation baffling. My bone biopsy is essentially identical to the one done two years ago when MBC was discovered by a CT for something else. I have BC in the bone marrow but normal blood markers in the marrow, and PET scans do not show active disease anywhere. However, an MRI of my [painful] left hip, also done last week, showed considerably more "active disease" in both hips. Radiation may be indicated for pain in hip; to be determined later by visit with radiologist.
My bones throughout look "fuzzy" according to the radiologists. No protein issues in blood. Bone biopsy results have been sent off by onc for Foundation One testing.
Onc says that Ibrance/Faslodex may or may not have been working at all over the past 23 months. Can't tell. My disease is not "measurable" and thus can't be properly quantified. We will change to another regimen simply because there has been progression within the bone (I assume at the hips) but so far, only in the bone on I/F. He is recommending a change to Aromasin (Exemestane) + Afinitor but is not confident that that combo will make a difference, either.
So far, only the hypercalcemia alerted us to an ongoing issue, as last two PETs 7/18 and 10/18 showed NEAD situation. He believes that my cancer has been quietly growing for 20+ years (original treatment in 1991) and has only recently become evident. He said that this regimen change is not an "emergency" since he can't be sure what has worked or not worked (I've been frantic to be on a treatment, as I'm on nothing right now).
We discussed a second opinion and where. He believes that any onc will read the test results the same (though may suggest own set of tests for accuracy) but may suggest a different approach to future treatment, to which he said he was entirely open. No clear path here but a change indicated as current I/F appears not to be working.
Does anyone have a suggestion as to best second opinion options? Ciaci, how did you know whom to call at Memorial Sloan-Kettering?
I'm to start new treatment right away (my own urging) but am wondering if I should hold off for second opinion? Damned if I do, and damned if I don't, sort of. MSK, MD Anderson, Duke, and Johns-Hopkins touched on, and Mayo Clinic also discussed, not as breast cancer center but as excellent at analyzing and suggesting future treatment regimen.
I had thought yesterday while awaiting his call that the news from the bone biopsy would be devastating and the time remaining short. But, I seem to be in some sort of unknown limbo. I'm a planner, and this is hard. I apologize for the whining and the long description. If anyone has any thoughts, I'd be grateful to hear them.
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Dear Lynn, Being new to these boards and cancer I have no advice to give you medically. Having read the F/I thread through so many times, I do know that you are the sweetest more gentle soul and you're always reaching out to help others with advice/encouragement. I also know that GOD doesn't let things happen to his children for no reason. Please believe that in some way, your situation is part of His plan for our good/and for others. Our Lord will walk through this with you. I will pray daily that GOD will send wisdom for you and your Drs. regarding treatment. You live very far away from me but, your spirit has touched my heart. One day at a time dear Lynn try to let the Spirit of the Christmas Season lift your up. Sending Hugs and Healing Prayers for you. Sue
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Joyner-
I don't know what advise to give you. I too am a planner and I know this is scary not to have a plan. It is also scary that we cannot rely on the scans to tell us how we are doing with the treatments. There seems to be so many unknowns even though we live in an era where we understand cancer better than ever before. And the scans can contradict each other. Maddening!!!! We have all heard that MD Anderson and Mayo are exceptional. If you can get to either of those, I think you should. You are in my prayers and keep us posted. Any one of us ( myself included ) could find ourselves in a situation like yours. I HATE CANCER !!!!!
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Suzy....I will start month 9 of Ibrance/Letrozole next week. My specialty pharmacist has taken care of applying for grants. I haven't had to do anything.
Lynn...What a dilemma for you. I've never had a second opinion. My oncologist assured me from the get-go that if he was unsure of anything, he confers with other oncologists/radiologists etc. That was comfort enough for me. You are in my prayers...sending hugs!
Hope
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Grannax you är a real warrior, can only admire.
Three weeks ago I wrote since they found mets in the brain. Today I got the gamma knife. Three weeks ago they said it was 6 mets but today the experts said it only was 4. The bad news is that the bigger hade grown fast. No matter what the neurolog was satisfied. Lets hope todays knife has fine what is supposed to. Since I got spasm I`ve been to afraid to go outside. I`m quite sure that Ibrance Falsodex is working so hopefully my feeling is correct.
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Lynn- You are a medical mystery!! Wow, your original cancer was so long ago, I like the idea that it is very very slow growing!
I would not be in a hurry to change drug regimens. Progression from a drug that is working requires new mutation, and the more progressions we get over time, the more mutated and aggressive the cancer becomes. This cancer is such a mental game, where "keep calm and carry on" especially while making progression decisions may be important.
I don't understand how your onc can be unsure if the I/F you have been taking for the past nearly two years ever even worked or not?! Did you not have any scans throughout that time that indicated an improvement in the bone mets?! I assume you have also been taking XGEVA, and perhaps he thinks improvement you had thus far might just have been from that? Has the hypercalcemia been resolved now, and if so, what fixed it?If it were me, I would not change to AA from I/F without a much clearer reason of why that is going to be any better. And apparently even your doc is not urging you to do it?! It would seem that a second opinion (and maybe third) is critical before starting anything new. That the MRI is more sensitive is not surprising, but it is not indicating how fast the cancer is changing since you weren't doing them before. If ever there was a reason to get a second (and maybe third) opinion, it would be you at this time! You've got lots of great options, but don't presume to second guess what they will conclude- they may completely surprise you!!
PS Also, do you just have some hot spots and other places remain stable? If so, I would keep with the I/F until the second consult, because it is keeping the bulk of the cancer stable.. On my last scan the report concluded "slight progression" referring to two spots that are just gradually getting hotter with each scan. Not enough to change yet, because its keeping the rest in check. I'm going to do some SBRT radiation on those spots and hope that it stimulates my immune system and lets me stay on I/F awhile longer..
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Suzy, thank you for saying that. Maybe if your MO has a sample for January, he will have more for subsequent months. My extra bottles will go to my MO's stash when/if I go off of I/F. My MO had mentioned AA as my next tx. She also told me she is starting all her new MBC patients on Verzenio. I said, "but what about the side effects?" That went right over her head. They do not consider se's unless we get after them and even then, it's difficult. I'm not taking anything that comes with a free bottle of Imodium. Maybe the poor funding of the foundations will ease off soon. A few drug companies have been caught trying to tell the foundations what to do with their donations (most of the money the foundations have come from the drug companies), like only use them for that drug company's drugs. The FDA is putting an end to that.
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Joyner we find ourselves in the same boat. Not a good boat, in fact I don't like this boat at all. I do have a clearer direction to go in, though. When I saw the progression in my lung and chest, I knew for sure IF had stopped working. My only doubt is AA. I'm still praying that my BX, not even schedule yet, grrr, will show I'm now HER2+. And if results come in I might not even have to go on AA. Hercepton would be my TX. I would be happy about that scenario.
I am an MD A fan, myself and my husband got good care there on three different occasions. But the best MO I ever had is now at Northwestern in Chicago. Massimo Cristofanilli, MD. I wish you could see him. I don't even remember the name of the one I saw two years ago at DX of MBC and I have not been back. Until now I have been on what they told me to be on IF. I probably should go back at this point especially since I have so much doubt about AA. But, it was too much trouble for my family. They would do it, but I don't want them to have to.
So here we go, Joyner, starting the same TX at the same time. Let us know what you find out if you go for a second opinion. You definitely need someone who loves to solve mysteries.💞
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Lynn, I was going to say almost everything Cure-ious said. I'm not as smart as her but I did think those things like, why the knee-jerk reaction? It's seems to be part of the MBC culture to overreact. And not just by patients, but by doctors, also. My mets are slow growing, too. I had a plural effusion discovered by accident, like your bone mets, that just disappeared by itself before any tx started. That led to the discovery of my lung mets. Related? Who knows? What if the mets had never been discovered? Without the stress and frustration of the MBC diagnosis, how many years might that have added to our lives? I think you should take a breath, calm down and enjoy the holidays with your beautiful family. Second opinion? Third? That is not stress I want to add to my life, especially when these other opinions may not change anything.
If you do end up going on something else, you will be required to post here often or I will hunt you down. You know I will.
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Grannax....I am at Levine Cancer Center in Charlotte....my Onc is Dr Masterson just food for thought for a second opinion0
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Joyner, when my primary doctor told me to go to Sloan-Kettering, I went to their "Find a Doctor" page. I narrowed it down because I wanted New Jersey (didn't want to deal with schlepping into the city for appointments), and Basking Ridge NJ was the only one open at the time (Monmouth actually opened while I was in the process, and that's still where I go for scans and treatment, though I see my doc at Basking Ridge still). Of course I specified Breast Cancer for type, and it gave me about a dozen names. From there, I knew I wanted a woman, and a medical oncologist instead of radiation or surgical (since I didn't know where treatment would take me). Of the doctors that were left, only one worked exclusively with breast cancer patients and did research, and she happened to be Italian - always a plus, LOL! That's how I got lucky enough to be a patient of Dr. Gabriella D'Andrea-Carlino !!
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Jaycee, I find it interesting that your MO is starting new patients on Verzenio. At my last appointment, in November, my husband asked my MO about that (if she's putting patients on it instead of Ibrance), and she said she won't use it unless a patient can't tolerate the Ibrance. She said she knows Ibrance works, so wouldn't think of starting someone on something else that she's just not as sure of yet.
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Lynn, I'm going to hop on board the "don't get too anxious to change things" boat with Cure-ious and Jaycee (and perhaps, others). The cancer you have has been a strange bird all along and there's no reason to think one doctor can all of a sudden figure it out. Visiting MD Anderson seems like a great idea since, if I remember correctly, they were the place where Ibrance began. They should have the most history with how it behaves. The other thing that seems wise in light of your odd symptoms is a visit to Mayo Clinic where they specialize in figuring out things others can't. I don't know how their system of referrals works but I do know that MDA promises to get back to you within a couple of days to form a plan.
I hope you won't second guess the choices you've made so far. You and your doctors have done the best you can with the information available at the moment. It's all any of us can do.
A little Ibrance story for everyone: A nurse had me talk with her patient who was diagnosed with MBC a month after I started the Ibrance (Fall, 2016). The woman, of course, was anxious and wanted to talk with someone on the drug. I heard from her recently and she said her disease was stable for 18 months and then started to progress. Her insurance company denied coverage for the treatment she was prescribed next. (We all know she could have appealed and probably been given the medicine.) She took the denial as a sign that she didn't need to take the treatment. Here's the cool part.....(drum roll)....She's been off everything since early May, got a scan last week and has No Evidence of Disease.
Nobody has this figured out. We step out on faith and choose the best of the options available to us. Maybe the next "something" is best. Maybe sometimes nothing is best, even if it's just for a little while. I pray we all find peace with the choices.
Love from PatGMc
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just dropping in to give my love to everyone and hopefully bring a smile or giggle with this funny pic.
Big giant hugs to Grannax and Joyner. We are all here with you, loving and supporting you through this process. I love the idea of making decisions with a calm mind. Sometimes easier said than done but something aspire to, right? I hope you are able to figure out what is next and feel confidence about your decision. It sounds like there is a need for a second (and/or third opinion) due to the lack of confidence that you currently have about what your MO is recommending.
((((((((((((((((((((HUGS!!!))))))))))))))))))))))
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Hi all, I have a question about red blood cells. So, mine are always low like I am sure everyone here. I have been reading that the low red blood cells can also affect mood including irritability and depression. I find I have less motivation and energy to maintain relationships. I feel like I don't have much to give on many days. This in turn is causing more isolation. Has anyone else experienced this?
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hi singlemom,
Receiving this diagnosis has caused me to become a different person in many ways. I spend a LOT more time alone, I don’t go out as much as I used to (which was a LOT), and I am much quieter and calmer...sometimes I feel like I am more isolated and I just don’t have the energy I used to. I’m 41 and sometimes feel like I have no life other than work and napping!
It sounds like you are a single mom, which is a lot unto itself. I take care of people at work all day and also am taking care of my aging parents...I don’t have kids and I am single. I don’t really feel like I have much room left except for my closest loved ones, after all is said and done.
I don’t know if it is low RBCs, hormonal therapies, being in medical menopause, or simply the mental toll of having this diagnosis, but I feel ya!!! You are not alone in experiencing these feelings.
I do see a psychologist who specializes in people diagnosed with cancer, regularly. This helps me soooo much. I also started taking antidepressants about 1.5 months ago (lexapro) and it’s also helping me a LOT.
Do you have someone to talk to like a therapist to help? I’m a huge fan, especially when the right therapist is found!!
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Girls, thanks for your very kind and insightful replies. I am in the process of sending umpteen reports to Sloan Kettering so that I can be set up for a second opinion there. Interesting process.
Pat, my onc also told me that the Mayo Clinic, though not a breast center per se, is known for superb analysis and for producing a treatment plan quickly based on documentation provided. That's another very good option. Thank you for that and for your calming guidance.
Right now, I am sitting here treatment-less, firing off documents. Janet, I need you here pointing fingers and giving orders! All of the words and guidance from multiple folks give me comfort that I can be off-treatment for a bit with reasonable safety, and my own onc described this as "not an emergency". I'm very proactive, as you no doubt know, so it's hard for me to keep my fingers off the switch.
Philly, your response to singlemom seemed right on track. I'm not there where you girls are, but a form of very understandable depression was my first thought.
Hugs to all....
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Cure-ious, just realized that I hadn't answered your questions. The rest of you can safely ignore this response!
Yes, I have had multiple scans (CTs, MRIs, and PET) over the past two years (MBC diagnosed Jan 2017), and they generally indicated no visible progression and likely healing (virtually all of my lesions have been sclerotic in the past and are throughout the skeletal system...thus hard to read and quantify). 2 PET scans, April and Oct of 2018, showed "no evidence of active disease". A December 13th MRI of my hips (as result of hip pain) showed the following:
"Bone marrow: There are diffuse osseous metastases present with areas of sparing in the bilateral femoral heads and greater trochanters. In comparison to the prior CTs (which and when???), the extent of disease is much greater and only a portion of the metastases are sclerotic. A well-circumscribed lytic lesion is again seen in the right femoral neck. No definite evidence of pathologic fracture."
Yes, I have been taking Xgeva for two years, first monthly, and onc had recently decided to drop me from every 3-4 mo to every 6 mo. We have just gone back to monthly.
I'm thinking to proceed with second opinion from MSK and perhaps reach out to the Mayo Clinic for their opinion as well.
Thanks, as always, for your kindness and thoroughness in thinking about all of the rest of us while you're grappling with your own issues.
Wow...December 20th...not feeling very Christmasy at the moment!
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Ladies I have a dilemma. My IR says that the two lesions he would try to BX are tiny and in a hard place to get to. He is willing to try. I would go to the hospital just as if I was having a day surgery. Then he would look for the lesions with ultrasound. If he cannot see them I will go home. If he can see them, he wil give me sedation and go in and get a core BX , enough to be sent to genomic testing and to pathology.
He does have openings for next Thursday and Friday. The results for pathology will take a week or two. Meanwhile I'm supposed to start taking AA on December 31.
Should I do it knowing he does not think he can get to them? Part of me says yes DO IT. Part says what's the use of doing it if he doesn't think he can get to it.
Help.💞
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Sounds like a good plan Joyner. How long do you think it will take to get an appointment?💞
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Grannax-If it were me, I would try the biopsy. I don't think you have anything to lose. Worst case, he can't get to them and you just go home.
Joyner-You are in my thoughts-hopefully some of this mystery will be cleared up with second opinions.
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Grannax, I would try for the biopsy, too, I think. But, I'm not an onc. How risky does the onc think it is for you to be off treatment for a bit? We're dancing on the head of the same pin (can't think of anyone I'd rather be dancing with....).
On my appointment, MSK says 2 weeks after they get all of my requested documents. I have sent all but what has to come from the onc, and he's out this week. I have asked that his nurse send a path report (that should be easy) and his medical notes from my last visit (that may be dicey since he's out). Why can't something be just simple and straight-forward??
Hugs to you-
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hi singlemom...I know exactly what you mean....
I attribute all those conditions you so well described to our burnout adrenals.
While stress for most people comes and goes depending on their lifestyles and ability to manage it, we MBCers are under constant stress while having to make life and death decisions —in my case not stop for the past four years, and that's not counting the years of previous stressful emotional and professional situations that I believe suppressed my immune system and allowed the development of abnormal cells in the first place.
Last summer I started using pure licorice to feed my adrenals, and found that they have not interfered with the hormonal medications I was on as well as xeloda, so I get some relief from that and ashwaganda root, an ayurvedic medication. I have found Bcomplex and Vitamin C in large quantities to bealso useful.
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hi singlemom and lovefromphilly..I know exactly what you mean....
I attribute all those conditions you so well described to burnout adrenals.
While stress for most people comes and goes depending on their lifestyles and ability to manage it, we MBCers are under constant stress while having to make life and death decisions —in my case not stop for the past four years, and that's not counting the years of previous stressful emotional and professional situations that I believe suppressed my immune system and allowed the development of abnormal cells in the first place.
Last summer I started using pure licorice to feed my adrenals, and found that they have not interfered with the hormonal medications I was on as well as xeloda, so I get some relief from that and ashwaganda root, an ayurvedic medication. I have found Bcomplex and Vitamin C in large quantities to bealso useful.
Grannax, definitely do the BX...it will correctly guide your next treatment. And if he can't get to it...you'll havenothing to worry about, because surely he won't proceed.
I know how much you can't wait to get on the Afinitor train....
..remember how much LaLady and I loved it?Doctors must be getting a huge resale price from Novartis when they prescribe that useless drug..
..they all are so extremely eager and yet it fails 99% of patients and offers no additional survival time, in their own clinical trials...Oh....one of those many cancer mysteries...it would be hysterically.funny if it wasn't such a serious situation....hopefully you won't have to take it, but if you have to take it, I hope it works well and for a very long time!Demand to take the smallest dose, it might be less damaging. Everolimus fits our genetic profiles and yet my cancer markers quadrupled during those three months....and although we are all different, be careful!
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I'm with Chicagoan, Grannax. The plan sounds sensible. And if the IR feels he doesn't have a good shot, then no sedation.
Singlemom, red blood cells carry oxygen, so when counts are low this contributes to low energy. Further, Ibrance, is whipping your immune system into a frenzy. Add to that the mental cluster that is an MBC diagnosis, and it's a recipe for exhaustion. LovefromPhilly has some great suggestions, and I'll add one more. If you can, try to get a tiny bit of exercise. Even just a walk around the block does wonders for your mood and body.
Joyner, sending prayers your way that paperwork, appointments, and medical team fall into place to lead you to the right course.
Cure-ious, once again you explain things in such an understandable way that I say 'aha'. Progression requires mutation. Yes!
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Thanks girls. Yes after I wrote my post here, I re read it and thought there is no good reason not to try. So I already called the IR and they are working on insurance approval as we speak.
Yes, my motivation is to not have to take Afinitor. I'm appalled that my MO is so stuck on it. But, it has worked for two ladies on the AA thread. Only two. UGH
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Grannax I’m glad that was your decision. Pray those surgical hands and eyes find a way to get that bx. You need to be able to have some bright young medical minds examine what’s going on. Okay zebra?
Joyner I’m reading what’s going on with you and praying for answers and a mystery solved.
This Ibrance thread is full of people living life with some sense of normalcy and then after a few years something (mutates) happens?
Miaix I will try the licorice. I also started using maneuka honey in my tea.
Patmc cureious jaylea philly single mom Chicagoan always love reading everyone’s shares.
Tanya
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Well by the time I read the posts and got ready to respond Grannax had made her decision. I was going to post -- go ahead and try biopsy. If they cannot reach it, at least you tried. So you know there is another vote for the biopsy. Praying for you Grannax.
Joyner- Praying for your upcoming appointments. Keep us posted.
Well I heard from my MO office. The MRI has been approved ( supposed to have been up to a 2 week wait ). I do the MRI of the cervical and thoracic spine tomorrow ( Friday ). 2 hour test!!!! Kind of freaking out thinking of having to lie in that small space for 2 hours. I plan on taking a tramadol pain pill before hand. I cannot take anything too strong because I need to drive myself home. I don't want there to be anything wrong, but hope we get answers on why I have been having sooo much neck and upper back pain. With the weekend and Holiday I figure we won't know anything until middle-end of next week. I will keep you all posted.
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Joyner, I've been thinking of you constantly, and started to write the other day but noticed that Cure-ious and others had said what I would have said, and probably more clearly.
Like you say, bone mets can't be measured -- my own still light up even though I too was pronounced NEAD (almost on the same day as you as I recall) and the radiologists sometimes still panic me after my scans but then conclude it's from fractures (cancer caused and not) and benign "degenerative changes." Nerve wracking ups and down to say the least! I was about to ask how all those scans could have missed something but I see what you just posted about your PET. Two questions now: Which MSK? NYC or one of the branches? And are you in pain?
Josolo please let us know how you are after your latest treatment.
Grannax glad you are getting the biopsy!
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Hi, I do this (posting on discussion boards) so little that I really am awful at it. I need a tutorial! Anyway, I just started Ibrance with exemestane (have tried letrozol in the past and got such horrible muscle/bone/joint pain I just could not tolerate it, so even though exemestane/Aromasin is not the norm to take with Ibrance, it's what my oncologist and I decided to try) anyway, just started the Ibrance 2.5 weeks ago, so I'm in my third week. (I've been metastatice for a little over 4.5 years now, have been on a few different treatments.) . I can't find any information at all that mentions hand and foot syndrome as a side effect of Ibrance, and yet that seems to be exactly what I'm experiencing. I have taken Xeloda in the past (and of course that is a significant, common side effect of that drug) but I've been off of it for over 4 months now. Has anyone else had this experience? Even on the Xeloda, by the time we stopped it (after about 1.5 years on) the hand and foot issue was minor, due to dosage adjustments, but could it be a resurgence of that issue, still from the Xeloda? I was fully prepared to see my WBC's and RBC's and other blood cells possibly take a nosedive, but was not at all thinking of hand and foot syndrome.
Thanks to anyone who has input! Also, should I have started this a whole new thread? Like I said, I'm HORRIBLE at this, don't do much social media besides emails/texts/messaging! Thank you to everyone for your patience!
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